The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility.

Autor: van Driessche A; End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium. Anne.van.Driessche@vub.be.; Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), 1090, Brussels, Belgium. Anne.van.Driessche@vub.be., Gilissen J; End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium.; Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), 1090, Brussels, Belgium., De Vleminck A; End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium.; Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), 1090, Brussels, Belgium., Kars M; Center of Expertise Palliative Care Utrecht, Julius Center of Health and Primary Care, UMC Utrecht, Universiteitsweg 100, 3584 CG, Utrecht, the Netherlands., Fahner J; Center of Expertise Palliative Care Utrecht, Julius Center of Health and Primary Care, UMC Utrecht, Universiteitsweg 100, 3584 CG, Utrecht, the Netherlands.; Division of Paediatrics, Wilhelmina Children's Hospital, UMC Utrecht, Utrecht, the Netherlands., van der Werff Ten Bosch J; Department of Paediatric Hematology-Oncology, University Hospital Brussels, Vrije Universiteit Brussel (VUB), 1090, Jette, Belgium., Deliens L; End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium.; Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), 1090, Brussels, Belgium.; Department of Public Health and Primary Care, Ghent University, 9000, Ghent, Belgium., Cohen J; End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium.; Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), 1090, Brussels, Belgium., Beernaert K; End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium.; Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), 1090, Brussels, Belgium.; Department of Public Health and Primary Care, Ghent University, 9000, Ghent, Belgium.
Jazyk: angličtina
Zdroj: BMC pediatrics [BMC Pediatr] 2022 Apr 15; Vol. 22 (1), pp. 210. Date of Electronic Publication: 2022 Apr 15.
DOI: 10.1186/s12887-022-03247-9
Abstrakt: Background: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists.
Methods: Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences.
Results: The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families.
Conclusion: The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.
(© 2022. The Author(s).)
Databáze: MEDLINE
Externí odkaz: