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Independent advocacy in healthcare for children and young people
Evidence review I
NICE Guideline, No. 204
National Guideline Alliance (UK).
Independent advocacy in healthcare for children and young people
Review question
How can the views of babies, children and young people be best represented by independent advocates?
Introduction
The Care Act 2014 and Mental Health Act 1983/2007 place a duty on UK councils to provide an independent advocate for a baby, child or young person who has substantial difficulties being involved in their own healthcare or who may not have an appropriate person to represent them. In addition to this, independent advocates may be used in healthcare situations where babies, children and young people cannot agree with their parents or healthcare professionals over a healthcare decision, or where it is not appropriate for their parents or carers to represent them.
Independent advocates provide information and an opportunity for children and young people to express their wishes and concerns about healthcare, with the reassurance that the advocates are independent from their healthcare providers and that these discussions will not impact the care they receive. Furthermore, the independent advocate develops a trusting relationship with the child or young person, empowering them to make decisions, and acts as an objective supporter. However, independent advocates can be obtained from a range of providers, with individual advocates having different competencies and experience, and there may be variation in practice and quality of support.
The aim of this review is to determine how children and young people can be best represented by independent advocates.
Summary of the protocol
See Table 1 for a summary of the population, phenomenon of interest and primary outcome 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 babies, children and young people prefer to be supported by independent advocates in healthcare.
A systematic review of the literature was conducted using a combined search but no studies were identified which were applicable to this review question.
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
No studies were identified which were applicable to this review question (and so there are no evidence tables in appendix D). No meta-analysis was undertaken for this review (and so there are no forest plots in appendix E).
Quality assessment of studies included in the evidence review
No studies were identified which were applicable to this review question (and so there are no 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 evidence is presented in Table 2.
Table 2
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 provided additional evidence for this review. A summary of the evidence is presented in Table 3.
Table 3
Summary of the evidence from national surveys.
See the evidence summary in appendix N.
Evidence from an expert witness
An expert witness (an independent advocate) provided additional evidence for this review.
See the evidence summary in appendix O.
There was no evidence available from a child or young person with experience of using advocacy services.
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
This review focused on how babies, children and young people feel that their views and needs can be best represented by independent advocates. To adequately cover this issue, the review was designed to include qualitative data. Due to this, the committee could not specify in advance what data might be located in the literature but they did identify the following main themes in advance to guide the review:
- Access to records of healthcare staff discussions
- Adequate training for independent advocates including knowledge about developmentally-appropriate approaches
- Appeal to, or use of, advocacy groups
- Availability and accessibility of appropriate advocacy services
- Awareness of independent advocate services
- Encouraging and supporting self-advocacy when possible
- Sensitivity and responsiveness of independent advocate to feedback from child or young person
- Views on timing of support provided from the independent advocate, establishing views regarding where and when advocacy is beneficial, including continuity of support
No studies were identified in the literature for this review. However, the expert witness addressed most of the themes identified by the committee, except the use of developmentally-appropriate training and the use of advocacy groups.
The quality of the evidence
No studies were identified which were applicable to this review question.
Benefits and harms
The committee were aware of the legal requirement for UK Councils to provide an independent advocate for any person under 18 who has been detained under the Mental Health Act 183, or for a looked after child or young person under the terms of the Care Act 2014 and the Mental Capacity Act 2005. Therefore, the committee made a recommendation to inform eligible children and young people that they could have an independent advocate to support them. However, access to independent advocates for children and young people who do not meet the criteria specified in these pieces of legislation depends on the local commissioning arrangements and, despite it not being a legal requirement, the committee were aware that independent advocates could provide invaluable support to babies, children or young people who did not have parents or carers or another professional who could adequately advocate for them. The committee also made a recommendation for commissioners to consider independent advocacy for a wider population of children and young people who would not be eligible under statutory provision, to protect their interests and wishes and to contribute towards a positive healthcare experience.
The testimony of the expert witness included information on the role of an independent advocate in the mental health setting, how children and young people are able to access them, and the independent nature of the role. The committee discussed that children and young people often are not aware of this service and do not know how an advocate could support them.. Therefore, the committee made a recommendation to ensure that children and young people are provided with this information. The committee agreed this information should also include the fact that an independent advocate is separate from their healthcare team, and any concerns they may raise will not affect their healthcare. If a child or young person decide that they would like to meet with an independent advocate, the committee made a recommendation that healthcare staff should support them.
