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Consent, privacy and confidentiality
Babies, children and young people’s experience of healthcare
Evidence review C
NICE Guideline, No. 204
National Guideline Alliance (UK).
London: National Institute for Health and Care Excellence (NICE); 2021 Aug.
ISBN-13: 978-1-4731-4231-2
Consent, privacy and confidentiality
Review question
How should issues about consent, privacy and confidentiality be addressed with babies, children and young people?
Introduction
Babies, children and young people accessing healthcare have the right to consent to treatment, and rights to privacy and confidentiality. These rights are outlined both in the United Nations Convention on the Rights of the Child (UNCRC) and the NHS Constitution, and this review did not aim to assess the validity of these rights.
The provision of consent is covered by professional frameworks and international human rights laws, and young people over 16 have the right to consent to their own treatment. Those under the age of 16 can consent if they have the competence to do so, otherwise someone with parental responsibility can consent on their behalf.
The right to privacy includes privacy and dignity during discussions, examination, treatment and care, and the right to confidentiality includes the restricted use and sharing of personal and identifiable data and access to health records.
The aim of this review was to determine how children and young people, and the parents or carers of babies and young children prefer discussions about their privacy and confidentiality to be addressed by healthcare services and healthcare providers, as well as their views and preferences on discussions about consent.
Summary of the protocol
See Table 1 for a summary of the population, phenomenon of interest and primary outcomes characteristics of this review.
Table 1
Summary of the protocol.
For further details see the review protocol in appendix A.
Methods and process
This evidence review was developed using the methods and process described in developing NICE guidelines: the manual. Methods for this review question are described in the review protocol in appendix A and the methods supplement.
Clinical evidence
Included studies
This was a qualitative review with the aim of:
- Understanding how children and young people, or the parents or carers of babies and very young children prefer discussions about privacy and confidentiality to be addressed by healthcare services and healthcare providers
- Understanding the views and preferences of children and young people, or the parents or carers of babies and very young children regarding discussions about consent
A systematic review of the literature was conducted using a combined search. Five studies were included in this review; 4 were qualitative studies (Ali 2017, Babbage 2018, Sullivan 2020, and Svirydzenka 2017) and 1 used a mixed-methods study design (Edbrooke-Childs 2019). Of the 4 qualitative studies, 3 conducted semi-structured interviews and 1 conducted a focus group. All studies were conducted in the UK.
The included studies are summarised in Table 2.
The data from the included studies were synthesised and explored in a number of central themes and sub-themes (as shown in Figure 1). Main themes are shown in dark blue, and sub-themes in pale blue.
Figure 1
Theme map. CAMHS: Child and Adolescent Mental Health Services
See the literature search strategy in appendix B and study selection flow chart in appendix C.
Excluded studies
Studies not included in this review are listed, and reasons for their exclusion are provided in appendix K.
Summary of studies included in the evidence review
Summaries of the studies that were included in this review are presented in Table 2.
Table 2
Summary of included studies.
See the full evidence tables in appendix D. No meta-analysis was conducted (and so there are no forest plots in appendix E).
Quality assessment of studies included in the evidence review
A summary of the strength of evidence (overall confidence), assessed using GRADE-CERQual is presented according to the main themes. For each of the sub-themes the overall confidence was judged to be:
Main theme 1: What to expect
- Sub-theme 1.1: Sexual relationships. The overall confidence in this theme was judged to be very low.
Main theme 2: Services
- Sub-theme 2.1: Barriers to accessing Child and Adolescent Mental Health Service (CAMHS). The overall confidence in this sub-theme was judged to be very low.
- Sub-theme 2.2: Benefits of using online services. The overall confidence in this sub-theme was judged to be very low.
- Sub-theme 2.3: Quality of CAMHS. The overall confidence in this sub-theme was judged to be very low.
- Sub-theme 2.4: Uncertainty about consequences. The overall confidence in this sub-theme was judged to be very low.
Main theme 3: Technology
- Sub-theme 3.1: Peer support. The overall confidence in this sub-theme was judged to be low.
- Sub-theme 3.2: Privacy and confidentiality. The overall confidence in this sub-theme was judged to be very low.
- Sub-theme 3.3: Safety. The overall confidence in this sub-theme was judged to be low.
Findings from the studies are summarised in GRADE-CERQual tables. See the evidence profiles in appendix F.
Evidence from reference groups and focus groups
The children and young people’s reference groups and focus groups provided additional evidence for this review. A summary of the findings is presented in Table 3.
Table 3
Summary of the evidence from reference groups and focus groups.
See the full evidence summary in appendix M.
Evidence from national surveys
The grey literature review of national surveys of children and young people’s experience provided additional evidence for this review. A summary of the findings is presented in Table 4.
Table 4
Summary of the evidence from national surveys.
See the full evidence summary in appendix N.
Economic evidence
Included studies
A systematic review of the economic literature was conducted but no studies were identified which were applicable to this review question. A single economic search was undertaken for all topics included in the scope of this guideline. See supplementary material 6 for details
Excluded studies
Economic studies not included in this review are listed, and reasons for their exclusion are provided in appendix K.
Summary of studies included in the economic evidence review
No studies were identified which were applicable to this review question.
Economic model
No economic modelling was undertaken for this review because the committee agreed that other topics were higher priorities for economic evaluation.
The committee’s discussion of the evidence
Interpreting the evidence
The outcomes that matter most
The aim of this review was to identify how to address issues about consent, privacy and confidentiality with children and young people, and with the parents or carers of babies and young children. To address this, the review was qualitative and as a result the committee could not specify in advance the data that would be identified. Instead they identified the following main themes to guide the review, although the list was not intended to be exhaustive:
- Availability of areas that enable privacy or provision of alternative measures to allow this (e.g. headphones on neonatal ward rounds)
- Difference between consent and assent
- Establishing that child or young person understands legal issues or their rights
- Knowledge of child’s or young person’s attitude to confidentiality, privacy, and consent
- Knowledge and understanding of what child or young person is legally entitled to or has the right to do (e.g.
- Knowledge and understanding of when information can be shared (e.g. with parents)
- Prior promotion of rights to, or respect for, privacy and confidentiality
- Provision of or access to age-appropriate information
- Reflection by staff on their own attitudes towards confidentiality, privacy and consent
The themes that were identified from the data were: what to expect regarding (especially about sexual relationships); barriers to accessing, and benefits of using and knowing about, services; and the use of technology (e.g. mobile phone applications) and related issues regarding how their data can be used (e.g. privacy and confidentiality). The committee did not prioritise any of these outcomes and considered all of them when writing their recommendations.
The quality of the evidence
The quality of the evidence for this review was assessed using GRADE-CERQual. The quality of the methodology of the individual studies was assessed using the Critical Appraisal Skills Programme (CASP) checklist.
The quality of included review findings ranged from very low to low and no study was directly relevant to the review question. All sub-themes were downgraded in all areas of quality assessment. Methodological limitations of the included studies lowered the quality assessment mainly due to concerns about how data analysis was conducted. The evidence was also downgraded for coherence as there were few studies for each sub-theme and the evidence supporting them was at best only reasonably compelling. The evidence was also downgraded due to relevance as none of the studies were directly relevant to the review question. Two studies also included young people over 18-years old and neither study reported sufficient information to determine the number of such participants (Ali 2017, Sullivan 2020).
The committee also noted that the evidence came from a limited number of settings (e.g. CAMHS, digital healthcare), but that there was evidence relating to mental health services, physical health services, digital health services, and also from a minority ethnic group.
Finally, the evidence was downgraded for adequacy because the studies taken together for each sub-theme only provided small amounts of data.
In addition to the small amount of evidence from the systematic review, the committee considered some evidence from the focus and reference groups and from the review of national surveys, as well as using their knowledge and experience when drafting the recommendations.
Benefits and harms
Before reviewing the evidence, the committee agreed that discussions about consent, privacy and confidentiality should be held directly with children and young people as soon as they were able to understand these concepts, and not by default with their parents or carers, and so made a recommendation to this effect. The committee discussed the fact that children and young people have the right to consent to (or refuse) treatment, and have rights to privacy and confidentiality. These rights are defined in the NHS Constitution and the United Nations Convention on the Rights of the Child (UNCRC), but the committee agreed that children and young people were not always aware of their rights. They therefore made an over-arching recommendation to ensure that children and young people were informed of their rights. The committee were also aware of guidance from national regulators such as the General Medical Council and the Nursing and Midwifery Council which put a responsibility on healthcare professionals to adhere to certain standards relating to consent, privacy and confidentiality, and so the committee included this in an over-arching recommendation.
None of the systematic review evidence related specifically to consent, but the committee agreed, based on their experience, that all children and young people should be involved as much as possible in decisions about their care, and be supported to make their own consent decisions, where they had the capacity to do so. The committee discussed how different children will have different levels of understanding of their care and treatment, for example the age, and/or developmental stage of the child can influence their level of understanding, and this should be considered by the person discussing consent with them.
The committee discussed that sometimes treatment was required and consent (or assent) could not be obtained (for example emergency treatment, or treatment where children were at risk), but in these situations, it was still necessary to provide as much information and support as possible to the child or young person.
The committee discussed when there is a difference of opinion related to a healthcare situation that requires consent to be given. This difference of opinion could be between a child or young person and their parents or carers, or between the child and young person (or the parents or carers on behalf of a baby or young child), and healthcare professionals. The committee found it difficult to make specific recommendations about this situation, as there are often many factors to take into consideration (such as the severity of the condition, the age of the child, the balance of risks and benefits of the treatment options), but agreed that the key requirement was that families had access to independent advice and support to help resolve the situation, and so this is what they included in their recommendation.
The committee agreed it was important to have a separate recommendation on checking understanding and revisiting consent decisions. The committee discussed that as treatment progresses, and as the child’s opinion or ability to consent may change over time, it was important that consent is revisited, especially after any changes in care.
For the topics of privacy and confidentiality, the committee discussed how the themes that had been identified could inform their recommendations, but also agreed that as the right to privacy was in the NHS Constitution it would be useful to reiterate this in a recommendation. The committee adapted the wording from the NHS constitution to include privacy during discussions, examination and care. The committee made an additional recommendation about methods to ensure confidentiality, which included the use of private spaces for conversations.
The systematic review evidence presented included three main themes relating to privacy and confidentiality: what to expect (sub-themes: sexual relationships), services (sub-themes: quality, barriers to access) and technology (sub-themes: peer support, safety, privacy and confidentiality).
The evidence on technology showed that children are very aware of the risks to their privacy when technology is used, but also showed that children and young people think technology can be an important tool, for example, to allow peer support and sharing of experiences. There were some instances where children and young people thought that information on electronic applications should be private, but also recognised that in some instances for their own safety it may be necessary for information to be shared with their parents. The committee discussed how it is important that the same level of privacy and confidentiality is considered when information is collected or provided digitally as well as face to face, and made a recommendation to highlight that when using digital or virtual methods for consultations or discussions, children and young people should confirm that they are able to talk freely and are in a private space if needed.
The evidence theme on services identified that some children see that a service that keeps information anonymous or confidential is a measure of a good quality service. Children also expressed the view that involvement of their family in discussions about their health and wellbeing may vary depending on what aspect of healthcare was being discussed.
Based on the evidence and their own experience and expertise, the committee recommended that healthcare information should be kept private and confidential, but that confidentiality could not be maintained in certain circumstances (such as safeguarding concerns), and that ensuring the child or young person is fully informed is crucial. The committee also used the evidence on the involvement of family members to make a recommendation that children and young people should be offered the opportunity to see a healthcare professional without their parents or carers, or with another adult or peer, if they wish to. The committee noted that for some children and young people with communication difficulties, and who usually relied on their parents or carers for support with communication, it would be necessary to make special arrangements to ensure these children and young people could have private conversations without their parents or carers present, and so the committee specified this in a recommendation.
The committee also reviewed the evidence from the focus and reference groups relating to issues of consent, privacy and confidentiality. There was very limited evidence from the 4-7 year olds that they wanted to be asked before things were ‘done to them’. Across the older groups, there was limited understanding on the meaning of consent, privacy and in particular of confidentiality, and the committee agreed that this reinforced their recommendations that these issues should be explained to children in language they could understand. There were mixed views on whether it was better to discuss private issues with the doctor alone, or with parents or carers present, although most children and young people seemed to think that parents or carers could be useful and supportive when discussing sensitive matters, or could help explain things. The committee agreed that these comments were covered under their recommendations as these allowed for the option for children or young people to be seen with or without their parents or carers.
The national surveys had identified that young people were positive about having the opportunity to talk to a doctor or nurse without their parent or carer being present if they wanted to, which was one of the recommendations that had been made by the committee, and that most agreed that they had enough privacy when receiving care and treatment. The committee noted that young people from a range of ethnic backgrounds had reported reduced trust in the confidentiality of mental healthcare services, and this might mean they were less likely to access these services. However, this was only one of the factors mentioned by the young people (others were trust in the person, a good relationship and feeling at ease, safe and understood). The committee noted that the recommendations on privacy and confidentiality already included the fact that cultural sensitivities should be taken into account, and the recommendations on communication by healthcare staff covered building trust, putting people at ease and communicating with cultural sensitivity. The committee therefore decided not to make an additional recommendation based on the results of this survey.
Finally, the surveys reported that parents of babies on neonatal units reported that they valued privacy when discussing their baby’s care with staff and when breastfeeding or expressing milk. The committee noted that recommendations about privacy for breastfeeding and expressing milk were already covered by the NICE guideline on postnatal care.
The committee discussed the potential harms relating to consent, and noted that it was sometimes unclear who was responsible for obtaining consent, and that sometimes determining who undertakes this (providing the necessary information to the child or young person and discussing consent) may lead to delays. The committee also discussed that healthcare professionals require adequate training to ensure discussions around consent were carried out to a high standard. The committee discussed that fully informing children and young people of risks and benefits as part of obtaining consent may increase their anxiety, and agreed that children, young people or their parents should not be overburdened with information, but given information at an appropriate time and pace, and their understanding of key points checked.
The committee identified some potential harms relating to issues around privacy or confidentiality: children and young people may feel that being offered the opportunity to see a healthcare professional on their own means that this is what is expected of them, and that they may therefore feel pressured to be seen alone, even though they may prefer to have a parent or carer with them. The committee discussed that another possible harm from these recommendations was that a child or young person may request another adult to be present who may not be considered appropriate, and that safeguarding concerns should be considered in this instance
Cost effectiveness and resource use
There was no existing economic evidence for this review. The committee agreed that the recommendations could be adopted into routine practice, but there were potential costs to the health service as more time might be needed to allow discussions to take place concerning consent, privacy and confidentiality. The committee agreed that there may also be a need to consider the environment in which healthcare is delivered to provide privacy and ensure confidentiality. The committee expressed the view that any expense, which is likely to be modest, around consent and privacy is justifiable as this is central to the development of trust between doctors and children and young people, and such practices are a fundamental part of the UK’s healthcare system.
Other factors the committee took into account
In addition to the rights of the child described above, the committee were aware that there is also legislation enacted by the General Data Protection Regulations (GDPR) which governs the collection and use of personal data.
Based on stakeholder feedback the committee clarified the rights of children and young people to make decisions about their healthcare and to consent to treatment. This information was contained with the professional guidance documents that the committee had cross-referred to in the section on the guideline on consent, but the stakeholders requested that the key principles be included in the guideline itself. The committee therefore added an additional over-arching recommendation at the beginning of the guideline to state that children and young people aged 16 or 17 years are entitled to make decisions about their own healthcare and to consent to or refuse treatment, and that those under 16 can do this if they are deemed by the healthcare professional to be Gillick competent. |The committee agreed that making judgements on the competence of children or young people in this way was part of the professional role of all healthcare professionals who worked with children and young people.
Recommendations supported by this evidence review
This evidence review supports recommendations 1.1.1, 1.1.3 and 1.4.1 to 1.4.14 in the NICE guideline.
References
Ali 2017
Ali, N., McLachlan, N., Kanwar, S., Randhawa, G., Pakistani young people’s views on barriers to accessing mental health services, International Journal of Culture and Mental Health, 10, 33–43, 2017Babbage 2019
Babbage, C., Jackson, G. M., Nixon, E., Desired Features of a Digital Technology Tool for Self-Management of Well-Being in a Nonclinical Sample of Young People: Qualitative Study, JMIR Mental Health, 5, e10067, 2018 [PMC free article: PMC6315233] [PubMed: 30563820]Edbrooke-Childs 2019
Edbrooke-Childs, J., Edridge, C., Averill, P., Delane, L., Hollis, C., Craven, M. P., Martin, K., Feltham, A., Jeremy, G., Deighton, J., Wolpert, M., A Feasibility Trial of Power Up: Smartphone App to Support Patient Activation and Shared Decision Making for Mental Health in Young People, JMIR MHealth and UHealth, 7, e11677, 2019 [PMC free article: PMC6682268] [PubMed: 31165709]Sullivan 2020
Sullivan, V., de Sa, J., Hamlyn, E., Baraitser, P. How can we facilitate online disclosure of safeguarding concerns in under 18s to support transition from online to face-to-face care?, International journal of STD & AIDS, 31(6), 553–559, 2020. [PubMed: 32295476]Svirydenka 2017
Svirydzenka, N., Ronzoni, P., Dogra, N., Meaning and barriers to quality care service provision in Child and Adolescent Mental Health Services: Qualitative study of stakeholder perspectives, BMC health services research, 17, 151, 2017 [PMC free article: PMC5319051] [PubMed: 28219392]
Appendices
Appendix A. Review protocol
Appendix B. Literature search strategies
Appendix C. Clinical evidence study selection
Appendix D. Clinical evidence tables
Appendix E. Forest plots
Forest plots for review question: How should issues about consent, privacy and confidentiality be addressed with babies, children and young people?
No meta-analysis was conducted for this review question and so there are no forest plots.
Appendix F. GRADE-CERQual tables
Appendix G. Economic evidence study selection
Economic evidence study selection for review question: How should issues about consent, privacy and confidentiality be addressed with babies, children and young people?
No economic evidence was identified which was applicable to this review question.
Appendix H. Economic evidence tables
Economic evidence tables for review question: How should issues about consent, privacy and confidentiality be addressed with babies, children and young people?
No evidence was identified which was applicable to this review question.
Appendix I. Economic evidence profiles
Economic evidence profiles for review question: How should issues about consent, privacy and confidentiality be addressed with babies, children and young people?
No economic evidence was identified which was applicable to this review question.
Appendix J. Economic analysis
Economic evidence analysis for review question: How should issues about consent, privacy and confidentiality be addressed with babies, children and young people?
No economic analysis was conducted for this review question.
Appendix K. Excluded studies
Excluded studies for review question: How should issues about consent, privacy and confidentiality be addressed with babies, children and young people?
Clinical studies
Table 10Excluded studies and reasons for their exclusion
| Study | Reason for Exclusion |
|---|---|
| Palatability of hypoallergenic formulas for cow’s milk allergy and healthcare professional recommendation, Pediatric allergy and immunology, 29, 857–862, 2018 [PubMed: 30192414] | Healthcare providers views only |
| Can text messages increase safer sex behaviours in young people? Intervention development and pilot randomized controlled trial, Health technology assessment. 20 (57) (pp 1–81), 2016. Date of publication: august 2016., 2016 [PMC free article: PMC4983705] [PubMed: 27483185] | No relevant qualitative data |
| Diagnosis, assessment, and treatment of childhood eczema in primary care: crosssectional study, BJGP open, 1, 2017 [PMC free article: PMC6169955] [PubMed: 30564671] | No qualitative data |
| Aagaard, L., Christensen, A., Hansen, E. H., Information about adverse drug reactions reported in children: A qualitative review of empirical studies, British Journal of Clinical Pharmacology, 70, 481–491, 2010 [PMC free article: PMC2950983] [PubMed: 20840440] | Systematic review - included studies checked for inclusion, no relevant studies |
| Aantaa,R., Sedation in PICU, Acta Anaesthesiologica Scandinavica, Supplement, 53, 3–5, 2009 | Conference Abstract |
| Aarthun, A., Akerjordet, K., Parent participation in decision-making in health-care services for children: an integrative review, Journal of nursing management, 22, 177–191, 2014 [PubMed: 23406447] | Systematic review. Included studies checked for inclusion - 2 were identified |
| Aazh, H., Moore, B. C., Lammaing, K., Cropley, M., Tinnitus and hyperacusis therapy in a UK National Health Service audiology department: Patients’ evaluations of the effectiveness of treatments, International journal of audiology, 55, 514–522, 2016 [PMC free article: PMC4950421] [PubMed: 27195947] | No qualitative data |
| Abbas, F., Luhar, A., Terry, D., Swallowing medicines: A study of paediatric patients, Archives of disease in childhood, 99 (8), e3, 2014 | Conference Abstract |
| Abbott, David, Carpenter, John, “The things that are inside of you are horrible”: Children and young men with Duchenne muscular dystrophy talk about the impact of living with a long-term condition, Child Care in Practice, 21, 67–77, 2015 | Information too specific to be generalisable |
| Abbott, M., Bernard, P., Forge, J., Communicating a diagnosis of Autism Spectrum Disorder - a qualitative study of parents’ experiences, Clinical Child Psychology and Psychiatry, 18, 370–382, 2013 [PubMed: 22904114] | Population not in protocol - parental views with age of children 8-15. |
| Abdelrahim, Z., Dooley, A., Khan, A., Development of a paediatric specialist multidisciplinary down syndrome clinic, Archives of disease in childhood, 103 (Supplement 1), A162–A163, 2018 | Conference Abstract |
| Abela, K. M., Wardell, D., Rozmus, C., LoBiondo-Wood, G., Impact of Pediatric Critical Illness and Injury on Families: An Updated Systematic Review, Journal of pediatric nursing, 51, 21–31, 2020 [PubMed: 31874458] | Systematic review - included studies checked for inclusion, no relevant studies |
| Abelman, D. D., Mitigating risks of students use of study drugs through understanding motivations for use and applying harm reduction theory: a literature review, Harm reduction journal, 14, 68, 2017 [PMC free article: PMC5639593] [PubMed: 28985738] | Narrative review |
| Aberdeen, J. N., Burnett, R. K. F., Stewart, H. F., Greenberg, E., The use of patient reported outcome measures by primary medical providers in the pediatric sports population, Orthopaedic Journal of Sports Medicine. Conference: 6th Annual Meeting of the Pediatric Research in Sports Medicine Society, PRiSM, 7, 2019 | Conference Abstract |
| Abhyankar, P., Summers, B. A., Velikova, G., Bekker, H. L., Framing Options as Choice or Opportunity: Does the Frame Influence Decisions?, Medical decision making : an international journal of the Society for Medical Decision Making, 34, 567–582, 2014 [PubMed: 24732048] | Population not in protocol - adult women |
| Abrines Jaume, N., Hoffman, J., Wolpert, M., Law, D., Wright, E., Shared decision making in child and adolescent mental health services, Neuropsychiatrie de l’Enfance et de l’Adolescence, 1), S294, 2012 | Conference Abstract |
| Abu-Rajab, K., Scoular, A., Church, S., Connell, J., Winter, A., Hart, G., Identifying opportunities for sexually transmitted infection prevention: Analysis of critical points in the care pathways of patients with gonorrhoea, International Journal of STD and AIDS, 20, 170–175, 2009 [PubMed: 19255264] | Population not in protocol - age 15-66 with no way of discerning age of individual qualitative data. |
| Achten, J., Parsons, N. R., Edlin, R. P., Griffin, D. R., Costa, M. L., A randomised controlled trial of total hip arthroplasty versus resurfacing arthroplasty in the treatment of young patients with arthritis of the hip joint, BMC musculoskeletal disorders, 11, 8, 2010 [PMC free article: PMC2826290] [PubMed: 20074324] | Published protocol |
| Ackner, S., Skeate, A., Patterson, P., Neal, A., Emotional abuse and psychosis: A recent review of the literature, Journal of Aggression, Maltreatment and Trauma, 22, 1032–1049, 2013 | Too specific - child abuse and psychosis |
|
Actrn,, Mitii ABI: “Move it to improve it”: a randomised trial of novel web-based intervention for children with acquired brain injury, Http://www | Ongoing trial - still recruiting |
|
Actrn,, Patient navigators in children with chronic kidney disease, Http://www | Ongoing trial - still recruiting |
|
Actrn,, A randomized controlled trial comparing knowledge transfer regarding preoperative information to children and parents: interactive web-based format (Anesthesia Web) vs. conventional brochure information, Http://www | Ongoing trial - still recruiting |
|
Actrn,, A randomised controlled trial of a group intervention for family and friends of youth with borderline personality disorder, Http://www | Ongoing trial - still recruiting |
|
Actrn,, HARTI HAUORA TAMARIKI A Randomised Controlled Trial of an Opportunistic, Holistic and Family Centred Approach to Improving Outcomes for Hospitalised Children and their Families, Http://www | Ongoing trial - still recruiting |
|
Actrn,, A study of the impact of treating seizures that can be seen and those that can be seen only on a brain monitor in newborn babies, who are having seizures or at high risk of seizures, Http://www | Ongoing trial - still recruiting |
|
Actrn,, Action: pACT. Be Active. Online. A trial to promote physical activity in young people with cystic fibrosis, Http://www | Ongoing trial - still recruiting |
| Adams, C., Lockton, E., Freed, J., Gaile, J., Earl, G., McBean, K., Nash, M., Green, J., Vail, A., Law, J., The Social Communication Intervention Project: a randomized controlled trial of the effectiveness of speech and language therapy for school-age children who have pragmatic and social communication problems with or without autism spectrum disorder, International journal of language & communication disorders / Royal College of Speech & Language Therapists, 47, 233–244, 2012 [PubMed: 22512510] | No qualitative data |
| Adams, C., Lockton, E., Gaile, J., Earl, G., Freed, J., Implementation of a manualized communication intervention for school-aged children with pragmatic and social communication needs in a randomized controlled trial: the Social Communication Intervention Project, International journal of language & communication disorders / Royal College of Speech & Language Therapists, 47, 245–256, 2012 [PubMed: 22512511] | No qualitative data |
| Adams, N., Churchill, R., Eve, E., Chronic widespread pain in adolescents: A primary care based study, European Journal of Pain Supplements, 5 (1), 146, 2011 | Conference Abstract |
| Adewumi, A. D., Hollingworth, S. A., Maravilla, J. C., Connor, J. P., Alati, R., Prescribed Dose of Opioids and Overdose: A Systematic Review and Meta-Analysis of Unintentional Prescription Opioid Overdose, CNS Drugs, 32, 101–116, 2018 [PubMed: 29498021] | Systematic review - included studies checked for inclusion, no relevant studies |
| Aebi, M., Kuhn, C., Banaschewski, T., Grimmer, Y., Poustka, L., Steinhausen, H. C., Goodman, R., The contribution of parent and youth information to identify mental health disorders or problems in adolescents, Child and adolescent psychiatry and mental health, 11 (1) (no pagination), 2017 [PMC free article: PMC5408828] [PubMed: 28465720] | No qualitative data. |
| Aebi, Marcel, Kuhn, Christine, Metzke, Christa Winkler, Stringaris, Argyris, Goodman, Robert, Steinhausen, Hans-Christoph, The use of the development and well-being assessment (DAWBA) in clinical practice: A randomized trial, European child & adolescent psychiatry, 21, 559–567, 2012 [PMC free article: PMC3866649] [PubMed: 22722664] | No qualitative data |
| Ager, A., Zimmerman, C., Unlu, K., Rinehart, R., Nyberg, B., Zeanah, C., Hunleth, J., Bastiaens, I., Weldy, A., Bachman, G., Blum, A. B., Strottman, K., What strategies are appropriate for monitoring children outside of family care and evaluating the impact of the programs intended to serve them?, Child Abuse & Neglect, 36, 732–42, 2012 [PubMed: 23083900] | Systematic review - included studies checked for inclusion, no relevant studies |
| Agnew, T., Shared experience, Nursing Standard, 26, 22–4, 2012 [PubMed: 22953402] | Narrative article, not study |
| Agrawal, S., Morris, K., Whitehouse, W. P., Parent’s views about drug trials in children with refractory convulsive status epilepticus, Developmental Medicine and Child Neurology, 1), 16, 2009 [PubMed: 19740206] | Conference Abstract |
| Agwu, C. J., Scanlon, J., McCrea, K., Raffeeq, P., Kershaw, M., Broomhead, S., Eminson, J., Peer review: A tool to improve paediatric diabetes services, Hormone Research in Paediatrics, 1), 213, 2013 [PubMed: 24008238] | Conference Abstract |
| Ahmed, M., Boyd, C., Vavilikolanu, R., Rafique, B., Visual symptoms and childhood migraine: Qualitative analysis of duration, location, spread, mobility, colour and pattern, Cephalalgia, 38, 2017–2025, 2018 [PubMed: 29629600] | No qualitative data |
| Ahmed, S. A., Arasu, A., Ethical dilemma in neonatology, Archives of Disease in Childhood, 97, A300, 2012 | Conference Abstract |
| Ahmed, S. A., Arasu, A., Another ethical dilemma in neonatology, Archives of Disease in Childhood, 96, A72, 2011 | Conference Abstract |
| Ahmed, S., Ihe, C., Findings from a pre-clinic questionnaire given prior consultation at an NHS paediatric diabetes outpatient service in England-the patient’s perspective: A survey of patient/carer experience of a paediatric diabetes outpatient service, Pediatric Diabetes, 17 (Supplement 24), 127–128, 2016 [PubMed: 25594864] | Conference Abstract |
| Ainsworth, S., Raiising awareness of invisible illnesses in schools and education, Annals of the rheumatic diseases, 77 (Supplement 2), 10, 2018 | Conference Abstract |
| Ainsworth, S., Ainsworth, J., Preston, J., Stones, S., Challinor, R., Rowe, M., Introducing RAiISE-raising awareness of invisible illnesses in schools and education, Pediatric Rheumatology, 15 (Supplement 2), 67–68, 2017 [PubMed: 28830446] | Conference Abstract |
| Akhtar, M. A., Honeyman, C., Aziz, F., Greenough, C., Kalyan, R., Hekal, W., The sky’s the limit: Raising the quality and scope of communication for children with scoliosis and their families using digital and social media, British journal of neurosurgery, 30 (2), 177, 2016 | Conference Abstract |
| Al Maghaireh, Dua’a Fayiz, Abdullah, Khatijah Lim, Chan, Chong Mei, Piaw, Chua Yan, Al Kawafha, Mariam Mofleh, Systematic review of qualitative studies exploring parental experiences in the Neonatal Intensive Care Unit, Journal of Clinical Nursing, 25, 2745–2756, 2016 [PubMed: 27256250] | Systematic review - included studies checked for inclusion - 4 were identified |
| Aladangady, N., Shaw, C., Gallagher, K., Stokoe, E., Marlow, N., Short-Term outcome of treatment limitation discussions for newborn infants, a multicentre prospective observational cohort study, Archives of Disease in Childhood: Fetal and Neonatal Edition, 102, F104–F109, 2017 [PubMed: 27852667] | No qualitative data |
| Alan, D., Woolner, A. F., Skinner, R., King, D., Evaluation of infection control advice for patients at risk of chemotherapy-induced neutropaenia in two paediatric oncology centres in south africa and the United Kingdom, Pediatric Blood and Cancer, 57 (5), 846–847, 2011 | Conference Abstract |
| Alderson, H., Brown, R., Copello, A., Kaner, E., Tober, G., Lingam, R., McGovern, R., The key therapeutic factors needed to deliver behavioural change interventions to decrease risky substance use (drug and alcohol) for looked after children and care leavers: a qualitative exploration with young people, carers and front line workers, BMC medical research methodology, 19, 38, 2019 [PMC free article: PMC6385417] [PubMed: 30791874] | Population not in protocol - age 15-19 with no way of determining source of quote. |
| Alderson, H., Brown, R., Smart, D., Lingam, R., Dovey-Pearce, G., ‘You’ve come to children that are in care and given us the opportunity to get our voices heard’: The journey of looked after children and researchers in developing a Patient and Public Involvement group, Health expectations : an international journal of public participation in health care and health policy., 21, 2019 [PMC free article: PMC6737768] [PubMed: 31115138] | No information on communication |
| Alexakis, C., Davies, G., Stephens, J., Clark, S., Rogers, S., Poullis, A., Perspectives and attitudes of young patients with inflammatory bowel disease: Symptoms, burden of disease and communication with their healthcare professionals, Frontline Gastroenterology, 5, 197–202, 2014 [PMC free article: PMC5369726] [PubMed: 28839770] | No qualitative data |
| Alexakis, C., Nash, A., Lloyd, M., Brooks, F., Lindsay, J. O., Poullis, A., Inflammatory bowel disease in young patients: challenges faced by black and minority ethnic communities in the UK, Health & Social Care in the Community, 23, 665–672, 2015 [PubMed: 25660726] | No qualitative data for RQ1s in under 18s |
| Alexander, R., Walter, L. K., Progressive techniques to effectively prepare children for radiotherapy: A supportive framework combining informative films with a miniature working model LINAC, Pediatric Blood and Cancer, 62 (Supplement 4), S209, 2015 | Conference Abstract |
| Alexander, S., Bath, L., McDonald, M., Adolescent diabetic outpatient clinics-more than just an HbA1c, Archives of disease in childhood, 101 (Supplement 1), A275–A277, 2016 | Conference Abstract |
| Al-Gamal, Ekhlas, Long, Tony, The MM-CGI Cerebral Palsy: Modification and pretesting of an instrument to measure anticipatory grief in parents whose child has cerebral palsy, Journal of clinical nursing, 23, 1810–1819, 2014 [PubMed: 24131422] | No qualitative data |
| Al-Harthy, Z. S., Cowling, J. P., Mann, G. K., Salama, M., Medical intervention for children with medical complexity (MICMAC), Archives of disease in childhood, 3), A127–A128, 2015 | Conference Abstract |
| Alifrangis, C., Koizia, L., Rozario, A., Rodney, S., Harrington, M., Somerville, C., Peplow, T., Waxman, J., The experiences of cancer patients, Qjm, 104, 1075–81, 2011 [PubMed: 21835781] | Population not in protocol - aged 21 years and over |
| Aljafari, A. K., Scambler, S., Gallagher, J. E., Hosey, M. T., Parental views on delivering preventive advice to children referred for treatment of dental caries under general anaesthesia: A qualitative investigation, Community dental health, 31, 75–79, 2014 [PubMed: 25055603] | Views of parents with no way of discerning age of children. |
| Allcock, D., Smith, K., Exploring parent views of community matrons, Nursing Times, 110, 21–23, 2014 [PubMed: 24834602] | Questionnaires sent to parents - no way of discerning child age. |
| Allen, D., Gillen, E., Rixson, L., The Effectiveness of Integrated Care Pathways for Adults and Children in Health Care Settings: A Systematic Review, JBI Library of Systematic Reviewis, 7, 80–129, 2009 [PubMed: 27820426] | No qualitative data |
| Allen, D., Scarinci, N., Hickson, L., The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review, International Journal of Integrated Care [Electronic Resource]Int J Integr Care, 18, 14, 2018 [PMC free article: PMC6095060] [PubMed: 30127698] | Systematic review - included studies checked for inclusion - studies 5 were identified. |
| Allen, Kimberly A., Parental decision-making for medically complex infants and children: An integrated literature review, International Journal of Nursing Studies, 51, 1289–1304, 2014 [PMC free article: PMC4125505] [PubMed: 24636443] | Systematic review - included studies checked for inclusion - 1 was identified |
| Almunef, M., Mason, J., Curtis, C., Jalal, Z., The role of primary care pharmacist in the management of chronic illnesses in young people aged 10-24 years: A systematic review, International Journal of Pharmacy Practice, 27, 48–49, 2019 | Poster abstract |
| Almunef, M., Mason, J., Curtis, C., Jalal, Z., Management of chronic illness in young people aged 10-24 years: A systematic review to explore the role of primary care pharmacists, Archives of Disease in Childhood, 104, 2019 | Conference abstract |
| Alvi, S., Priestley, J., Whitehead, A., Walker, J., Mushtaq, T., The impact on families of receiving a diagnosis of congenital hypothyroidism, Hormone Research in Paediatrics, 1), 549, 2015 | Conference Abstract |
| Al-Zawaadi, M., Kayyali, R., Kelly, P., Evaluation of a pharmacist-led health intervention in a primary school, International journal of pharmacy practice, 27 (Supplement 1), 8–9, 2019 | Conference Abstract |
| Ambrogi, V., Tezenas Du Montcel, S., Collin, E., Coutaux, A., Bourgeois, P., Bourdillon, F., Care-related pain in hospitalized patients: Severity and patient perception of management, European journal of pain (united kingdom), 19, 313–321, 2015 [PubMed: 25055764] | No qualitative data. |
| Ames, C. S., Richardson, J., Payne, S., Smith, P., Leigh, E., Mindfulness-based cognitive therapy for depression in adolescents, Child and Adolescent Mental Health, 19, 74–78, 2014 [PubMed: 32878358] | Population not in protocol - received psychological treatment for depression/anxiety and symptoms of depression |
| Ames, K., Rennick, J., & Baillargeon, S., A qualitative interpretive study exploring parents’ perception of the parental role in the paediatric intensive care unit., Intensive & Critical Care Nursing, 27, 143–150, 2011 [PubMed: 21511474] | Population not in protocol - views of parents of children 0-17 with no way of discerning age. |
| Amin, A., Oragui, E., Khan, W., Puri, A., Psychosocial considerations of perioperative care in children, with a focus on effective management strategies, Journal of perioperative practice, 20, 198–202, 2010 [PubMed: 20586358] | Narrative review |
| Amsalem, D., Hasson-Ohayon, I., Gothelf, D., Roe, D., Subtle ways of stigmatization among professionals: The subjective experience of consumers and their family members, Psychiatric rehabilitation journal, 41, 163–168, 2018 [PubMed: 29985015] | Population not in protocol - no way of identifying age of participant |
| Anderson, C., Lupfer, A., Shattuck, P. T., Barriers to receipt of services for young adults with autism, Pediatrics, 141, S300–S305, 2018 [PubMed: 29610411] | Population not in protocol - young adults with autism who had left high school in the past 15 years. |
| Anderson, C., Roy, T., Patient experiences of taking antidepressants for depression: A secondary qualitative analysis, Research in Social and Administrative Pharmacy, 9, 884–902, 2013 [PubMed: 23219056] | No qualitative data for under 18s |
| Anderson, E. S., Ford, J. S., Learning to listen: A patient led innovation to improve student’s communication with patient feedback, Medical education, supplement, 2), 118–119, 2011 | Conference Abstract |
| Angelopoulou, M. V., Oulis, C. J., Kavvadia, K., School-based oral health-education program using experiential learning or traditional lecturing in adolescents: a clinical trial, International dental journal, 64, 278–284, 2014 [PMC free article: PMC9376399] [PubMed: 25142752] | No qualitative data. |
| Angold, A., Erkanli, A., Copeland, W., Goodman, R., Fisher, P. W., Costello, E. J., Psychiatric diagnostic interviews for children and adolescents: A comparative study, Journal of the American Academy of Child and Adolescent Psychiatry, 51, 506–517, 2012 [PMC free article: PMC3336098] [PubMed: 22525957] | No qualitative data |
| Anonymous,, The development and analysis of feedback from a pilot chronic pain group at the Royal Manchester Children’s Hospital, Rheumatology (united kingdom), 56 (Supplement 7), vii30, 2017 | Conference Abstract |
| Ansmann, L., Kowalski, C., Ernstmann, N., Ommen, O., Pfaff, H., Patients’ perceived support from physicians and the role of hospital characteristics, International Journal for Quality in Health Care, 24, 501–8, 2012 [PubMed: 22864106] | No qualitative data |
| Antao, V., Evaluation of post-diagnostic support to families and children with autism spectrum disorder, Developmental medicine and child neurology, 4), 69, 2010 | Conference Abstract |
| Anttila, A., Rappaport, D. I., Tijerino, J., Zaman, N., Sharif, I., Interpretation Modalities Used on Family-Centered Rounds: Perspectives of Spanish-Speaking Families, Hospital Pediatrics, 7, 492–498, 2017 [PubMed: 28705913] | Views of parents with age of children not reported. |
| Arai, L., Bettany-Saltikov, J., Hamilton, S., Findings from a small-scale, exploratory content analysis of information provided to AIS patients and their parents from NHS Scoliosis Hospital Clinics, Scoliosis. Conference: 9th International Conference on Conservative Management of Spinal Deformities SOSORT, 8, 2012 | Conference Abstract |
| Archibald, Mandy, Scott, Shannon, Hartling, Lisa, Mapping the waters: A scoping review of the use of visual arts in pediatric populations with health conditions, Arts & Health: An International Journal of Research, Policy and Practice, 6, 5–23, 2014 | Systematic review - included studies checked for inclusion - 1 was identified. |
| Arheiam, A., Albadri, S., Laverty, L., Harris, R., Reasons for low adherence to diet-diaries issued to pediatric dental patients: A collective case study, Patient Preference and Adherence, 12, 1401–1411, 2018 [PMC free article: PMC6078093] [PubMed: 30122905] | No qualitative data for under 18s |
| Arheiam, A., Brown, S. L., Burnside, G., Higham, S. M., Albadri, S., Harris, R. V., The use of diet diaries in general dental practice in England, Community dental health, 33, 267–273, 2016 [PubMed: 28537363] | Views of healthcare professionals |
