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National Collaborating Centre for Mental Health (UK). Self-Harm: Longer-Term Management. Leicester (UK): British Psychological Society; 2012. (NICE Clinical Guidelines, No. 133.)

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Self-Harm: Longer-Term Management.

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4EXPERIENCE OF CARE

4.1. INTRODUCTION

This chapter provides an overview of the experience of people who self-harm including different age groups such as young people and adults, and special groups such as those with mild learning disabilities, males or those with borderline personality disorder, and their families/carers.

The first section comprises first-hand personal accounts written by people who self-harm and families/carers, which provide an understanding of self-harm, accessing services, having treatment and caring for someone who self-harms. It should be noted that these accounts are not representative of the experiences of all people who self-harm and therefore can only ever be illustrative. For instance, the personal accounts are all written by adults who self-harm and most of them used the method of cutting.

The second section of the chapter includes a review of the qualitative literature which provides a basis for the recommendations, found at the end of the final section.

4.2. PERSONAL ACCOUNTS—PEOPLE WHO SELF-HARM

4.2.1. Introduction

The writers of the personal accounts from people who self-harm were contacted through representatives on the GDG and through various agencies that had access to people who self-harm. The people who were approached to write the accounts were asked to consider a number of questions when composing their narratives. These included:

  • When did you first seek help for self-harm and whom did you contact? (Please describe this first contact.)
  • What helped or did not help you gain access to services? Did a friend or family member help you gain access to these services?
  • Do you think that any life experiences led to the onset of the problem? If so, please describe if you feel able to do so.
  • In what ways has the self-harm affected your everyday life (such as education, employment and making relationships) and the lives of those close to you?
  • What possible treatments were discussed with you?
  • What treatment(s) did you receive? Please describe any drug treatment and/or psychological therapy.
  • Was the treatment(s) helpful? (Please describe what worked for you and what didn't work for you.)
  • How would you describe your relationship with your practitioner(s) (for example, your GP, psychologist or other)
  • Did you use any other approaches to help your self-harm in addition to those provided by NHS services, for example private treatment? If so please describe what was helpful and not helpful.
  • Do you have any language support needs, including needing help with reading or speaking English? If so, did this have an impact on your understanding of the self-harm or on receiving treatment?
  • Did you attend a support group and was this helpful? Did family and friends close to you or people in your community help and support you?
  • How has the nature of the problem changed over time?
  • How do you feel now?
  • If your self-harm has improved, do you use any strategies to help you to stay well? If so, please describe these strategies.

Each author signed a consent form allowing the account to be reproduced in this guideline. Four personal accounts from people who self-harm(ed) were received in total.

4.2.2. Personal account A

I started to harm myself when I was 10 years old. I don't remember what was happening in my life at the time, but I know I always felt alone, like I didn't fit in or belong. On paper, I had the perfect family: a Mum and Dad, and a younger sister on whom I doted. Yet feelings of pain and struggle began to surface from an early age, when I was too young to have the words to describe what I was feeling. These feelings became increasingly pronounced and at 13 my self-destruction escalated. I began to harm myself more and more severely, either cutting or burning myself and with little regard for the long-term consequences of my actions. Despite people around me having some inclination about what was happening to me, no one intervened, and my difficulties continued, shrouded in a secrecy that allowed them to get worse.

As I headed towards adulthood, self-harm was still a part of my life on a daily basis. This got much worse in my twenties, when I no longer lived at home, and where I had the freedom and independence for the self-harm to worsen both in frequency and severity. I had always cut myself, but somehow the superficial cuts of my youth no longer satisfied the growing self-loathing and despair that I felt as an adult. The cuts got deeper, and more frequent; they migrated to other areas of my body that could be well concealed, and when this no longer provided the same level of relief, I began to self-poison. I had turned to a range of substances to poison myself with, ranging from significant and life threatening amounts of paracetamol, to other painkilling medication, iron tablets, and psychiatric medication. On one occasion I used weed killer to poison myself. Both cutting and poisoning myself had escalated to the point where they warranted medical intervention. I ended up sitting in an A&E [accident and emergency] department like so many others, wondering what was going to happen to me, or what people would think, nursing cuts so deep and painful that I would need stitching. The overdosing and self-poisoning required countless hospital admissions to undo the damage to myself. Some of these acts were direct attempts upon my life, and others were in the absence of care over whether I lived or died; I no longer cared. All I wanted was peace inside from the constant struggle and torment.

There were times when I attended A&E voluntarily, but there were other times when I was taken there by ambulance after becoming unwell or after collapse. This aspect of my self-destruction was painful for those who witnessed it. Although I tried to keep my self-harm private, sometimes I was so unwell that other people in my life needed to know.

Some friends watched me do these things to myself, tormented and frightened by what was going to happen to me. These relationships waned. People could no longer invest in an attachment to someone who didn't have the will to live anymore. A couple of friends, in particular, attempted to advocate on my behalf to services, to let them know that I needed help and support. It was so hard for me to ask for help, because I believed that I deserved none, and when people did offer their help I was suspicious of it. It was hard for me that people needed to intervene, and it was even harder because it was only when there was a chorus of voices seeking help that there was any action from services.

I feared statutory services and I didn't want to go to a doctor as I felt so ashamed. Instead, I looked for help in the voluntary sector and attended a support group for women who self-harmed. Here I began to focus solely upon myself as a self-harmer. I was exposed to the harming of others, and this made my harming much worse during this time. In my experience, support groups are unhelpful unless they are well moderated; for me it was an arena in which competitive urges towards self-destruction could rise. Due to this I ended up in A&E countless times for treatment for the cuts and for overdosing.

My GP became aware of my problems, and I was seen by a psychiatrist, and a CPN [community psychiatric nurse]. The self-harm was so severe that I was deemed too high a risk for psychotherapy.

I was prescribed medication (Seroxat) that only worsened my condition, as I entered a world where all I could think about was self-harm. I soon became an inpatient because of the level of risk I posed to myself. Ultimately therapy was offered by an astounding therapist who, with my CPN, recognised that unless some intervention was offered, it was likely that I might end up completing suicide. Self-harm, suicidality and suicide became a messed-up continuum that I found very difficult to pick apart.

The CPN and therapist worked collaboratively to try and keep me safe. They were on hand to support me in managing my distress and learn to accept help and support and begin to articulate my struggles instead of turning them inwards. Their hard work was matched by my own. At first, the self-harm continued to escalate – the more I talked about everything that hurt, the more I ruminated upon self-destruction. But they persisted, and I persisted. The progress I made was in tiny steps, first just increasing my awareness of why I was self-harming. Countless times I had been asked ‘why I was doing this’ but I am not sure I really knew. I just responded to my distress in a physical way, and to begin to do things differently, I had to at first understand the motivation behind the harm.

No one had ever really talked about what my options were for treatment. In fact the opposite: I have a range of really damaging experiences such as being called a ‘time waster’, or being treated by CPNs as someone who was not willing to engage, and written off as an ‘expected suicide’ by the local crisis intervention team. This couldn't be it for me. I was told each time I was in hospital that I ‘had to be’ assessed, and that my level of risk meant that people were going to step in and tell me what to do. I never really had a choice, except to choose to take a gamble on those kind individuals who were, by chance, involved in my life, and to learn to get better.

My relationships with the therapist and my CPN were absolutely crucial to me overcoming the self-harm, as was my relationship with two GPs, who collectively gave me the skills to save my own life. Without their dedication, compassion and commitment I doubt I would be here writing these words for you to read. I was receiving CBT [cognitive behavioural therapy], and soon that and all the support helped me to recognise that the self-harm was only but a symptom of a damaged sense of self and distress that had been rampaging out of control since I was a child.

Over the years I was prescribed a number of other medications, including oxazepam, chlorpromazine, mirtazapine, quetiapine, lorazepam, temazepam and carbamazepine. I needed none of these – what I needed was someone to hear me and help me, and with patience and care, to explore and overcome these difficulties. Medicating a problem like this was only ever going to be a temporary measure, a prop. I ended up taking three or four medications at any one time, and I should never have been medicated to this level – all it did was perpetuate feelings of dissociation and lack of control.

There were many life experiences that contributed to my self-harm and distress and medication was not going to remedy these. Mainly these were related to a sense of autonomy and worth, with a range of invalidating experiences leading me to feel as though I had no right to my emotional experience, and therefore no recourse to expressing or exploring these strains naturally. Everything that I encountered in an emotional way was subsequently subjugated, and an internal process of dismissing my real feelings became second nature. These feelings then popped up somewhere else, where self-harm was used to manage them. Getting better involved re-learning and relating to my emotion, validating my experiences, and developing greater skills at emotional management and regulation.

For a long time I was isolated beyond measure, almost living two lives. I ended up withdrawing from almost all social activity, and gave up my well-paid job because I could no longer sustain the life that I was trying to live. For years I was out of work, with very little else happening in my life except for distress, despair, self-harm and sleeplessness.

Getting better was a long road. When the 2004 NICE self-harm guideline was being developed, I was one of the individuals interviewed and my account of my experiences was used in the guidance. To be able to sit here and write from a different perspective as recovered, as another guideline on self-harm is developed, is an interesting exercise. I now work as a therapist. I know that there was very little access to services when I needed it the most. I was repeatedly met with judgement or contempt from those others involved in my care who never took the time to get to know me, the person behind the harm. So I now run a service, which was established out of direct experience of the lack of services for those who self-harm.

The distress that I experience now I relate to in a more managed way – I understand myself so much more and accept that there are times when I will struggle more than others. I also know that no matter what – there is no going back for me. Self-harm is a thing of my past. I have learnt a new way of being, and I believe faithfully that this can happen for other people if we develop and deliver appropriate and needs-led services that are dedicated to meeting people in their distress and helping them to move through this at their own pace.

4.2.3. Personal account B

Disgust. Shame. The look of pity. Intrigue. Fear. These are views I have experienced, and unfortunately become accustomed to, as a 28-year-old woman with scars covering my arms. I have not self-harmed for just over 3 years now, but the scars are still on my arms and shall remain there for life.

When I first spoke to someone (a teacher) about my self-harm urges, I was only 14 or 15 years old. She was fantastic and offered me the school counsellor's services. As I got older and life circumstances took a hold of me, the self-harm in the form of cutting, gradually grew worse.

At the age of about 21, I started attending A&E to be stitched back together. There were times when, unfortunately, the experience at A&E itself left me feeling worthless. There could be one fantastic triage nurse or doctor but their care would be undermined by another nurse, doctor or receptionist whose care or attitude would be cold or their frustration towards me for causing damage to my own body would show. I think there were times when the fact that I am of South-Asian origin, living in a city with a high Asian population, led to pre-judgements being made of me. Doctors assumed that the reason why I had self-harmed was due to a cultural conflict. They did not wait or ask; if they had done so they would have found it was actually due to growing up in an abusive home, and having a child out of wedlock might have been a factor, although this was by no means the foundation of my problems.

It is difficult to remember exactly how I felt during the periods of cutting as it is like I was a totally different person to who I am now. I do recall being at a loss, angry and frustrated – I was scared. The fear of hurting others, especially my daughter was very real and this led me to justify my cutting; I was not hurting anyone else, thereby it was all OK. During the time I cut, there was no pain; looking back now it shocks me that I did this to myself. After cutting, however, the pain was excruciating: small cuts stung, big cuts really hurt. But practicalities took over first: how was I going to dress them? Did I need to go to hospital? What was I going to tell my daughter? I did regret the cuts I made because they were not really stating my case for sanity, however they accomplished something – they helped me through an immensely difficult period of my life.

The care and treatment that I have received has been mixed and difficult to label as ‘good’ or ‘bad’. Within each service there are individuals who shine through. It is the triage nurse who took the extra moment to tell me that I should not worry about my daughter and placed a hand gently and reassuringly on my shoulder. It is the doctor who when stitching me up did not rush and make me feel as if I had committed a sin, but instead spoke to me and informed me of the psychiatric liaison team who were available. It is the CPN who comes every day and calls in between visits, listens to what I have to say and does not just fill out the care plan. It is the members of the home treatment team who will take a few minutes out to sit down and not simply check that I am taking my medication. It is the psychiatric consultant who puts away all his notes and lets me explain what is going on in my head without assuming he knows my problems. It is the psychotherapist who does not rush me and allows me to talk or remain silent.

I have had input from GPs, A&E staff, psychiatric unit staff, mental health nurses, CPNs and the home treatment team. Alongside all these individuals I have also been fortunate to have had the support of some of the best counsellors and psychotherapists I could ever wish to meet. All of these people working together, with not just one another but also with me, has, in my opinion, led to my recovery. My own circumstances were made more bearable and workable when services worked together: my therapist understanding the impact the medication I was taking was having on my mood helped me in therapy as I could make sense of my mood swings; my key worker in the housing project knowing the impact the medication was having upon my ability to care for my daughter also helped as it meant social services were not unnecessarily brought into the situation.

My family have found it difficult to understand my self-harm as well as my bipolar disorder (which was diagnosed around 2004); maybe it is a cultural issue or maybe it is just simply too distressing for them to acknowledge. My friends have taken the time to learn about self-harm and understand that removing all sharp objects only benefits their conscience, and in reality put me at risk because I was more likely to not ‘safe self-harm’.

I have a beautiful 9-year-old daughter who is now aware of the story behind my scars. It was not easy explaining self-harm to her, but I knew it was such a big part of me; I needed to tell her because I could not hide it. I wish that everyone could take a leaf out of the innocent book of a child's mind. It is so simple; there is no judgement, just honest questions and accepting responses. She still saw me as ‘Mum’, but ‘Mum who got very sad at times and hurt herself’. Unfortunately there were those who thought I posed a risk to my daughter due to my self-harm, but thankfully they soon realised this was not the case.

People constantly ask how it is that I have managed to stay ‘well’ for so long and not self-harm. The true answer is that I do not have a definitive answer. I can only say that I know that therapy really played a major part in my life. The ability to finally have an opportunity to open up that locked box of terrible memories to someone in a safe and supportive environment had a profound impact upon me. Don't get me wrong, it was scary and there were times when therapy itself led to self-harm episodes, but without those terribly tough sessions, I hate to think what my life would be like now. Would I still be self-harming to the degree that I was? Medication, as much as I hate it, also played its part, but only once I began to understand what the tablets were for and how different ones benefited, or, hindered me. Getting the right combination enabled me to be rested (zopiclone), less agitated (lorazepam) and keep my mood stable (lithium/antidepressants). This in combination with therapy, in combination with supportive professionals, is what has enabled me to now be ‘well’, a better mother, and a full time student at university studying for, ironically, a psychology degree! I am now in control.

4.2.4. Personal account C6

The first time I self-harmed was when I was 15 years old. I was taking GCEs and CSEs at school. There was a lot of pressure from my parents as I was going to be the first person in their family to go to college and become a teacher. My grandmother had wanted to teach but poverty intervened and at 14 she was a servant in a big house, my mother had a fantasy of teaching but lacked the intellect so it was pretty clear that I was there to fulfil their dreams. I didn't want to become a teacher; I wanted to learn what I wanted to be. I wanted to leave home and see strange things. I wanted to stop living safely and take some risks. I wanted to go out when it was cold without wearing a scarf or cross the road without being that careful. I wanted to drink, take drugs and meet the kind of men I wasn't supposed to.

A few weeks before my exams began, having missed the mocks due to illness, I felt as though I was shattering into a thousand pieces. No matter what I did to try and rebuild myself it was the wrong thing. My mother hectored me in to revising to get the results she needed. It was made clear that when I qualified I'd still live in the same town and that I would be expected to support my parents financially. I'd been supporting them emotionally, being their surrogate parents since I was 12 and it was just too much. I later learned that it was when I was around 15 years old that I began to experience bipolar disorder for the first time and that makes a lot of sense. My parents didn't notice, except for the odd moment, that I was under a great deal of stress and then they wrote me off as being difficult. I've spent my whole life being difficult.

I found myself out in the dark one night, walking around terraced streets that were too narrow by the day and by the night narrower still so I had to turn my anorectic body sideways to make my way through without banging my bony elbows on the doors as I passed by. It wasn't the best neighbourhood in the world. We had a poly, a town centre and a red light district all within a few hundred yards. Across the main road was the area that even the residents didn't go to at night. At the top of the road was a school in a few acres of ground where my brother's friend had found a hanging body one morning. Not the sort of place you should let your kids roam around after dark.

I heard a noise behind me and began to run as fast as my barely strung together body would take me, tripping in the dark knee first on to a pile of glass. The noise behind me was in my head. My school trousers were ruined, my hands were filthy, I was crying but I felt relieved. The nagging and shouting love-in I got when I returned home was spectacular. What was I doing out? Well actually nobody had realised that I wasn't there so I always felt that it was a pretty redundant question. Much emphasis was laid upon how much the family relied upon me and how I had to stop being so dramatic and pass my exams. The relief that I'd felt earlier quickly disappeared.

Adding to the pressure was the fact that I'd formed a relationship with someone older from school. I was 15 and he was 18. He was pressuring me into having sex with him; my mother was pressuring me to marry him. I was staying with him because he was joining the army and I thought it would be an escape from the family that held me so tightly against my will. I felt kidnapped in my own home. Life was a mess.

I passed the exams and left school. I didn't go onto further education I went out to work. My family was furious especially as one of the jobs I took was in a factory. It suited me well and the money was fantastic and the accidental injuries were frequent. I still have the faded scars on my hands, each one a moment of misery blissfully relieved.

I had no idea until I was in my mid forties why I really did what I did. A consultant psychiatrist was doing a study on self-harm and asked me to be part of the study. There was a recorded session with a researcher and I described my experiences of what I did, how it felt, what the outcome was. Even now as I'm typing this I feel the scars on my arm twitching. That's usually a sign that something is stressful and that harm could be on the way. I had to stop wearing earrings because I always felt tempted to pull them out the hard way when I felt my scars twitch.

I sat in a room in a psychiatric outpatients department. A lovely room with a plant in that I tended each time I went. As the researcher settled herself and set up the recording equipment I had my chat with the plant, watered it, washed its leaves, wasted some time until I had to sit down and begin to talk. I wanted to talk but, like all of these experiences, sometimes you learn truths about yourself that you'd rather you didn't.