The committee discussed that the period when an independent advocate might be needed can be a stressful time for children and young people. The expert witness described the importance of building a trusting relationship with children and young people, allowing a rapport to developed. Confidentiality is an important aspect of this trust, but the expert witness reported that the limits of this confidentiality (and when it will be broken) must also be explained. In order to best explain healthcare processes and translate medical language, independent advocates need to be familiar with medical terminology and with relevant healthcare systems. All these attributes are core to an independent advocate being able to support children and young people in their healthcare. Therefore, the committee made a recommendation describing the essential competencies of an independent advocate. Additionally, the expert witness and the committee discussed the importance of understanding the role of an independent advocate in empowering children and young people to make decisions, rather than making decisions on their behalf. This aspect of the role can sometimes be misconstrued by both healthcare staff and the public. Therefore, the committee made a recommendation clarifying this supportive role of the independent advocate.
The expert witness reported the use of feedback within the advocacy service. The committee discussed the importance of gaining views on service provision directly from children and young people, as there are aspects to paediatric independent advocacy that will not apply to adult advocacy and vice versa. Therefore, the committee made a recommendation to include a review process to make sure the advocacy service is good quality and is working well for children and young people.
In addition to the evidence from the expert witness, there was a limited amount of evidence presented from the grey literature review of national surveys and reference groups (age 11 to 14 years) on the meaning of and use of advocates. The committee agreed that the evidence from the reference group reinforced the testimony from the expert witness about the need to build trusting relationships with children and young people, and to empower them to make their healthcare decisions rather than having decisions made for them. The evidence from the national surveys showed that some young people may have found an advocate useful to help them to raise concerns about their healthcare.
The committee also discussed the potential harms of independent advocacy, most of which relate to the competency and experience of the independent advocate. One of these was the chance of information being presented to children and young people in either a misleading or misrepresentative manner, including what options are available to them. Both the expert witness and committee members with experience of independent advocates agreed that advocacy on behalf of children and young people required a different set of skills than advocating for adults. If a child was allocated an advocate experienced only in advocating for adults, this could be detrimental to the child or young person. Lack of time was also a potential area of harm, as independent advocates needed time to work with children and young people, and insufficient time may lead to sub-optimal advocacy.
All of these concerns might lead to poor representation of a child or young person’s views or insensitivity when talking about past experiences. This will affect both the immediate consultation and perhaps affect the child or young person’s views of independent advocates in the future.
As there was no evidence from the systematic review of the literature for this review the committee agreed that research was needed in this area and they made a research recommendation.
Cost effectiveness and resource use
No economic studies were identified which were applicable to this review question. The committee discussed that there may be some resource implications associated with a wider cohort of children and young people having access to an independent advocate, but that the extension of the service suggested in their recommendations would only apply to children or young people who had no one else to support them (neither parent nor carer nor another professional such as a social worker) and so was not likely to include a very large number of children. The committee agreed that for the majority of children and young people who would require such service, it is already a legal requirement under the Mental Health Act 1983, the Care Act 2014 and the Mental Capacity Act 2005. The recommendations in this area may make more children and young people aware of such services and there may be a greater uptake of independent advocate services which may have a financial impact for the NHS. The committee also discussed that there may be some resource implications in terms of healthcare professionals’ time in facilitating access to an independent advocate such as providing support in the initial contact and subsequent meetings. All the other recommendations in this area reflect current practice for most services and would have only modest resource implications, if any, which are justifiable as such care is likely to lead to improvements in children and young people’s experience of healthcare.
Recommendations supported by this evidence review
This evidence review supports recommendations 1.5.18 to 1.5.24 and the research recommendation on independent advocates.
References
No studies were identified which were applicable to this review question.
Appendices
Appendix A. Review protocol
Appendix B. Literature search strategies
Appendix C. Clinical evidence study selection
Appendix D. Clinical evidence tables
Evidence tables for review question: How can the views of babies, children and young people be best represented by independent advocates?
No evidence was identified which was applicable to this review question.
Appendix E. Forest plots
Forest plots for review question: How can the views of babies, children and young people be best represented by independent advocates?
No meta-analysis was conducted for this review question and so there are no forest plots.
Appendix F. GRADE-CERQual tables
GRADE-CERQual tables for review question: How can the views of babies, children and young people be best represented by independent advocates?
No evidence was identified which was applicable to this review question.
Appendix G. Economic evidence study selection
Economic evidence study selection for review question: How can the views of babies, children and young people be best represented by independent advocates?
No economic evidence was identified which was applicable to this review question.