| Armitage, S., Swallow, V., Kolehmainen, N., Ingredients and change processes in occupational therapy for children: a grounded theory study, Scandinavian journal of occupational therapy, 24, 208–213, 2017 [PubMed: 27454899] | Not relevant to privacy and confidentiality |
| Armoiry, Xavier, Sturt, Jackie, Phelps, Emma Elizabeth, Walker, Clare-Louise, Court, Rachel, Taggart, Frances, Sutcliffe, Paul, Griffiths, Frances, Atherton, Helen, Digital clinical communication for families and caregivers of children or young people with short- or long-term conditions: Rapid review, Journal of Medical Internet Research Vol 20(1), 2018, ArtID e5, 20, 2018 [PMC free article: PMC5775486] [PubMed: 29305339] | Systematic review - included studies checked for inclusion - 1 was identified |
| Armoogum, J., Cathcart, E., Cazenove, E., Knott, C., Mathambo, N., Tompsitt, L., Vevers, J., Wall, M., Bridging the gap: Giving information to young people undergoing bone marrow transplants using modern media, Bone Marrow Transplantation, 1), S421, 2011 | Conference Abstract |
| Arnab, Sylvester, Brown, Katherine, Clarke, Samantha, Dunwell, Ian, Lim, Theodore, Suttie, Neil, Louchart, Sandy, Hendrix, Maurice, de Freitas, Sara, The development approach of a pedagogically-driven serious game to support Relationship and Sex Education (RSE) within a classroom setting, Computers & Education, 69, 15–30, 2013 | Description of health education tool development |
| Arnott, J., Hesselgreaves, H., Nunn, A. J., Peak, M., Pirmohamed, M., Smyth, R. L., Turner, M. A., Young, B., Enhancing Communication about Paediatric Medicines: Lessons from a Qualitative Study of Parents’ Experiences of Their Child’s Suspected Adverse Drug Reaction, Plos one, 7 (10) (no pagination), 2012 [PMC free article: PMC3468607] [PubMed: 23071535] | Not related to privacy and confidentiality |
| Arnott, J., Nunn, A. J., Mannix, H., Peak, M., Pirmohamed, M., Smyth, R. L., Turner, M. A., Young, B., Communicating with parents following a suspected adverse drug reaction in a child: Who says what and when?, Archives of disease in childhood, 3), A10–A11, 2015 | Conference Abstract |
| Arnott, J., Turner, M. A., Hesselgreave, H., Nunn, A. J., Peak, M., Pirmohamed, M., Smyth, R. L., Young, B., Parents’ experiences of adverse drug reations in children: Qualitative study, Pharmacoepidemiology and Drug Safety, 21 (1), 112, 2012 | Conference Abstract |
| Aronson, P. L., Shapiro, E. D., Niccolai, L. M., Fraenkel, L., Shared Decision-Making with Parents of Acutely Ill Children: A Narrative Review, Academic pediatrics, 18, 3–7, 2018 [PMC free article: PMC5756675] [PubMed: 28723588] | Systematic review - included studies checked for inclusion, no relevant studies |
| Ashcraft, L. E., Asato, M., Houtrow, A. J., Kavalieratos, D., Miller, E., Ray, K. N., Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies, Patient, 12, 199–212, 2019 [PMC free article: PMC6397702] [PubMed: 30328069] | Systematic review - included studies checked for inclusion, no relevant studies |
| Aslam, A., Children’s preference in selecting an emollient of their choice, British journal of dermatology, 1), 116, 2009 | Conference Abstract |
| Astbury, R., Shepherd, A., Cheyne, H., Working in partnership: the application of shared decision-making to health visitor practice, Journal of Clinical Nursing, 26, 215–224, 2017 [PubMed: 27459947] | Not related to privacy and confidentiality |
| Aston, Hermione J., Lambert, Nathan, Young people’s views about their involvement in decision-making, Educational Psychology in Practice, 26, 41–51, 2010 | Setting not in protocol - Shared decision making in education only |
| Aston, J., Terry, D., Nusgen, U., Champaneri, N., Prescribed antimicrobial therapy: What parents/carers are told and what they would like to know, Archives of Disease in Childhood. Conference: 18th Neonatal and Paediatric Pharmacists Group, NPPG Annual Conference. Liverpool United Kingdom. Conference Publication:, 98, 2013 | Conference Abstract |
| Aston, J., Wilson, K. A., Terry, D. R. P., The treatment-related experiences of parents, children and young people with regular prescribed medication, International journal of clinical pharmacy, 41, 113–121, 2019 [PMC free article: PMC6394506] [PubMed: 30478490] | Views of parents with no way of discerning age of children |
| Aston, J., Wilson, K., Terry, D., Starting a new medicine study, Archives of disease in childhood, 101 (9), A28, 2016 [PubMed: 27540240] | Conference Abstract |
| Atkins, E., Colville, G., John, M., Finding the way to a ‘new normal’: Families’ recovery in the year after a paediatric intensive care admission, Pediatric critical care medicine, 1), A3–A4, 2011 | Conference Abstract |
| Aubugeau-Williams, P., Brierley, J., Consent in paediatric intensive care: A qualitative study of parental & professional views, Archives of Disease in Childhood. Conference: Great Ormond Street Hospital Conference, GOSH, 102, 2017 | Conference Abstract |
| Audrey, S., Batista Ferrer, H., Ferrie, J., Evans, K., Bell, M., Yates, J., Roderick, M., Macleod, J., Hickman, M., Impact and acceptability of self-consent procedures for the school-based human papillomavirus vaccine: A mixed-methods study protocol, BMJ open, 8 (3) (no pagination), 2018 [PMC free article: PMC5879539] [PubMed: 29502095] | Published protocol |
| Azevedo, Avds, Lanconi, A. C. Junior, Crepaldi, M. A., Nursing team, family and hospitalized child interaction: an integrative review, Ciencia & Saude ColetivaCienc, 22, 3653–3666, 2017 [PubMed: 29211171] | Systematic review - included studies checked for inclusion - 1 was identified |
| Azzopardi, L. M., Serracino-Inglott, A., Zarb-Adami, M., Portanier, F. S., Evaluation of patient information leaflets for non-prescription medicines, International journal of pharmacy practice, 2), 81–82, 2010 | Conference Abstract |
| Badri, P., Saltaji, H., Flores-Mir, C., Amin, M., Factors affecting children’s adherence to regular dental attendance: a systematic review, Journal of the American Dental Association (1939), 145, 817–828, 2014 [PubMed: 25082930] | Systematic review - included studies checked for inclusion - 1 was identified |
| Bailey, J. V., Webster, R., Hunter, R., Freemantle, N., Rait, G., Michie, S., Estcourt, C., Anderson, J., Gerressu, M., Stephenson, J., et al.,, The Men’s Safer Sex (MenSS) trial: protocol for a pilot randomised controlled trial of an interactive digital intervention to increase condom use in men, BMJ open, 5, e007552, 2015 [PMC free article: PMC4336456] [PubMed: 25687900] | Published protocol |
| Baird, Jennifer, Davies, Betty, Hinds, Pamela S., Baggott, Christina, Rehm, Roberta S., What impact do hospital and unit-based rules have upon patient and family-centered care in the pediatric intensive care unit?, Journal of pediatric nursingJ Pediatr Nurs, 30, 133–142, 2015 [PMC free article: PMC4405525] [PubMed: 25450441] | Population not in protocol - age >18 years old. |
| Baker, Erika, Baibazarova, Eugenia, Ktistaki, Georgia, Shelton, Katherine H., van Goozen, Stephanie H., Development of fear and guilt in young children: Stability over time and relations with psychology, Development and psychopathology, 24, 833–845, 2012 [PubMed: 22781857] | No qualitative data |
| Balato, N., Megna, M., Di Costanzo, L., Balato, A., Ayala, F., Educational and motivational support service: a pilot study for mobile-phone-based interventions in patients with psoriasis, British journal of dermatology, 168, 201–205, 2013 [PubMed: 23240729] | No qualitative data. |
| Bancroft, V., Ganesan, V., Pistrang, N., Murphy, T., How adolescents and their parents understand and manage paediatric stroke, Developmental Medicine and Child Neurology, 3), 14–15, 2010 [PubMed: 19811513] | Conference Abstract |
| Banks, J., Cramer, H., Sharp, D. J., Shield, J. P., Turner, K. M., Identifying families’ reasons for engaging or not engaging with childhood obesity services: a qualitative study, Journal of child health care, 18, 101–110, 2014 [PubMed: 23728931] | Population not in protocol - parental views of children >5 years old. Children present in some interviews but no way of identifying which themes used data from them |
| Barber, S., Bekker, H., Marti, J., Pavitt, S., Khambay, B., Meads, D., Development of a Discrete-Choice Experiment (DCE) to Elicit Adolescent and Parent Preferences for Hypodontia Treatment, Patient, 12, 137–148, 2019 [PMC free article: PMC6335368] [PubMed: 30367434] | Description of questionnaire development. No qualitative data. |
| Barber, S., Pavitt, S., Meads, D., Khambay, B., Bekker, H., Assessment of information resources for people with hypodontia, Bdj Open, 4, 18001, 2018 [PMC free article: PMC5844244] [PubMed: 29607094] | Population not in protocol - views and experiences of healthcare professionals |
| Barber, S., Pavitt, S., Meads, D., Khambay, B., Bekker, H., Can the current hypodontia care pathway promote shared decision-making?, Journal of orthodontics, 46, 126–136, 2019 [PubMed: 31060465] | Not related to privacy and confidentiality |
| Boyden, P., Muniz, M., Laxton-Kane, M., Listening to the views of children with learning disabilities: An evaluation of a learning disability CAMHS service, Journal of Intellectual Disabilities, 17, 51–63, 2013 [PubMed: 23257112] | Not related to privacy and confidentiality |
| Brodsgaard, A., Pedersen, J. T., Larsen, P., Weis, J., Parents’ and nurses’ experiences of partnership in neonatal intensive care units: A qualitative review and meta-synthesis, Journal of Clinical Nursing, 28, 3117–3139, 2019 [PubMed: 31112337] | Systematic review - included studies checked for inclusion, no relevant studies |
| Brown, Freddy Jackson, Guvenir, Jane, The experiences of children with learning disablilities, their carers and staff during a hospital admission, British Journal of Learning Disabilities, 37, 110–115, 2009 | Not relevant to privacy and confidentiality |
| Byron et al, “You learn from each other”: LGBTIQ Young People’s Mental Health Help-seeking and the RAD Australia Online Directory. , 2016 | Country: Australia |
| Cameron, M. A., Schleien, C. L., Morris, M. C., Parental presence on pediatric intensive care unit rounds, J Pediatr, 155, 522–8, 2009 [PubMed: 19555968] | Country: USA |
| Chaturvedi, Surabhi, Accessing psychological therapies: Homeless young people’s views on barriers and facilitators, Counselling and Psychotherapy Research, 16, 54–63, 2016 | Population not in protocol - age 16-25 with no further information. |
| Coker, T. R., Sareen, H. G., Chung, P. J., Kennedy, D. P., Weidmer, B. A., Schuster, M. A., Improving access to and utilization of adolescent preventive health care: the perspectives of adolescents and parents, J Adolesc Health, 47, 133–42, 2010 [PubMed: 20638005] | Country: USA |
| Comp, D., Improving parent satisfaction by sharing the inpatient daily plan of care: an evidence review with implications for practice and research, Pediatric nursing, 37, 237–242, 2011 [PubMed: 22132568] | Systematic review - included studies checked for inclusion, no relevant studies |
| Coyne, I., Children, parents, and healthcare professionals perspectives on childrens participation in shared decision making, European Journal of Oncology, 15, 275–276, 2011 | Conference abstract |
| Coyne, I., Amory, A., Kiernan, G., Gibson, F., Children’s participation in shared decision-making: children, adolescents, parents and healthcare professionals’ perspectives and experiences, Eur J Oncol Nurs, 18, 273–80, 2014 [PubMed: 24629505] | Country: Ireland |
| Coyne, I., Gallagher, P., Participation in communication and decision-making: children and young people’s experiences in a hospital setting, J Clin Nurs, 20, 2334–43, 2011 [PubMed: 21410571] | Country: Ireland |
| Coyne, I., Kirwan, L., Ascertaining children’s wishes and feelings about hospital life, J Child Health Care, 16, 293–304, 2012 [PubMed: 23027522] | Country: Ireland |
| Crowley, Making it matter: improving the health of homeless young people., 2012 | Population not in protocol - age 16-25 with no further information. |
| Curtis-Tyler, K., Facilitating children’s contributions in clinic? Findings from an in-depth qualitative study with children with Type 1 diabetes, Diabetic medicine, 29, 1303–1310, 2012 [PubMed: 22612727] | Not relevant to privacy and confidentiality |
| Daley, A. M., Polifroni, E. C., Sadler, L. S., “Treat Me Like a Normal Person!” A Meta-Ethnography of Adolescents’ Expectations of Their Health Care Providers, Journal of pediatric nursing, 36, 70–83, 2017 [PubMed: 28888515] | Systematic review - included studies checked for inclusion, no relevant studies |
| Daniels, Karen, Cultural agents creating texts: A collaborative space adventure, Literacy, 48, 103–111, 2014 | Not relevant to privacy and confidentiality |
| Davey, A., Asprey, A., Carter, M., Campbell, J. L., Trust, negotiation, and communication: young adults’ experiences of primary care services, BMC family practice, 14, 202, 2013 [PMC free article: PMC3880848] [PubMed: 24373254] | Population not in protocol - participants aged 18-25 years old. |
| Davies, Adam, Randall, Duncan, Perceptions of children’s participation in their healthcare: A critical review, Issues in comprehensive pediatric nursing, 38, 202–221, 2015 [PubMed: 26331450] | Systematic review - included studies checked for inclusion, no relevant studies |
| Davies, E. B., Buchanan, H., An exploratory study investigating children’s perceptions of dental behavioural management techniques, International journal of paediatric dentistry, 23, 297–309, 2013 [PubMed: 23163933] | No qualitative data. |
| Davies, Karen E., Marshall, Julie, Brown, Laura J., Goldbart, Juliet, Co-working: Parents’ conception of roles in supporting their children’s speech and language development, Child Language Teaching and Therapy, 33, 171–185, 2017 | Not relevant to privacy and confidentiality |
| Davies-House, A., Ball, N., Balmer, C., Meeting and greeting in the clinical setting - are we doing what patients want?, British dental journal, 222, 457–461, 2017 [PubMed: 28336989] | No qualitative data |
| Day, E. R., Jones, L., Langner, R., Stirling, L. C., Hough, R., Bluebond-Langner, M., Teenagers’ perspectives on their decisional involvement in the context of interactions with healthcare professionals, Archives of disease in childhood, 102 (Supplement 1), A2, 2017 | Conference Abstract |
