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Pryjmachuk S, Elvey R, Kirk S, et al. Developing a model of mental health self-care support for children and young people through an integrated evaluation of available types of provision involving systematic review, meta-analysis and case study. Southampton (UK): NIHR Journals Library; 2014 Jun. (Health Services and Delivery Research, No. 2.18.)

Cover of Developing a model of mental health self-care support for children and young people through an integrated evaluation of available types of provision involving systematic review, meta-analysis and case study

Developing a model of mental health self-care support for children and young people through an integrated evaluation of available types of provision involving systematic review, meta-analysis and case study.

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Chapter 1Background

Self-care, self-care support and the mental health of children and young people

The mental health of children and young people (CYP) is a major public health concern in the UK. Around one in five CYP will have mild to moderate mental health problems;1 around 1 in 10, a diagnosable mental disorder.2,3 Given that these statistics are far from insignificant, it is entirely reasonable for clinicians, researchers and policy-makers to examine and question the delivery and organisation of mental health services for CYP, or ‘CAMHS’ (an acronym for child and adolescent mental health services) as they are colloquially known in the UK and Australia.

Regarding the delivery and organisation of such services, evidence from the 2008 CAMHS Review in England4 suggests that mental health service provision for CYP is not always as comprehensive, consistent or effective as it could be, nor is it especially responsive, accessible or child centred. Moreover, the CAMHS Review adds that, when accessing these services, CYP and their parents are often faced with unhelpful legal and administrative processes, unacceptable regional and local variations and busy professionals who have little time to understand the evidence base for effective interventions. In Wales, similar concerns were reported by a Wales Audit Office review in 2009.5

There is, therefore, clear scope for improvement in the delivery and organisation of CAMHS in England and Wales. Indeed, the National Institute for Health Research (NIHR) has already funded delivery and organisational research into alternatives to CAMHS inpatient care6 and the risks associated with such care.7 Additionally, over the last decade or so, there has been a growing consensus in British health care – reflected most recently in policy documents such as the NHS Constitution8 and, in mental health, No Health Without Mental Health 9 – that health care must be patient centred and underpinned by a partnership between those receiving and those delivering care.

The most explicit form of patient-centred care is, perhaps, self-care. The utility of self-care in the delivery and organisation of health and social care is limited, however, in that, in its truest sense, self-care excludes anyone other than the individual – including health and social care professionals – from the caring equation. Although there are obviously situations in which true self-care is appropriate (taking aspirin for a mild headache or doing some exercise to maintain a healthy weight, for example), many health concerns, especially the more severe, enduring and complex ones, necessitate the intervention of a professional of one kind or another – whether that intervention is merely guidance and support, or something more like ‘treatment’ in the traditional sense of the word. In these circumstances, there is ample scope for health and other care professionals to work with individuals in order to facilitate self-care as an immediate, short-term or long-term goal, especially when a spirit of partnership and patient centredness permeates the practices of those professionals.1012 With this in mind, the ways and means by which self-care might be supported and facilitated by others becomes important. The focus of our inquiry is thus not self-care per se but self-care support (or ‘support for self-care’ as it sometimes known).

There is a notable amount of research and literature on self-care support in long-term physical health conditions, both in adult and (to a lesser extent) children’s services.1315 There have also been some inroads in adult mental health, where self-care is often referred to as ‘self-help’. For example, the recent growth in self-help for common mental health problems16 has been captured by England’s Improving Access to Psychological Therapies (IAPT) initiative,17 an initiative which has led to the formation of stand-alone primary care mental health services largely operating independently of routine secondary care mental health services. There has also been NIHR-commissioned research work on self-care in adult mental health,12 and the emphasis on ‘recovery’ – which maps well onto a framework of self-care18 – has been promoted by both the previous Labour and current coalition administrations as a key philosophy of adult mental health care.

Regarding services for CYP in general, self-care and self-care support also dovetail well with recent government policy for CYP. The relationship with policy was perhaps more explicit in the previous Labour administration, which wove themes such as supporting parents in their parenting role, early intervention, integrated working and the active participation of CYP into flagship policies such as Every Child Matters19 and the Children’s Plan,20 than in the current coalition administration. Although the coalition has a less specific focus on measurable outcomes,21 there is nothing in current policy that is necessarily at odds with a philosophy of self-care; indeed, the rebadging of ‘every child matters’ as ‘help children achieve more’ implies that support is necessary for CYP to achieve (though there have been some concerns that ‘achieve more’ refers primarily to educational achievement22), and elements of self-care and self-care support are implicit in aspects of the CYP’s IAPT initiative (see below), which was introduced during the lifetime of this study.

Nevertheless, the role that self-care support can play in the mental health of CYP is a largely unexplored area. It is not known, for example, whether or not self-care support interventions and services are being commissioned and provided in England and Wales – the geographical remit of the NIHR Service Delivery and Organisation programme at the time the study was commissioned – nor whether there exists a substantive body of literature in this area. There is no Cochrane Library entry for this area of work, and the only work we know of that is explicitly embedded in a self-care support framework is the work related to attention deficit hyperactivity disorder (ADHD) that some of us (Kirk; Pryjmachuk) carried out as part of a previous NIHR study,15 and a few examples (eating disorders, bed-wetting and behavioural disorders) cited in a Department of Health effectiveness report on self-care.23 We are aware of some peripheral work where self-care support might be implied, such as a Canadian (non-systematic) review of self-help therapies for childhood disorders24 and a systematic review of self-help technologies for emotional problems in young people25 (undertaken in part by a member of our team, Bower), as well as British research into psychological well-being in CYP in schools,2628 resilience29 and the generic Social and Emotional Aspects of Learning (‘SEAL’) initiative in schools.30 However this research has not been systematically explored or co-ordinated within the wider context of self-care support.

The position on self-care support in the mental health of CYP remains opaque despite the launch, shortly after this project commenced, of a CYP’s IAPT initiative in England.31 Unlike IAPT in adult mental health care, the CYP’s IAPT initiative is not explicitly tied to the notion of self-care (self-help) nor does it operate as a stand-alone service. Instead, the initiative is designed to transform CAMHS through staff (re)training, the use of evidence-based therapies and routine outcome measurements.31 This is not to say that CYP’s IAPT has no relevance to a project on self-care support in CYP’s mental health (indeed, as we will discuss later, some of our findings have a significant overlap with some of the operating principles of the CYP’s IAPT), just that self-care and self-care support are not explicit in its principles.

Defining self-care and self-care support

Definitions of self-care vary according to who engages in the self-care behaviour (individual, family or community); what the context is (health promotion, illness prevention, limiting the impact of illness or restoration of health); and the degree to which health professionals are involved.15

A consistent aspect to the various definitions is the conceptualisation of patients/service users as active, knowledgeable individuals rather than passive recipients of health care. The Department of Health32 sees self-care as:

The actions people take for themselves . . . to stay fit and maintain good physical and mental health; meet social and psychological needs; prevent illness or accidents; care for minor ailments and long-term conditions; and maintain health and wellbeing after an acute illness or discharge from hospital[.]

Reproduced from Department of Health. Self-Care – A Real Choice, Self-Care – A Practical Option. Document reference 266332. London: Department of Health; 2005. p. 1. The National Archives is acknowledged as custodian of this document

Self-care has currency in contemporary health-care provision for a number of reasons: a changing pattern of illness from one of acute to one of chronic (long-term) illnesses, together with a change in philosophy from cure to care; dissatisfaction with depersonalised (and, in mental health, often stigmatising) medical care, recently and bleakly crystallised in the Francis Inquiry report into care at Mid-Staffordshire Hospitals;33 consumerism and the desire for personal control in health matters and in interactions with health-care professionals, which is underpinned by the easy availability of health-related information on the internet; an increased awareness of the role lifestyle plays in relation to longevity and quality of life; and, finally, the need to increase access to care while controlling escalating health-care costs.32,34 Research evidence into the effectiveness of self-care suggests it has many benefits: the development of more effective working relationships with professionals; increases in patient/service user satisfaction; improvements in self-confidence; improved quality of life; increased concordance with interventions; more appropriate use of services; and increased patient knowledge and sense of control.23,35,36 Moreover, self-care often couples better outcomes with cost savings.37

As noted earlier, our study focuses on self-care support rather than self-care per se. As the Department of Health notes,14 support for self-care can come in a variety of guises (e.g. information provision, skills training, professional education) and can be delivered through a variety of platforms (e.g. devices and technologies, real and virtual networks). The NHS has a particular role to play in self-care support: through its organisational structures and networks and the appropriate provision of information, interventions and technologies, it can (indeed, it has a responsibility to) create environments that support self-care – though self-care support may, of course, be delivered by other providers in the public, private and third sectors or even spontaneously by service users, as can be the case in real (physical) or virtual (online) support groups and networks.

Within this study, we have defined self-care as:

Any action a child or young person (or their parents) takes to promote their mental health, to prevent mental ill health, or to maintain or enhance their mental health and well-being following recovery from mental ill health.

Self-care support is thus:

Any service, intervention or technology directly or indirectly provided by the public, private or third sectors that aims to enhance the ability of children and young people (or their parents) to self-care in relation to their mental health and well-being.

Our study, therefore, focuses not only on self-care support for specific mental health conditions in CYP, but additionally on self-care support that might promote mental health, prevent mental ill health or help maintain mental health following recovery.

The organisation of child and adolescent mental health services

Throughout this report, we will make reference to two organisational hierarchies that have permeated the organisation of, and the literature on, child and adolescent mental health (CAMH) service provision. The first is very much a British approach; the second is used more internationally, though it is far from irrelevant to UK service provision and there is a degree of overlap between the two.

British child and adolescent mental health services and the ‘tier’ system

Given that we are interested in self-care support across primary, secondary and even tertiary care, it is worth briefly discussing the organisation of CAMHS in the UK. Since the publication of the seminal NHS Health Advisory Service report Together We Stand in 1995,38 CAMHS have been organised within a hierarchy of four tiers (Figure 1). Tier 4 equates to very specialised, normally inpatient services, including generic as well as specialised inpatient services such as eating disorders units. Tiers 2 and 3 roughly equate to specialised, but less intense, services. Day patient services tend to be Tier 3 services, for example, whereas outpatient and early intervention services would correlate with Tier 2 services. Tiers 2 to 4 are also associated with increasing levels of complexity in the CYP’s mental health experiences and personal circumstances. Tier 1 is the tier embedded within non-specialist, universal children’s services (e.g. in education, child care and primary care) and is concerned with the provision of mental health education and advice, mental health promotion, and prevention and screening in mental health.

FIGURE 1. The four-tier framework for the delivery of CAMHS in the UK (Kendal 2009; adapted from NHS Health Advisory Service 1995).

FIGURE 1

The four-tier framework for the delivery of CAMHS in the UK (Kendal 2009; adapted from NHS Health Advisory Service 1995).

Although the scope for improving service delivery and organisation cuts across both specialist (Tiers 2 to 4) and non-specialist (Tier 1) CAMHS provision, the scope for improvement is perhaps more marked in Tier 1 provision because mental health promotion and mental ill health prevention are central to provision at this tier. Moreover, and as a consequence, services at this tier can also help reduce referrals to the potentially stigmatising higher tiers. However, because there seemed to be little knowledge about self-care support at any level of CAMHS provision, we did not limit our investigation to any particular tier(s).

Intervention levels

The British tiers approach offers a service- and needs-focused perspective on the organisation of CAMHS; it is not the only approach, however. An alternative approach – also hierarchical and popular in both the USA and Australia – is to organise by intervention, whereby interventions are categorised according to the specific populations of CYP for whom they are suitable. These populations are determined by the presence or absence of symptoms and the degree to which symptoms, if present, are mild or severe (Table 1). In taking this approach, the lower intervention levels (universal and selective) can be seen broadly as preventative interventions, whereas the higher levels (indicated and treatment) can be seen broadly as interventions designed to manage specific symptoms.