Appendix H. Economic evidence tables
Economic evidence tables for review question: How can the views of babies, children and young people be best represented by independent advocates?
No evidence was identified which was applicable to this review question.
Appendix I. Economic evidence profiles
Economic evidence profiles for review question: How can the views of babies, children and young people be best represented by independent advocates?
No economic evidence was identified which was applicable to this review question.
Appendix J. Economic analysis
Economic evidence analysis for review question: How can the views of babies, children and young people be best represented by independent advocates?
No economic analysis was conducted for this review question.
Appendix K. Excluded studies
Excluded studies for review question: How can the views of babies, children and young people be best represented by independent advocates?
Clinical studies
Table 5Excluded studies and reasons for their exclusion
| Study | Reason for exclusion |
|---|---|
| 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] | Population of included studies not in protocol. Included studies checked for possible inclusion |
| 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] | Phenomenon of interest not in protocol - No themes relating to advocacy and support in healthcare, and views are very parent-centric |
| 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 |
|
Actrn,, Improving outcomes in mental health for children and families: a study of Enhanced Stepping Stones Triple P, Http://www | Protocol for ongoing clinical trial |
| Ahuja, Alka S., Williams, Richard, Telling stories: Learning from patients’ and families’ experiences of specialist child and adolescent mental health services, International Journal of Consumer Studies, 34, 603–609, 2010 | Population not in protocol - 15 parents/carers of patients aged 5-15. Patients only (jointly) participated in 2 of the interviews. |
| Alderdice, F., Gargan, P., McCall, E., Franck, L., Online information for parents caring for their premature baby at home: A focus group study and systematic web search, Health Expectations, 30, 30, 2018 [PMC free article: PMC6117489] [PubMed: 29380916] | Phenomenon of interest not in protocol - No themes relating to advocacy and support in healthcare |
| 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| 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 |
| Allcock, D., Smith, K., Exploring parent views of community matrons, Nursing Times, 110, 21–23, 2014 [PubMed: 24834602] | Outcomes not in protocol - No qualitative data analysis performed |
| 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] | Population of included studies not in protocol. Included studies checked for possible included studies. |
| Allen, N., McFarlane, L., Shanahan, R., Bassett, E. Z. A., Wellcome home: The work of shelter, a charitable organisation in facilitating the discharge of children with medical complexities (CMIC) at birmingham children’s hospital, Developmental medicine and child neurology, 59 (Supplement 4), 76, 2017 | Conference abstract |
| Anderson, L., Wilson, J., Williams, G., Cognitive Orientation to daily Occupational Performance (CO-OP) as group therapy for children living with motor coordination difficulties: An integrated literature review, Australian occupational therapy journal, 64, 170–184, 2017 [PubMed: 27704547] | Study design of included studies not in protocol. Included studies checked for possible included studies. |
| 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 |
| Aranda, K., Coleman, L., Sherriff, N. S., Cocking, C., Zeeman, L., Cunningham, L., Listening for commissioning: A participatory study exploring young people’s experiences, views and preferences of school-based sexual health and school nursing, Journal of Clinical Nursing, 27, 375–385, 2018 [PubMed: 28639330] | Phenomenon of interest not in protocol - No themes related to advocacy and support |
| Arenson, M., Hudson, P. J., Lee, N., Lai, B., The Evidence on School-Based Health Centers: A Review, Lobal Pediatric HealthGlob, 6, 2333794X19828745, 2019 [PMC free article: PMC6381423] [PubMed: 30815514] | Study design not in protocol - Narrative review. |
| 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] | Population and outcomes not in protocol - Any themes relating to advocacy and support were from parents of children aged 7-11. |
| Armstrong, V. G., Howatson, R., Parent-infant art psychotherapy: A creative dyadic approach to early intervention, Infant mental health journal, 36, 213–222, 2015 [PubMed: 25728765] | Study design not in protocol - No qualitative data analysis presented |
| 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] | Phenomenon of interest of included studies not in protocol. Included studies checked for possible included studies |
| Ashfield-Watt, P., Philips, A., Dale, P., Hale, M., McDowell, I., Exploring digital arts-based approaches that empower children and young people with Familial Hypercholesterolaemia (FH), Atherosclerosis Supplements, 28, e6, 2017 | 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Aston, Hermione Jane, An ecological model of mental health promotion for school communities: Adolescent views about mental health promotion in secondary schools in the UK, International Journal of Mental Health Promotion, 16, 289–307, 2014 | Phenomenon of interest not in protocol - Mental health promotion within a secondary school curriculum |