We talked of when I harmed and the ritual. Had there been any time when I hadn't followed this pattern of harming. Surprisingly yes, a ten-year gap during the time I was conscientiously drinking England dry. Yet another form of self-harm.

We talked of why I harmed and the outcome and this is why I can never say that I will stop harming myself. I feel pressure building up inside me when I have mood swings. I have violent moods swings. They're sudden, massive physical attacks that my mind wreaks on my body. I have no control over them but I can gain relief from them. I am a fully inflated balloon waiting to explode loudly. The self-harm is a strip of sellotape over the balloon and a pin piercing the balloon through the sellotape. The balloon deflates slowly, easily, painlessly, and comfortably. It leaves me exhausted, ravaged, a mess of tears, laughter, sadness and joy. It leaves me alive because without it I would surely kill myself.

As I harm I get a hit. A legal shot of a drug I never used in my hedonistic days as an abuser. That's probably the truest reason why I won't stop harming.

I've tried to stop. I've tried drawing on myself and holding ice and all of the other things that don't come close to stopping me want to die. I have formulated a way of harming safely with the knowledge and consent of my GP and my consultant. It's not ideal but it keeps me alive and scarred as opposed to dead and without a mark.

4.2.5. Personal account D

I first suffered from depression in my late teens and early twenties, after what I had always assumed was the usual teenage angst and drama became more serious. I became withdrawn from my friends and family, and had negative thoughts about myself and those around me. I believed that I was worthless, and I assumed everyone else agreed. At some point – I don't remember the first time – I started cutting myself. I used a razor blade to carve increasingly deep and angry wounds into my arms.

It was at this point that my parents decisively intervened, and involved our GP. I was prescribed antidepressants and referred to a specialist. As this was the mid 1990s, and I was still very new to the terminology of mental health disorders, I don't remember exactly what drugs I took. I visited the psychiatric department of my local hospital as a regular outpatient, and I finally found a person to whom I felt I could really talk. At the time, I didn't really care what qualifications she had – I just knew that, for the first time, I felt that I was managing the problem, and not being managed by it.

With the support of my family, my health improved, and I went on to university – a year older than my peers but more confident in my ability to deal with the stresses and pressures of life. In later years, I was able to identify what I saw as early warnings of a relapse, and manage the symptoms before I lost control.

Fifteen years later, however, in my mid-thirties, I became depressed again. Now with a wife and child, and all the responsibilities that entails, I found that my working environment caused severe anxiety and I quickly lost my ability to manage the symptoms. Eventually, I began cutting myself whilst at work.

It's difficult to say definitively why I cut myself. There was certainly an element of release involved – immediately after cutting, I would feel better, less anxious, and so that feeling of relief became an incentive to cut again. I also believe I wanted to create a physical manifestation of the emotional turmoil – a physical wound is so much more visible and obvious. However, there's a clear paradox here because I didn't want anyone else to see the wounds. Perhaps I was creating this physical evidence to convince myself that there was something wrong.

I went to see my GP seeking some medication that I naïvely believed would magically make the problem disappear. I was prescribed an antidepressant (mirtazapine), and my doctor also took time to ask me how I felt during the periods of depression and anxiety, and how I felt when I was self-harming. She asked what I thought might be causing the problems. Although I didn't have the answers, I appreciated the questions being asked.

I am usually a self-confident and self-reliant person and therefore I found it very difficult to ask for help – it felt like I was exposing myself. Although I had no previous relationship with my GP, she was patient, understanding and sympathetic. As my treatment continued, I found my fortnightly consultations with her to be a useful barometer of my progress.

Initially, I withdrew from my ‘normal’ life – I stopped working and spent little time with my family, preferring my own company. I would try to read, but found I could only concentrate for short periods of time before my thoughts would wander. During this time I continued to cut myself when I felt particularly worthless.

After several weeks, I was assessed by the local mental health team and referred to a group CBT course. This was a classroom-based course with around eight other service users. I found this of limited use, as I was so anxious at the prospect of joining the group, I found it difficult to concentrate on the content. Also, I had no relationship or rapport with the chap who was delivering the content, so I found what he was saying did not carry much weight.

A friend gave me a book produced by the National Self Harm Network about ‘safe cutting’. This was useful because, as silly as this might sound, I didn't want to do any serious damage to myself. Although there were times when I felt suicidal, these were very different from the times I cut myself. When I was cutting myself, the motivation was certainly not to end my life, but to hurt myself – to damage myself.

Later on, I was seen by an occupational therapist. These sessions were one to one and focused specifically on my own recovery. Straight away this was more useful and as I built a rapport with the therapist, I found myself participating more with the process. Each week we would agree clear targets and goals – go to the shops three times, speak to my parents, spend time with my son – then we would review those goals the following week. This follow-up was crucial as it allowed me to see what progress I was making – it's all too easy to just see the bad side of things.

It's fairly obvious that group CBT is far cheaper to provide than the one-to-one therapy. However, in my opinion, it doesn't deliver anywhere near the value it should. I shouldn't speak for other members of the group, but the atmosphere within the room was tense and agitated – I'm not sure that anyone was learning much.

As, gradually, I started to feel better, I tried to analyse what had made the difference – I think it's probably an element of everything – the drugs, the various therapies, the GP consultations, the natural cycle of my mental health. The local mental health team invited me to join a reading club (bibliotherapy). We read short stories and novels, and discussed them as a group. We had all been suffering from mental health conditions, but the group wasn't about that – it was about the books. I found this to be a really useful exercise. It helped me get back into the social habits I had lost whilst I had been ill. The timing was important – I wouldn't have been able to participate in the group unless I had already gone through the therapies I had had up to that point.

4.3. PERSONAL ACCOUNTS—CARERS

4.3.1. Introduction

The methods used for obtaining the carers' accounts were the same as outlined in Section 4.2.1, but the questions included:

  • In what way do you care for someone with self-harm?
  • How long have you been a carer of someone with self-harm?
  • In what ways has being a carer affected your everyday life (such as schooling, employment and making relationships) and the lives of those close to you?
  • How involved are/were you in the treatment plans of the person with self-harm?
  • Were you offered support by the person's practitioners (for example, their GP, psychologist, or other)?
  • How would you describe your relationship with the person's practitioner(s)?
  • Have you and your family been offered help or received assessment/treatment by a healthcare professional?
  • Did you attend a support group and was this helpful?
  • Did any people close to you help and support you in your role as a carer?

4.3.2. Carer account A

My son died in April 2010, so I have written this account from my point of view as his mother and carer. My mother, who suffered from depression and anxiety, also self-harmed and took her life in June of the same year after many previous attempts. I would like to understand what drove them to such desperate methods because neither of them had any particularly awful life events, in fact, generally speaking, the opposite would be the case. But what was going on in their minds must have negated the positive aspects of their lives.

My son began self-harming when he was 13 when we were living in Germany as part of the MOD [Ministry of Defence]. My son wrote a suicide note and took an overdose of over-the-counter pain relief drugs with alcohol. Before this event, he had had an argument with a friend about some money he was owed, and I had been a little cross with him because he had taken some things that belonged to his brother. He was taken to a German hospital and when he left the hospital we were told that he should see a child psychologist immediately but the only one available as part of the MOD services was an educational psychologist. He saw this professional for about a year. The main diagnosis was anxiety, and he was given relaxation tapes and taught exercises to control this. The psychologist thought that he would probably try to end his life again, so we were obviously terribly worried about this.

At the age of 25 my son attempted suicide again. We were still living in Germany and he was taken to hospital and put under close scrutiny. He had been depressed and was taking medication for this. By this time he had a serious alcohol problem and had experienced withdrawal seizures. He stayed in the unit for about 5 months. The quality of care was very good; he had therapy and self-help, although the language was a bit of a barrier as my son did not speak fluent German. He was prescribed citalopram. After leaving hospital he was assigned to a CBT therapist and saw her every week until we left Germany about 3 months later.

We left Germany to live in the UK and my son registered with a local GP, taking a copy of the therapist's notes with him. We also asked for his hospital notes to be transferred to the practice, but this didn't happen for several months. He was put on a waiting list for counselling and no copy was taken of the therapist's letter. His prescription was changed to venlafaxine, which was the same medication that my mother was taking.

Two months later, he was admitted to A&E, after cutting his wrist and taking an overdose of antidepressants, painkillers and iron tablets (he had previously had a bad accident and broken his leg, so he had a lot of pills prescribed for pain). He was put on a ward in a general hospital. I asked what would happen and was told he would probably be sent home after seeing a psychiatrist. I asked to speak to a doctor on the ward so I could make him aware of my son's history, which was arranged and my son then saw a psychiatrist. My son told the psychiatrist that he would not be safe if he went home, and he was admitted to a psychiatric hospital. He was diagnosed with severe depression and treated with high doses of antidepressants. He stayed there for 5 months and was then transferred to the crisis team. He was on a waiting list for CBT and he had about eight sessions of this about 3 months after he left hospital.

My son rarely talked about self-harming – when we asked him about the various injuries he had, he would say they were accidental, and it is possible that some of them were, as he was still having withdrawal fits from trying to regulate his alcohol intake. He lived alone, so many of these were not witnessed. His CPN thought that the fits he was having were psychogenic; his psychiatrist seemed convinced the problem was alcohol addiction. His notes show that he did talk about hurting himself to his CPN – describing it as ‘giving himself a good battering’. There is nothing in his notes to say that self-harming was discussed or explored.

My son often talked about feelings of emptiness and said that was why he drank. Drinking seemed to put him in touch with his emotions but in an exaggerated way so that he often became very tearful and upset. When he was sober he was often quite distant and withdrawn.

My son had always been a quiet child, he was generally very passive, although would have quite severe mood swings, which in early childhood were tantrums and later on would show themselves in outbursts of frustration such as breaking things in his house or hitting himself. He had usually been drinking when he lashed out at himself. He was quite insightful about this and had ways of calming himself such as taking a bath, or using a punch ball. He found dealing with change, such as starting school, very difficult, and because we moved around a lot in Germany he had many changes to deal with. Break ups with a girlfriend usually led to self-harm incidents. He often described himself as worthless and compared himself with his brothers, both of whom were getting on well with their lives, settled with jobs and girlfriends/wives. He had considerable artistic talent, and all of his peers really liked him and thought him very good company, but he didn't seem to be aware of this and thought people didn't like him and were laughing or talking about him behind his back.

My son didn't have a job for the last 3 years of his life. He didn't like to be criticised in any way, and inevitably this could happen if he was employed. So he didn't try to get a job. The drink problem led to several break ups with girlfriends and also to losing respect of his peers. My son was quite naïve – he was taken advantage of by others who borrowed money and didn't pay it back.

About 5 months before he died, my son began talking to me about his self-harm; he said the cuts to his face were so that he didn't do something worse and he talked about how he was planning to end his life and how he proposed to do it. I told the CPN, who advised me to go to my son's GP. The GP said there was nothing that could be done until my son decided he wanted to stop drinking.

My son very rarely saw his named GP; he told me that he didn't understand his problems, and he chose to see more sympathetic doctors from the practice. One of these was very helpful and guided my son to the addiction team, and also re-referred him back to the CMHT.

After his re-referral to the CMHT in April 2009, there was no care plan, I asked why and was told it was because he was with the wellbeing and access team, and they didn't do care plans. I found out later that this team would only normally see a client on about three or four occasions, but my son saw his CPN 37 times.

Once my son accessed the addiction service, things seems to improve quite a bit. The counsellor was aware of dual diagnosis, which his CPN seemed to not be aware of, and she seemed to have a lot of insight into my son's personality. There seems to have been a proper plan for his treatment, and I think he was taken seriously, instead of just a ‘drunk’.

There was a plan to refer my son for dialectical behaviour therapy as one of the possible diagnoses was severe emotional personality disorder. The referral process started in September 2009, but he was not actually referred until the week before he died in the following April. There was quite a long waiting list so he wouldn't have accessed the therapy for quite a while.

He only ever saw his psychiatrist when I had made an urgent request – the last time was in February 2010 after he was talking openly about suicide to his addiction counsellor and to me, and because he was physically ill, having lost about 20 kg in weight. The first risk assessment in my son's file, since his re-referral, appears on this date.

My son did see a private counsellor but I don't know if he discussed self-harm issues with her. He also had contact with a Rethink volunteer and met a few times with them. There was a proposal to go to an art class with support, but my son never acted upon it.

I was offered carer support – but what I really needed was to be clear about my position as a carer and what I could do to help, and what not to do. Once my son had accessed the secondary mental health services, I was relieved because I thought I could take a ‘back seat’ and let the professionals help him. But this didn't seem to happen. He had lots of help in getting benefits, but there didn't seem to be any overall plan. I was largely excluded from his treatment – there was no discussion about his care plan and although I think my son didn't mind me knowing about his treatment, there was never any formal acknowledgement of this. My son hadn't signed any of his care plans and the section about discussion with carers all had ticks in the ‘No’ boxes.

I had very little faith in the psychiatrist or the CPN, when I asked at the emergency meeting why there was no care plan or a risk assessment, I was told that I was making the situation worse. But the addiction counsellor seemed to have a real understanding of the link between mental illness and substance misuse, and she seemed to have a very good relationship with my son, he was more open and honest with her than with the other agencies. She had also discussed issues of confidentiality with him and I felt when I talked with her that the boundaries were clear and this was a relief because I didn't want to feel disloyal or as though I was prying into his life. I knew that anything she said to me was with his permission.

I was not offered help by a healthcare professional. I attended a voluntary group with carers who had adult children with similar problems. My family were also supportive.

4.4. REVIEW OF THE QUALITATIVE LITERATURE

4.4.1. Introduction

A systematic search for published reviews of relevant qualitative studies of people who self-harm was undertaken. The aim of the review was to explore the experience of care for people who self-harm, the experiences of carers who care for people who self-harm, and of healthcare professionals who work with people who self-harm.

4.4.2. Evidence search

Reviews were sought of qualitative studies that used relevant first-hand experiences of people who self-harm and families/carers. For more information about the databases searched see Table 4.

Table 4. Databases searched and inclusion/exclusion criteria for clinical evidence.

Table 4

Databases searched and inclusion/exclusion criteria for clinical evidence.

4.4.3. Studies considered7

At the scoping stage, two recent systematic reviews were found and these were modified in two ways. Firstly, only studies that were relevant to the long-term management of people who self-harm were included (for example, studies that focused exclusively on experience of care in general hospital emergency department settings were excluded) and secondly, the reviews were updated to include studies published through to January 2011.

The first systematic review explored the experience of self-harm and treatment from the perspective of people who self-harm (Taylor et al., 2009). This review involved undertaking a search between 1950 and June 2006 and included a total of 31 studies. Of these, a total of 21 studies were included and narratively reviewed for the purpose of this guideline and ten studies were excluded because they focused on shorter- rather than longer-term management. The quantitative studies were not subject to meta-analysis due to the lack of studies providing similar data. They were used instead to provide evidence about the general experiences of a larger population of service users, with the qualitative data used to add depth to the understanding of self-harm through the description of specific experiences.

Since the review (Taylor et al., 2009) only included studies published before 2007, an updated search was conducted to capture more recent studies relating to service user, healthcare professional and carer experience. A total of 2,269 references were identified by the electronic search. Of these references, 2,201 were excluded at the screening stage on the basis of reading the title and/or abstract. The remaining 68 references were assessed for eligibility on the basis of the full text. Overall, 36 qualitative studies and quantitative studies met these inclusion criteria. Thirty-two studies were considered for the review but they did not meet the inclusion criteria so were excluded. The most common reasons for exclusion were: the study focused only on shorter-term medical or psychological management of self-harm rather than longer-term management; the study did not allude to either the experience of self-harm or treatment, or the experience of carers or healthcare professionals; non-English articles or dissertations, and studies in which experiences of services or reasons for self-harm differ (for example, developing countries).

The second systematic review carried out by SAUNDERS2011 (Saunders et al. 2011) examined attitudes of healthcare professionals and knowledge regarding people who self-harm, and is reviewed below. However, only findings relating to longer-term management were included. Studies were excluded where, in the judgement of the reviewers and the GDG, there was limited relevance to UK health settings.

Further to this, there were three additional studies HUBAND2004 [Huband & Tantam, 2004], REECE2005 [Reece, 2005], TAYLOR2003 [Taylor, 2003] that were included on the basis of cross-checking an existing literature review (Bosman & Meijel, 2008) that met the inclusion criteria and a further four studies HOPKINS2002 [Hopkins, 2002], JEFFERY2002 [Jeffery & Warm, 2002], MACKAY2005 [Mackay & Barrowclough, 2005], O'DONOVAN2007 [O'Donovan, 2007] were included after cross-checking a recent literature review carried out by McHale and Felton (2010). These were all qualitative studies that examined the experience of self-harm from the perspective of service users or healthcare professionals.

Further information about both included and excluded studies can be found in Appendix 15a.

4.4.4. Service user experience of self-harm

While reviewing each study, key findings that were relevant to the service user experience of self-harm were extracted and summarised into a study characteristics table (Appendix 15a). There were 27 studies (ADLER2007 [Adler & Adler, 2007], ARNOLD1995 [Arnold, 1995], BAKER2008 [Baker & Fortune, 2008], BURGESS1998 [Burgess et al., 1998], BYWATERS2002 [Bywaters & Rolfe, 2002], CAMGAN1994 [Camgan et al., 1994], CRAIGEN2009 [Craigen & Foster, 2009], CROCKWELL1995 [Crockwell & Burford, 1995], CURTIS2006 [Curtis, 2006], DORER1999 [Dorer et al., 1999], FISH2008 [Fish & Duperouzel, 2008], HARRIS2000 [Harris, 2000], HORNE2009 [Horne & Csipke, 2009], HUBAND2004, HUME2007 [Hume & Platt, 2007], KOKALIARI2008 [Kokaliari & Berzoff, 2008], KOOL2009 [Kool et al., 2009], LESNIAK2010 [Lesniak, 2010], LEWIS2010 [Lewis & Darcy, 2010], MOYER2007 [Moyer & Nelson, 2007], POLK2009 [Polk & Liss, 2009], RAY2007 [Ray, 2007], REECE2005, RUSSELL2010 [Russell et al., 2010], SCHOPPMANN2007 [Schoppmann et al., 2007], SHAW2006 [Shaw, 2006], SINCLAIR2005 [Sinclair & Green, 2005]) that fell under the category of service user experience of self-harm.

