Too vulnerable? Successful practices for conducting research with children and young people who have life-limiting or life-threatening illness.
Background: A dearth of evidence exists on how to include children and young people in palliative care research. Aim: We aimed to identify successful practices in involvement, recruitment and data collection with children and young people with life-limiting illness in research. Design: We synthesise...
| Publicado en: | Palliative Medicine Vol. 39; no. 9; pp. 1021 - 1030 |
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| Autores principales: | , , , , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Sage Publications Inc.
Oct2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=188284661&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 188284661 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 02692163 31I jtl: Palliative Medicine issn: 02692163 maglogo: Y pubinfo: dt: Oct2025 vid: 39 iid: 9 pid: 344 pub: Sage Publications Inc. place: Thousand Oaks, California artinfo: ui: 188284661 187744194 188284661 188284661 10.1177/02692163251362046 188284661 ppf: 1021 ppct: 9 formats: tig: atl: Too vulnerable? Successful practices for conducting research with children and young people who have life-limiting or life-threatening illness. aug: au: Namisango, Eve Friedel, Marie Yurduşen, Sema Alrjoub, Waleed Braybrook, Debbie Alarjeh, Ghadeer Roach, Anna Boufkhed, Sabah Farsides, Bobbie Coombes, Lucy Harding, Richard affil: African Palliative Care Association, Kampala, Uganda sug: subj: Research, Medical Ethical Issues Critical Illness Research Subject Recruitment Ethical Issues Research Subject Recruitment Ethical Issues Research Ethics Human Funding Source Male Female Child, Preschool Child Adolescence Jordan Turkiye Kenya Namibia South Africa Uganda Belgium United Kingdom Data Collection Thematic Analysis Semi-Structured Interview Multimethod Studies Health Personnel Descriptive Statistics Protocols Child Health Communication Patient Participation Professional-Patient Relations Play Therapy Health Literacy Clinical Competence Caregiver Burden Palliative Care Photography Purposive Sample World Health Organization Child, Preschool: 2-5 years Child: 6-12 years Adolescent: 13-18 years Male Female ab: Background: A dearth of evidence exists on how to include children and young people in palliative care research. Aim: We aimed to identify successful practices in involvement, recruitment and data collection with children and young people with life-limiting illness in research. Design: We synthesised methods from five primary studies from three geographical regions in which children with life-limiting conditions were recruited and interviewed. Using Expert Elicitation Methodology we identified successful practices in the three areas of involvement, recruitment and data collection. We established consensus on methodological challenges and solutions, and developed 10 recommendations for inclusion in research protocols. Setting: Primary cross-national research in three regions; Middle East (one study), sub-Saharan Africa (one study), Europe (three studies), reporting on studies that recruited N = 244 children aged 5–18 years. Results: Recommendations are: (1) research team supported by advisory group of children for entire research process; (2) appropriate distress protocol tailored to population; (3) opt not to use term 'palliative care' in study materials if significant distress is a risk; (4) be deliberate in purposive sampling to ensure diagnoses heterogeneity where appropriate; (5) age-appropriate information materials pre-tested by children; (6) clinical teams receive training in recruitment; (7) time to build rapport before starting data collection; (8) consider potential biases and advantages of having parent/carer present during interview; (9) use age-appropriate toys/games during interviews; (10) selfcare for researchers to manage distress. Conclusions: These recommendations can guide design and conduct of research, enabling children with life-limiting illness to meaningfully participate and express their views. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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