| Day, Emma, Jones, Louise, Langner, Richard, Bluebond-Langner, Myra, Current understanding of decision-making in adolescents with cancer: A narrative systematic review, Palliative Medicine, 30, 920–934, 2016 [PMC free article: PMC5117127] [PubMed: 27160700] | Systematic review - included studies checked for inclusion - 1 was identified |
| de Anstiss and Ziaian, Mental health help-seeking and refugee adolescents: Qualitative findings from a mixed-methods investigation, Aust Psychol, 45, 29–37, 2010 | Country: Australia |
| De Vries MC, Bresters D, Kaspers GJL, et al, What constitutes the best interest of a child? Views of parents, children, and physicians in a pediatric oncology setting., AJOB Prim Res, 4, 1–10, 2012 | Country: The Netherlands |
| Dean, L. A., An exploration of the experiences of young people who have been nursed on adult wards, Archives of disease in childhood, 1), A76, 2012 | Conference Abstract |
| Dean, L., Black, S., Exploring the experiences of young people nursed on adult wards, British journal of nursing (Mark Allen Publishing), 24, 229–236, 2015 [PubMed: 25723268] | Not relevant to privacy and confidentiality |
| Deldar, K., Bahaadinbeigy, K., Tara, S. M., Teleconsultation and clinical decision making: A systematic review, Acta Informatica Medica, 24, 286–292, 2016 [PMC free article: PMC5037984] [PubMed: 27708494] | Population not in protocol - focus on medical professional views |
| DeLemos, D., Chen, M., Romer, A., Brydon, K., Kastner, K., Anthony, B., Hoehn, K. S., Building trust through communication in the intensive care unit: HICCC, Pediatric Critical Care Medicine, 11, 378–384, 2010 [PubMed: 19770787] | Population is parents with no way of ascertaining age of child. |
| Dewlett, S., Polychronakis, T., Ng, G. Y. T., Look who’s talking: How well are we communicating with parents in the neonatal unit? A patient survey, Intensive Care Medicine, 37, S419–S420, 2011 | Conference Abstract |
| Dhital, R., Whittlesea, C. M., Norman, I. J., Milligan, P., Community pharmacy service users’ views and perceptions of alcohol screening and brief intervention, Drug and Alcohol Review, 29, 596–602, 2010 [PubMed: 20973842] | Age of respondents not given. |
| Dibley, L., Czuber-Dochan, W., Duncan, J., Artom, M., Burch, J., Wade, T., Verjee, A., Cann, D., Warusavitarne, J., Norton, C., Decision-making about emergency and planned stoma surgery for IBD: A qualitative exploration of patient and clinician perspectives, Journal of Crohn’s and Colitis, 11 (Supplement 1), S487–S488, 2017 [PubMed: 29361098] | Conference Abstract |
| Dickens, G., Picchioni, M., A systematic review of the terms used to refer to people who use mental health services: user perspectives, The International journal of social psychiatry, 58, 115–122, 2012 [PubMed: 21339236] | Systematic review - included studies checked for inclusion, no relevant studies |
| Dodoo, T., Murhad, Y., Batchelor, H. K., Stirling, H. F., Supporting young people to take their medication, Archives of Disease in Childhood, 102, A51, 2017 | Conference Abstract |
| Donnellan, D., Murray, C., Harrison, J., An investigation into adolescents’ experience of cognitive behavioural therapy within a child and adolescent mental health service, Clinical Child Psychology and Psychiatry, 18, 199–213, 2013 [PubMed: 22669971] | Not generalisable - specifically investigating attitudes to CBT-psychotherapy |
| Dovey-Pearce, Gail, Price, Christine, Wood, Helen, Scott, Tracy, Cookson, Jennifer, Corbett, Sally, Young people (13 to 21) with disabilities in transition from childhood to adulthood: An exploratory, qualitative study of their developmental experiences and health care needs, Educational and Child Psychology, 29, 86–100, 2012 | Population not in protocol - age 13-21 with 82% over 16. No way of discerning age in results. |
| Downing, J., Gleeson, H., Clayton, P. E., Davis, J. R. E., Dimitri, P., Wales, J., Young, B., Callery, P., Communication with young people in paediatric and adult endocrine consultations: an intervention development and feasibility study, BMC Endocrine Disorders, 17, 33, 2017 [PMC free article: PMC5472891] [PubMed: 28619024] | Too specific - investigating if a forensic interview protocol aids BCYP with verbalising emotional reactions. |
| Drake, E. K., Urquhart, R., The Experiences of Young Adults Living with Metastatic/Advanced Cancer: A Scoping Review, Journal of Adolescent and Young Adult Oncology, 9, 145–156, 2020 [PubMed: 31692403] | Scoping review - included studies checked for inclusion, no relevant studies |
| Drewett, O., Hann, G., Price, N., Tipper, C., Devereux, E., A qualitative study to explore the use of the RCPCH epilepsy passport, Archives of disease in childhood, 102 (Supplement 1), A150, 2017 | Conference Abstract |
| Duckett, Paul, Kagan, Carolyn, Sixsmith, Judith, Consultation and participation with children in healthy schools: Choice, conflict and context, American Journal of Community Psychology, 46, 167–178, 2010 [PubMed: 20526665] | Educational experiences of children and young adults. |
| Dugdale, E., Gerrard, G., Priestley, L., Mariappan, L., Choong, E. S., Follow up of low risk thyroid cancer patients by specialist nurse phone consultations rather than via clinic visits, European Thyroid Journal, 1), 165–166, 2014 | Conference Abstract |
| Dunne, A., Carolan, R., Swords, L., Fortune, G., Patient and family perspectives of paediatric psychogenic non-epileptic seizures: A systematic review, Seizure, 71, 279–285, 2019 [PubMed: 31493680] | Systematic review - included studies checked for inclusion - 1 was identified |
| Duran, C., Curtis-Tyler, K., Exploring children’s healthcare experiences of haematopoietic stem cell transplantation (HSCT)-a small scale study for service improvement, Bone Marrow Transplantation, 1), S257, 2016 | Conference Abstract |
| Edbrooke-Childs, J., Jacob, J., Argent, R., Patalay, P., Deighton, J., Wolpert, M., The relationship between child- and parent-reported shared decision making and child-, parent-, and clinician-reported treatment outcome in routinely collected child mental health services data, Clinical Child Psychology & Psychiatry, 21, 324–38, 2016 [PubMed: 26104790] | No qualitative data |
| Edwards, M., Lawson, C., Rahman, S., Conley, K., Phillips, H., Uings, R., What does quality healthcare look like to adolescents and young adults? Ask the experts!, Clinical Medicine, Journal of the Royal College of Physicians of London, 16, 146–151, 2016 [PMC free article: PMC4952968] [PubMed: 27037384] | Age of participants 17-25 with no way of discerning age of individual quotes. |
| Egbunike, J. N., Shaw, C., Porter, A., Button, L. A., Kinnersley, P., Hood, K., Bowden, S., Bale, S., Snooks, H., Edwards, A., Streamline triage and manage user expectations: lessons from a qualitative study of GP out-of-hours services, British Journal of General Practice, 60, e83–97, 2010 [PMC free article: PMC2828862] [PubMed: 20202350] | No way of determining age source of data. |
| El Miedany, Y., Lotfy, H., El Aroussy, N., Mekkawy, D., Nasef, S. I., Hassan, W., El Deriny, G., Farag, Y., Eissa, M., Almedany, S., El Gaafary, M., Facilitating patient centred care: The development of illustrated multidimensional patient reported outcome measure for children with juvenile idiopathic arthritis, Annals of the rheumatic diseases, 77 (Supplement 2), 502, 2018 | Conference Abstract |
| Elwell, L., Grogan, S., Coulson, N., Adolescents living with cancer: the role of computer-mediated support groups, Journal of health psychology, 16, 236–248, 2011 [PubMed: 20733012] | Age of study population not reported. |
| Ely, B., Chen Lim, M., Becker, E., Wilson Jr, B., The pain experience of hospitalized youth: Assessment and management preferences, Journal of Pain, 1), S3, 2016 | Conference Abstract |
| Ely, E., Chen-Lim, M. L., Carpenter, K. M., Wallhauser, E., Friedlaender, E., Pain Assessment of Children with Autism Spectrum Disorders, Journal of developmental and behavioral pediatrics : JDBP, 37, 53–61, 2016 [PubMed: 26703326] | Not relevant to privacy and confidentiality |
| Epstein, E. G., Arechiga, J., Dancy, M., Simon, J., Wilson, D., Alhusen, J. L., Integrative Review of Technology to Support Communication With Parents of Infants in the NICU, 46, 357–366, 2017 [PMC free article: PMC5441555] [PubMed: 28263727] | Duplicate |
| Epstein, Elizabeth G., Arechiga, Jaqueline, Dancy, Margaret, Simon, Jordan, Wilson, Daniel, Alhusen, Jeanne L., Integrative review of technology to support communication with parents of infants in the NICU, Journal of Obstetric, Gynecologic, & Neonatal Nursing: Clinical Scholarship for the Care of Women, Childbearing Families, & Newborns, 46, 357–366, 2017 [PMC free article: PMC5441555] [PubMed: 28263727] | Systematic review - included studies checked for inclusion - 2 were identified |
| Epstein, Elizabeth Gingell, Sherman, Jessica, Blackman, Amy, Sinkin, Robert A., Testing the feasibility of Skype and FaceTime updates with parents in the neonatal intensive care unit, American Journal of Critical Care, 24, 290–296, 2015 [PubMed: 26134328] | No qualitative data. |
| Evans, J., Rose, D., Flach, C., Csipke, E., Glossop, H., McCrone, P., Craig, T., Wykes, T., VOICE: developing a new measure of service users’ perceptions of inpatient care, using a participatory methodology, Journal of Mental Health, 21, 57–71, 2012 [PMC free article: PMC4018995] [PubMed: 22257131] | Outcome not in protocol - validity study of experience measure |
| Evans, N., Experiences of a child and adolescent mental health service, Nursing Children and Young People, 29, 41–45, 2017 [PubMed: 28604203] | General article about first experience of accessing mental health services - no themes relevant to how healthcare staff should communicate with children and young people/parents of babies |
| Everley, S., Children’s understanding of physical activity and health, Obesity facts, 10 (Supplement 1), 227, 2017 | Conference Abstract |
| Fangstrom, Karin, Sarkadi, Anna, Lucas, Steven, Calam, Rachel, Eriksson, Maria, “And they gave me a shot, it really hurt”-Evaluative content in investigative interviews with young children, Children and Youth Services Review, 82, 434–443, 2017 | Too specific - investigating if a forensic interview protocol aids BCYP with verbalising emotional reactions. |
| Fawcett, R., Porritt, K., Stern, C., Carson-Chahhoud, K., Experiences of parents and carers in managing asthma in children: A qualitative systematic review, JBI Database of Systematic Reviews and Implementation Reports, 17, 793–984, 2019 [PubMed: 31090652] | Systematic review - included studies checked for inclusion, no relevant studies |
| Fazel, M., Garcia, J., Stein, A., The right location? Experiences of refugee adolescents seen by school-based mental health services, Clinical Child Psychology and Psychiatry, 21, 368–380, 2016 [PubMed: 26907460] | Not relevant to privacy and confidentiality |
| Flett, A. M., Hall, M., McCarthy, C., Marshman, Z., Benson, P. E., Does the British Orthodontic Society orthognathic DVD aid a prospective patient’s decision making? A qualitative study, Journal of orthodontics, 41, 88–97, 2014 [PubMed: 24521747] | Not related to privacy and confidentiality |
| Flynn,D., Knoedler,M.A., Hess,E.P., Murad,M.H., Erwin,P.J., Montori,V.M., Thomson,R.G., Engaging patients in health care decisions in the emergency department through shared decision-making: A systematic review, Academic Emergency Medicine, 19, 959–967, 2012 [PubMed: 22853804] | Systematic review - included studies checked for inclusion, no relevant studies |
| Fortier, M. A., Chorney, J. M., Rony, R. Y. Z., Perret-Karimi, D., Rinehart, J. B., Camilon, F. S., Kain, Z. N., Children’s desire for perioperative information, Anesthesia and Analgesia, 109, 1085–1090, 2009 [PMC free article: PMC2910260] [PubMed: 19762736] | Not relevant to privacy and confidentiality |
| Foster, M. J., Whitehead, L., Maybee, P., Cullens, V., The parents’, hospitalized child’s, and health care providers’ perceptions and experiences of family centered care within a pediatric critical care setting: a metasynthesis of qualitative research, Journal of Family Nursing, 19, 431–468, 2013 [PubMed: 23884697] | Systematic review - included studies checked for inclusion, no relevant studies |
| Foster, Mandie Jane, Whitehead, Lisa, Maybee, Patricia, Cullens, Victoria, The parents’, hospitalized child’s, and health care providers’ perceptions and experiences of family centered care within a pediatric critical care setting: A metasynthesis of qualitative research, Journal of Family Nursing, 19, 431–468, 2013 [PubMed: 23884697] | Systematic review - included studies checked for inclusion - 1 was identified. |
| Franck, L. S., Oulton, K., Bruce, E., Parental involvement in neonatal pain management: an empirical and conceptual update, J Nurs Scholarsh, 44, 45–54, 2012 [PubMed: 22339845] | Not relevant to privacy and confidentiality |
| Franck, L. S., Oulton, K., Nderitu, S., Lim, M., Fang, S., Kaiser, A., Parent involvement in pain management for NICU infants: A randomized controlled trial, PediatricsPediatrics, 128, 510–518, 2011 [PubMed: 21859919] | No qualitative data |
| Freer, Y., McIntosh, N., Teunisse, S., Anand, K. J., Boyle, E. M., More information, less understanding: a randomized study on consent issues in neonatal research, Pediatrics, 123, 1301–1305, 2009 [PubMed: 19403495] | No qualitative data. |
| Gates, M., Shulhan-Kilroy, J., Featherstone, R., MacGregor, T., Scott, S. D., Hartling, L., Parent experiences and information needs related to bronchiolitis: A mixed studies systematic review, Patient Education and Counseling, 102, 864–878, 2019 [PubMed: 30573297] | Systematic review - included studies checked for inclusion, no relevant studies |
| Giambra, B. K., Stiffler, D., Broome, M. E., An integrative review of communication between parents and nurses of hospitalized technology-dependent children, Worldviews on evidence-based nursing / Sigma Theta Tau International, Honor Society of Nursing, 11, 369–375, 2014 [PubMed: 25230724] | Systematic review - included studies checked for inclusion - 1 was identified |
| Gibson, Faith, Aldiss, Susie, Horstman, Maire, Kumpunen, Stephanie, Richardson, Alison, Children and young people’s experiences of cancer care: A qualitative research study using participatory methods, International journal of nursing studies, 47, 1397–1407, 2010 [PubMed: 20430388] | Not related to privacy and confidentiality |
| Gondek, D., Edbrooke-Childs, J., Velikonja, T., Chapman, L., Saunders, F., Hayes, D., Wolpert, M., Facilitators and Barriers to Person-centred Care in Child and Young People Mental Health Services: A Systematic Review, Clinical Psychology & Psychotherapy, 24, 870–886, 2017 [PubMed: 27910173] | Systematic review - included studies checked for inclusion, no relevant studies |
| Graham, R., Pemstein, D., & Curley, M. , Experiencing the pediatric intensive care unit: Perspective from parents of children with severe antecedent disabilities. , Critical Care Medicine, 37, 2064–2070, 2009 [PubMed: 19384200] | Country: USA |
| Grainger, H., Joyce, C., Beuschel, S., Davies, A., Shreeve, K., Super blood! development of a child patient information leaflet, Transfusion Medicine, 2), 45, 2014 [PubMed: 25121159] | Conference Abstract |
| Grealish, A., Tai, S., Hunter, A., Morrison, A. P., Qualitative exploration of empowerment from the perspective of young people with psychosis, Clinical Psychology & Psychotherapy, 20, 136–148, 2013 [PubMed: 21882298] | Outcomes not in protocol - No themes relating to shared planning or decision making |
| Gregory, J. W., UK: Communication in patient-centered care, Pediatric diabetes, 18), 8, 2013 | Conference Abstract |
| Grist, Rebecca, Porter, Joanna, Stallard, Paul, Mental health mobile apps for preadolescents and adolescents: A systematic review, Journal of medical internet research, 19, 153–166, 2017 [PMC free article: PMC5465380] [PubMed: 28546138] | No qualitative data. |
| Guest, J., Cheal, H., Welcome to Ward 3 at the Great North children’s hospital-a fun guide to your first two days with us (DVD format patient family information), Bone Marrow Transplantation, 1), S519, 2016 | Conference Abstract |
| Gund A, Sjoqvist BA, Wigert H, Hentz E, Lindecrantz K, Bry K, A randomized controlled study about the use of eHealth in the home health care of premature infants, Neonatal Intensive Care, 26, 42–50, 2013 [PMC free article: PMC3583709] [PubMed: 23394465] | Country: Sweden |
| Gurung, G., Richardson, A., Wyeth, E., Edmonds, L., Derrett, S., Child/youth, family and public engagement in paediatric services in high-income countries: A systematic scoping review, Health expectations : an international journal of public participation in health care and health policy, 23, 261–273, 2020 [PMC free article: PMC7104655] [PubMed: 31981295] | Systematic review - included studies checked for inclusion, no relevant studies |
| Gutman, T., Hanson, C. S., Bernays, S., Craig, J. C., Sinha, A., Dart, A., Eddy, A. A., Gipson, D. S., Bockenhauer, D., Yap, H. K., Groothoff, J., Zappitelli, M., Webb, N. J. A., Alexander, S. I., Goldstein, S. L., Furth, S., Samuel, S., Blydt-Hansen, T., Dionne, J., Michael, M., Wenderfer, S. E., Winkelmayer, W. C., Currier, H., McTaggart, S., Walker, A., Ralph, A. F., Ju, A., James, L. J., Carter, S., Tong, A., Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study, American Journal of Kidney Diseases, 72, 547–559, 2018 [PubMed: 29980375] | Countries: Australia, Canada and USA |
| Hajivassiliou, E. C., Hajivassiliou, C. A., Informed consent in primary dental care: patients’ understanding and satisfaction with the consent process, British dental journal, 219, 221–224, 2015 [PubMed: 26361123] | Population not in protocol - adults with capacity. |
| Hamama, Liat, Ronen, Tammie, Children’s drawings as a self-report measurement, Child & Family Social Work, 14, 90–102, 2009 | Country: Israel |
| Hamann, J., Kohl, S., McCabe, R., Buhner, M., Mendel, R., Albus, M., Bernd, J., What can patients do to facilitate shared decision making? A qualitative study of patients with depression or schizophrenia and psychiatrists, Social psychiatry and psychiatric epidemiology, 51, 617–625, 2016 [PubMed: 26155899] | Adult population only, aged 18-65 years old. |
| Harper, B., Dickson, J. M., Bramwell, R., Experiences of young people in a 16-18 Mental Health Service, Child and Adolescent Mental Health, 19, 90–96, 2014 [PubMed: 32878383] | Population not in protocol |
| Harper, Ben, Dickson, Joanne M., Bramwell, Ros, Experiences of young people in a 16-18 Mental Health Service, Child and Adolescent Mental Health, 19, 90–96, 2014 [PubMed: 32878383] | Duplicate |
| Hartling, L., Scott, S., Pandya, R., Johnson, D., Bishop, T., Klassen, T. P., Storytelling as a communication tool for health consumers: development of an intervention for parents of children with croup. Stories to communicate health information, BMC pediatrics, 10, 64, 2010 [PMC free article: PMC2940891] [PubMed: 20813044] | Narrative description of intervention development. |
| Harvey, M. E., Redshaw, M. E., Analysis of audio-recordings of discussions between parents and clinicians regarding scanning results, Archives of Disease in Childhood: Fetal and Neonatal Edition, 99, A57, 2014 | Conference Abstract |
| Heath, G., Greenfield, S., Redwood, S., The meaning of ‘place’ in families’ lived experiences of paediatric outpatient care in different settings: A descriptive phenomenological study, Health and Place, 31, 46–53, 2015 [PubMed: 25463917] | Not related to privacy and confidentiality |
| Heinemann, A. B., Hellstrom-Westas, L., Hedberg Nyqvist, K., Factors affecting parents’ presence with their extremely preterm infants in a neonatal intensive care room, Acta Paediatr, 102, 695–702, 2013 [PubMed: 23590800] | Country: Sweden |
| Hemsley, B., Bastock, K., Baladin, S., Davidson, B., Scarinci, N., Worrall, L., Communication during hospitalization: The path to better healthcare for children and adults with cerebral palsy, Developmental Medicine and Child Neurology, 54, 31–32, 2012 | Conference Abstract |
| Hill, C., Knafl, K. A., Santacroce, S. J., Family-Centered Care From the Perspective of Parents of Children Cared for in a Pediatric Intensive Care Unit: An Integrative Review, Journal of pediatric nursing., 16, 2017 [PMC free article: PMC5955783] [PubMed: 29153934] | Systematic review - included studies checked for inclusion - 6 were identified |
| Hill, J., Masding, M. G., The development of an innovative mobile phone App for Type 1 diabetes alcohol education, Diabetic medicine, 1), 112, 2013 | Conference Abstract |
| Hinton, D., Kirk, S., Paediatric multiple sclerosis: A qualitative study of families’ diagnosis experiences, Archives of disease in childhood, 100, 623–629, 2015 [PubMed: 25552262] | Not related to privacy and confidentiality |
| Hughes, B., O’Brien, M. R., Flynn, A., Knighting, K., The engagement of young people in their own advance care planning process: A systematic narrative synthesis, Palliative Medicine, 32, 1147–1166, 2018 [PubMed: 29720032] | Systematic review - included studies checked for inclusion, no relevant studies |
| Hughes, V. C., Phillips, S., Exploring the pre-hospitalisation needs of parents of children with cystic fibrosis, Journal of Cystic Fibrosis, 13, S115, 2014 | Conference Abstract |
| Hunt, A., Brown, E., Coad, J., Staniszewska, S., Hacking, S., Chesworth, B., Chambers, L., ‘Why does it happen like this?’ Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families, Journal of child health care : for professionals working with children in the hospital and community, 19, 320–333, 2015 [PMC free article: PMC4561454] [PubMed: 24270996] | Not relevant to privacy and confidentiality |
| Ignatowicz, Agnieszka, Slowther, Anne-Marie, Elder, Patrick, Bryce, Carol, Hamilton, Kathryn, Huxley, Caroline, Forjaz, Vera, Sturt, Jackie, Griffiths, Frances, Ethical implications of digital communication for the patient-clinician relationship: Analysis of interviews with clinicians and young adults with long term conditions (the LYNC study), BMC Medical Ethics Vol 19 2018, ArtID 11, 19, 2018 [PMC free article: PMC5824603] [PubMed: 29475437] | Population not in protocol - clinicians and patients (16-24) with chronic physical and mental health conditions. No way of determining source of data. |
| Ion, R., Cropper, J., Walters, H., Involving young people in decision making about sequential cochlear implantation, Cochlear Implants International, 14, S44–S47, 2013 [PubMed: 24533764] | No qualitative data |
| Jacob, J., Edbrooke-Childs, J., Holley, S., Law, D., Wolpert, M., Horses for courses? A qualitative exploration of goals formulated in mental health settings by young people, parents, and clinicians, Clinical child psychology and psychiatry, 21, 208–223, 2016 [PubMed: 25810417] | Too specific - individual goal examples used. |
| Jacob, J., Edbrooke-Childs, J., Law, D., Wolpert, M., Measuring what matters to patients: Using goal content to inform measure choice and development, Clinical Child Psychology and Psychiatry, 22, 170–186, 2017 [PubMed: 26721283] | No qualitative data |
| Jansen, R., Reid, M., Caregivers of adolescents with mental health issues using communication technology: a systematic review, JMIR mHealth and uHealth, 2020 [PMC free article: PMC7468639] [PubMed: 32663143] | Systematic review - included studies checked for inclusion, no relevant studies |
| Jefferies, K., Haest, J., Edge, J., Admission pack for newly diagnosed diabetes: Help or hindrance?, Archives of disease in childhood, 1), A120, 2012 | Conference Abstract |
| Jenkins, Peter, Having confidence in therapeutic work with young people: Constraints and challenges to confidentiality, British Journal of Guidance & Counselling, 38, 263–274, 2010 | Narrative review |
| Joanne, C., Deepa, P., Emily, W., Vanessa, M., An evaluation of the views of adolescent patients with a learning disability and their carers on a medicines information leaflet, Archives of Disease in Childhood. Conference: 22nd Annual Conference of the Neonatal and Paediatric Pharmacists Group. United Kingdom, 103, 2018 | Conference Abstract |
| Jobbins, A., Baily, C., Wilkinson, G., Menzies, J., Mildner, R., Adolescents in PICU: Are we meeting their needs?, Pediatric critical care medicine, 1), A37–A38, 2011 | Conference Abstract |
| Kean, S., Children and young people visiting an adult intensive care unit, Journal of advanced nursing, 66, 868–877, 2010 [PubMed: 20423374] | Reports experiences of BCYP visiting family members in ICU |
| Kerri, O., Byron, P., Improving strategies to better support adolescents with cancer: The creation of an “adolescent-friendly oncology ward”, Pediatric Blood and Cancer, 53 (5), 751–752, 2009 | Conference Abstract |
| Kew, K. M., Malik, P., Aniruddhan, K., Normansell, R., Shared decision-making for people with asthma, Cochrane Database of Systematic Reviews, 2017 (10) (no pagination), 2017 [PMC free article: PMC6485676] [PubMed: 28972652] | No qualitative data. |
| Kew, K. M., Malik, P., Aniruddhan, K., Normansell, R., Shared decision-making for people with asthma, Cochrane Database of Systematic Reviews, 2017 [PMC free article: PMC6485676] [PubMed: 28972652] | Duplicate |
| Latour, Jos M., van Goudoever, Johannes B., Schuurman, Beatrix Elink, Albers, Marcel J. I. J., van Dam, Nicolette A. M., Dullaart, Eugenie, van Heerde, Marc, Verlaat, Carin W. M., van Vught, Elise M., Hazelzet, Jan A., A qualitative study exploring the experiences of parents of children admitted to seven Dutch pediatric intensive care units, Intensive care medicineIntensive Care Med, 37, 319–325, 2011 [PMC free article: PMC3028069] [PubMed: 21063674] | Country: The Netherlands |
| Law, H., Gee, B., Dehmahdi, N., Carney, R., Jackson, C., Wheeler, R., Carroll, B., Tully, S., Clarke, T., What does recovery mean to young people with mental health difficulties?-“It’s not this magical unspoken thing, it’s just recovery”, Journal of Mental Health, 2020 [PubMed: 32186236] | Not related to privacy and confidentiality |
| Lawrence, M., Young adults’ experience of stroke: a qualitative review of the literature, British journal of nursing (Mark Allen Publishing), 19, 241–248, 2010 [PubMed: 20220675] | Population not in protocol - adults 18-65 |
| Lawton, J., Waugh, N., Noyes, K., Barnard, K., Harden, J., Bath, L., Stephen, J., Rankin, D., Improving communication and recall of information in paediatric diabetes consultations: A qualitative study of parents’ experiences and views, BMC pediatrics, 15 (1) (no pagination), 2015 [PMC free article: PMC4460975] [PubMed: 26054649] | Population not in protocol - parents of children with Type 1 diabetes. Only 2 quotes gave age of patients, both over 5. |
| Lea, S., Martins, A., Morgan, S., Cargill, J., Taylor, R. M., Fern, L. A., Online information and support needs of young people with cancer: A participatory action research study, Adolescent Health, Medicine and Therapeutics, 9, 121–135, 2018 [PMC free article: PMC6167089] [PubMed: 30310338] | Age range 13-24, no way of determining source of data |
| Lerch, Matthew F., Thrane, Susan E., Arnett, Babler Baucom Bishay Borus Dashiff Gaston Heath Hilliard Kayle King Knopf Miller Polfuss Sanders Sawicki Seiffge-Krenke Skinner Stevens Vygotsky Williams, Adolescents with chronic illness and the transition to self-management: A systematic review, Journal of Adolescence, 72, 152–161, 2019 [PubMed: 30903932] | Systematic review. References checked for possible included studies - none were identified. |
| Levin, A. B., Fisher, K. R., Cato, K. D., Zurca, A. D., October, T. W., An Evaluation of Family-Centered Rounds in the PICU: Room for Improvement Suggested by Families and Providers, Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care SocietiesPediatr Crit Care Med, 16, 801–7, 2015 [PubMed: 26181298] | Country: USA |
| LGBT Youth Scotland et al, Life in Scotland for LGBT young people: Health Report, 2013 | Grey literature survey |
| Lindberg, Birgitta, Axelsson, Karin, Öhrling, Kerstin, Taking care of their baby at home but with nursing staff as support: The use of videoconferencing in providing neonatal support to parents of preterm infants, Journal of Neonatal Nursing, 15, 47–55, 2009 | Country: Sweden |
| Lion, K. C., Kieran, K., Desai, A., Hencz, P., Ebel, B. E., Adem, A., Forbes, S., Kraus, J., Gutman, C., Horn, I., Audio-Recorded Discharge Instructions for Limited English Proficient Parents: A Pilot Study, Joint Commission Journal on Quality and Patient Safety, 45, 98–107, 2019 [PMC free article: PMC6378142] [PubMed: 30126714] | No qualitative data. |
| Liossi, C., Noble, G., Franck, L. S., How parents make sense of their young children’s expressions of everyday pain: A qualitative analysis, European journal of pain (united kingdom), 16, 1166–1175, 2012 [PubMed: 22344633] | Not relevant to privacy and confidentiality |
| Lipstein, E. A., Brinkman, W. B., Britto, M. T., What is known about parents’ treatment decisions? A narrative review of pediatric decision making, Medical decision making : an international journal of the Society for Medical Decision Making, 32, 246–258, 2012 [PMC free article: PMC3756486] [PubMed: 21969136] | Narrative review |
| Little, P., White, P., Kelly, J., Everitt, H., Gashi, S., Bikker, A., Mercer, S., Verbal and non-verbal behaviour and patient perception of communication in primary care: An observational study, British journal of general practice, 65, e357–e365, 2015 [PMC free article: PMC4439825] [PubMed: 26009530] | No qualitative data |
| Livesley, J., Long, T., Children’s experiences as hospital in-patients: Voice, competence and work. Messages for nursing from a critical ethnographic study, International journal of nursing studies, 50, 1292–1303, 2013 [PubMed: 23332686] | Not related to privacy and confidentiality |
| Loewenstein, K., Barroso, J., Phillips, S., The Experiences of Parents in the Neonatal Intensive Care Unit: An Integrative Review of Qualitative Studies Within the Transactional Model of Stress and Coping, The Journal of perinatal & neonatal nursing, 33, 340–349, 2019 [PubMed: 31651628] | Systematic review - included studies checked for inclusion, no relevant studies |
| Lowes, L., Eddy, D., Channon, S., McNamara, R., Robling, M., Gregory, J. W., The experience of living with type 1 diabetes and attending clinic from the perception of children, adolescents and carers: analysis of qualitative data from the DEPICTED study, Journal of pediatric nursing, 30, 54–62, 2015 [PubMed: 25308399] | Not related to privacy and confidentiality |
| Macdonald, M. E., Liben, S., Carnevale, F. A., Cohen, S. R., An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit, J Child Health Care, 16, 237–49, 2012 [PubMed: 22308544] | Country: Canada |
| Martin-Kerry, J. M., Knapp, P., Atkin, K., Bower, P., Watt, I., Stones, C., Higgins, S., Sheridan, R., Preston, J., Horton Taylor, D., Baines, P., Young, B., Supporting children and young people when making decisions about joining clinical trials: Qualitative study to inform multimedia website development, BMJ open, 9 (1) (no pagination), 2019 [PMC free article: PMC6340013] [PubMed: 30782720] | Population not in protocol - age of protocol range from 6-19 which no way of discerning age of quotes |
| Masoumi, M., Shahhosseini, Z., Self-care challenges in adolescents: A comprehensive literature review, International Journal of Adolescent Medicine and Health, 31, 0152, 2019 [PubMed: 28599383] | Systematic review - included studies checked for inclusion, no relevant studies |
| Mc Manus, V., Savage, E., Cultural perspectives of interventions for managing diabetes and asthma in children and adolescents from ethnic minority groups, Child: Care, Health and Development, 36, 612–622, 2010 [PubMed: 20533918] | Systematic review - included studies checked for inclusion, no relevant studies |
| McCormack, A., Norrish, S., Parker, L., Frampton, I., Consulting with young people about healthcare. Part 2: Experience of long-term health conditions, Pediatric Health, 4, 167–175, 2010 | Not related to privacy and confidentiality |
| McKenna, K., Collier, J., Hewitt, M., Blake, H., Parental involvement in paediatric cancer treatment decisions, Eur J Cancer Care (Engl), 19, 621–30, 2010 [PMC free article: PMC3178788] [PubMed: 19807776] | No qualitative data |
| McMillan, S. S., Wilson, B., Stapleton, H., Wheeler, A. J., Young people’s experiences with mental health medication: A narrative review of the qualitative literature, Journal of Mental Health, 2020 [PubMed: 32031034] | Systematic review - included studies checked for inclusion, no relevant studies |
| McPherson, G., Jefferson, R., Kissoon, N., Kwong, L., Rasmussen, K., Toward the inclusion of parents on pediatric critical care unit rounds, Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care SocietiesPediatr Crit Care Med, 12, e255–61, 2011 [PubMed: 21057363] | Country: Canada |
| Miller, V. A., Parent-child collaborative decision making for the management of chronic illness: a qualitative analysis, Fam Syst Health, 27, 249–66, 2009 [PMC free article: PMC2844115] [PubMed: 19803619] | Country: USA |
| Mimmo, L., Harrison, R., Taking time to care: Meta narrative review of the experience of parents with a child with intellectual disability in hospital, Journal of Intellectual Disability Research, 63, 812, 2019 | Conference abstract |
| Mimmo, L., Woolfenden, S., Travaglia, J., Harrison, R., Partnerships for safe care: A meta-narrative of the experience for the parent of a child with Intellectual Disability in hospital, Health Expectations, 22, 1199–1212, 2019 [PMC free article: PMC6882263] [PubMed: 31560839] | Systematic review - included studies checked for inclusion, no relevant studies |
| Mitchell, Wendy, Parents’ accounts: Factors considered when deciding how far to involve their son/daughter with learning disabilities in choice-making, Children and Youth Services Review, 34, 1560–1569, 2012 | Not related to privacy and confidentiality |
| Nair, T., Savulescu, J., Everett, J., Tonkens, R., Wilkinson, D., Settling for second best: when should doctors agree to parental demands for suboptimal medical treatment?, Journal of medical ethics, 43, 831–840, 2017 [PMC free article: PMC5827708] [PubMed: 28947505] | Empirical and ethical analyses only |
| Neill, S. J., Jones, C. H., Lakhanpaul, M., Roland, D. T., Thompson, M. J., Parent’s information seeking in acute childhood illness: what helps and what hinders decision making?, Health expectations : an international journal of public participation in health care and health policy, 18, 3044–3056, 2015 [PMC free article: PMC5810715] [PubMed: 25327454] | Systematic review - included studies checked for inclusion - 1 was identified |
| Neill, S. J., Jones, C. H., Lakhanpaul, M., Roland, D. T., Thompson, M. J., Parents’ help-seeking behaviours during acute childhood illness at home: A contribution to explanatory theory, Journal of child health care : for professionals working with children in the hospital and community, 20, 77–86, 2016 [PubMed: 25296933] | Not relevant to privacy and confidentiality |
| Neill, S., Roland, D., Jones, C. H. D., Thompson, M., Lakhanpaul, M., Information resources to aid parental decision-making on when to seek medical care for their acutely sick child: A narrative systematic review, BMJ open, 5 (12) (no pagination), 2015 [PMC free article: PMC4691730] [PubMed: 26674495] | Systematic review - included studies checked for inclusion, no relevant studies |
| Nelson, P. A., Kirk, S. A., Parents’ perspectives of cleft lip and/or palate services: A qualitative interview, Cleft Palate-Craniofacial Journal, 50, 275–285, 2013 [PubMed: 22849641] | Too specific - experiences of cleft lip and/or palate services. |
| Ngo-Metzger, Q., Hayes, G. R., Yunan, Chen, Cygan, R., Garfield, C. F., Improving communication between patients and providers using health information technology and other quality improvement strategies: focus on low-income children, Medical Care Research & ReviewMed Care Res Rev, 67, 246S–267S, 2010 [PubMed: 20675346] | Systematic review - included studies checked for inclusion, no relevant studies |
| Nicholls, S. G., Southern, K. W., Parental selection and use of information when learning about newborn bloodspot screening, Pediatric Pulmonology, 46, 427, 2011 | Conference Abstract |
| Nik-Hussin, N. M. H., Saleem, Y., Sivayoham, E., Rothera, M. P., A survey of parent’s attitudes towards viewing intraoperative photographs used as an educational tool, International journal of pediatric otorhinolaryngology, 73, 585–588, 2009 [PubMed: 19250689] | No qualitative data |
| O’Reilly, M., Karim, K., Taylor, H., Dogra, N., Parent and child views on anonymity: ‘I’ve got nothing to hide’, International Journal of Social Research Methodology: Theory & Practice, 15, 211–223, 2012 | Context not in protocol - confidentiality and privacy in the context of research only |
| Obeysekera, M., Tanney, K., Picture books to improve the quality of communication in newborn intensive care, Archives of Disease in Childhood, 102, A88, 2017 | Conference Abstract |
| Ochieng, B. M., Black African migrants: the barriers with accessing and utilizing health promotion services in the UK, European Journal of Public Health, 23, 265–269, 2013 [PubMed: 22683768] | Population not in protocol - above 18 years old. |
| October, Tessie W., Fisher, Kiondra R., Feudtner, Chris, Hinds, Pamela S., The parent perspective: “being a good parent” when making critical decisions in the PICU, Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care SocietiesPediatr Crit Care Med, 15, 291–298, 2014 [PMC free article: PMC4353698] [PubMed: 24583502] | Country: USA |
| O’Hare, L., Santin, O., Winter, K., McGuinness, C., The reliability and validity of a Child and Adolescent Participation in Decision-Making Questionnaire, Child: care, health and development, 42, 692–698, 2016 [PubMed: 27345443] | No qualitative data. |
| Oulton, K., Wray, J., Carr, L., Hassiotis, A., Jewitt, C., Kerry, S., Tuffrey-Wijne, I., Gibson, F., Pay More Attention: a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families, BMJ open, 6, 2016 [PMC free article: PMC5168702] [PubMed: 27940626] | Published protocol, no experimental data |
| Page, C. J., Dunkley, L., Edgerton, J., Hawley, D., Tattersall, R. S., Don’t lose your HEADSS in the adolescent clinic: An evaluation of how an adolescent rheumatology service counsels young people’s issues, Rheumatology (United Kingdom), 3), iii6, 2014 | Conference Abstract |
| Pallotta-Chiarolli, Maria, Martin, Erik, “Which Sexuality? Which Service?”: Bisexual Young People’s Experiences with Youth, Queer and Mental Health Services in Australia, Journal of LGBT Youth, 6, 199–222, 2009 | Country: Australia |
| Pellerin-Leblanc, A. A., Derynck, M., Dow, K., Improving communication in the NICU: Parental perceptions and knowledge about resident physicians, Paediatrics and Child Health (Canada), 23 (Supplement 1), e47–e48, 2018 | Conference Abstract |
| Pepper,D., Rempel,G., Austin,W., Ceci,C., Hendson,L., More than information: a qualitative study of parents’ perspectives on neonatal intensive care at the extremes of prematurity, Advances in Neonatal Care, 12, 303–309, 2012 [PubMed: 22964607] | Country: Canada |
| Petrie, K., McArdle, A., Cookson, J., Powell, E., Poblete, X., ‘Let us speak’-children’s opinions of doctors, Archives of Disease in Childhood, 102 (Supplement 1), A200–A201, 2017 | Conference Abstract |
| Pini, S., Education mentoring for teenagers and young adults with cancer, British journal of nursing (Mark Allen Publishing), 18, 1316–1319, 2009 [PubMed: 20081681] | Not relevant to privacy and confidentiality |
| Pyke-Grimm, Kimberly A., Franck, Linda S., Kelly, Katherine Patterson, Halpern-Felsher, Bonnie, Goldsby, Robert E., Kleiman, Ari, Rehm, Roberta S., Treatment decision-making involvement in adolescents and young adults with cancer, Oncology Nursing Forum, 46, E22–E37, 2019 [PMC free article: PMC7384435] [PubMed: 30547960] | Duplicate record - Phenomenon of interest of included studies not in protocol. Included studies checked for inclusion |
| Pyke-Grimm, Kimberly A., Franck, Linda S., Kelly, Katherine Patterson, Halpern-Felsher, Bonnie, Goldsby, Robert E., Kleiman, Ari, Rehm, Roberta S., Albritton, Alsous Barakat Bhatia Bhatia Bleyer Bluebond-Langner Britto Britto Broome Broome Butow Coccia Coyne Coyne Coyne Coyne Day de Vries Dunsmore Ellis Hinds Jacobs Joffe Kelly Knopf Lyon Martenson Masera Miller Miller Miller Miller Moher Noblit Pace Pearce Pluye Read Ruhe Ruhe Smith Snethen Spinetta Stegenga Stewart Tenniglo Unguru Unguru Weaver Whittemore Young Zwaanswijk Zwaanswijk, Treatment decision-making involvement in adolescents and young adults with cancer, Oncology Nursing Forum, 46, E22–E37, 2019 [PubMed: 30547960] | Systematic review. References checked for possible included studies - none were identified. |
| Read, N., Schofield, A., Autism: are mental health services failing children and parents?, The journal of family health care, 20, 120–124, 2010 [PubMed: 21053660] | No qualitative data for under 18s. |
| Redley, M., Prince, E., Bateman, N., Pennington, M., Wood, N., Croudace, T., Ring, H., The involvement of parents in healthcare decisions where adult children are at risk of lacking decision-making capacity: A qualitative study of treatment decisions in epilepsy, Journal of intellectual disability research, 57, 531–538, 2013 [PubMed: 22533531] | Population not in protocol - parents’ views with no way of discerning age of child |
| Rennick, J., Lambert, S., Childerhose, J., Campbell-Yeo, M., Filion, F., & Johnston, C. , Mothers’ experiences of a touch and talk nursing intervention to optimize pain management in the PICU: A qualitative descriptive study. , Intensive & Critical Care Nursing, 27, 151–157, 2011 [PubMed: 21511475] | Country: Canada |
| Richards, C. A., Starks, H., O’Connor, M. R., Doorenbos, A. Z., Elements of Family-Centered Care in the Pediatric Intensive Care Unit: An Integrative Review, Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association, 19, 238–246, 2017 [PMC free article: PMC5421392] [PubMed: 28496382] | Systematic review - included studies checked for inclusion - 4 were identified |
| Richardson, C., Paslakis, G., Men’s experiences of eating disorder treatment: A qualitative systematic review of men-only studies, Journal of psychiatric and mental health nursing, 2020 [PubMed: 32608115] | Systematic review - included studies checked for inclusion, no relevant studies |
| Riddell, R., Lewis, A., Tuthill, D., PN for children-information leaflet, Archives of disease in childhood, 101 (9), A13, 2016 [PubMed: 27540204] | Conference Abstract |
| Robards, F., Kang, M., Usherwood, T., Sanci, L., How Marginalized Young People Access, Engage With, and Navigate Health-Care Systems in the Digital Age: Systematic Review, Journal of Adolescent Health, 365–381, 2018 [PubMed: 29429819] | Not related to privacy and confidentiality |