The review team listed the themes that emerged from the analysis of these main findings, and these were presented to the GDG and used to structure this chapter. The findings that emerged under the heading of ‘service user experience of self-harm’ were:

  • underlying reasons for engaging in self-harm behaviour (for example, traumatic life events, psychiatric illness, a coping strategy and cultural factors)
  • coexisting destructive behaviours
  • physical and psychological consequences of self-harm
  • stigma and misconceptions about self-harm
  • stopping self-harm and recovery
  • alternative coping strategies.

These findings appeared in both populations of adults and young people; however, because these populations may differ in their experiences the findings for young people were reported separately.

In addition to these different age groups, there were two subgroups for which the experience of self-harm may have differed and so these were also reported separately. These included people who self-harm with mild/moderate learning disabilities and males who self-harm.

Reasons behind self-harm

The motivations or underlying reasons for self-harm were commonly reported in the literature. Overall, the majority of studies found that self-harm was linked to traumatic life events, difficulties in interpersonal relationships and experiences of isolation or rejection (ADLER2007, ARNOLD1995, BYWATERS2002, CROCKWELL1995, CURTIS2006, HARRIS2000, HORNE2009, KOOL2009, LESNIAK2010, RAY2007, SCHOPPMANN2007). However, it should be noted that many of these studies referred to self-injury as opposed to self-poisoning. There were only four studies that looked at the reasons behind self-poisoning (BURGESS1998, CROCKWELL1995, DORER1999, SINCLAIR2005).

CROCKWELL1995 interviewed women who had engaged in multiple suicide attempts by overdose in Canada and were among the first to examine the underlying reasons behind self-harm. They revealed that overall participants had experienced significant life events such as strained or absent relationships with parents, being bullied at school and physical, sexual or emotional abuse. These life experiences were linked by participants to their self-harm.

In line with these findings, both HARRIS2000 and BYWATERS2002 conducted studies in the UK that also found that the majority of service users' accounts were strongly characterised by traumatic life events or chronic life problems, including physical and sexual abuse in childhood, and the death of a family member; again, all of the participants explicitly linked their self-harm in some way to such experiences. The above findings were replicated in more recent studies carried out in New Zealand (CURTIS2006) and the US (LESNIAK2010), thus strengthening the findings reported here. In fact, many participants in the study carried out by CURTIS2006 spoke explicitly of feeling powerless or out of control in some aspect of their lives, often as a direct result of abuse. Likewise, in the study carried out by Lesniak (2010) all of the participants experienced some form of childhood trauma such as emotional, verbal or physical abuse. They felt ill-equipped to deal with these traumatic events and felt they received no parental support or guidance to help them.

In contrast, in a study carried out by ADLER2007 in the US on females who self-harm it was found that many of the participants did not come from a background of physical or sexual abuse and in fact many had unremarkable childhoods. One female noted:

I've got no history of abuse, and my recollections of my childhood are happy, so why do I self injure? Who knows?

ARNOLD1995 conducted semi-structured interviews (n = 26) and written questionnaires (n = 50) with women who had a history of self-injury, to provide some insight into the act of self-injury, and found that many of the childhood experiences that women felt had led them to self-injure were similar to those reported by other researchers. However, sexual abuse, although common, was less prevalent than many authors reported.

Other common precipitants of self-harm were ruptures in interpersonal relationships and experiences of isolation, loss, abandonment and rejection (ADLER2007, CROCKWELL1995, HORNE2009, KOOL2009, LESNIAK2010, RAY2007, SCHOPPMANN2007). For many respondents, the lack of connection or, conversely, the existence of a very close connection provided a reason to self-harm (KOOL2009). One participant (RAY2007) explains how difficulties in her relationship with her mother were a significant stressor and perhaps triggered her self-harm:

We were extremely close when I was in high school because that's all I had. She was all I had… When I was going through all this stuff, I mean really, really bad depression, my mother was just like, ‘I don't want to deal with it’… she was like, ‘I'm stepping out’… so I mean I lost the number one person I had in my life.

Many participants voiced some form of abandonment such as neglect, bereavement, fear of being alone or feeling disconnected from those around them (LESNIAK2010). For others, experiences of breakups, fights or other forms of rejection led them to self-harm (ADLER2007). Romantic traumas were a more significant factor cited by males (ADLER2007). Others mentioned that they engaged in self-harm to feel alive or relieve themselves of dissociation (LEWIS2010, POLK2009, SCHOPPMANN2007); in doing so, the visual and tactile perception of blood following self-injury played an important role. To feel dampness and warmth meant to be able to perceive one's own body, and that meant that the state of alienation had ended and one was ‘whole’ again (SCHOPPMANN2007). Moreover, the results suggested that young adults who indicated that they self-harm to manage tension and dissociation also had a stronger intent to self-harm again – at least within the next 3 months. These individuals also indicated that self-harm produced an effect that was congruent with the reason set they endorsed (that is, tension or dissociation reduction). Thus self-harm may be reinforcing because the goals associated with its reasons are achieved and therefore produce a desired outcome (for example, escape from a psychological state). This may partially explain why these individuals report more past self-harm and a stronger intent to self-harm again (LEWIS2010). Moreover, this reason was used in conjunction with other reasons such as venting emotion or striving for control, indicating that people may harm themselves for different reasons on different occasions (POLK2009).

Other reasons reported for self-harm included school stress, over-commitment in extracurricular activities, self-punishment and a driving sense of perfectionism (ADLER2007, ARNOLD1995, KOKALIARI2008, POLK2009). Another frequent reason for engaging in self-harm was to provide a form of ‘self-punishment’ for not meeting expectations of others or themselves (POLK2009). One individual (KOKALIARI2008) wrote:

I hate who I am. I hate who I was. I hate what I am becoming. If I can work to kill that, even if only to hurt it, I will accomplish my goal. I feel deserving of punishment for my wrongdoings and if that punishment doesn't come from anywhere else, it will come from me.

Perfection was also related to body image, where self-harm offered control over the body:

Eating disorders are just another form of self-injury, and all these are based on control, and you know, at that point, I could control my body, and so appear perfect.

Above all, self-harm functioned as a coping mechanism for dealing with intense emotions and an opportunity to regain some control over a person's life (ARNOLD1995, BYWATERS2002, HARRIS2000, HORNE2009, HUBAND2004, HUME2007, LESNIAK2010, LEWIS2010, POLK2009, RAY2007). For example, one individual (POLK2009) claimed:

It was a coping mechanism. Everything would build up inside me until I needed some way to release it. Cutting was that release.

Similarly, in a study carried out by RAY2007 on US students, self-harm was described a method of tension release (that is, ‘letting the pain out’) or a means of regaining a sense of control. The tendency to doubt their ability to cope with emotional issues, as well as perceptions of being far more sensitive than others was also highlighted. For instance, one service user stated:

I feel things more strongly than most people… or at least the bad emotions much more powerfully than the average person.

Correspondingly, in a study carried out by HUBAND2004 on women's subjective experience prior to self-harm, the majority of women recalled self-wounding due to an emotional state that intensified over time. Many women consistently spoke to the efficacy and immediacy of self-harm in relieving emotional pain (HUBAND2004, KOKALIARI2008, RAY2007):

It is definitely a quick fix… Welcome to McDonald's society, right where we came from, fast food, anything into a sugar high and then it drops!

Furthermore, the effect of self-harm was described as more powerful than other methods of emotional release, including using a punching bag, writing in a journal and talking to others (RAY2007). On the other hand, many interviewees described their experience with self-harm in a manner that suggested it was primarily utilised as a means of avoiding fully processing emotions (RAY2007).

Others engaged in self-harm to regain a sense of control over their lives (ARNOLD1995, POLK2009). Many indicated feeling out of control before the self-harm and that subsequent self-harm led them to feel in control of something in their lives even if it was just their pain. For example, one participant (POLK2009) reported:

I self-injure for a feeling of control. If I lose control of a situation, I cut to make myself feel that I still have the power to handle the situation.

In contrast, many others viewed self-harm as a consequence of their psychiatric illness and the ‘trigger’ for accessing help (SINCLAIR2005). Self-harm was a means to get support and attention, because of frustration about not receiving support for their illness (HARRIS2000). They also reported sometimes feeling a strong desire to be admitted, to escape the overwhelming and often uncontrollable emotions leading to self-harm (HARRIS2000). Many of the women acknowledged experiencing significant depressive episodes, with self-harm seen as a symptom of their depression as well as an attempt to relieve depression (RAY2007, SINCLAIR2005).

In another study carried out by POLK2009 in the US, self-harm was used by participants as a means to keep from killing themselves or hurting others. However, it should be noted that only one participant indicated that she used self-harm to keep from hurting others.

The influence of cultural factors on self-harm was also highlighted. In particular, participants suggested that the promotion of an individualistic culture can lead to members of that society being more likely to deal with their feelings alone (KOKALIARI2008):

I am wondering if it says something about our culture's need to deal with something on your own as opposed to deal with something with other people or with healthy means … You can't rely on other people to help you, and sort of like an independent self-sufficient mentality is pretty widespread.

Attempts to justify the behaviour as sanctioned by popular culture and as a behaviour that is practised by numerous other women also emerged (RAY2007).

Coexisting destructive behaviours

Other destructive behaviours tended to co-occur with self-harm, including drug and alcohol misuse, over-sleeping and eating-disordered behaviour (ARNOLD1995, HUBAND2004, RAY2007, SINCLAIR2005). ARNOLD1995 found that most women who took part in the study engaged in various other sorts of self-harm in addition to inflicting injuries on themselves. Most notable was the high occurrence of eating disorders, while overdosing and misuse of alcohol and drugs were also common. Moreover, there were numerous other ways in which women saw themselves as engaging in self-harm. These included overwork, over-exercising, staying in abusive relationships, unnecessary and repeated risk-taking and smoking.

In another study carried out by RAY2007 one participant touched on the notion that certain types of self-harm behaviours may be interchangeable. In discussing the relationship between purging and cutting she admitted she was seeking the same objective in both behaviours, specifically a release through pain. Similarly, SINCLAIR2005 discovered that co-occurring alcohol misuse dominated for four participants and for these people abstaining from alcohol was key to the resolution of their self-harm. Looking back, they attributed their use of alcohol to an attempt to escape from difficult emotions, but now saw it as precipitating a vicious cycle of low self-esteem and self-loathing. Moreover, refraining from drinking led to an increase in self-pride and individuality, and an immediate end to their acts of self-harm that had required hospital admission. Finally, sleep – or overdose of medication to induce sleep – was cited as an additional alternative release to self-harm (HUBAND2004).

Consequences of self-harm: psychological and physical

Many studies reported the physical and psychological consequences in the aftermath of a self-harm episode. In general, the women expressed mixed feelings about self-harm (RAY2007). They spoke of the manner in which self-harm brought relief to their suffering and offered them a sense of satisfaction and empowerment. At the same time, many alluded to internalised feelings of guilt and shame after an episode of self-harm (HUBAND2004, LESNIAK2010, MOYER2007, RAY2007). In particular, concern about disappointing or hurting others through self-harm were frequently expressed (RAY2007). They also articulated apprehension about hiding evidence of their injuries and the consequences of others discovering them (for example, having to go back to therapy and losing a job). Moreover, many of the women made comments suggesting that they were dissociated at the time of their self-wounding, for example describing numbness at the time of the wound and of feeling like the cut was to ‘another person's arm … not really mine’ (HUBAND2004). In a recent study carried out by GORDON2010 (Gordon et al. 2010), 106 participants with a history of self-harm completed questionnaires about their emotional reactions during their most recent self-harm episode. They found that people with more frequent self-harm episodes felt more soothed, relieved, calmer and attentive following their most recent self-harm episode, suggesting that self-harm may become more reinforcing with reoccurrence.

Along with the psychological impact of self-harm, the physical consequences of self-harm were also apparent in the service user literature. One of the most prominent physical consequences of engaging in self-harm was the sensation of physical pain. HORNE2009 examined the experience of pain sensation in adults and young people who self-harm. Some experienced no pain at all and the remainder felt a reduced level of pain. Others explained that there was a certain pain threshold they needed to reach before they could reconnect with themselves again. The issue of pain was addressed in another study carried out by POLK2009 wherein 16.8% reported no pain, 47.7% little pain, 32.3% some pain and 3.2% reported a great amount of pain during self-harm. In a recent study carried out by GORDON2010, it was found that greater frequency of past self-harm episodes led to more intense feelings of physical pain during their most recent episode.

Stigma and misconceptions about self-harm

Another common finding that surfaced from the service user literature was the mixed reactions of others to their self-harm and the stigma and misconceptions about self-harm. Other people's reactions to their self-harm varied, with some women reporting fairly supportive responses while others received quite negative reactions. To a certain extent, others’ reactions seemed to determine if the women would continue to be open about their self-harm and potentially if they would seek help for this behaviour (RAY2007). In a study carried out by BAKER2008, family, friends and wider society including medical and mental health services were often explicitly characterised as judgmental and lacking understanding. Moreover, DORER1999 revealed that the most commonly perceived reaction of others was distress – generally expressed by parents and often associated with concern. The second most common response, which was largely articulated by parents, was anger. Many young people also reported being ignored, whilst others felt that people around them had been overprotective since the overdose. One of the most common responses of peers was to think that the overdose was a ‘stupid’ action. On the other hand, BURGESS1998 discovered that reactions of significant others to the young people following the overdose were largely favourable with more people responding with understanding and wishing to help than responding with anger. Overall, mothers appeared to be more sympathetic than fathers.

Participants also spoke about various misconceptions about self-harm. The first misconception that was addressed in the literature was that people self-harm to gain attention from others or as a cry for help. The majority of participants expressed strong reactions toward individuals who self-harm ‘for attention.’ They spoke of the need to distinguish between, for lack of a better term, ‘true’ versus ‘false self-injurers’ (RAY2007). Many of the women expressed anger or annoyance toward people who showed off their injuries or harmed themselves in obvious ways. Conversely, one participant (RAY2007) offered a more sympathetic approach to people who harm themselves for this reason:

If this person is doing it for attention they obviously need it. Someone who is going to take it to that extreme has a lot of problems and they just need someone to care. Don't be mean about it. They need help.

Some women stressed additional misconceptions about self-harm. One participant criticised the tendency to oversimplify the behaviour by attributing it to a single reason, and emphasised the need to recognise the multitude of factors that can simultaneously contribute to this behaviour. Another participant expressed frustration that so much of what is available to read about self-harm focuses on those who have been sexually abused and stated she does not feel this material applies to her. The women discredited stereotypical images of the ‘self-injurer’ and emphasised the fact that ‘normal’, productive people engage in this behaviour (RAY2007).

Experience of recovery

An additional key topic to come out of the service user experiences was that of ending self-harm and the process of recovery. In a US study (ADLER2007), the majority of people who had self-harmed for a long period had no intention of ever stopping. Others wanted to quit, but recognised its benefits as a coping mechanism and a means of self-expression. Yet for a small minority, their self-harm subsided after many years, either through therapy or with the help of online peer support and education. Many of these people remained in online communications, helping others, as a way of maintaining their abstinence. KOOL2009 explored people's experiences and motivations for stopping self-harming in a sample of inpatients from a psychiatric intensive treatment centre. All respondents indicated that learning how to cope with their ‘inner selves’ and others was an important skill to reduce and stop self-harm. The analysis demonstrated that the process of stopping self-harm can be divided into several phases such as: connecting and setting limits; the heightening of self-esteem; gaining an understanding of the self and increasing their sense of autonomy; the use of alternative strategies; and preventing relapse. The first phase of connecting and setting limits provided a sense of safety that allowed service users to reach out more to others and themselves and to feel their emotions, such as pain and sadness. The second phase entailed the heightening of self-esteem with a further deepening of contact with the self. Respondents indicated that their self-esteem increased because they could see and feel that they were recognised by carers and family and friends as full human beings, with all their faults and imperfections. One of the respondents to KOOL2009 stated:

The carers told me they did not disapprove of me as a person, but because of what I did. For me this meant there was nothing wrong with my character, my personality. When I came out of isolation, they saw me as me and I could just start again with a clean slate.

This growing sense of self-esteem allowed service users to discover their own strengths and creative talents, which in turn contributed to a more positive self-image. By putting these talents to use, they succeeded in expressing their emotions in ways other than self-harm. In the third phase service users learned to understand themselves, which allowed them to realise that they could control their own lives. Respondents learned to know themselves better and began to understand their own behaviour.

The fourth phase was one of increasing the service user's sense of autonomy. They felt that they gradually became better able to make independent decisions about their lives and act upon those decisions, and thus take responsibility for their own behaviour. In this phase, contact with others changed: because of their growing sense of autonomy, the respondents chose who they wanted to forge a connection with and who they did not. They also determined the content and limitations of their contacts with others. As one of the respondents (KOOL2009) expressed:

I got control of my life because I realised I could make choices, I could and was allowed to want things for myself and, more importantly, I could stop things.

The fifth stage entailed implementing alternative strategies to cope with emotional distress and urges to self-injure and asking for help (KOOL2009). Finally, the sixth phase focused on preventing relapse. Even if they had not engaged in self-harm for a long time, the risk of relapse continued to exist for many. All respondents indicated that they still found it very difficult at certain moments, especially in situations of increasing tension, not to injure themselves (KOOL2009).

An additional US study (SHAW2006) examined how female college students stopped self-injuring and the role (if any) of professional treatment in this process. Not all participants expressed an explicit desire to stop or made a conscious decision to stop. Whether women expressed a desire to stop or not, they all stopped cutting when the psychological symptoms giving rise to self-harm, such as alienation or extreme anxiety, discontinued or reduced in number or intensity. Furthermore, all of the women spoke of the importance of self-initiative or taking control of their lives as essential in their journeys toward stopping (SHAW2006). It appears that the women's self-harm diminished as increasing involvement in life pursuits – such as intellectual interests, career goals and enlarged social networks – gained prominence in their lives. Relational ties and support from parents, peers and romantic partners were also of vital significance in helping to stop self-injuring. Participants frequently expressed a desire to satisfy or not concern others as important motivations to stop self-injuring (SHAW2006). For others, disclosure was used as a means of reinforcing their commitment to stopping self-injuring and a means of accessing professional treatment. Fear of being labelled ‘crazy’ was a frequently-cited deterrent, as well as fear that the behaviour might become increasingly entrenched and out of control. Moreover, the longer women abstained from self-injuring, the easier they found it to resist urges to hurt themselves (SHAW2006).

Alternative coping strategies

Alternative coping strategies played an important role in preventing relapse after stopping self-harm. For instance, in a study carried out by KOOL2009 almost all participants still felt the urge to self-injure at certain moments and had developed specific strategies to respond to these moments. One respondent said:

It is still a daily struggle, but I am taking on the challenge every day. I am like: I know what I am doing this for and it is worth it.

The respondents identified the following strategies: (a) expressing emotions directly, (b) physical exercise, (c) creative activities and (d) establishing a connection with others. It was important that these alternative activities should control precisely those emotions for which self-harm was previously adopted as a controlling strategy. For example, a respondent who tried to control her aggressive impulses through self-harm indicated that ‘blowing against a piece of fluff’ or pulling on a rubber band hardly had any effect. However, she could vent her aggression in an acceptable manner by kicking a cushion (KOOL2009).

Similarly, in another study carried out by SCHOPPMANN2007 in Germany, participants engaged in many alternative strategies to end feelings of alienation such as jogging, physical labour, listening to loud music and forms of expression that did not require verbal communication, for example painting. However, all participants stated that self-harm was the most effective way to end the agonising experience of alienation.

I think jogging would give me the same relief but cutting is easier and acts much faster and that is what I want in these moments – a prompt relief.

On the other hand, it is important to note that the use of alternative coping strategies was not always found to be helpful and some believed that alternatives were only temporary solutions (CRAIGEN2009):

There were periods where I managed to assuage the need to self-injure by picking up another healthy or acceptable behaviour, at the urging of a counsellor… if that makes sense. It didn't really last too long because they were terribly simplistic behaviours that were sort of short-term answers.

Young people's experience of self-harm

A study carried out on several US students (MOYER2007) unveiled some important findings in relation to the origins of self-harm in young people. Most learned of self-harm from their friends; they had asked a friend about it or had a friend recommend self-harm to them. The expectations and mental stress placed on these young people often became overwhelming, leaving them feeling as though there was no escape – with the exception of self-harm (MOYER2007). DORER1999 found that participants had varying reasons for overdosing. The majority of participants reported that when they took the overdose they wanted to die. Other reasons for overdosing were to escape from painful feelings, to communicate how bad they felt, or for hospital admission to escape difficult family situations. This supports the idea that the motivation behind self-harm is unique to the individual and is fluctuant in nature.

Regarding the consequences of self-harm, some young people reported that relationships within their family had improved and others felt that it had led them to develop better coping skills (DORER1999). An earlier study by BURGESS1998 found that most young people felt that overall the overdose and its aftermath had resulted in improvements in their lives; whereas others felt that it had made things worse for them. When asked how they felt in the aftermath of the self-harm behaviour, many reported feeling ashamed about what they had done. However, almost half of the participants felt that they would probably or definitely take an overdose again in similar circumstances.

In a study carried out by SINCLAIR2005, young people with a history of self-harm who no longer harmed themselves talked about their experiences in terms of lack of control over their lives and their uncertainty within their family relationships. Specifically, the core finding that emerged from these young people's experience of stopping self-harm was ‘the resolution of adolescent chaos’. For these participants, the defining difference that led them to stop their self-harm was the resolution of their lack of control within the family structure. Family life was recounted as not only chaotic but also also failing to provide any validation of their experiences at the time. For many of the young people interviewed, the sense of autonomy and independence achieved after breaking away from their family allowed them to separate themselves from their unpredictable family environments, providing them with a sense of purpose and responsibility. This gave them enough control to manage their responses to distress in a less self-destructive way (SINCLAIR2005).

Experience of self-harm in people with mild to moderate learning disabilities

FISH2008 examined the experiences of people with mild to moderate learning disabilities who self-harm. The common finding throughout the interviews was healthcare professional/service user relationships (both negative and positive aspects) and the way they affected individuals' ability to cope with stress, emotion and urge to self-harm. Service users reported that healthcare professionals could make them feel that they did not care when they were slow to respond to their distress, were dismissive of their personal problems or were perceived to be uncaring (FISH2008):

I feel that nobody cares, and when you talk to them, it's ‘Oh, wait a minute’. And when the minute comes it's, like, ‘I've not got a minute now, I'm doing this now’ or ‘I'm doing that now’. In the end you just go in your room and do [self-injure], instead of saying I feel like doing it…

Service users also identified a lack of control over their treatment as a negative aspect of the relationship:

… I wanted to go to a meeting that's discussing my future or what possibly could happen in my future. And they said no, clients are not allowed. I think that's badly wrong …

Conversely, service users reported that when healthcare professionals spent time with them one-to-one, demonstrated a caring attitude and, most importantly, recognised their individuality, this had a positive effect.

Service users and some healthcare professionals agreed that self-injuring should be allowed. Service users viewed it as a right and also explained that it was futile to attempt to stop self-harm behaviour:

I think as a self-harmer you should be entitled to what you do to your body as long as it's hurting no-one else's but your own. I feel that I should be entitled to cut up as much as want and when I want. I do feel there are too many people laying the law down as far as I'm concerned as my self-harming.

The feeling of being punished was also highlighted by service users. They explained that this lowered their self-esteem and, as a consequence, made them more likely to self-harm:

Well when I've cut up in the past there's your punishment of putting you on a level three for a few months until things get better. That's what they've always done with me. They punish me by putting me on a higher supervision level, increase my supervision level to level three. I'd feel bad, they didn't trust me, once I'd cut. I'm alright, I wouldn't do it again cos I feel better.

Experience of self-harm in males

Only two studies examined the experience of self-harm in males (RUSSELL2010, TAYLOR2003). With regard to reasons behind self-harm, they were similar to those provided by women, with early childhood experiences such as neglect and abuse, experiences of rejection in adulthood, and as a coping strategy and alternative communication method being frequently reported (TAYLOR2003).

As with women, guilt and shame were frequent emotions expressed by the men interviewed with one man stating that he felt ‘very ashamed’ of his self-harm and another that he was ‘punishing myself’ for it. As well as limiting the degree to which men seek support for their self-harm, this shame may perpetuate the problem by damaging their self-esteem further (TAYLOR2003).

RUSSELL2010 examined the experience of self-harm in four males and found the inability to maintain satisfaction or contentment was a central theme portrayed by all participants. One participant (RUSSELL2010) illustrates the potency of this issue in the following statement:

Like you were supposed to enjoy a party or you're supposed to enjoy a holiday. At the time you do, but underneath, you didn't, ‘cause I always end up in hospital afterwards. My brothers said, oh you're supposed to enjoy it, it's been paid for and that, so I did, but I didn't, ‘cause I used to destruct, but I couldn't …. I couldn't … separate them, happiness and sadness, erm, so I was out there enjoying it, I was enjoying it, but it wasn't lasting, it was like it was a short term thing…

All participants talked about the differences between men's self-harm and women's, as if men's was somehow more real:

I think a lot of men do it, whereas a lot of women do it for sympathy, a lot of men do it out of anger and upset and ….

Likewise, in a study carried out by TAYLOR2003 the differences between men and women who self-harm was also a prominent theme. Firstly, men tended to injure themselves more severely than women and had less concern about bodily scars. They were more likely to engage in public and violent self-harm, such as punching themselves or a wall or breaking bones.

The concept of masculinity and the misconception that men should be powerful and should conceal their weakness was another prominent theme (RUSSELL2010, TAYLOR2003). Many of the interviewees felt that the expectation that men are ‘stronger’ and ‘able to cope’ was a particular issue for men who self-harm. One participant in particular felt that ‘to be seen as a man, you have to be seen as not weak’ (TAYLOR2003). Whilst they may try to conceal these feelings, they are likely to find expression in some way. As a result they may resort to self-harm as an expression of their underlying emotions (TAYLOR2003).

4.4.5. Access and barriers to services

In the review of the literature, several findings emerged under the broad heading of ‘access and barriers to services’ for people who self-harm, including stigma and negative attitudes of healthcare professionals; barriers to help-seeking behaviour were also examined. There were 14 studies in which the themes of access and barriers to treatment were apparent (BOLGER2004 [Bolger et al., 2004], BROPHY2006 [Brophy, 2006], BURGESS1998, BYWATERS2002, CAMGAN1994, DOWER2000 [Dower et al., 2000], HARRIS2000, HOOD2006 [Hood, 2006], HORROCKS2005 [Horrocks et al., 2005], KREITMAN1973 [Kreitman & Chowdhury, 1973], NADA-RAJA2003 [Nada-Raja et al., 2003], RAY2007, RISSANEN2009 [Rissanen et al., 2009], SCHOPPMANN2007).

Accessibility

Three studies reported findings that were relevant to the accessibility of services (BOLGER2004, BURGESS1998, BYWATERS2002). Several participants felt it was essential that services be as accessible as possible by being staffed 24 hours a day, providing walk-in services and minimal waiting times for appointments (BYWATERS2002). Furthermore, several respondents interviewed explained that they wished they had known about the types of support services available to them before they self-harmed. For instance, many study participants were unaware of local services that provide support to individuals who self-harm (BYWATERS2002). Finally, it was also suggested that services offer alternatives to clinical support such as having nurses working in the community who can treat self-inflicted wounds (BYWATERS2002).

Young people's experience of accessibility to services

Young people, in particular, had a variety of suggestions about how services could be made more accessible for young people who self-harm. It was suggested that services be centrally located. Walk-in services and telephone access as well as decreased waiting time for appointments were recommended. Others wished that prior to taking the overdose they had access to the type of professional help that they had subsequently received (BURGESS1998).

Barriers to treatment

Six studies reported findings that were relevant to barriers to treatment (BROPHY2006, CAMGAN1994, DOWER2000, HARRIS2000, HOOD2006, HORROCKS2005). CAMGAN1994 revealed many problematic issues with regard to communication with professionals. Specifically, inadequate sharing of information by healthcare professionals with service users was perceived as an important problem. Most respondents stated that there was a need for better understanding and more assistance by nurses regarding individual difficulties with problem solving. HARRIS2000 found that participants often felt that they were maltreated because their injuries were self-inflicted.

Other important barriers to treatment were highlighted by HARRIS2000. Firstly, some service users said treatment rooms did not provide privacy, either due to the location of treatment, for example in a waiting room, or lack of respect given by healthcare professionals, for example ‘showing off’ service users to other members of staff. Finally, some people felt that their need for help was not acknowledged, particularly after no aftercare was arranged. Many said they were not given the opportunity to play an active role in their treatment. In particular, service users perceived that treatments had often been given or forced upon them without any information as to why this was being done. Some respondents explained they had received contact numbers for services at hospital but upon ringing, no one was there to answer their call. Likewise, service users often felt a lack of rapport between themselves and healthcare professionals and a general lack of support (HORROCKS2005).

Young people's experience of barriers to treatment

In a UK-based study on young people who self-harm (BROPHY2006) some respondents who had previously presented to hospital due to a self-harm episode felt ostracised by healthcare professionals who, it was felt, were ‘act[ing] as if to say “not you again”’. One study (DOWER2000) provided some insight into the reasons behind early termination of follow-up care. Some felt they had received as much benefit from treatment as possible, were uncomfortable with the professional providing care or the location of the care, or the care they received was deemed unhelpful. Other young people reported that psychiatrists were often unavailable for continued care because they were too busy or had left the service during the young person's treatment period (HOOD2006).

Help-seeking: attitudes towards and barriers

Five studies looked at attitudes and behaviour with regard to help seeking for self-harm in adult populations (HUNTER [Hunter & Cooper, unpublished], KREITMAN1973, NADA-RAJA2003, RAY2007, SCHOPPMANN2007). KREITMAN1973 recruited individuals attending hospital for the first time after a suicide attempt in Edinburgh and carried out individual, semi-structured, face-to-face interviews to investigate attitudes to help-seeking after completion of formal psychiatric examination. Most of the participants were in favour of seeking help, with the most ‘acceptable’ form of help being specialist services followed by ‘anyone available’, ‘no one’ and, lastly, relatives. However, a quarter of participants maintained that seeking help for personal problems was not an acceptable form of behaviour. It must be noted, however, that this study was carried out in the 1970s and the attitudes towards help-seeking and services may have changed since then, placing limitations on the generalisability of the findings reported.

A cohort study carried out on individuals who self-harm in New Zealand examined help-seeking via semi-structured interviews with young adults (NADA-RAJA2003). The main reasons given for seeking help were psychological aspects related to self-harm, specifically for self-harm or for an injury relating to self-harm behaviour (NADA-RAJA2003). Moreover, among the small percentage of services users that did seek help (only 8%), approximately one third reported attitudinal barriers when seeking help from professionals. In a study carried out by HUNTER, participants' lack of continuity of aftercare impacted negatively on their attitudes towards future help-seeking and towards themselves.

Stigma also emerged as an important barrier to seeking help and disclosing to others about their self-harm (RAY2007). While all women reported trying to hide the fact of their self-harm, some alluded to the hidden wish that others would acknowledge their distress and care enough to reach out to them in a supportive and accepting manner. The women appeared quite inhibited in their ability to reach out to others for fear that others would not understand and for fear that they would be labelled as attention seekers. Some spoke of a lack of parental understanding in response to their distress. Others expressed the desire to protect their loved ones from their pain (RAY2007).

Finally, for those who did not seek help, attitudinal barriers such as thinking that they should be strong enough to handle the problem on their own, that the problem would resolve itself and that no one could help, or being too embarrassed to discuss it with anyone, were factors. Confidence and trust were also important conditions for seeking and accepting help (SCHOPPMANN2007). The participants said that they would not ask strangers for help or support (for example, an unknown nurse during a night/weekend shift) because for them strangers were equivalent to someone who could not do anything and someone from whom help was not to be expected.

Young people's experience of help seeking

Only one study (in Finland) examined the experience of help-seeking and barriers to reaching out for support in young people (RISSANEN2009). Three main categories emerged from the analysis: the helpers, factors contributing to help and help-hindering factors. From the viewpoint of young people, any person who knew about their self-harm could be a helper, while adults were felt to be duty-bound to intervene. According to the young people in this study who self-harmed, there was an insufficient reliable presence of parents at home. They also felt that school and healthcare personnel could have done more to intervene. Factors that enabled help-seeking were: becoming conscious of being in need of help; knowledge of self-harm as a phenomena; knowledge of the available help for self-harm; a caring environment; and, finally, support from friends, peers and parents. Other helpful factors were: practical intervention for common problems for young people; early intervention; learning to discuss self-harm, emotions and difficult experiences with someone; and demonstrating genuine care for the young person.

Factors hindering help-seeking were the following: lack of awareness of being in need of help, an inability to seek help, emotional factors, lack of awareness of self-harm or a lack of awareness of the help available for self-harm. Additional unhelpful factors were unresponsiveness to self-harm, underestimating or overstating the meaning of self-mutilation, remaining silent about self-harm, negative emotional reactions of adults or over expectations of the capability of young people to fend for themselves. Knowledge of self-harm as a phenomenon seems to be very important. It emerged in different forms in all three main categories. In fact, knowing facts about self-harm or its existence seems to be a prerequisite for a young person who self-harms to become conscious of the need for help and then to seek help (RISSANEN2009).

Overall, several participants pointed out the importance of accessibility of services especially for young people and the need for inclusion in planning of their treatment. Common barriers to accessing treatment or engaging fully in treatment were stigma, communication difficulties, negative attitudes of healthcare professionals and privacy issues.

4.4.6. Experience of treatment for self-harm

In this review common findings emerged under the broad heading of ‘experience of treatment for self-harm’, including experience of psychosocial assessment, experience of psychiatric services, experience of constant observation, experience of psychological treatment and experience of medication.

Experiences of psychosocial assessment

Four studies investigated the views of service users with regard to psychosocial assessment (CROCKWELL1995, HORROCKS2005, HUNTER, WHITEHEAD2002 [Whitehead, 2002]). From these four studies it was clear that not all service users received a psychosocial assessment while in hospital, and, for those service users that did, their experience varied across studies.

Service users' insights and anticipation of the psychosocial assessment, and the way in which they interpreted healthcare professionals' management of their assessment, had a large impact on their appraisal of the assessment (CROCKWELL1995, HUNTER). Participants had a more positive experience of assessment when they were given information about it beforehand (CROCKWELL1995). Moreover, the relational aspect of assessment was a key determining factor in service users' appraisal of assessment, highlighting the importance of the therapeutic relationship in the provision of care (HUNTER). Participants experienced assessment positively when it involved a beneficial, hopeful engagement with healthcare professionals and when it involved the restoration of hope or the possibility of change in their circumstances (HUNTER, WHITEHEAD2002). Another important aspect of assessment was the opportunity to talk to someone (HUNTER), with the majority of participants finding this a valuable experience. However, not all participants felt they were given adequate opportunity and it was not always evaluated as a positive experience. Despite this, most participants expressed a desire to speak to someone about their problems, which gave them an opportunity to start thinking about the reasons behind their self-harm.

Conversely, assessment was experienced negatively when the participant felt devalued by the assessor, was treated in a judgemental manner or they felt they were not understood. Similarly, service users who reported being disappointed with their psychosocial management found fault primarily with their lack of involvement in decisions or when the assessor did not give them sufficient time to talk during the assessment (WHITEHEAD2002):

OK. The first interview was just ‘so tell us what happened’ and he wrote it up and said ‘um hm, um hm’ and wrote notes and he didn't look at me but he was nodding and looking at the other guy. And they looked at each other and exchanged nods. It was very factual like ‘So what did you take?’ and ‘What happened at the house?’ Um, you know I felt like saying ‘I can understand English, doctor’. It was just very factual. They filled out their little form and that was it.

Likewise, in the study carried out by HUNTER another negative aspect of assessment seemed to be the experience of not being understood, or when healthcare professionals did not seem interested or genuinely engaged in trying to understand the individual reasons behind their self-harm. Furthermore, when participants experienced assessment as invalidating and when assessment seemed to lead nowhere and offer no hope for change it was experienced negatively and could compound the participant's initial feelings of hopelessness, powerlessness and low self-worth. This study showed that assessments may not have the same salience and importance for users and professionals because assessments are just one single moment in a person's life that is likely to be filled with ongoing difficulties.

Experiences of psychiatric services

Eight studies examined experiences of psychiatric services (ARNOLD1995, BROPHY2006, BYWATERS2002, CARDELL1999 [Cardell & Pitula, 1999], DORER1999, HUME2007, PITULA1996 [Pitula & Cardell 1996], TAYLOR2003). Individuals admitted to psychiatric wards had mixed reactions to their care. The admission to a psychiatric ward was often described as frightening and led to a sense of diminished control over their lives (HUME2007). One 34-year-old male said:

I speak positively about it now, but back at the time it was terrible. Locked wards, psychopaths; they used straightjackets and straps.

Moreover, service users often felt a lack of rapport between themselves and healthcare professionals (ARNOLD1995). One participant described a psychiatrist as ‘cold, clinical, [and] impersonal’ (ARNOLD1995). In a study carried out by TAYLOR2003 several of the male participants had experienced negative incidences with psychiatrists. Comments included ‘I don't see them unless I absolutely have to’ and ‘I made a firm decision not to ever see him again’. The only positive assessment of support from a psychiatrist was a man who said of his second psychiatrist:

She seems to generally care about my wellbeing. I value her opinion and she is quite nice.

Service users also explained that while on a psychiatric ward they sometimes felt the need to act in exaggerated ways, and even self-harm, to get the attention of staff (BYWATERS2002).

Only two studies (both from adult populations in the US) looked at the experience of constant observation whilst on a psychiatric ward (CARDELL1999, PITULA1996). In the study carried out by PITULA1996 on suicidal inpatients, service users' initial responses to constant observation ranged from discomfort to surprise or anger. On the other hand, study participants reported feeling safe because of the physical presence of observers who could prevent them from responding to self-destructive impulses. Participants reported that the lack of personal privacy was the most distressing aspect of constant observation and service users said that constant observation became almost intolerable after 30 to 36 hours.

In a more recent study carried out by CARDELL1999, the majority of participants expressed positive feelings toward the observers, particularly when they perceived them as friendly and willing to help. Moreover, a significant proportion of service users reported that their dysphoria, anxiety, and suicidal thoughts were decreased by observers who were optimistic, who provided distraction with activities and conversation and who gave emotional support (CARDELL1999). Furthermore, the participants experienced uncomfortable and at times distressing feelings relating to observers' attitudes or behaviour, such as a lack of empathy, a lack of acknowledgement, failure to provide information about constant observation, lack of privacy or personal space and a feeling of confinement. It is clear from these two studies that the positive attitude of healthcare professionals (including empathy and an acknowledgment of the person as a unique individual), providing information about the function of constant observation and an effort to combat privacy issues are essential in improving service user experience of constant observation. However, it should be noted that this study was carried out in the US and the implementation and experiences of constant observation may differ in the UK, thus limiting the generalisability of the findings reported above.

Young people's experience of treatment

A UK study reported findings concerning management of young people on a psychiatric ward (BROPHY2006), where confiscation by staff of objects that could be used to self-harm increased their feelings of a lack of control and contributed to the desire to self-harm again. Another study carried out on young people and adults (BYWATERS2002) echoed these findings in that most felt they were merely being watched and did not receive any sort of therapy for their self-harm. Several young people who presented at hospital after a self-harm episode (HOOD2006) said they experienced a sense of relief upon being provided with aftercare at a community mental health service. Some women communicated a fear of being on a mixed ward while some older young people had negative experiences of being placed on adult wards. However, this was a very small sample size of only ten participants of whom five were female.

In contrast to the negative attitudes reported above, DORER1999 found that the majority of young people rated their contact with child and young people's psychiatric services as positive or very positive. However, almost one third of young people rated their stay as negative or very negative. In relation to the benefits of psychiatric consultation, both studies established that the opportunity of ‘talking through problems in detail with another person’ was an important aspect. Despite this positive experience, some service users disliked having to tell their story to several different staff members (DORER1999).

Experience of psychological treatment

Seven studies examined the experience of psychological treatment for those who self-harm (BURGESS1998, BYWATERS2002, CRAIGEN2009, CROCKWELL1995, HOOD2006, HUBAND2004, HUME2007).

HUME2007 found that service users' experiences of therapeutic interventions were strikingly diverse. There was a clear preference for specialist community-based interventions that focus on the provision of immediate aftercare and an acknowledgement that the management of self-harm may not necessarily involve its prevention. In a study carried out by BYWATERS2002 many participants welcomed the opportunity to discuss problems associated with their self-harm with a mental health professional. The drawbacks of psychological treatment were few from the participant's perspective; however, common disadvantages reported were the retelling of their story and opening up to reveal their emotions especially to a stranger. Others were frightened that telling someone their problems would intensify their distress or bring back memories they were trying to repress. Some respondents (BYWATERS2002) appreciated psychological therapy, presumably in a group setting, because it put them in touch with other people like them:

The fact that you talk to other people and there were other people who felt exactly the same as you, no matter what state they were in, no matter what part of life they came from, there were people that felt like you. It felt good to feel that you weren't on your own.

Conversely, in a study carried out by CROCKWELL1995 the stigma associated with an appointment with a psychologist or psychiatrist for some participants was too much to bear and caused individuals to miss their appointments.

I hated it. Couldn't stand the psychiatrist… Just thought ‘I must be crazy’ that's all that came into my head. That's what I thought: ‘if you see one of them, you're crazy’.

CRAIGEN2009 examined the counselling experiences of ten young adult women with a history of self-injurious behaviour. For those interviewed, the most helpful counsellor behaviours were respectful listening, understanding and acting as a friend. Furthermore, the women also discussed behaviours that they viewed to be unhelpful, which included counsellors who failed to demonstrate understanding and counsellors who forced uninvited ideas upon them.

Many of the participants noted that simply talking during sessions was helpful. Almost without exception, the participants considered no-harm contracts ineffective (CRAIGEN2009):

I won't make a promise unless I can keep it. Or, I try not to. I need to feel a deep sense of obligation to that person and that particular cause to make that promise. So that wouldn't have worked for me.

Another alluded to the potential dangers of using no-harm contracts. She suggested that counsellors need to provide service users with new improved coping skills before making them stop using their old coping skills. In terms of the focus of treatment, participants did not like counsellors putting too much emphasis on the self-injurious behaviour. Rather, they reflected about the value of counselling that targeted the underlying issues. Asked what they would tell counsellors working with college-aged women who self-injure, most of the women emphasised that it was important for the counsellor to be nonjudgmental. One said:

I think the bottom line is to just try not to alienate them further. Because there is already the knowledge that what you are doing is very bizarre and not normal, and you need to be careful of inadvertently stigmatizing them further.

An additional study carried out by HUBAND2004 found that psychotherapy or counselling was generally experienced as helpful. However, several participants reported ‘drifting off and ‘losing the plot’ in their therapy sessions, or complained about their therapist enduring silences during which they found it hard to remain focused.

Young people's experience of treatment

BURGESS1998 found that most young people appreciated short-term therapy, mostly on an individual basis. Both young people and their parents appreciated ‘talking to someone on the outside’ with whom the family had ‘no emotional attachment’ (HOOD2006). However, some young people felt that talking did not make a difference to the way they felt:

I've talked and stuff and I still don't really feel a hell of a lot better… Cause you know sometimes even just talking about it doesn't really help, sometimes just a hug or something would be cool, more helpful than sitting here talking about it… The talking and things didn't really help me too much. I don't feel that it changes anything… It just seems to scare a person, that's about it.

Several participants described situations in which they felt that their therapist did not understand them. These feelings hindered the resolution of the young person's problems:

I mean there's lots I'd like to have happen in terms of, like, client and counsellor relationship.… I really still don't feel she quite understands me… I just feel like a lot of times what I say isn't, it feels like it's not valid

Other participants explained that their relationship with their therapist made them feel ‘acknowledged’, ‘heard’, ‘cared for’, ‘reassured’, ‘supported’ and ‘understood’ (HOOD2006). A positive relationship between service user and therapist was often associated with perceived positive outcomes by the service user.

Overall, the experience of psychological therapy was mostly positive in nature; however, there were some drawbacks such as the stigma associated with receiving therapy and retelling of their story.

Experience of medication

Four studies examined service user experience of medication (HOOD2006, KOOL2009, SHAW2006, SMITH2002 [Smith 2002]). HOOD2006 examined the perspective of young people recruited from community mental health centres in New Zealand with regard to their feelings about medication, and established that views were mixed. The majority (n = 6; 60%) of young people interviewed were prescribed antidepressants as part of their management. Some service users reported (HOOD2006) that medication helped them cope with their underlying problems; however, not all participants had a positive attitude towards medication especially at the beginning:

I absolutely hated taking my medication when I first started a couple of years ago. Then it became part of my life and a part of being able to live so I just don't get all down about things… I don't know how it works but I mean I know the medication's always an option for me now so if things start to get bad and stay bad then it's here.

Some young people felt that the medication did not work for them and had many undesirable side effects.

[B]eing on medication I didn't deal with things or just had trouble with my memory for a while. I didn't know what day of the week it was… I just had no idea where I was or what was happening…

In another study carried out on adults (SMITH2002) in the UK a more negative view of medication was observed with service users reporting that they felt that medication was seen as a means of shutting them up. Similarly, in a study carried out in the Netherlands (KOOL2009), many participants felt that their emotions were subdued by the medication and as a result they lost their sense of connection with themselves and others. On the other hand, some participants found medications effective in addressing symptoms such as anxiety (KOOL2009, SHAW2006).

4.4.7. Engagement with services and suggestions for service improvement

Aftercare for self-harm can include treatment by a wide range of professionals: psychologists, psychiatrists, social workers, nurses, community services and GPs. Seventeen studies reported findings that were relevant to engagement with services and suggestions for service improvement (ARNOLD1995, BOLGER2004, BROPHY2006, BURGESS1998, BYWATERS2002, CAMGAN1994, CROCKWELL1995, DOWER2000, HOOD2006, HUBAND2004, RAY2007, REECE2005, SCHOPPMANN2007, SHAW2006, SINCLAIR2005, SMITH2002, WHITEHEAD2002).

Common suggestions for service improvement included enhanced continuity of care and specialised training and education on self-harm, along with the provision of better information about self-harm for service users and carers (ARNOLD1995, BYWATERS2002, CAMGAN1994, DOWER2000, HORROCKS2005, WHITEHEAD2002). The importance of tact and respect for service users' individuality was another aspect of care that people expressed as necessary for service improvement (CAMGAN1994, WHITEHEAD2002). What emerged from these studies was that an important factor in determining whether a person's experience of services was helpful was the attitude and approach of the professionals involved. Most of the service users' frustration and discontent with services was caused by the negative or flippant attitudes of healthcare professionals, whether this was expressed in terms of disapproval, disinterest or failure to provide any real help.

Where people felt positive and satisfied with services, this was usually due to the compassionate support offered (ARNOLD1995). Likewise, BYWATERS2002 found that, overall, service users were more satisfied with their treatment when they felt that the professional was genuinely concerned about them, respected them and did not try to belittle them. Moreover, service users said they wanted healthcare professionals to give them more responsibility for their own management (BYWATERS2002, WHITEHEAD2002). Specifically, the need for clinicians to understand the problem individuals faced rather than focusing on their physical disfigurements was a frequent plea (BYWATERS2002):

Look at the individual, not the harm. Look at the person beyond the scars. Scars aren't important. It's the person that did them that's important.

Several service users felt that hospital staff failed to address the underlying issues and did not have sufficient knowledge about or training in caring for people who self-harm (ARNOLD1995). Many service users suggested that more information should be provided to them about self-harm and its prevalence. In particular, information on how common self-harm is would be helpful. One participant (ARNOLD1995) felt this was important to reduce the shame and stigma associated with self-harm:

I used to feel abnormal and weird as I thought I was the only person to do this. Information could have helped reduce the shame and isolation this caused me.

Women in another study carried out by REECE2005 expressed a need to be accepted and to be listened to. In particular, they articulated a desire for healthcare professionals to ‘reach out’ to them as individuals and give them an opportunity to express their ‘inner torment’ and pain. More recently, Horrocks and colleagues (2005) found that many service users experienced long delays before receiving any aftercare treatment and this led to many feeling disoriented or abandoned. Participants from this study also underlined the importance of professionals focusing on their underlying issues rather than the self-harm itself:

It would have been better if someone had understood – the psychological side of it they didn't seem bothered about, they should not have put me down for what I did but tried to talk to me about it and help me.

In a German study (SCHOPPMANN2007) participants conveyed the importance of personal relationships and confidence in the intervening person, especially if physical contact is involved.

If there would be someone with whom I have no trusting relation I would of course not allow a touch, I would not say a word, I would not show a feeling. Nothing! Only someone I trust.

Similarly, in a study carried out by HUBAND2004 the women reported on a number of management strategies and their helpfulness. ‘Having a long-term relationship with one key worker’ and ‘expressing feelings about the past’ were rated overall as the most helpful methods of managing their self-wounding. On the other hand, ‘being taught relaxation techniques’ was experienced as the least helpful. Indeed, many reported that relaxation actually had the potential to make their self-harm worse, but they had been unable to convince healthcare professionals that this was so. A Canadian study conducted by CROCKWELL1995 on women who had engaged in multiple suicide attempts by overdose established that some participants were satisfied with their aftercare management because they were given the opportunity to talk about the issues that contributed to their self-harm episode. However, some respondents (CROCKWELL1995) said that they felt they were not given a sufficient amount of time for their appointments:

[W]hen I left he gave me a prescription for anti-depressants so we hadn't talked, he didn't once say it's OK or give me any bit of feedback. He just wrote me out a prescription. I'd say I was only in there about 15 minutes, 20 at the most, and he wrote me out a prescription for antidepressants and sent me on my way.

Similar to women, many men prioritised the opportunity to talk about their self-harm and to feel understood by healthcare professionals (TAYLOR2003). In contrast, some service users explained that the lack of opportunity to become involved in discussions about their care made them ‘feel disrespected’. One man in particular commented that his team worker had:

never asked questions like you've asked me… [s/he] never asks me about self-harm, even after times I've done it.

This had left him feeling that his self-harm was ‘not taken seriously’, which increased his anger and propensity to self-harm again (TAYLOR2003).

In a study carried out by RAY2007 the importance of professionals taking self-harm seriously and acknowledging the depths of the person's pain was highlighted. In particular, the women expressed a preference for practitioners who were direct, proactive and genuine. For most women, negative experiences with therapy appeared to stem from perceptions of therapists as judgmental, unable to relate and lacking in knowledge about self-harm (RAY2007).

Issues of power and control were important in relationships with counsellors and therapists. Effective therapeutic relationships seemed to be characterised by an equal partnership, with participation in the process of therapy such as choosing when and how to disclose abuse (CURTIS2006). Similarly, the confiscation of objects that could be used to self-harm in many cases contributed to a sense of lack of control and an increased desire to self-harm in the future (SMITH2002).

In another study (HUME2007) participants were often provided with the contact telephone numbers of helping organisations in place of, or in addition to, a referral. Although the majority of participants made use of these numbers, some explained they felt uncomfortable initiating their own aftercare by telephoning these organisations. Moreover, several participants in this study were anxious to impress on their friends, family and, in some cases, professionals the importance of managing self-harm rather than its prevention.

Furthermore, the desire or willingness to engage with a service or source of support for self-harm was not uniform. It was reported that those who were unwilling to engage with treatment were more likely to have been harming themselves over a long period. Similarly, service users who reported a longer commitment to a particular intervention tended to recount feeling satisfied with this service. In contrast, experience of a large number of different interventions was associated with less commitment to, or perseverance with, a particular intervention (HUME2007).

Young people's experiences of engagement with service and suggestions for improvement

There were many suggestions by young people for improving engagement and service delivery. Firstly, the importance of having services that are informal and staffed by people with experience of mental disorders was raised as an important issue (BOLGER2004). Moreover, in studies of young people conducted in the UK (BURGESS1998, BROPHY2006, SINCLAIR2005), Ireland (BOLGER2004) and New Zealand (HOOD2006), the opportunity to talk was an important aspect contributing to their positive experience of aftercare. In particular, young people hoped that healthcare professionals would (BROPHY2006):

…listen and respond in a natural way – showing concern and wanting to support you.

However, not all participants welcomed the opportunity. Like adults, the need for young people's inclusion in the planning of their treatment was highlighted as an important issue for aftercare (BOLGER2004). Over half of the participants could think of other types of help that they would have liked to have received but had not. These included admission to hospital, individual rather than family appointments and specific help with school problems. Furthermore, respect for the young person and the opportunity to build trusting relationships with professionals were important aspects identified as a major factor in their receptiveness to an intervention (CROCKWELL1995, SINCLAIR2005). These needs were expressed by one individual as follows (CROCKWELL1995):

Listen to what they're saying, believe in them and make them feel like you're there for them. I know one thing. I really wanted people to be there for me; if they were, it would have made me feel a lot better. I'd say it would help other people too. And don't take it lightly, that's another thing. Some people just take it lightly and go ‘that's another one of those teenage phases they're going through’ or something like this but it's not. It's real!

In a US study conducted on female college students (SHAW2006), core aspects of treatment that women described as helpful in their passage toward stopping self-harm included an empathic relationship with a professional who sees strengths beyond diagnostic labels and provides an opportunity to discuss self-injuring behaviour. In addition to the relational features, women also welcomed the helpfulness of pragmatic interventions such as verbal plans for dealing with urges to self-injure and concrete methods of managing emotions. Many of the participants expressed a desire to make sense of their self-harm and explore the logic of their behaviour, but felt that this was lacking in their interventions (SHAW2006).

4.4.8. Social support

Eight studies investigated the needs, benefits and drawbacks of social support, which includes web-based support or information (BAKER2008), support from family or friends (BOLGER2004, HOOD2006), community support groups (CORCORAN2007 [Corcoran et al., 2007]) and support from other people who self-harm (HUME2007) in helping to cope with self-harm behaviour. Overall, participants emphasised the importance of social support in dealing with their self-harm. In particular, many service users expressed a desire for mutual support and shared understanding from others who have harmed themselves (HUME2007).

Feelings of isolation and alienation were common among service users (CAMGAN1994, HUME2007, RAY2007, SCHOPPMANN2007). The notion of being alone surfaced as a significant stressor with self-harm emerging as an antidote and a reaction to loneliness (RAY2007). One interviewee (SCHOPPMANN2007) spoke about how there was no one she could relate to and no one she could trust:

I think I felt deserted from everybody. Here you are and nobody is there for me. I couldn't talk to anybody.

For many service users, isolation and being alone led to feelings of increased restlessness, fear, and anxiety. Self-harm helped to deal with these feelings and to get some relief (SCHOPPMANN2007):

I think when I am outside I have social contacts and when I am here, left on my own, perhaps it is the fear of being alone, yes, to be able to stand this, to feel that there is someone, that I am not alone, to feel myself perhaps.

CORCORAN2007 examined the role of support groups in women's management of their self-harm and possible associated difficulties. Belonging emerged as one of the primary feelings experienced, creating a sense of acceptance and feeling welcome, particularly valued by new members. Belonging was fostered by the anonymous and voluntary nature of the group. Acceptance of differences encouraged participants to express themselves openly and contributed to the development of self-acceptance.

…if I can't accept myself as someone who self-injures or maybe I will get to a stage of someone who has self-injured, you know I've got physical scars, …how am I going to expect the rest of the world to?

Sharing experiences emerged as a valued aspect of group-membership, which involved a sense of ‘genuine empathy’ derived from all participants having self-harm in common. Participants often realised that, contrary to previously held beliefs, their experiences were shared by many others, which increased feelings of self-acceptance, thereby reducing feelings of isolation and subsequent desire to self-injure arising from such feelings. Despite this, many participants felt that the depth of sharing could be compromised by the low frequency and time restraints of meetings, sometimes preventing deeper exploration of issues. ‘Autonomy’ emerged as important, primarily in the group being ‘led and run by the participants themselves’:

… it's power sharing … we're equal … we are … a group of women … tackling painful issues … that we have had to deal with … so we are strong women,… we don't feel strong all the time but we are equal,… and the empathy, you couldn't get it … from … mental health professionals…, there is a power difference.

‘Positive feeling’ emerged as a common experience and led to improved mood and light-heartedness, particularly in relation to their self-harm:

We have a laugh… it's not all serious and sometimes I think it can be really healthy to just have a laugh… not take it all too seriously which… [is] hard to do if you're on your own or with people who are worried.

Participants expressed numerous individual changes resulting from group-membership, the most common being increased self-confidence/self-esteem. Moreover, many participants credited group-membership with reduced self-harm. Other changes attributed to group-membership included development of clearer thinking, tapping into inner strengths, discovery of new talents and the ability to do things they had previously been unable to do:

There have been days when I've felt like self-harming and thought I don't want to go to the group, and I've gone and I have come away and I've not wanted to self-harm because it has given me a chance to express myself instead.

A study conducted in the UK examined the impact of self-harm related websites as a form of support for young adults who self-harm (BAKER2008). All participants wrote about understanding and empathy when they described what benefit they derived from using the self-harm and suicide websites. By understanding others online, it is possible that website users may feel helpful and useful, and several participants gave this as an important reason for using the sites. Another theme that arose from the websites was that they were regarded as if they were communities. Participants stated that they provided emotional support, valuable information and advice, and, most importantly, friendship (BAKER2008). These websites were an important coping strategy for those who self-harm with a number of participants stating that their use of self-harm and suicide websites served the same function. Interacting with fellow users was reported as a preferable alternative to self-harm and suicidal behaviours. For some participants, this led to a reduction in the frequency of these behaviours. Participants also wrote about the sites as contributing to their recovery. One reported that the sites had facilitated change ‘better than any therapy’:

Since using the boards to tell people how I felt and stuff I definitely think the frequency of my s/h [self-harm] has decreased a lot. I know that if I feel I need to do it I can go on the boards or on msn and someone will be there who I can talk to, and get my feelings out as well as being a way to distract myself.

Young people's experiences of family support

In a study investigating young people, carried out by BOLGER2004, most of the respondents stated that their relationship with their parents and other family members was ‘good’ or ‘improved’ since the self-harm incident. The majority of the respondents mentioned ‘having someone to talk to’ as being of benefit to young people in distress. In the HOOD2006 study of young people and their parents in New Zealand, the young people were usually less enthusiastic about parental involvement in their treatment. Conversely, parents valued their involvement in their child's treatment decisions. However, most young people did acknowledge that having a therapist to mediate allowed them to talk to their parents about issues that they felt they could not raise on their own.

4.4.9. Carer experiences

Seven studies (BYRNE2008 [Byrne et al., 2008], BYWATERS2002, HOOD2006, LINDGREN2010 [Lindgren et al., 2010], MCDONALD2007 [McDonald et al., 2007], OLDERSHAW2008 [Oldershaw et al., 2008], RISSANEN2009) were found that could be categorised under the heading of ‘carer experiences’. The review team extracted common findings that emerged from the analysis of the carer perspectives such as the process of discovery, the psychological impact of self-harm, the understanding of the meaning of self-harm, support needs, parental views on treatment, the effects of self-harm on parenting and family life, and the role of carers or parents in their child's recovery and treatment.

First, the process of discovery of self-harm was commonly captured from the carer's perspective. OLDERSHAW2008 found that for many parents, the process was gradual. At the beginning, many parents had a suspicion about their child's behaviour, often spotting injuries. However, they accepted implausible explanations in the hope that the situation would improve without any further intervention. For the majority of cases, formal verification of their child's self-harm was often carried out by schools or other outside organisations in collaboration with the young person. However, despite their initial concerns, many parents reacted to this news by ‘brushing it under the carpet’ because they felt that the situation would repair itself. Furthermore, the behaviour of outside organisations, such as schools or GPs, was suggested by parents as a key factor in the timing of accessing help. In particular, their attitudes and their willingness to discuss self-harm and give information influenced parental behaviour in the interval between disclosure and referral:

The teacher at the school actually was really quite good. She actually gave me a lot of the background for self-harm, why girls self-harm … she seemed to be quite clued up and in fact it was her that, she was the one that explained to me, a lot of it to me, because I had no idea what it was, what it meant … I don't feel as though I was floundering as much as I think I would have if I hadn't had her advice.

All parents from this study advised others in a similar situation to seek help sooner than they had done (OLDERSHAW2008).

Another finding that emerged was the psychological impact of self-harm on parents. Many parents described strong and lasting emotional reactions to their child's behaviour, including shock, disappointment, helplessness, guilt and fear, a persistent feeling of sadness and a sense of loss (OLDERSHAW2008). One of the most prominent psychological reactions, however, was feeling guilt and shame (BYRNE2008, HOOD2006, LINDGREN2010, MCDONALD2007, OLDERSHAW2008). In particular, a feeling of helplessness in discovering or preventing their child's self-harm led to increased guilt and shame. Specifically, they felt guilty that their child was unhappy or hurting to such an extent that they would even consider self-harm (MCDONALD2007). In response to their children's expressed unhappiness, the mothers questioned their relationships with their children and felt that they may have failed them. This caused deep feelings of blame (MCDONALD2007):

It was like, what have I done?… You tend to blame yourself … I wasn't watching, I wasn't caring enough, I wasn't showing enough love, I wasn't giving enough praise.

Interestingly, these emotional reactions are also mirrored in the accounts of healthcare professionals and service users themselves, increasing confidence in the findings.

Many parents ‘searched for a reason’ for their child's self-harm behaviour. Many felt that circumstances or life events in their own lives, such as marriage breakdowns or losing family members, had caused their child to self-harm. As a consequence, they blamed themselves for its occurrence (MCDONALD2007). Another source of guilt for these mothers stemmed from their need to be far more vigilant of their children after the self-harm was discovered. The mothers reported, among other things, having read their child's journals and emails as well as listening in to private conversations, in order to supervise their child's activities more thoroughly (MCDONALD2007). One mother commented:

It means that you are constantly aware, watching them for any signs … which is terrible. You feel like you are sneaking around all the time.

Public stigma also led to strong psychological reactions such as a sense of failure, worry, isolation and fear (BYRNE2008, BYWATERS2002, HOOD2006). For instance, HOOD2006 established that in some cases parents were uncomfortable with their child's referral to aftercare because it increased their feelings of failure and they were worried about the stigma attached to it. Interestingly, fathers in this study were found to worry more than mothers about stigmatisation (HOOD2006). Many felt that better information for the general public was also called for to help alleviate some of the stigmatisation faced by individuals who self-harm (BYWATERS2002). Mirroring findings of past studies, a recent study carried out by BYRNE2008 on the needs of parents and carers found that the discovery of self-harm was associated with stigma, which exacerbated feelings of isolation and despair:

… go around trying to cover up, not discussing it in front of family or friends. The biggest thing is the isolation, terror and fear … it's a very harsh journey.

The majority of mothers interviewed felt they could not talk to anyone about their child's self-harm because they were aware of the stigmatised nature of self-harm and feared the judgement of others (MCDONALD2007). This fear further contributed to the shame they experienced. Finally, self-harm episodes elicited intense anxiety because many feared the risk of repetition while their child waited for appropriate treatment (BYRNE2008). Parents also described feelings of anger and frustration, and sometimes this anger was directed at their child whose behaviour was disrupting their entire family (BYRNE2008).

A third finding from the carer literature was the parents' understanding of repetitive self-harm behaviour and factors relating to it. OLDERSHAW2008 was the first to investigate parental views of the meaning of their child's self-harm behaviour and the causal factors. They found that parents were sensitive to the behaviour and deeply affected by their experience; however, almost all parents said that their child gave them little or no explanation for their self-harm. Many of the parents felt that from the outside their child appeared to be alright, but internally they were suffering (RISSANEN2009):

I knew she had problems of some kind, but her problems were bigger and more serious that I could ever imagine and they could not be seen from the outside.

When asked if they had any personal opinions on the causes, common causal factors acknowledged by parents were emotional difficulties, situational difficulties such as bullying, and personality factors such as a lack of self-esteem. Most parents recognised that self-harm served a purpose in the young person's life, such as coping with negative emotions or as a means of providing control (OLDERSHAW2008):

I can understand that it's some way of you having some sort of control over your pain, over your life, because you feel totally out of control when you're feeling so depressed or vulnerable or whatever.

Carers gave similar causal factors for engaging in self-harm as professionals and service users themselves, thus strengthening these findings. Yet beyond an intellectual understanding, many parents felt they could not come to terms with their child's self-harm behaviour and understated its significance. Most parents struggled to accept self-harm and recognised the numerous ‘typical’ teenage behaviours that their child could alternatively have engaged in and felt regret that their child had ‘opted’ to self-harm. Ultimately, parents felt that they could not fully understand or empathise with self-harm:

I find that hard to empathise with because it just wouldn't be my way of dealing with it, erm but I can intellectually understand it.

An additional finding from the carer literature was the need for support and information about self-harm. Above all, carers expressed the need for support, information about suicidal behaviour in young people, skills for parenting and advice on managing further incidences (BYRNE2008, BYWATERS2002, RISSANEN2009). Furthermore, advice on how to prevent, or manage further episodes was seen as priority for parents and carers (BYRNE2008). The opportunity to avail themselves of support and to share similar circumstances was believed to be extremely important in managing the impact of self-harm (BYRNE2008, OLDERSHAW2008):

It would be a relief to be able to talk to someone else who has gone through it. Knowing other people having the same situation really does help. The relief of knowing I'm not the only one.

Another finding that emerged from the carer literature was their views of services and treatments. Firstly, many parents were divided on their feelings about medication. Specifically, concerns about the side effects, withdrawal effects, changing medication and the long-term effects of medication were frequent worries for parents (HOOD2006). Conversely, some parents were happy that their child was on medication because they saw the beneficial nature of the antidepressants.

Like service users, the majority of the parents felt that services failed to provide their children and themselves as parents with adequate or appropriate support. In particular, the lack of a clear care pathway for 16- to 18-year-olds was highlighted. Akin to service users' views, carers highlighted the lack of continuity of care and specifically the long duration spent waiting for CAMHS appointments (BYRNE2008, HOOD2006). LINDGREN2010 examined parents' experiences of their daughters' professional care in Sweden, and caregivers at all levels of outpatient and inpatient care for children, young people and adults in psychiatric, acute and emergency care, and primary healthcare. The experiences were mixed in nature. With regard to negative experiences, they reported feeling invisible due to feeling that they were not being listened to, seen or taken into account, and being excluded from participating in their daughters' care. On the other hand, parents also experienced feelings of peace and of being comforted, listened to and taken seriously in some meetings with some professionals. Moreover, professionals who showed compassion and an honest willingness to help were experienced as genuine, reliable and helpful, which made them feel valued, validated them as valuable people in their daughters' lives and allowed parents to see some hope for their daughters. Some parents said they found young people's psychiatrists were often unavailable for continued care because they were too busy or had left the service during the young person's treatment period (HOOD2006).

In a recent study carried out by RISSANEN2009 knowledge of self-harm among healthcare professionals was identified by parents as a helpful factor enabling them to approach self-harm in a professional way. Service users also highlighted the importance of knowledge of self-harm in healthcare professionals, and professionals themselves who were more knowledgeable reported feeling more able to treat people who self-harm. According to the parental descriptions, self-help was useful in many ways but was insufficient on its own (RISSANEN2009). Parents also described additional factors that were of help in the relationship between healthcare professionals and young people who self-injure. These helpful factors included trustworthiness, professionals skills, genuine caring, respecting individuality, sensitivity, speaking about self-harm and the reasons for it, co-operation with the whole family and effective communication between nursing units. In addition, parents recognised unhelpful factors such as a disinterested attitude, avoiding discussion of self-harm, reproaching or denouncing parents for their child's self-harm and doubting the honesty of parents when talking about the self-harm. Again, the helpful and unhelpful factors reported by parents reflect those of the service users themselves and in some cases healthcare professionals' views (for example the value of communication), increasing confidence in the findings reported.

A further finding of importance was the effect of self-harm on parenting and family life. It appeared that self-harm resulted in both negative and positive changes in these areas. With regard to negative changes, self-harm was seen to disrupt family dynamics and impede family functioning (BYRNE2008). Many parents reported ‘walking on eggshells’ around the young people, nervous of triggering an episode of self-harm (OLDERSHAW2008). This impacted on their parenting style and ability to set limits and maintain boundaries. Several parents (OLDERSHAW2008) found that they were now constantly aware of what the young person was doing, both discreetly watching them from a distance, and providing increased overt attention and care-giving:

It was like looking after a baby again … I was hiding the knives, I was hiding any pills … I was knocking on her door every 5 minutes.

Many parents felt that they had to deny their own needs and make changes to or limit their lifestyle as a direct result of the self-harm. They found difficulties in balancing parenting and meeting the needs of other children, which heightened the psychological impact of self-harm by increasing parental burden, pressure and stress. Many of the mothers in this study felt guilt regarding their diminishing role within the family – as a wife, mother and core of the family (OLDERSHAW2008). Dealing with their child's self-harm often took them away from their usual roles at work and home, causing them to feel guilty because they believed that they were not meeting the expectations of themselves or others. Four of the mothers interviewed also considered that the extra time, energy and attention spent on a child who self-harms meant that they had neglected the mothering of their other children (MCDONALD2007).

However, parents did feel that self-harm had resulted in some positive changes to family life by strengthening the parent–child relationship (OLDERSHAW2008):

It's actually helped me break down some of those barriers because she's always coming up for cuddles now and actually I don't reject her anymore, and I think that's because I want to and I can. So that's … I think that's a really positive thing.

Finally, carers highlighted the different roles that they played in their child's struggle with their self-harm behaviour and in their recovery. In the study carried out by RISSANEN2009, the parents felt that they played a significant role in their child's self-harm including intervening in the act of self-injuring, giving support for obtaining professional help, showing they cared, and discussing the self-harm behaviour and factors associated with it. They wished to help their child express their feelings more appropriately and develop adaptive coping strategies. On the other hand, many of the parents questioned their competencies at disciplining, boundary-setting and reestablishing healthy relationships with their child. Specifically, parents felt that ‘active disciplining’ could run the risk of self-harm recurrence and were left disempowered by self-harm. Problems in communication with young people and the incapacity of parents to help were identified as help-hindering factors in this relationship. On the other hand, helpful factors identified by parents were parental interaction with the young people, including showing care and awareness, ensuring professional help and interaction of the parents with each other. In reference to parental involvement in treatment, HOOD2006 found that young people were usually less enthusiastic about parental involvement while parents were often very happy to have the opportunity to be involved in their child's therapy.

4.4.10. Healthcare professionals' attitudes, knowledge and experience

Fourteen primary studies (COOKE2009 [Cooke & James, 2009], DUPEROUZEL2008 [Duperouzel & Fish, 2008], GIBB2010 [Gibb et al., 2010], KIBLER2009 [Kibler, 2009], LONG2010 [Long & Jenkins, 2010], REDLEY2010 [Redley, 2010], REECE2005 [Reece, 2005], ROBERTS-DOBIE2007 [Roberts-Dobie & Donatelle, 2007], SIMM2008 [Simm et al., 2008], SMITH2002, THOMPSON2008 [Thompson et al., 2008], TRELOAR2008A [Treloar & Lewis, 2008a], WHEATLEY2009 [Wheatley & Austin-Payne, 2009], WHITLOCK2009 [Whitlock et al., 2009]) were found that were categorised under the broad heading of ‘healthcare professionals' attitudes, knowledge and experience’. There were a further two reviews identified that fell into this category (McHale & Felton, 2010; SAUNDERS2011). When reviewing the literature, there were a number of themes, such as: the identification of self-harm; healthcare professionals' knowledge and understanding of self-harm and its causes; the attitudes towards self-harm behaviour; psychological impact of self-harm on healthcare professionals; views on treatment and services; views on harm minimisation strategies; and training needs and experiences.

Identification of self-harm

Three studies reported findings related to ‘identification of self-harm’ (COOKE2009, ROBERTS-DOBIE2007, SIMM2008). For school nurses from a primary care trust, identification of self-harm most commonly occurred when staff were approached by friends of service users and other staff members (COOKE2009). It was a rare occurrence for the school nurses to be approached by children and young people who self-harmed, with only one school nurse having identified self-harm behaviour this way. Similarly, in a US study conducted by ROBERTS-DOBIE2007 on school counsellors, the most common methods of discovery were being informed by a fellow student (67%), a classroom teacher (65%), being approached by the person who self-harms (51%) or the counsellor personally recognising the symptoms (48%). These findings highlight the need for all school employees and peers to be educated about self-harm because they are the primary sources for identification of self-harm. Importantly, in a study conducted on head teachers of primary schools in the UK (SIMM2008) participants noted that the busy nature of school life and demands on time might hide self-harm behaviours from some staff.

Knowledge of self-harm and its causes

There were five studies that explored the topic of knowledge of self-harm and its causes (COOKE2009, DUPEROUZEL2008, KIBLER2009, SIMM2008, THOMPSON2008). In SIMM2008, head teachers of primary schools expressed uncertainty as to what constituted self-harm and what did not. Some participants felt that if the child did not intend to hurt themselves, the behaviour did not qualify as self-harm. Others felt that intentionality did not matter in this way. Finally, some participants felt that self-harm had to be repeated behaviour while others considered that behaviour could count as self-harm even if it only happened once. In another study, school nurses' knowledge of self-harm methods was broad, but commonly focused on ‘superficial self-harm’ rather than more lethal methods (COOKE2009).

Understanding of the underlying reasons for self-harm

Regarding the underlying reasons for self-harm (DUPEROUZEL2008), healthcare professionals understood that self-harm was an important coping mechanism and a means of control. This was a common underlying reason quoted by service users themselves, thus strengthening the findings reported. Furthermore, the majority (83%) of US school counsellors were also aware that it was best to be direct with students about stopping the self-injurious behaviour and most participants (80%) also believed it was beneficial to educate students about how and why students self-injure (KIBLER2009). Ultimately, in a study conducted on experienced community psychiatric nurses (THOMPSON2008) the importance of understanding service users in order to have more empathy was highlighted.

Another recent study by REDLEY2010 examined clinicians' understanding of self-harm by overdose and their experience of psychosocial assessment. Many saw the act as an impulsive one in the face of adverse life events and influenced by drugs or alcohol. On the contrary, a person's motivation or reasons for taking an overdose are given minimal clinical importance. The authors suggest a number of reasons for this. First, paying greater attention to a person's reasons and motivations may lead to provocation if the clinician does not understand, endorse or agree with the person's motivations. Second, some of the interviews suggested that being intimate with details of people's lives, in order to better understand their reasons for taking an overdose, is not commensurate with the professional role considered necessary to work with them.

LONG2010 recently examined counsellor's perceptions of self-harm and their view of the role of the therapeutic relationship when working with this group. The counsellors concurred that the therapeutic relationship is central when working with people who self-harm. In particular, they recognised the need for time, a safe and confidential environment, non-judgemental support, unconditional positive regard, empathy, equality and sensitivity as important factors in establishing a rapport and a trusting therapeutic relationship. The findings indicate that the therapeutic relationship for self-harm is vital, complex, long-term and multi-dimensional. Observational skills, listening, identifying personal history, supervision, risk assessment and being person-centred were all identified by counsellors as crucial at the beginning of therapy. Two counsellors commented on the use of no-suicide contracts and both agreed that they were detrimental rather than beneficial, in that they ‘protect the counsellor rather than the client’ and because it takes away a coping mechanism or ‘crutch’ for dealing with difficult issues. When discussing the ending of the therapeutic relationship, teaching coping strategies and teaching service users to identify triggers for their self-harm and safer self-harm were described as possible options. Many of the counsellors conceded that the ending of therapy was a difficult task and this should be addressed in training.

Attitudes to self-harm

Sixteen studies examined attitudes of healthcare professionals about self-harm and these were predominantly negative in nature (COOKE2009, GIBB2010, HOPKINS2002, JEFFERY2002, KIBLER2009, MACKAY2005 [Mackay & Barrowclough, 2005], McHale and Felton [2010], O'DONOVAN2007, REDLEY2010, REECE2005, SAUNDERS2011, SMITH2002, THOMPSON2008, TRELOAR2008A, WHEATLEY2009, WHITLOCK2009). Some of the negative attitudes addressed by the literature (for example, that self-harm is a means of seeking attention) were quoted as common misconceptions in the perspectives of service users reported above (REECE2005).

A number of studies exposed that many healthcare professionals felt that people who self-harm were labelled as ‘attention seeking’ (COOKE2009, KIBLER2009, McHale and Felton [2010], REECE2005, SAUNDERS2011, SMITH2002). For instance, in one study carried out by KIBLER2009 when US counsellors were asked whether most students who self-injure want attention, approximately equal numbers agreed and disagreed with this statement. Also, in the systematic review carried out by SAUNDERS2011 a number of studies indicated an over-representation of attention-seeking as a motive for self-harm. This was found to be less common in psychiatric staff compared with general hospital staff. When asked the reasons why it was felt that people who self-harm were viewed negatively, healthcare professionals frequently cited (SMITH2002):

[a] general fear of working with these people and I think the fear is born out of not quite knowing what to do with them, and due to the blame culture professionals have lost confidence in themselves and therefore empathy towards other human beings suffering.

Moreover, some healthcare professionals expressed that those who used superficial methods of self-harm were doing so to gain attention, whereas, those engaged in more ‘serious’ self-harm had different motives (COOKE2009):

I think there are two groups: those that say they're self-harming, and it's … probably only superficial scratching or whatever and I wonder if it's more attention-seeking or frustration or anything else. And then you get what I call your serious self-harmers that are really abusing or hurting themselves.

On the other hand, not all studies highlighted negative attitudes towards individuals who self-harm. The literature review carried out by SAUNDERS2011 identifies two studies where sympathy was reported by at least 40% of healthcare professionals (Friedman et al., 2006; Pallikkathayil & Morgan, 1988). Moreover, in a study carried out by GIBB2010, there were some positive attitudes including 73% of healthcare professionals stating that they could empathise with a person who has self-harmed and 71% believing that their contact was helpful to people who self-harm.

There are a number of factors that may promote negative attitudes, such as the busy nature of the ward, service users being seen as an obstacle to the ward and challenging behaviour. For instance, in a study carried out by HOPKINS2002 the above factors were highlighted when observing two medical wards and interviewing two healthcare professionals from each ward. In particular, the service users were seen as blocking beds because their needs meant beds were occupied for longer than expected. These service users were deemed to have challenging behaviours because they had different requirements than medical patients. While the study had a small sample (only four participants) to draw these conclusions from, they were supported by the additional observations made (HOPKINS2002). In fact, many healthcare professionals feel that people who self-injure are a difficult group to work with, and this may partially explain the prominence of negative attitudes (GIBB2010, SMITH2002, THOMPSON2008, WHITLOCK2009).

One explanation for this is that self-harm is often comorbid with many other challenging clinical presentations such as bipolar disorder, and depressive and anxiety disorders, disordered eating, and a history of trauma and abuse (WHITLOCK2009). Other possible explanations include the perceived addictive nature of the behaviour and uncertainty about how to best treat or manage self-injurious behaviour (WHITLOCK2009). Finally in a study by GIBB2010, healthcare professionals indicated that their greatest difficulties in working with people who self-harm included repetitive self-harm, frustrating and difficult behaviour, communication difficulties, lack of knowledge about mental illness, a lack of effective interventions and time pressure.

A study carried out by WHEATLEY2009 on nurses provides some additional insight into why they viewed people who self-harm more negatively than other patients. Interestingly, they found that nurses who reported feeling more negative about people who self-harm reported more worry about working with this group. Furthermore, there were non-significant trends suggesting that nurses who reported feeling more effective in their work with people who self-harm reported less negativity and worry about working with this group, although this was not necessarily the case for female nurses. A study carried out by GIBB2010 found that negative attitudes were significantly associated with higher levels of burnout, through high emotional exhaustion and low personal accomplishment. Finally, unqualified nursing staff reported more negativity and worry in working with people who self-harm than qualified nurses, suggesting that knowledge and education plays an important role in attitudes towards self-harm (WHEATLEY2009).

The literature review carried out by SAUNDERS2011 highlighted a number of additional characteristics that play an important role in influencing attitudes such as job role and gender. For example, within general hospital staff, those who were closer to the frontline were increasingly likely to hold negative viewpoints about and behave negatively towards people who self-harm. Furthermore, negative attitudes towards people who self-harm were more prevalent in doctors compared with nurses. Where this was not found the majority of the studies had a participant population which included psychiatric staff. One study found that psychiatrists had a more positive attitude towards self-harm compared with their colleagues of other specialities, and the same effect was found in non-medical psychiatric staff and their colleagues (TRELOAR2008A). This indicates that psychiatric training and experience goes some way to moderating the effect of job role on healthcare professionals’ attitudes. In line with this, exposure of psychiatric staff to people who self-harm was found to improve healthcare professionals’ attitudes. Nevertheless, the opposite effect was found in general hospital staff. Another potentially moderating effect, identified by the review, was the influence of gender on attitudes. Three studies found that the attitudes of male staff towards self-harm were significantly more negative compared with those of female staff. However, authors do highlight that the strong gender-role association, with the tendency for men to be doctors and women to be nurses, make results from these studies difficult to interpret.

In a study carried out by O'DONOVAN2007, an additional area influencing negative attitudes was the impact of health professionals' views of the differences between their expected and actual roles. In semi-structured interviews O'DONOVAN2007 revealed that healthcare professionals felt the focus of their role was prescribing medication rather than developing therapeutic relationships within acute mental health wards. This prevents people from being able to address the reasons for their self-harm and developing alternative coping strategies.

Another justification for negative attitudes portrayed by healthcare professionals is the lack of training and education provided to them in the area of self-harm. A literature review of the factors affecting attitudes to self-harm (McHale & Felton, 2010) found that a lack of education was the primary rationale for negative attitudes, which were prevalent in 18 out of the 19 studies reviewed. Additionally, a recent study carried out by TRELOAR2008A on professional attitudes of mental health clinicians and emergency room staff highlighted the importance of training and education on healthcare professionals' attitudes. They found that mental health clinicians had a significantly more positive attitude towards service users with bipolar disorder who self-harmed compared with clinicians working in emergency medicine. Another significant finding was that the female clinicians across both mental health and emergency medicine service settings had more positive attitudes towards patients with borderline personality disorder, although this difference was not significant when controlling for other factors. However, factors such as the frequency of contact with patients with borderline personality disorder, level of university training completed, and years of clinical experience held by the clinicians across mental health and emergency medicine were not associated with attitude ratings towards such patients. As predicted, clinicians across the mental health and emergency department service settings who had attended prior training specifically in the area of borderline personality disorder demonstrated significantly more positive attitudes towards working with this patient group (TRELOAR2008A).

As well as healthcare professionals' characteristics, the varying characteristics of people who self-harm were also identified as moderating factors on healthcare professionals' attitudes (SAUNDERS2011). For example, negative attitudes were more likely to be expressed towards people who repeatedly self-harm. Negative attitudes are also linked to the professional's perceptions of service users' control of self-harm. MACKAY2005 asked questions about attitudes within four hypothetical situations offering different control and stability features. The findings indicated that where the problems specified leading to self-harm were within the control of the service user then elevated disapproval was shown. This may imply that feelings of incompetence lead to negative attitudes (HOPKINS2002, MACKAY2005, O'DONOVAN2007, PATTERSON2007 [Patterson et al., 2007], SMITH2002). Service users presenting frequently at hospital challenge healthcare professionals and their ability to cope with such situations. This could affect their confidence, which further contributes towards negativity (McHale & Felton, 2007). Ramon and colleagues (1975) found that the lethality of self-harm is also an influencing factor on nursing and medical staff's attitudes towards self-harm, with sympathy and lethality being positively correlated. This finding was mirrored in a US study (Ansel & McGee, 1971) and an Australian study (Bailey, 1994), both of which found that positive attitudes were more likely to be displayed towards clearly suicidal or despairing patients. Furthermore, SAUNDERS2011 found that healthcare professionals felt more hostility towards people who self-harm than those with a physical illness. This was attributed to distinctions that professionals make between legitimate and illegitimate needs, with self-harm being considered illegitimate compared with physical illness and, therefore, less worthy of care.

The emotional impact on healthcare professionals who work with people who self-harm

The literature also highlighted the emotional and psychological impact that working with people who self-harm can have on healthcare professionals (DUPEROUZEL2008, REECE2005, REDLEY2010, THOMPSON2008). Similar to carers' experiences, self-harm elicited strong emotional reactions in healthcare professionals. Many participants talked about how frustrating and hopeless the work could be, which was linked to service users not getting better or relapsing (THOMPSON2008), or when service users continued to self-harm following attempts to talk about their behaviour (DUPEROUZEL2008):

I suppose it's just like beating your head against a brick wall. You still trying to, you're trying to help her and sort her through and sort her life out and she basically just throws it back in your face. That's how it seems; she's throwing it back in your face.

The sense of nurse helplessness in dealing with self-harm was a common feature of the nurses' interviews in one study (REECE2005). However, the way in which this helplessness was managed varied, with some expressing feelings of frustration and others expressing feelings of distress. In particular, many of the male nurses conveyed distress and powerful emotional reactions in response to self-harm incidents (REECE2005). Participants also felt inadequate and this was mainly attributed to a lack of resources, lack of time and a feeling of futility (COOKE2009). For others, there was anger towards patients for being ‘manipulative’. Furthermore, some participants felt that seeing the physical effects of patients' self-harm was distressing and shocking, and at times they felt disgusted (THOMPSON2008). However, despite the challenging nature of working with people who self-harm, most participants also felt that ‘It can be very rewarding’ (THOMPSON2008). Both service users' and carers' feelings of guilt and blame were key concerns for healthcare professionals. They explained that when someone self-harms, they feel personal guilt alongside an institutional pressure and blame culture (DUPEROUZEL2008):

If we did allow self-harm and something went wrong we'd be dead meat, for want of a better word. It could be said as negligent.

With the exception of one participant they all talked about the fear of being blamed for their actions if a patient dies: ‘Am I gonna have to account for what I have done?’ Feeling responsible was exacerbated by time pressures, having limited resources and feeling unsupported by other statutory services (THOMPSON2008). Therefore, not surprisingly, all participants except for one found working with this patient group ‘very anxiety provoking’ and on occasion described this anxiety as spilling over into their personal lives (THOMPSON2008). Interestingly, service users demonstrated an awareness of this blame-culture but felt it was unfair to hold healthcare professionals responsible for their self-injurious behaviour (DUPEROUZEL2008). Despite most healthcare professionals feeling personally responsible for helping service users get better, there was a clear recognition that ‘It's about putting the responsibility back to them’. The service user should be seen to have ultimate responsibility for their behaviour and nurses felt it was important to work collaboratively with them.

Healthcare professionals' experiences of services and treatments for people who self-harm

An additional finding that emerged from the healthcare professional literature was their experiences of services and treatments available for people who self-harm (COOKE2009, SMITH2002, WHITLOCK2009). With regard to services available, healthcare professionals explained that other priorities prevented them from giving service users time and space to explore their self-harm (SMITH2002). COOKE2009 discovered that many of the nurses were uncomfortable with referrals, particularly because it involved balancing a breach of confidentiality with a duty of care. They were also uncomfortable with the threshold of specialist services because this often resulted in them having to deal with situations they did not feel equipped to handle. Uncertainty about how to best treat the behaviour was common, with only 28.3% of respondents saying that they knew enough to treat people who had self-injured effectively and three quarters agreeing that this is a subject about which they need more information (WHITLOCK2009). The majority of practitioners reported using CBT or dialectical behaviour therapy (DBT) treatment approaches and the majority reported that these treatments are only sometimes effective (WHITLOCK2009). Moreover, many reported having changed their approach to treatment over time, typically in favour of DBT (WHITLOCK2009). Acquisition of coping mechanisms, improvement of life circumstances and enhanced ability to reflect on the underlying causes of distress were identified as the most common reasons for self-harm cessation following treatment (WHITLOCK2009). Furthermore, healthcare professionals making assumptions and being too focused on the physical manifestations, rather than the associated psychological complexities, of self-harm was another central issue (COOKE2009). In particular, alternative strategies in place of the self-harm behaviour were seen as ‘futile’ by some healthcare professionals:

I feel silly telling them alternative strategies … like to hold an ice cube. They seem futile and I feel like I lose credibility … It seems inadequate – how could it help?

Similar to both carers and service users, healthcare professionals expressed a need for continual support and additional training (GIBB2010, SMITH2002, THOMPSON2008). Experienced community psychiatric nurses all described the importance of supervision and informal support (THOMPSON2008). Most participants felt that they could rely on their colleagues for reassurance and advice. However, there was also a sense that because the team was extremely busy that they would not want to burden others, so they may not seek support as often as needed (THOMPSON2008). In relation to support for service users, healthcare professionals agreed that peer group support is beneficial because ‘to know that other people have had similar experiences can be really helpful’ (SMITH2002). Further suggestions for improvement, as identified in by the SAUNDERS2011 literature review and by a study conducted by GIBB2010, included further training and an increase in resources such as advice, support, facilities, staff levels, faster assessment and greater flexibility with patient allocations. Healthcare professionals identified a specific training need with regard to taking a psychosocial history of people who self-harm and referring them on to psychiatric services. Healthcare professionals also felt that separating the facilities for people with physical health problems and people who self-harm would be beneficial because of the differing needs of the two groups.

