'A group of totally awesome people who do stuff' - a qualitative descriptive study of a children and young people's patient and public involvement endeavour

Faye Forsyth, Caroline Saunders, Anne Elmer, Shirlene Badger, Faye Forsyth, Caroline Saunders, Anne Elmer, Shirlene Badger

Abstract

Background: In 2013, the Cambridge Clinical Research Facility (CCRF) set up a Children's Non-Executive Research Board to advise on service and facility development and research involving children and young people (CYP). In 2015, the Children's Experiences of Engaging in Research study (CHEER) was conceived to explore the Children's Board as a patient and public involvement initiative.

Aim: To explore the views of CYP, staff and parents involved in the Children's Board with the view to describe their experiences of the selected mechanism of involvement (Children's Board) within the context of operation (CCRF).

Methods: A qualitative descriptive methodology involving qualitative content analysis of semi-structured interviews was used to derive descriptive summaries of the interview data.

Setting and participants: Interviews were carried out with staff (n = 5), children (n = 2) and parents (n = 2) who participated in the first or second Children's Board meetings.

Results: Twelve descriptive summaries emerged: (1) CCRF 'role' perspective (2) purpose, remit and future direction (3) aspirations (4) learning as reciprocation (5) regular meetings, contact and feedback (6) expectation setting and ground rules (7) culture of PPI (8) surprise, underestimation and self-selection (9) reciprocity, incentivisation and participation (10) practicalities, timing and barriers (11) parental roles (12) event structure. These highlighted the importance of selecting the right mechanism of involvement in relation to context for involvement and the reductive biases adults and healthcare providers may unconsciously hold. Both of these aspects may affect the efficacy of PPI endeavours with CYP.

Discussion and conclusions: Mechanisms by which CYP are involved in research should be considered from the outset; taking into consideration both the setting and contextual features. Contextual and process factors important in the adult PPI realm were generally observed in this PPI initiative with CYP; however further research is required to explore unconscious biases and reductive perceptions in adult facilitators.

Keywords: Children and young people; Patient and public involvement; Qualitative description.

Conflict of interest statement

Ethics approval by National Research Ethics Service London-Chelsea was granted in October 2015, REC Reference: 15/LO/1364.Participant’s consented to anonymous publishing of their data.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Flow Diagram

References

    1. Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H. The PIRICOM study: a systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. 2010. University of Warwick and UK Clinical Research Collaborative.
    1. Howe A, Mathie MD, Cowe M, Goodman C, Kennan J, Kendall S, Poland F, Staniszewska S, Wilson P. Learning to work together – lessons from a reflective analysis of a research project on public involvement. Res Involv Engage. 2017;3(1):1. doi: 10.1186/s40900-016-0051-x.
    1. INVOLVE Briefing notes for researchers: involving the public in NHS, public health and social care research. 2012. INVOLVE, Eastleigh.
    1. Boote J, Baird W, Beecroft C. Public involvement at the design stage of primary health research: a narrative review of case examples. Health Policy. 2010;95:10–23. doi: 10.1016/j.healthpol.2009.11.007.
    1. Evans D, Coad J, Cottrell K, Dalrymple J, Davies R, Donald C, et al. Public involvement in research: assessing impact through a realist evaluation. Health Serv Deliv Res. 2014;2(36):1–28. doi: 10.3310/hsdr02360.
    1. Wilson P, Mathie E, Keenan J, McNeilly E, Goodman C, Howe A, Poland F, Staniszewska A, Kendall S, Munday D, Cowe M, Peckham S. ReseArch with Patient and Public involvement: a RealisT evaluation – the RAPPORT study. Health Serv Deliv Res. 2015;3(38):1–178.
    1. Crocker JC, Boylan AM, Bostock J. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview. Health Expect. 2016;20:519–528. doi: 10.1111/hex.12479.
    1. Staniszewska S, Adebajo A, Barber R, Beresford P, Brady L-M, Brett J, Elliot J, Evans D, Haywood KL, Jones D, Mockford C, Nettle M, Rose D, Williamson T. Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact. Int J Consum Stud. 2011;35:628–632. doi: 10.1111/j.1470-6431.2011.01020.x.
    1. United Nations Convention on the Rights of the Child. 1989. . Accessed 11 Feb 2019.
    1. Hawke LD, Relihan J, Miller J, McCann E, Rong J, Darnay K, Docherty S, Chaim G, Henderson JL. Engaging youth in research planning, design and execution: practical recommendations for researchers. Health Expect. 2018;21:1–6. doi: 10.1111/hex.12795.
    1. Bird D, Culley L, Lakhanpaul M. Why collaborate with children in health research: an analysis of the risks and benefits of collaboration with children. Arch Dis Child Edu Pract Ed. 2013;98:42–48. doi: 10.1136/archdischild-2012-303470.
    1. Bate J, Ranasinghe N, Ling R, Preston J, Nightingale R, Denegri S. Public and patient involvement in paediatric research. Arch Dis Child Educ Pract Ed. 2016;101:158–161. doi: 10.1136/archdischild-2015-309500.
    1. Mawn L, Welsh P, Kirkpatrick L, Webster L, Stain H. Getting it right! Enhancing youth involvement in mental health research. Health Expect. 2015;19:908–919. doi: 10.1111/hex.12386.
    1. Brady L, Templeton L, Toner P, Watson J, Evans D, Percy-smith B, Copello A. Involving young people in drug and alcohol research. Drugs and Alcohol Today. 2018;18(1):28–38. doi: 10.1108/DAT-08-2017-0039.
    1. NIHR Infrastructure. . Accessed 02 Jan 2019.
    1. Cambridge Clinical Research Facility. . Accessed 02/01/2019.
    1. INVOLVE Reference. . Accessed 02 Jan 2019.
    1. GenerationR, . Accessed 11 Feb 2019.
    1. Sandelowski M. Focus on Research Methods: Whatever Happened to Qualitative Description? 2000. Res Nursing Health. 2000;23:334–340. doi: 10.1002/1098-240X(200008)23:4<334::AID-NUR9>;2-G.
    1. Bengtsson M. How to plan and perform a qualitative study using content analysis. Nursing Plus Open. 2016;2:8–14. doi: 10.1016/j.npls.2016.01.001.
    1. Maxwell JA. Using numbers in qualitative research. Qual Inq. 2010;16(6):475–482. doi: 10.1177/1077800410364740.
    1. Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodard S, Altman DG, Moher D, Barber R, Denigri S, Entwistle A, Littlejohns P, Morris C, Suleman R, Thomas V, Tysall C. GRIPP2 reporting checklist: tools to improve reporting of patient and public involvement in research. Res Involve Engage. 2017;358:1–7.
    1. Liverpool YPAG. (. Accessed 02 Jan 2019.
    1. Shipee ND, Garces JPD, Lopez GJP. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–1166. doi: 10.1111/hex.12090.
    1. Gibson AJ, Lewando-Hundt G, Blaxter L. Weak and strong publics: drawing on Nancy Fraser to explore parental participation in neonatal networks. Health Expect. 2011;17:104–115. doi: 10.1111/j.1369-7625.2011.00735.x.
    1. Staley K. Exploring impact: public involvement in NHS, public health and social care research. 2009. INVOLVE.
    1. Kellet M, Forrest R, Dent N, Ward S. “Just teach us the skills please, We’ll do the rest”: empowering ten-year-olds as active researchers. Child Soc. 2004;18:329–343. doi: 10.1002/chi.807.
    1. Carr S. Participation, power, conflict and change: theorizing dynamics of service user participation in the social care system of England and Wales. Crit Soc Policy. 2007;27(2):266–276. doi: 10.1177/0261018306075717.
    1. Martin GP, Carter P, Dent M. Major health service transformation and the public voice: conflict, challenge or complicity?. J Health Serv Res Policy 2017;0:1–8.
    1. Parsons S, Thomson W, Cresswell K, Starling B, McDonagh JE. What do young people with rheumatic conditions in the UK think about research involvement? A Qualitative Study Paediatric Rheumatol. 2018;16:35. doi: 10.1186/s12969-018-0251-z.
    1. Kirby P. A guide to actively involving young people in research: for researchers, research commissioners, and managers. 2004. INVOLVE.
    1. Goodman A, Roberts H, Green J. Reciprocity: combining youth involvement, engagement and participation in health research. London School of Hygiene & Tropical Medicine: Technical Report; 2013.
    1. NIHR INVOLVE. Reward and recognition for children and young people involved in research – things to consider . Accessed 14 Nov 2018.
    1. National Children’s Bureau. Young People in Research: How to involve us. Guidance for researchers from the PEAR young people’s public health group. 2010. Wellcome Trust.
    1. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2012;17:637–650. doi: 10.1111/j.1369-7625.2012.00795.x.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe