The purpose of an individual care plan in pediatric palliative care according to healthcare professionals: a qualitative study.
Individual care plan
Pediatric palliative care
Shared decision-making
Journal
BMC palliative care
ISSN: 1472-684X
Titre abrégé: BMC Palliat Care
Pays: England
ID NLM: 101088685
Informations de publication
Date de publication:
04 Oct 2024
04 Oct 2024
Historique:
received:
05
06
2024
accepted:
26
09
2024
medline:
5
10
2024
pubmed:
5
10
2024
entrez:
4
10
2024
Statut:
epublish
Résumé
To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice. Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed. Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions. The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes.
Sections du résumé
BACKGROUND
BACKGROUND
To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice.
METHODS
METHODS
Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed.
RESULTS
RESULTS
Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions.
CONCLUSION
CONCLUSIONS
The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes.
Identifiants
pubmed: 39367385
doi: 10.1186/s12904-024-01569-2
pii: 10.1186/s12904-024-01569-2
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
236Informations de copyright
© 2024. The Author(s).
Références
Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative Care: the World Health Organization’s global perspective. J Pain Symptom Manage. 2002;24(2):91–6.
doi: 10.1016/S0885-3924(02)00440-2
pubmed: 12231124
Brouwer M. At the boundaries of life: Suffering and decision-making in children with life-threatening conditions (1–12 years) [Internet]. University of Groningen; 2021 [cited 2023 Dec 12]. http://hdl.handle.net/11370/18081913-675c-472c-872a-c2484f3c8f29
DiDomizio PG, Millar MM, Olson L, Murphy N, Moore D. Palliative Care needs Assessment for Pediatric Complex Care Providers. J Pain Symptom Manage. 2023;65(2):73–80.
doi: 10.1016/j.jpainsymman.2022.11.005
pubmed: 36384179
Zadeh S, Pao M, Wiener L. Opening end-of-life discussions: how to introduce voicing my CHOiCES
doi: 10.1017/S1478951514000054
pubmed: 24622210
Upshaw NC, Roche A, Gleditsch K, Connelly E, Wasilewski-Masker K, Brock KE. Palliative care considerations and practices for adolescents and young adults with cancer. Pediatr Blood Cancer. 2021;68(1):e28781.
doi: 10.1002/pbc.28781
pubmed: 33089627
National Guideline Alliance (UK). End of life care for infants, children and young people with life-limiting conditions: planning and management. London: National Institute for Health and Care Excellence; 2019.
Hays RM, Valentine J, Haynes G, Geyer JR, Villareale N, McKinstry B, et al. The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life. J Palliat Med. 2006;9(3):716–28.
doi: 10.1089/jpm.2006.9.716
pubmed: 16752977
Loeffen EAH, Tissing WJE, Schuiling-Otten MA, de Kruiff CC, Kremer LCM, Verhagen AAE. Individualised advance care planning in children with life-limiting conditions. Arch Dis Child. 2018;103(5):480–5.
doi: 10.1136/archdischild-2017-312731
pubmed: 29127099
Joren CY, Kars MC, Kremer LCM, Hofman SC, Rippen-Wagner H, Slingerland-Blom R, et al. Parents’ and Healthcare professionals experiences with the content of an Individual Care Plan for Pediatric Palliative Care: a mixed-method study. Palliative Care and Social Practice; 2024.
Richtlijn Palliatieve zorg voor. kinderen 2022 [Internet]. [cited 2023 Mar 2]. Kinderen, palliatieve zorg voor. https://palliaweb.nl/richtlijnen-palliatieve-zorg/richtlijn/palliatieve-zorg-voor-kinderen
Joren CY, Kars MC, Kremer LCM, Rippen H, Verhagen AAE, Aris-Meijer JL. Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol. BMJ Paediatr Open. 2023;7(1):e001677.
doi: 10.1136/bmjpo-2022-001677
pubmed: 36697034
pmcid: 9884846
Joren CY, Aris-Meijer JL, Kremer LCM, Hofman SC, Rippen-Wagner H, Slingerland-Blom R et al. The practical application of the individual care plan for pediatric palliative care: a mixed-method study. Children. 2024.