Views on harm minimisation

Three studies also captured staff views on harm minimisation strategies (DUPEROUZEL2008, REECE2005, THOMPSON2008) (see Chapter 7 for more information on harm minimisation). Some healthcare professionals felt that self-injuring should be permitted because it reduced the risk of more dangerous behaviours (DUPEROUZEL2008):

I don't have a problem with it. I would let them cut as long as it was done, you know what I mean, where there is less risk of infection. Because, to me, if she'd been allowed to cut she wouldn't have started swallowing. She wouldn't have started doing the inserting things like that. Which to me is more life threatening than cutting.

Many nurses expressed a desire for the service users to stop self-harm, but some knew that realistically they, as nurses, could not stop it from happening, only attempt to contain it (REECE2005). In a study performed on experienced community psychiatric nurses, all talked about the need to minimise and ‘contain risk’ and that their role was not necessarily about helping a patient to stop self-harm (THOMPSON2008):

I don't actually see it as my aim to stop somebody kind of self-harming. I perhaps see it as maybe acknowledging well that's kind of the way that they're functioning. Maybe we can look at reducing this and making that behaviour as kind of safe as possible.

O'DONOVAN'S2007 interviews also raised the area of risk management including the removal of property and one-to-one observations. Nurses acknowledged the need to ensure the safety of service users. However, they felt the measures taken were inappropriate and were contravening people's rights. This conflict results in healthcare professionals feeling uncomfortable with the roles that they are required to work within for service user safety.

Views on training and education

Another finding arising from the literature was the need for training and education in issues relating to self-harm (COOKE2009, DUPEROUZEL2008, ROBERTS-DOBIE2007, SIMM2008, SMITH2002, WHEATLEY2009). The majority of healthcare professionals believed that they were able to do their job adequately; however, to provide better care they suggested that they needed additional training (SMITH2002). Likewise, in a study carried out by COOKE2009 the need for training in self-harm was raised as an important issue among the school nurses, with a number of participants feeling ill-equipped to deal with self-harm issues in an appropriate way. Similarly, in a study carried out by DUPEROUZEL2008 service users and healthcare professionals highlighted the need for more staff training in order to understand the behaviour and methods of caring for people who self-harm. It was felt that better understanding would, in turn, improve communication because service users often felt that healthcare professionals avoided discussing self-harm behaviour with them, despite the value that service users placed on this interaction. Mirroring the views of service users themselves, healthcare professionals also felt that communication about self-harm was difficult, and this was attributed to a lack of confidence, something which training could address (DUPEROUZEL2008):

Training should include lots and lots of different ideas why people – why and what research tell us what causes people to self-harm, because I don't think that it is very well understood. And I also think that we should have training in how to deal with it. And when it is happening there and then, rather than, not just going off your instincts but following what other people are doing.

All healthcare professionals expressed a desire for general mental health and self-harm training and, particularly, practical tips on management of self-harm (COOKE2009). Moreover, it was felt to be of importance to look at healthcare professionals' thoughts and feelings surrounding the topic of self-harm (SMITH2002). Supervision was also thought to be essential, as was peer group support and working as a team (SMITH2002). Other training suggestions included increasing knowledge levels especially with regard to alternative strategies and general awareness of self-harm, practical tips for managing young people who self-harm, information regarding organisations who deal with self-harm issues, counselling, and learning about different types of self-harm (COOKE2009). Another key area that was highlighted by school nurses was further education on referrals and in particular, understanding when it is appropriate to refer people on to specialist services, when to seek help and when to refer to child protection services. Finally, training was considered necessary in issues of confidentiality, specifically, when to inform parents and break confidentiality. Most of those who had previously attended training said it had helped increase their confidence in dealing with these issues (COOKE2009). It was also suggested that involving people who self-harm in the training may help to address the issues of guilt and blame felt by healthcare professionals (DUPEROUZEL2008). Further evidence suggesting more training is necessary is apparent within research conducted by JEFFERY2002. Medical staff and psychiatrists showed limited awareness about self-harm when tested about facts and myths surrounding self-harm. The respondents who had appropriate training were clearer about self-harm. In an additional study carried out by ROBERTS-DOBIE2007 the most commonly identified need expressed by school counsellors in the US was building their knowledge and skills. In addition to more information, counsellors wanted policies and procedures to follow when working with people who self-harm. Learning mentors interviewed in a study carried out by SIMM2007 described how they had gained new understanding of self-harm from a training course on self-harm. Equally, they felt that colleagues who had little training in this area were not as aware. Particular gaps in knowledge found were in relation to subgroups of the population who are at higher risk of self-harm. Additionally, the findings suggested that training and support to help unqualified staff feel less negative and concerned about working with people who self-harm may be particularly important (WHEATLEY2009).

4.5. FROM EVIDENCE TO RECOMMENDATIONS

Service user experiences of self-harm

The evidence from the qualitative literature provided an insight into the experience of people who self-harm, as well as their carers and healthcare professionals. For many people, self-harm was an indication of an underlying problem and the reasons for self-harm vary considerably. For some, self-harm was related to traumatic life events, childhood abuse, psychiatric illness or troubled relationships. For others, self-harm was an important coping mechanism for dealing with feelings of frustration, loneliness or distress. It was also described in the literature as a cry for help, an escape or as a means of gaining support. Others mentioned that they engaged in self-harm to feel alive or cope with dissociation. Also, the meaning and motivation behind each act may differ considerably from one incident to the next. There were 14 studies in the literature reviewed that looked at reasons behind self-harm behaviour. Most of the studies were qualitative and used semi-structured interviews of mostly adult female participants; one study included participants as young as 14 years and four as young as 16 years. The mean study sample size was around 37 participants and the recruitment varied considerably from inpatient and hospital recruitments to advertisements, self-help websites and email interviews. In summary, health and social care professionals should explore the meaning of self-harm for the person and recognise that each person self-harms for individual reasons.

Self-harm may coexist with other destructive behaviours such as drug or alcohol misuse. Two particular studies highlighted these destructive behaviours; however, the participants varied from a large sample (n = 76) of female subjects who self-injured to male and female subjects (n = 20) who had stopped self-harming for at least 2 years. The literature also mentions that these coexisting behaviours may be interchangeable; however, this finding came from a small study of seven participants.

There are mixed attitudes towards ending self-harm and the process of recovery. Some people wanted to stop, whereas others valued it as a vital coping mechanism. There were three studies in the literature that looked at the views of people who currently self-injured as well as those who had stopped.

There was a paucity of evidence that looked at experience of self-harm in males. The male literature implied an expectation that men are ‘stronger’ and ‘able to cope’, and as a result they may resort to self-harm as an expression of their underlying emotions. There was also a suggestion from the literature that men tend to injure themselves more severely and are more likely to display public and violent self-harm, but due to the small numbers of studies available these findings need to be replicated in future research. There were only two studies that looked at the experience of self-harm in males; both of these included a small sample size of fewer than ten participants.

Access, engagement and barriers to services

Although there was considerable variation in the literature, service users' experiences of services are predominantly negative in nature. Service users reported poor access to services including delayed referral for psychosocial assessment and long waiting lists for therapy. Service users reported feeling frustrated when organising their own aftercare because often they could not reach services through the telephone numbers provided. Health and social care professionals should ensure that people who self-harm (including children and young people, older adults, adults from black and minority ethnic groups and people with mild learning disability) have access to the full range of assessment and services.

Service users face problems with regard to communication with professionals due to inadequate sharing of information by medical staff. Individuals were not given the opportunity to be involved in decision-making about their treatment because little information was shared. This informed the recommendation that health and social care professionals should ensure that service users are fully involved in decision-making about their care, and that they foster service users' autonomy wherever possible. Service users reported a lack of rapport in their relationships with healthcare professionals and poor continuity of care. There were seven studies that highlighted these specific experiences, but care needs to be taken when interpreting these results as the sample size ranged from three participants to 84. Nevertheless, health and social care professionals should maintain continuity of therapeutic relationships wherever possible, and aim to develop a supportive and engaging relationship with people who self-harm.

Experience of treatment

The evidence suggested that the use of an empathetic, non-judgemental approach by practitioners may be associated with a more positive experience of assessment and treatment by service users. The importance of the therapeutic relationship was echoed in a total of eight studies of which the sample size ranged from only three to 76 participants, most of whom were women from a wide variety of different settings. It was also apparent from the findings that the opportunity to talk was a vital aspect of aftercare for many service users, but not all. This finding is supported by 12 studies of which the total sample size ranged from three to 89 participants, with the majority having a small-to-medium sample size recruited from a variety of settings. The population comprised a mixture of males and females, but was mostly young females between 8 and 60 years old and included those who self-injured and self-poisoned. This suggested that there was more evidence to support the importance of developing trusting and supportive relationships with people who self-harm.

Service users emphasised the need for professionals to discuss the risks and benefits associated with various medications in order for them to make a more informed decision. This finding is supported by four studies, which were conducted in a variety of non-UK settings. The number of participants ranged from three to 12 participants and included a mixture of males and females; however, they were predominantly young females. This finding might not be applicable to the UK.

Social support

Social support in the form of community support groups, support from family and friends and website support groups appeared to be important for people who self-harm as feelings of isolation, low self-esteem and alienation are very common among this group. However, these voluntary support groups and websites may be destructive if not well moderated and managed. It should be noted that this possible limitation of support groups came from the view of one individual who attended a voluntary support group a number of years ago. There were a total of eight studies that examined the importance of social support for people who self-harm with a sample size ranging from six to 89 participants, including a mixture of males and females with ages ranging from 14 to 44 years. These were conducted in a wide variety of different settings and included those who self-poisoned and self-injured. Health and social care professionals could offer advice about local and national resources regarding additional support for people who self-harm.

Overall, there is a lack of evidence examining young people's experiences of self-harm and their experiences of care. It should also be noted that most of the evidence examines the experiences of those who self-injure rather than those who self-poison, and thus the findings may not generalise to this population.

Carers' experiences were reported in a total of seven studies, but in some the sample size was very small with a range of six to 72 participants. Many parents felt excluded from their children's care planning and treatment. Carers highlighted the need for more information about suicidal behaviour in young people, skills for parenting and advice on managing further incidences. Therefore, when carers are involved in supporting the service user, health and social care professionals should provide written and verbal information on self-harm as well as information on how to support the person. Similar to service users, carers highlighted the lack of continuity of care and specifically the long duration spent waiting for CAMHS appointments. Finally, many carers found carer support networks and other forms of social support to be helpful in coping with their distress. Health and social care professionals can also support carers by providing information about carer support groups, and provide information and contacts in case of a crisis. It is important to note, however, that the majority of the carer literature focused on parents (especially mothers) of young people (in particular young women) and thus these findings may not generalise to other types of carers or service users. Moreover, these findings may not apply to parents of people who self-harm who have not come to the attention of services. Where appropriate, health and social care professionals should ask directly whether the service user wants their families or carers to be involved, subject to the service users' consent and right to confidentiality.

Healthcare professionals' attitudes, knowledge and experience

A total of 16 studies reported findings on healthcare professionals' attitudes, knowledge and experience, with sample sizes ranging from four to 290 participants and a mean sample of 83. Caution must be taken when interpreting the findings of these studies because they were mostly drawn from convenience samples and of the few that reported response rates, these ranged from only 12 to 64%. However, the healthcare professionals in the studies came from a wide variety of professional backgrounds and most included a mixture of male and female staff. The attitudes of staff in the literature reviewed were predominantly negative in nature. People who self-harm were often described by staff as ‘attention seekers’ and a difficult group to work with.

The literature also highlighted the emotional and psychological impact that working with this group can have on staff members. Some staff members felt that seeing the physical effects of self-harm were distressing and many reported anxiety, frustration and negativity when working with people who self-harm. This is supported by four studies, but the sample size was typically small ranging from nine to 14 healthcare professionals. Caution in interpreting these findings must be exercised because the settings varied widely, with one study being conducted with healthcare professionals in a medium secure unit for people with mild to moderate learning disabilities who self-injure.

Finally, health and social care professionals, service users, and families and carers all highlighted the lack of training and education on self-harm provided to professionals, and professionals expressed a need for continual support. This led to the GDG making a recommendation that all health and social care professionals should be trained in the process of caring for people who self-harm, which includes assessment, treatment and management. They should have routine access to supervision and support. In particular, they should consider the emotional impact of self-harm on both the professional and their capacity to practice competently and empathetically.

4.6. RECOMMENDATIONS

4.6.1. Clinical practice recommendations

Working with people who self-harm

4.6.1.1.

Health and social care professionals working with people who self-harm should:

  • aim to develop a trusting, supportive and engaging relationship with them
  • be aware of the stigma and discrimination sometimes associated with self-harm, both in the wider society and the health service, and adopt a non-judgemental approach
  • ensure that people are fully involved in decision-making about their treatment and care
  • aim to foster people's autonomy and independence wherever possible
  • maintain continuity of therapeutic relationships wherever possible
  • ensure that information about episodes of self-harm is communicated sensitively to other team members.
4.6.1.2.

Health and social care professionals who work with people who self-harm should be:

  • familiar with local and national resources, as well as organisations and websites that offer information and/or support for people who self-harm, and
  • able to discuss and provide advice about access to these resources.

Access to services

4.6.1.3.

Children and young people who self-harm should have access to the full range of treatments and services recommended in this guideline within child and adolescent mental health services (CAMHS).

4.6.1.4.

Ensure that children, young people and adults from black and minority ethnic groups who self-harm have the same access to services as other people who self-harm based on clinical need and that services are culturally appropriate.

4.6.1.5.

When language is a barrier to accessing or engaging with services for people who self-harm, provide them with:

  • information in their preferred language and in an accessible format
  • psychological or other interventions, where needed, in their preferred language
  • independent interpreters.

Self-harm and learning disabilities

4.6.1.6.

People with a mild learning disability who self-harm should have access to the same age-appropriate services as other people covered by this guideline.

4.6.1.7.

When self-harm in people with a mild learning disability is managed jointly by mental health and learning disability services, use the Care Programme Approach (CPA).

4.6.1.8.

People with a moderate or severe learning disability and a history of self-harm should be referred as a priority for assessment and treatment conducted by a specialist in learning disabilities services.

Families, carers and significant others8

4.6.1.9.

Ask the person who self-harms whether they would like their family, carers or significant others8 to be involved in their care. Subject to the person's consent and right to confidentiality, encourage the family, carers or significant others to be involved where appropriate.

4.6.1.10.

When families, carers or significant others8 are involved in supporting a person who self-harms:

  • offer written and verbal information on self-harm and its management, including how families, carers and significant others7 can support the person
  • offer contact numbers and information about what to do and whom to contact in a crisis
  • offer information, including contact details, about family and carer support groups and voluntary organisations, and help families, carers or significant others8 to access these.
  • inform them of their right to a formal carer's assessment of their own physical and mental health needs, and how to access this.
4.6.1.11.

CAMHS professionals who work with young people who self-harm should balance the developing autonomy and capacity of the young person with perceived risks and the responsibilities and views of parents or carers.

Training and supervision for health and social care professionals

4.6.1.12.

Health and social care professionals who work with people who self-harm (including children and young people) should be:

  • trained in the assessment, treatment and management of self-harm and
  • educated about the stigma and discrimination usually associated with self-harm and the need to avoid judgemental attitudes9.
4.6.1.13.

Health and social care professionals who provide training about self-harm should:

  • involve people who self-harm in the planning and delivery of training
  • ensure that training specifically aims to improve the quality and experience of care for people who self-harm
  • assess the effectiveness of training using service user feedback as an outcome measure9.
4.6.1.14.

Routine access to senior colleagues for supervision, consultation and support should be provided for health and social care professionals who work with people who self-harm. Consideration should be given of the emotional impact of self-harm on the professional and their capacity to practice competently and empathically9.

Managing endings and supporting transitions

4.6.1.15.

Anticipate that the ending of treatment, services or relationships, as well as transitions from one service to another, can provoke strong feelings and increase the risk of self-harm, and:

  • Plan in advance these changes with the person who self-harms and provide additional support, if needed, with clear contingency plans should crises occur.
  • Record plans for transition to another service and share them with other health and social care professionals involved.
  • Give copies to the service user and their family, carers or significant others if this is agreed with the service user.
4.6.1.16.

CAMHS and adult health and social care professionals should work collaboratively to minimise any potential negative effect of transferring young people from CAMHS to adult services.

  • Time the transfer to suit the young person, even if it takes place after they reach the age of 18 years.
  • Continue treatment in CAMHS beyond 18 years if there is a realistic possibility that this may avoid the need for referral to adult mental health services.
4.6.1.17.

Mental health trusts should work with CAMHS to develop local protocols to govern arrangements for the transition of young people from CAMHS to adult services, as described in this guideline.

Reproduced with permission from: http://weirdsid​.wordpress.com/ (accessed February 2011).

Here and elsewhere in the guideline, each study considered for review is referred to by a study ID in capital letter (primary author and date of publication, except where a study is in press or only submitted for publication, then a date is not used).

‘Significant other’ refers not just to a partner but also to friends and any person the service user considers to be important to them.

This recommendation also appears in Section 5.5 where the data regarding training are presented.

Footnotes

6

Reproduced with permission from: http://weirdsid​.wordpress.com/ (accessed February 2011).

7

Here and elsewhere in the guideline, each study considered for review is referred to by a study ID in capital letter (primary author and date of publication, except where a study is in press or only submitted for publication, then a date is not used).

8

‘Significant other’ refers not just to a partner but also to friends and any person the service user considers to be important to them.

9

This recommendation also appears in Section 5.5 where the data regarding training are presented.

Copyright © 2012, The British Psychological Society & The Royal College of Psychiatrists.

All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Enquiries in this regard should be directed to the British Psychological Society.

Bookshelf ID: NBK126796
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