Needs and concerns of siblings in pediatric palliative care: scoping review
DOI:
https://doi.org/10.25753/BirthGrowthMJ.v30.i4.20898Keywords:
adolescent, child, emotional adjustment, palliative care, siblingAbstract
Introduction: Understanding the needs of each family member in the setting of Pediatric Palliative Care is crucial. Sibling support is still an emerging area, with recommendations based on clinical experience and adaptation from other contexts. The aim of this study was to assess and describe the needs and concerns of siblings of children in Pediatric Palliative Care.
Methods: A literature search was conducted in Medline database. Only research articles with reports of siblings of children in Palliative Care were included. The main characteristics and results of studies included were summarized, and a narrative synthesis was performed.
Results: Nine studies were included showing that, although siblings’ needs vary over the course of the disease, these generally include the need for self-support, access to information, and engagement in brother/sister care. Bereaved siblings are usually resilient, but poor-quality support can have a negative psychosocial impact.
Discussion and Conclusion: Siblings need informational, instrumental, appraisal, and emotional support. Quantitative prospective studies are needed, as well as accurate clinical practice recommendations taking into account the specificities of each child, family, and sibling.
Downloads
References
ACT. A Guide to the Development of Children’s Palliative Care Services. Bristol 2009.
Malcolm C, Gibson F, Adams S, Anderson G, Forbat L. A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study. J Child Health Care. 2014;18(3):230-40.
Jones BL, Contro N, Koch KD. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring. Pediatrics. 2014;133 Suppl 1:S8-15.
Freeman K, O’Dell C, Meola C. Childhood brain tumors: children’s and siblings’ concerns regarding the diagnosis and phase of illness. J Pediatr Oncol Nurs. 2003;20(3):133-40.
Rosenberg AR, Postier A, Osenga K, Kreicbergs U, Neville B, Dussel V, et al. Long-term psychosocial outcomes among bereaved siblings of children with cancer. J Pain Symptom Manage. 2015;49(1):55-65.
Gaab EM, Owens GR, MacLeod RD. Siblings caring for and about pediatric palliative care patients. J Palliat Med. 2014;17(1):62-7.
Alderfer MA, Long KA, Lown EA, Marsland A, Ostrowski NL, Hock JM, et al. Psychosocial adjustment of siblings of children with cancer: a systematic review. Psychooncology. 2010;19(8):789-805.
Sharpe D, Rossiter L. Siblings of Children With a Chronic Illness: A Meta-Analysis. Journal of Pediatric Psychology. 2002;27(8):699-710.
Arksey H, O’Malley L. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology. 2005;8(1):19-32.
Peters MD, Godfrey CM, Khalil H, McInerney P, Parker D, Soares CB. Guidance for conducting systematic scoping reviews. Int J Evid Based Healthc. 2015;13(3):141-6.
Lovgren M, Bylund-Grenklo T, Jalmsell L, Wallin AE, Kreicbergs U. Bereaved Siblings’ Advice to Health Care Professionals Working With Children With Cancer and Their Families. J Pediatr Oncol Nurs. 2016;33(4):297-305.
Wallin AE, Udo C, Kreicbergs U, Lovgren M. Cancer-bereaved siblings’ advice to peers - A nationwide follow-up survey. Death Stud. 2020;44(9):561-8.
Lovgren M, Udo C, Alvariza A, Kreicbergs U. Much is left unspoken: Self-reports from families in pediatric oncology. Pediatr Blood Cancer. 2020;67(12):e28735.
Lovgren M, Sveen J, Nyberg T, Wallin AE, Prigerson HG, Steineck G, et al. Care at End of Life Influences Grief: A Nationwide Long-Term Follow-Up among Young Adults Who Lost a Brother or Sister to Childhood Cancer. J Palliat Med. 2018;21(2):156-62.
Eilertsen MB, Lovgren M, Wallin AE, Kreicbergs U. Cancer-bereaved siblings’ positive and negative memories and experiences of illness and death: A nationwide follow-up. Palliat Support Care. 2018;16(4):406-13.
Spinetta JJ, Jankovic M, Eden T, Gren D, Martins AG, Wandzura C, et al. Guidelines for assistance to siblings of children with cancer: Report of the SIOP working committee on psychosocial issues in pediatric oncology. Medical and Pediatric Oncology. 1999;33(4):395-8.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2021 Filipa Martins Silva
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Copyright and access
This journal offers immediate free access to its content, following the principle that providing free scientific knowledge to the public provides greater global democratization of knowledge.
The works are licensed under a Creative Commons Attribution Non-commercial 4.0 International license.
Nascer e Crescer – Birth and Growth Medical Journal do not charge any submission or processing fee to the articles submitted.