Boeije H. Analysis in qualitative research. London: SAGE; 2010.
Green J, Thorogood N. Qualitative methods for health research. 4th edition. Los Angeles: SAGE; 2018. 420 p. (Introducing qualitative methods).
Michiels EM, Joren CY, Kars MC, Aris JL, Verhagen AAE. Shared decision-making in pediatric palliative care in the Netherlands. Curr Probl Pediatr Adolesc Health Care. 2024.
Joren CY, Aris-Meijer JL, Verhagen AAE, Lantos J. How to move forward in shared decision-making in pediatric palliative care. Curr Probl Pediatr Adolesc Health Care. 2024;101569.
Vemuri S, Prentice TM. Seeking alignment of end-of-life goals within the Australian pediatric context. Curr Probl Pediatr Adolesc Health Care. 2023;101454.
Adams S, Cohen E, Mahant S, Friedman JN, MacCulloch R, Nicholas DB. Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study. BMC Pediatr. 2013;13(1):10.
doi: 10.1186/1471-2431-13-10
pubmed: 23331710
pmcid: 3570291
Love L, Newmeyer A, Ryan-Wenger N, Noritz G, Skeens MA. Lessons learned in the development of a nurse-led family centered approach to developing a holistic comprehensive clinic and integrative holistic care plan for children with cerebral palsy. J Spec Pediatr Nurs. 2022;27(1):e12354.
doi: 10.1111/jspn.12354
pubmed: 34374481
van den Berg M. Op weg naar goede praktijken in de kinderpalliatieve zorg. Een inventarisatie van onderzoek en praktijk. [Towards Good Practices in Children’s Palliative Care. An Assessment of Research and Practice.] [Internet]. Foundation Children’s Palliative Expertise; 2009 [cited 2022 Apr 19]. https://adoc.pub/op-weg-naar-goede-praktijken-in-de-kinderpalliatieve-zorg83aa0c3326623a24402b4f4fee614d6880888.html
Chambers L. A Guide to Children’s Palliative Care. 4th ed. Bristol: Together for Short Lives [Internet]. Together for Short Lives; 2018. https://www.togetherforshortlives.org.uk/app/uploads/2018/03/TfSL-A-Guide-to-Children%E2%80%99s-Palliative-Care-Fourth-Edition-FINAL-SINGLE-PAGES.pdf
RadboudUMC. Rights of children and youth [Internet]. [cited 2024 Jul 24]. https://www.radboudumc.nl/en/patient-care/rights-and-obligations/rights/young-people
A guide to the development of Children’s Palliative Care Services. (Third edition). Bristol: Associaton for Children with Life-Threatening or Terminal Conditions and their Families (ACT); 2009.
Kenniscentrum Kinderpalliatieve Zorg [The Dutch Centre of Expertise in Children’s Palliative Care]. Kinderpalliatieve zorg in het onderwijs [Pediatric Palliative Care in Education] [Internet]. [cited 2023 Mar 7]. https://kinderpalliatief.nl/scholing/onderwijs
Feudtner C, Feinstein JA, Satchell M, Zhao H, Kang TI. Shifting place of death among children with complex chronic conditions in the United States, 1989–2003. JAMA. 2007;297(24):2725–32.
doi: 10.1001/jama.297.24.2725
pubmed: 17595273
Centraal Bureau voor de Statistiek. Centraal Bureau voor de Statistiek. 2023 [cited 2024 Jul 18]. 3. Zorgmedewerkers. https://www.cbs.nl/nl-nl/longread/statistische-trends/2023/arbeidsmarktprofiel-van-zorg-en-welzijn-in-2022/3-zorgmedewerkers
Andrade C. The Inconvenient Truth about Convenience and Purposive Samples. Indian J Psychol Med. 2021;43(1):86–8.
doi: 10.1177/0253717620977000
pubmed: 34349313