| 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 for ongoing trial |
| 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] | Phenomenon of interest not in protocol - No themes relating to advocacy and support in healthcare |
| Cavaleri, Mary A., Olin, S., Kim, Annie, Hoagwood, Kimberly E., Burns, Barbara J., Family support in prevention programs for children at risk for emotional/behavioral problems, Clinical Child and Family Psychology Review, 14, 399–412, 2011 [PMC free article: PMC3985284] [PubMed: 22080305] | Study design of included studies not in protocol. Included studies checked for possible included studies |
| Dale, H., Watson, L., Adair, P., Moy, M., Humphris, G., The perceived sexual health needs of looked after young people: findings from a qualitative study led through a partnership between public health and health psychology, Journal of Public Health, 33, 86–92, 2011 [PubMed: 20688783] | Phenomenon of interest not in protocol - Sexual health and contraception with no generalizable themes |
| Daniels, Karen, Cultural agents creating texts: A collaborative space adventure, Literacy, 48, 103–111, 2014 | Setting not in protocol - Early years compulsory education setting |
| Datt, C., Travers, M., Odell, C., Improving the hospital experience for young people (YP) with autism, Archives of disease in childhood, 102 (Supplement 1), A20, 2017 | Conference abstract |
| 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 | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Davison, Jo, Zamperoni, Victoria, Stain, Helen J., Vulnerable young people’s experiences of child and adolescent mental health services, Mental Health Review Journal, 22, 95–110, 2017 | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Dawson, A., Jackson, D., The primary health care service experiences and needs of homeless youth: a narrative synthesis of current evidence, Contemporary nurse, 44, 62–75, 2013 [PubMed: 23721389] | Phenomenon of interest of included studies not in protocol. Included studies checked for possible included studies |
| Dublon, V. E., Green, S., Benitez-Castillo, M., Edwards, T., Leiva, A., The production of a diabetes information film, by young people who have diabetes, as a means of educating others, Archives of disease in childhood, 103 (Supplement 1), A166, 2018 | Conference abstract |
| Dunn, V., O’Keeffe, S., Stapley, E., Midgley, N., Facing Shadows: working with young people to coproduce a short film about depression, Research Involvement & Engagement, 4, 46, 2018 [PMC free article: PMC6258258] [PubMed: 30505464] | Study design not in protocol - No qualitative data analysis presented |
| 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] | Population of included studies not in protocol. Included studies checked for possible included studies |
| Eaton, Kim, Ohan, Jeneva L., Stritzke, Werner G., Courtauld, Hannah M., Corrigan, Patrick W., Mothers’ decisions to disclose or conceal their child’s mental health disorder, Qualitative health research, 27, 1628–1639, 2017 [PubMed: 28799479] | Country: Australia |
| 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Edwards, D., Noyes, J., Lowes, L., Haf Spencer, L., Gregory, J. W., An ongoing struggle: A mixed-method systematic review of interventions, barriers and facilitators to achieving optimal self-care by children and young people with Type 1 Diabetes in educational settings, BMC pediatrics, 14 (1) (no pagination), 2014 [PMC free article: PMC4263204] [PubMed: 25213220] | Phenomenon of interest of included studies not in protocol. Included studies checked for possible included studies |
| Ellis, J., Boger, E., Latter, S., Kennedy, A., Jones, F., Foster, C., Demain, S., Conceptualisation of the ‘good’ self-manager: A qualitative investigation of stakeholder views on the self-management of long-term health conditions, Social Science and Medicine, 176, 25–33, 2017 [PubMed: 28126586] | Population not in protocol – Adults > 18 years old |
| Fargas-Malet, Montserrat, McSherry, Dominic, Pinkerton, John, Kelly, Greg, Home on a care order: Who the children are and what the care order is for, Child & Family Social Work, 22, 813–821, 2017 | Phenomenon of interest not in protocol - No themes relating to advocacy and support in healthcare |
| Fasciano, K., Souza, P., Bielaczyc, A., Englander, S., Building connection and creating community through the development of a young adult cancer conference, Psycho-Oncology, 3), 191–192, 2014 | Conference abstract |
| 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] | Phenomenon of interest of included studies not in protocol. Included studies checked for possible included studies |
| 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] | Population of included studies not in protocol. Included studies checked for possible included studies |
| 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] | Parental views of under 5’s but poor proxy. Themes are developed around how parents want to be included in their children’s care, rather than how they think their child would want them to be involved |
| 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] | Population of included studies not in protocol. Included studies checked for possible included studies |