TABLE 1

TABLE 1

An intervention hierarchy in CYP’s mental health

Study overview

The need for this study was based on three principal factors: the relative paucity of research on mental health self-care support for CYP; the potential to change and enhance service provision in this area, to the benefit of both the NHS and the service user; and its capacity to build upon and complement existing work on CYP’s mental health, including work carried out by members of the study team. This last point is pertinent as the study was commissioned to follow on from a previous NIHR-funded study that several of us were involved in,15 and it is complemented by a variety of relevant research from all of the study team members, including work with school nurses,40 work on emotional well-being in schools27,28 and work on self-help technologies in CYP’s mental health.25

In carrying out the study, we were guided, advised and supported by a stakeholder advisory group (SAG), made up of representatives from the health, education and social care professions as well as CYP and parent representatives (for details, see Appendix 1 ).

Aims and objectives

The aims of the study were:

  • to identify and evaluate the types of mental health self-care support used by, and available to, CYP and their parents
  • to establish how such support interfaces with statutory and non-statutory service provision.

These aims were operationalised via a series of specific objectives, namely:

  1. the provision of a descriptive overview of mental health self-care support services for CYP in England and Wales, including a categorisation of these services according to a self-care support typology developed in a previous study
  2. an examination of the effectiveness of such services
  3. an examination of the factors influencing the acceptability of such services to CYP and their parents
  4. an exploration of the barriers to the implementation of mental health self-care support services for CYP
  5. an exploration of the interface between such self-care support services and the NHS and other statutory and non-statutory service providers, in order to guide future planning in health and social care
  6. the identification of future research priorities for the NHS in this area.

The study comprises an evidence synthesis combined with primary research, conducted as two overlapping stages over a 2-year period. Stage 1 consisted of two inter-related elements that ran concurrently, both of which were designed to help us identify the types of mental health self-care support available to CYP. Stage 1a was designed to address questions about the effectiveness and acceptability of such self-care support, and consisted of a systematic search and two inter-related reviews of the international literature, together with a meta-analysis. Stage 1b was designed to identify service provision relating to mental health self-care support for CYP in England and Wales, and consisted of a wide-ranging and systematic search of relevant resources (the internet, physical and virtual networks, policy documents, etc.) in order to elicit a ‘typology’ of service provision similar to the one we produced for a previous NIHR project.15

Stage 2 involved a case study of service provision and was undertaken once Stage 1b’s systematic search was complete. In Stage 2, qualitative data were collected from key stakeholders in six sites, chosen to represent the typology emerging from Stage 1b, and in order to further explore issues such as acceptability, barriers to implementation, and the interface between self-care support services and statutory/non-statutory sector provision.

Stage 1a addressed research objectives 1, 2 and 3; Stage 1b, research objectives 1 and 5. Stage 2 addressed research objectives 3, 4 and 5. All of the stages of the study contributed to research objective 6. A schematic overview of the study can be found in Figure 2 .

FIGURE 2. Schematic overview of the study.

FIGURE 2

Schematic overview of the study.

The report

This report is organised such that Chapter 2 outlines the methods underpinning Stage 1a – the systematic literature reviews and meta-analysis – while the findings from these reviews and the meta-analysis are reported in Chapter 3 . Chapter 4 provides an overview of the methods and findings from the mapping exercise (Stage 1b), and Chapter 5 an overview of the methods and findings from the case study research (Stage 2). Chapter 6 , the discussion chapter, synthesises the data from the various strands of the study, concluding with some comments on the implications of the study for commissioners and managers of services, as well as for the practice and research communities.

A note on terminology

Throughout this report, we use ‘parent’ in preference to other terms such as ‘guardian’ or the more widespread ‘carer’ merely to avoid inelegant terms such as ‘parent/carer’ or ‘parent/guardian’. We have done this purely because our experience of working with parents is that they prefer this term. In opting for this preference, however, we fully acknowledge that some of those successfully parenting children are not necessarily biological parents.

Copyright © Queen’s Printer and Controller of HMSO 2014. This work was produced by Pryjmachuk et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Included under terms of UK Non-commercial Government License.

Bookshelf ID: NBK262970

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