| Robert, Marie, Leblanc, Line, Boyer, Thierry, When satisfaction is not directly related to the support services received: Understanding parents’ varied experiences with specialised services for children with developmental disabilities, British Journal of Learning Disabilities, 43, 168–177, 2015 | Country not in protocol: Canada |
| Robertson, A. O., Tadic, V., Rahi, J. S., Transition from paediatric to adult ophthalmology services: what matters most to young people with visual impairment, Eye, 32, 406–414, 2018 [PMC free article: PMC5811720] [PubMed: 28937148] | Exclusion as per protocol - child to adult healthcare transition. |
| Rosenthal, S. A., Nolan, M. T., A Meta-Ethnography and Theory of Parental Ethical Decision Making in the Neonatal Intensive Care Unit, Jognn-Journal of Obstetric Gynecologic and Neonatal Nursing, 42, 492–502, 2013 [PMC free article: PMC8979647] [PubMed: 23773116] | Systematic review - included studies checked for inclusion, no relevant studies |
| Rubin,S.E., McKee,M.D., Campos,G., O’Sullivan,L.F., Delivery of confidential care to adolescent males, Journal of the American Board of Family Medicine: JABFM, 23, 728–735, 2010 [PMC free article: PMC3986269] [PubMed: 21057068] | Country: USA |
| Russell, G., Sawyer, A., Rabe, H., Abbott, J., Gyte, G., Duley, L., Ayers, S., Parents’ views on care of their very premature babies in neonatal intensive care units: a qualitative study, BMC Pediatrics, 14, 230, 2014 [PMC free article: PMC4190336] [PubMed: 25216714] | Population not in protocol - strongly on parent’s views only. Not a good proxy for unders 5s. |
| Saaltink, R., MacKinnon, G., Owen, F., Tardif-Williams, C., Protection, participation and protection through participation: young people with intellectual disabilities and decision making in the family context, J Intellect Disabil Res, 56, 1076–86, 2012 [PubMed: 23106751] | Country: Canada |
| Sanders, C., Pritchard, E., Bray, L., McKenna, J., Exploring young people’s expectations and experiences of discussing sexual and relationship health with professionals in a children’s hospital, Journal of clinical nursing, 20, 1705–1712, 2011 [PubMed: 21457379] | No qualitative data |
| Sayal, Kapil, Mills, Jonathan, White, Kate, Merrell, Christine, Tymms, Peter, Predictors of and barriers to service use for children at risk of ADHD: Longitudinal study, European child & adolescent psychiatry, 24, 545–552, 2015 [PubMed: 25201055] | No qualitative data. |
| Schaeuble, K., Haglund, K., Vukovich, M., Adolescents’ preferences for primary care provider interactions, J Spec Pediatr Nurs, 15, 202–10, 2010 [PubMed: 20618634] | Country: USA |
| Scholefield, B., Gosney, J., Callens, C., Duncan, H., Morris, K., Draper, H., Consultation with children regarding deferred consent in emergency care research, Pediatric critical care medicine, 1), A44, 2011 | Conference Abstract |
| Sharkey, S., Lloyd, C., Tomlinson, R., Thomas, E., Martin, A., Logan, S., Morris, C., Communicating with disabled children when inpatients: barriers and facilitators identified by parents and professionals in a qualitative study, Health expectations : an international journal of public participation in health care and health policy, 19, 738–750, 2016 [PMC free article: PMC5055242] [PubMed: 25156078] | Not related to privacy and confidentiality |
| Sherratt, F. C., Beasant, L., Crawley, E. M., Hall, N. J., Young, B., Enhancing communication, informed consent and recruitment in a paediatric urgent care surgical trial: A qualitative study, BMC Pediatrics, 20, 140, 2020 [PMC free article: PMC7106711] [PubMed: 32228534] | Not related to privacy and confidentiality |
| Sime, D., ‘I think that Polish doctors are better’: Newly arrived migrant children and their parents’ experiences and views of health services in Scotland, Health and Place, 30, 86–93, 2014 [PubMed: 25237717] | Not relevant to privacy and confidentiality |
| Sisson, Helen, Jones, Catriona, Williams, Rhona, Lachanudis, Lisa, Metaethnographic synthesis of fathers’ experiences of the neonatal intensive care unit environment during hospitalization of their premature infants, Journal of Obstetric, Gynecologic, & Neonatal Nursing: Clinical Scholarship for the Care of Women, Childbearing Families, & Newborns, 44, 471–480, 2015 [PubMed: 26017337] | Systematic review - included studies checked for inclusion, no relevant studies |
| Smith, L. A. M., Critoph, D. J., Hatcher, H. M., How Can Health Care Professionals Communicate Effectively with Adolescent and Young Adults Who Have Completed Cancer Treatment? A Systematic Review, Journal of Adolescent and Young Adult Oncology, 2020 [PubMed: 31934804] | Systematic review - included studies checked for inclusion, no relevant studies |
| Stafford, V., Hutchby, I., Karim, K., O’Reilly, M., “Why are you here?” Seeking children’s accounts of their presentation to Child and Adolescent Mental Health Service (CAMHS), Clinical child psychology and psychiatry, 21, 3–18, 2016 [PubMed: 25062687] | Not relevant to privacy and confidentiality |
| Starkman, Harold, Fisher, Kathleen, Pilek, Nicole L., Lopez-Henriquez, Gloria, Lynch, Laura, Bilkins-Morgis, Briana L., Listening to adolescents with uncontrolled diabetes, their parents and medical team, Families, systems & health : the journal of collaborative family healthcare, 37, 30–37, 2019 [PubMed: 30920261] | Country not in protocol: USA |
| Stenberg, U., Haaland-Overby, M., Koricho, A. T., Trollvik, A., Kristoffersen, L. G. R., Dybvig, S., Vagan, A., How can we support children, adolescents and young adults in managing chronic health challenges? A scoping review on the effects of patient education interventions, Health expectations : an international journal of public participation in health care and health policy, 2019 [PMC free article: PMC6803408] [PubMed: 31131527] | Scoping review - included studies checked for inclusion, no relevant studies |
| Stickney, C. A., Ziniel, S. I., Brett, M. S., Truog, R. D., Family participation during intensive care unit rounds: goals and expectations of parents and health care providers in a tertiary pediatric intensive care unit, J Pediatr, 165, 1245–1251.e1, 2014 [PubMed: 25241179] | Country: USA |
| Sunderland, E., Wood, K., Barwick, S., What do looked after young people think about the specialist health services they use?, Archives of disease in childhood, 3), A184, 2015 | Conference Abstract |
| Sutcliffe, P., Martin, S., Sturt, J., Powell, J., Griffiths, F., Adams, A., Dale, J., Systematic review of communication technologies to promote access and engagement of young people with diabetes into healthcare, BMC endocrine disorders, 11 (no pagination), 2011 [PMC free article: PMC3024230] [PubMed: 21210964] | No qualitative data. |
| Taylor, S., Haase-Casanovas, S., Weaver, T., Kidd, J., Garralda, E. M., Child involvement in the paediatric consultation: a qualitative study of children and carers’ views, Child: care, health and development, 36, 678–685, 2010 [PubMed: 20337640] | Not related to privacy and confidentiality |
| Templeton, Lorna, Novak, Claire, Wall, Sarah, Young people’s views on services to help them deal with parental substance misuse, Drugs: Education, Prevention & Policy, 18, 172–178, 2011 | Not relevant to privacy and confidentiality |
| Ulph, F., Cullinan, T., Qureshi, N., Kai, J., Informing children of their newborn screening carrier result for sickle cell or cystic fibrosis: qualitative study of parents’ intentions, views and support needs, Journal of Genetic Counseling, 23, 409–20, 2014 [PubMed: 24306142] | Not relevant to privacy and confidentiality |
| Van Cleave, A., Roosen-Runge, M., Miller, A., Karkazis, K., Magnus, D., Quality of communication in interpreted versus non-interpreted pediatric ICU family meetings, Critical Care Medicine, 1), A177, 2013 | Conference Abstract |
| Van De Vijver, M., Bertaud, S., Nailor, S., Marais, G., Baby diaries: A tool to improve parental communication in the neonatal unit, Archives of Disease in Childhood, 99, A81–A82, 2014 | Conference Abstract |
| van de Vijver, M., Evans, M., A tool to improve communication in the neonatal unit, BMJ Quality Improvement ReportsBMJ qual, 4, 2015 [PMC free article: PMC4645918] [PubMed: 26734365] | Study design not in protocol - close ended, yes/no questionnaire |
| Waite-Jones, J. M., Majeed-Ariss, R., Smith, J., Stones, S. R., Van Rooyen, V., Swallow, V., Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study, JMIR MHealth and UHealth, 6, e25, 2018 [PMC free article: PMC5797289] [PubMed: 29351898] | Not relevant to privacy and confidentiality |
| Wales, Jackie, Brewin, Nicola, Raghavan, Raghu, Arcelus, Jon, Exploring barriers to South Asian help-seeking for eating disorders, Mental Health Review Journal, 22, 40–50, 2017 | Population not in protocol - >18 years old |
| Walsh, J., Scaife, V., Notley, C., Dodsworth, J., Schofield, G., Perception of need and barriers to access: The mental health needs of young people attending a Youth Offending Team in the UK, Health and Social Care in the Community, 19, 420–428, 2011 [PubMed: 21366758] | Not relevant to privacy and confidentiality |
| Watts, R., Zhou, H., Shields, L., Taylor, M., Munns, A., Ngune, I., Family-centered care for hospitalized children aged 0-12 years: A systematic review of qualitative studies, JBI Database of Systematic Reviews and Implementation Reports, 12, 204–283, 2014 [PubMed: 27820513] | Not relevant to privacy and confidentiality |
| White, B., Tuschl, K., Walker, J., Segal, T., Viner, R. M., Confidentiality, consent and privacy: A challenge even in a specialist young person unit, Archives of disease in childhood, 1), A65, 2010 | Conference Abstract |
| Whittingham,Koa, Boyd,Roslyn N., Sanders,Matthew R., Colditz,Paul, Parenting and prematurity: Understanding parent experience and preferences for support, Journal of Child and Family Studies, 23, 1050–1061, 2014 | Country: Australia |
| Wiering, B. M., Noordman, J., Tates, K., Zwaanswijk, M., Elwyn, G., De Bont, E. S. J. M., Beishuizen, A., Hoogerbrugge, P. M., Van Dulmen, S., Sharing decisions during diagnostic consultations; an observational study in pediatric oncology, Patient Education and Counseling, 99, 61–67, 2016 [PubMed: 26298218] | No qualitative data |
| Wong et al, Risk discourse and sexual stigma: Barriers to STI testing, treatment and care among young heterosexual women in disadvantaged neighbourhoods in Toronto, Can J Hum Sex, 21, 75–89, 2012 | Country: Canada |
| Wood, D., Geoghegan, S., Ramnarayan, P., Davis, P. J., Pappachan, J. V., Goodwin, S., Wray, J., Eliciting the experiences of the adolescent-parent dyad following critical care admission: a pilot study, European Journal of Pediatrics, 177, 747–752, 2018 [PMC free article: PMC5899104] [PubMed: 29468417] | Not related to privacy and confidentiality |
| Wyatt, K. D., Prutsky Lopez, G., Domecq Garces, J. P., Erwin, P., Brinkman, W. B., Montori, V. M., LeBlanc, A., Study protocol: a systematic review of pediatric shared decision making, Systematic reviews, 2, 48, 2013 [PMC free article: PMC3708782] [PubMed: 23816266] | Published protocol for quantitive systematic review |
| Yamaji, Noyuri, Suto, Maiko, Takemoto, Yo, Suzuki, Daichi, Lopes, Katharina da Silva, Ota, Erika, Supporting the Decision Making of Children With Cancer: A Meta-synthesis, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses, 1043454220919711, 2020 [PubMed: 32456542] | Systematic review - Included studies checked for inclusion, no relevant studies |
| Ye, Jiali, Rust, George, Fry-Johnson, Yvonne, Strothers, Harry, E-mail in patient-provider communication: A systematic review, Patient Education and Counseling, 80, 266–273, 2010 [PMC free article: PMC4127895] [PubMed: 19914022] | Systematic review - Included studies checked for inclusion, no relevant studies |
Economic studies
No economic evidence was identified for this review. See supplementary material 6 for details.
Appendix L. Research recommendations
Research recommendations for review question: How should issues about consent, privacy and confidentiality be addressed with babies, children and young people?
No research recommendations were made for this review question.
Appendix M. Evidence from reference groups and focus groups
Appendix N. Evidence from national surveys
Final
Evidence reviews underpinning recommendations 1.1.1, 1.1.3 and 1.4.1 to 1.4.14 in the NICE guideline
These evidence reviews were developed by the National Guideline Alliance which is a part of the Royal College of Obstetricians and Gynaecologists
Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.
NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.
- Supplement 1: Glossary and abbreviations (PDF)
- Supplement 2: Methods (PDF)
- Supplement 4: Evidence from reference and focus groups (PDF)
- Supplement 4a: Reference and focus groups evidence (PDF)
- Supplement 4b: Children and young people's opinions and experiences of healthcare (PDF)
- Supplement 5: Grey literature review of national surveys (PDF)
- Supplement 5a: Grey literature mapping to questions (PDF)
- Supplement 6: Economic study selection (PDF)
- When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.[J Clin Ethics. 2024]When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.McArdle E, Teelin KL, Borschuk A, Brown AEC. J Clin Ethics. 2024 Summer; 35(2):85-92.
- Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility.[Front Genet. 2021]Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility.Beauvais MJS, Thorogood AM, Szego MJ, Sénécal K, Zawati MH, Knoppers BM. Front Genet. 2021; 12:535340. Epub 2021 Mar 31.
- Adolescent sexuality and public policy: a human rights response.[Politics Life Sci. 1996]Adolescent sexuality and public policy: a human rights response.Roscam Abbing HD. Politics Life Sci. 1996 Sep; 15(2):314-6.
- Review Sexual and reproductive health care for adolescents: legal rights and policy challenges.[Adolesc Med State Art Rev. 2007]Review Sexual and reproductive health care for adolescents: legal rights and policy challenges.English A. Adolesc Med State Art Rev. 2007 Dec; 18(3):571-81, viii-ix.
- Review Confidentiality, consent, and caring for the adolescent patient.[Curr Opin Pediatr. 2009]Review Confidentiality, consent, and caring for the adolescent patient.Berlan ED, Bravender T. Curr Opin Pediatr. 2009 Aug; 21(4):450-6.
- Consent, privacy and confidentialityConsent, privacy and confidentiality
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