| 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Holley, S., Walker, D., Knibb, R., Latter, S., Liossi, C., Mitchell, F., Radley, R., Roberts, G., Barriers and facilitators to self-management of asthma in adolescents: An interview study to inform development of a novel intervention, Clinical and experimental allergy, 48, 944–956, 2018 [PubMed: 29573024] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| 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] | Phenomenon of interest not in protocol - Qualitative analysis of goals set by patients rather than their views on/experiences with goal setting |
| 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] | Study design not in protocol - No qualitative data presented. Secondary analysis of goal themes devised by children to build framework for outcomes measurements |
| Kohut, Sara Ahola, Stinson, Jennifer, van Wyk, Margaret, Giosa, Lidia, Luca, Stephanie, Systematic review of peer support interventions for adolescents with chronic illness, International Journal of Child and Adolescent Health, 7, 183–197, 2014 | Study design of included studies not in protocol. Included studies checked for possible included studies |
| Larkin, M., Boden, Z. V., Newton, E., On the Brink of Genuinely Collaborative Care: Experience-Based Co-Design in Mental Health, Qualitative health research, 25, 1463–1476, 2015 [PubMed: 25829467] | Study design not in protocol - Narrative description and reflection on study with no data presented |
| 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] | Population not in protocol - Aged 13 - 24 years old (50% under 18 years) with no way of attaching themes to ages |
| Lerch, Matthew F., Thrane, Susan E., Adolescents with chronic illness and the transition to self-management: A systematic review, Journal of Adolescence, 72, 152–161, 2019 [PubMed: 30903932] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Lester, H., Marshall, M., Jones, P., Fowler, D., Amos, T., Khan, N., Birchwood, M., Views of young people in early intervention services for first-episode psychosis in England, Psychiatric Services, 62, 882–887, 2011 [PubMed: 21807826] | Population not in protocol - Age 14-35 years (mean male age 21 years, mean female age 23) with no way of assigning age to themes |
| 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Macdonald, K., Greggans, A., ‘Cool friends’: an evaluation of a community befriending programme for young people with cystic fibrosis, Journal of Clinical Nursing, 19, 2406–14, 2010 [PubMed: 20920068] | Phenomenon of interest not in protocol - No themes relating to advocacy or support |
| Mattacola, E., “They Think It’s Helpful, but It’s Not”: a Qualitative Analysis of the Experience of Social Support Provided by Peers in Adolescents with Type 1 Diabetes, International journal of behavioral medicine, 27, 444–454, 2020 [PubMed: 32291619] | Phenomenon of interest not in protocol - No relevant type of support for young people |
| 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] | Narrative review. Included studies checked for possible included studies |
| McTavish, J. R., Kimber, M., Devries, K., Colombini, M., MacGregor, J. C. D., Wathen, N., MacMillan, H. L., Children’s and caregivers’ perspectives about mandatory reporting of child maltreatment: A meta-synthesis of qualitative studies, BMJ open, 9 (4) (no pagination), 2019 [PMC free article: PMC6500368] [PubMed: 30948587] | Population of included studies not in protocol. Included studies checked for possible included studies |
| Mehmood, A., Cammidge, S., Guy, E., Peckham, D., Duff, A., Evaluation of youth work support for teenagers and young adults with cystic fibrosis, Journal of Cystic Fibrosis, 17 (Supplement 3), S128, 2018 | Conference abstract |
| 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 | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| 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] | Parental views of under 5’s but poor proxy. Themes are developed around how parents want to be included in their children’s care, rather than how they think their child would want them to be involved |
| Nightingale, R., Hall, A., Gelder, C., Friedl, S., Brennan, E., Swallow, V., Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration, Journal of medical Internet research, 19, e235, 2017 [PMC free article: PMC5516103] [PubMed: 28676470] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| O’Neill, T., Wakefield, J., Fifteen-minute consultation in the normal child: Challenges relating to sexuality and gender identity in children and young people, Archives of Disease in Childhood: Education and Practice Edition, 102, 298–303, 2017 [PubMed: 28495667] | Study design not in protocol - Narrative review with 2 case studies included |
| Oulton, K., Sell, D., Kerry, S., Gibson, F., What do children and young people with learning disabilities want from hospital services?, Archives of disease in childhood, 3), A84–A85, 2015 | Conference abstract |
| 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] | Study design not in protocol - Description of the development/implementation of a unique learning mentor with illustrative quotes |
| 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] | Population of included studies not in protocol. Included studies checked for possible included studies |
| 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| 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: Canada |
| Robinson, S., Children and young people’s views of health professionals in England, Journal of child health care : for professionals working with children in the hospital and community, 14, 310–326, 2010 [PubMed: 21078696] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Rodrigues, S., Melchionda, V., Rodney, K., Coppens, K., Comparing children’s and parents’ perspectives on hospital care, Archives of disease in childhood, 1), A101, 2014 | Conference abstract |
| Rossiter, C., Levett-Jones, T., Pich, J., The impact of person-centred care on patient safety: An umbrella review of systematic reviews, International journal of nursing studies, 109, 103658, 2020 [PubMed: 32593882] | Phenomenon of interest of included studies not in protocol. Included studies checked for possible included studies |
| 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 |
| Scott, E., Dale, J., Russell, R., Wolke, D., Young people who are being bullied - do they want general practice support?, BMC family practice, 17, 116, 2016 [PMC free article: PMC4994263] [PubMed: 27550153] | Phenomenon of interest not in protocol - No themes relating to advocacy and support for healthcare |
| 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] | Phenomenon of interest not in protocol - No themes relating to advocacy or support for healthcare |
| 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 possible included studies |
| 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 presented. Included studies checked for possible included studies |
| 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| Troy, E., Doltani, D., Harmon, D., The role of a companion attending consultations with the patient. A systematic review, Irish Journal of Medical Science, 188, 743–750, 2019 [PubMed: 30374801] | Population not in protocol - Companions to adult patients only |
| 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] | Parental views of under 5’s but poor proxy. Themes are developed around how parents want to tell their child about medical information relating to genetic risks, rather than how and when children want to be informed of these |
| Valentine, J. C., Leach, S. M., Fowler, A. P., Stojda, D. K., Macdonald, G., Families and schools together (FAST) for improving outcomes for children and their families, Cochrane Database of Systematic Reviews, 2019, 2019 [PMC free article: PMC6699677] [PubMed: 31425610] | Population of included studies not in protocol. Included studies checked for possible included studies |
| Vasey, J., Smith, J., Kirschbaum, M., Chirema, K., Tokenism or true partnership: Parental involvement in the child’s acute pain care, Archives of disease in childhood, 101 (Supplement 1), A189, 2016 | Conference abstract |
| 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] | Phenomenon of interest not in protocol - No themes relating to independent advocacy |
| 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] | Population of included studies not in protocol. Included studies checked for possible included studies |
| 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] | Population of included studies not in protocol. Included studies checked for possible included studies |
Economic studies
No economic evidence was identified for this review. See supplementary material 6 for details.
Appendix L. Research recommendations
Appendix M. Evidence from reference groups and focus groups
Appendix N. Evidence from national surveys
Appendix O. Evidence from an expert witness
Final
Evidence reviews underpinning recommendations 1.5.18 to 1.5.24 and research recommendations 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)
- Review Technology and the environment: supportive resource or barrier for people with developmental disabilities?[Nurs Clin North Am. 2003]Review Technology and the environment: supportive resource or barrier for people with developmental disabilities?Hammel J. Nurs Clin North Am. 2003 Jun; 38(2):331-49.
- End-of-life care decisions in the PICU: roles professionals play.[Pediatr Crit Care Med. 2013]End-of-life care decisions in the PICU: roles professionals play.Michelson KN, Patel R, Haber-Barker N, Emanuel L, Frader J. Pediatr Crit Care Med. 2013 Jan; 14(1):e34-44.
- The patient experience of patient-centered communication with nurses in the hospital setting: a qualitative systematic review protocol.[JBI Database System Rev Implem...]The patient experience of patient-centered communication with nurses in the hospital setting: a qualitative systematic review protocol.Newell S, Jordan Z. JBI Database System Rev Implement Rep. 2015 Jan; 13(1):76-87.
- Review Empowering children and young people to advocate for themselves: Babies, children and young people’s experience of healthcare: Evidence review H[ 2021]Review Empowering children and young people to advocate for themselves: Babies, children and young people’s experience of healthcare: Evidence review HNational Guideline Alliance (UK). 2021 Aug
- Review Understanding the risks and benefits of healthcare decisions: Babies, children and young people’s experience of healthcare: Evidence review E[ 2021]Review Understanding the risks and benefits of healthcare decisions: Babies, children and young people’s experience of healthcare: Evidence review ENational Guideline Alliance (UK). 2021 Aug
- Independent advocacy in healthcare for children and young peopleIndependent advocacy in healthcare for children and young people
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