Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care
Abstract
Context Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that enhance child and family health. Objectives Explore and describe the family-level impact of pediatric serious illness. Methods We conducted a librarian-assisted scoping review using Arskey and O'Malley's approach. We searched PubMed, Scopus, CINAHL, and EMBASE databases for empirical publications from 2016 to 2021 that focused on families navigating serious pediatric illness published in English. Two reviewers assessed eligibility, with discrepancies resolved by a third. We used Covidence and REDCap for data management and extraction. Results We screened 10,983 abstracts; 309 abstracts were included in full text screening. The final group of 52 citations was analyzed by the entire team. Most research was conducted in Western Europe and North America. The perspectives of parents of children with cancer were most frequently described; voices of seriously ill youth and their siblings were less often presented. Most of the research was descriptive qualitative, followed by descriptive quantitative. Few studies were mixed methods, inferential, or interpretive. Studies most often described parent, youth, and family experience with illness and less often explored family processes and relationships. Irrespective of the approach (i.e…
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A limitation was that the study was quite homogenous in that most participants were white British.
“A limitation of our study was that it was quite homogenous in that most participants were white British, highlighting the need for further research involving other ethnic and population groups who may experience different or additional emotional challenges, and to specifically inform family‐integrative interventions that respond to the needs of diverse families (Broden et al., 2024).”
From "I don't grieve as much as I used to": A qualitative study on parents of children with rare and undiagnosed conditions navigating grief in the context of uncertainty. (2025) · cites this paper as Broden et al., 2024
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Martinsen, L. J., Steindal, S. A., Holmen, H., & Winger, A. (2025) · BMC Palliative Care · doi:10.1186/s12904-025-01881-5 · Cited by 6 · see citing works
Ananth, P. J., & Snaman, J. M. (2024) · Journal of Clinical Oncology · doi:10.1200/jco-24-01944 · Cited by 3 · see citing works
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“…British, highlighting the need for further research involv - ing other ethnic and population groups who may experience different or additional emotional challenges, and to specifically inform family-integrative interventions that respond to the needs of diverse families (Broden et al., 2024 ).”
Ivéus, K., Holm, M., Årestedt, K., Kreicbergs, U., Anmyr, L., Udo, C., & Lövgren, M. (2026) · Children · doi:10.3390/children13040471 · Cited by 1 · see citing works
“By engaging the entire family, the intervention addresses complex relational and emotional dynamics, enhancing its relevance and potential impact [47].”
What Pediatric Palliative Care Offers to Pediatric Surgeons.
Halix, S. J., Porter, A. S., Robbins, A. J., VanHouwelingen, L., Antiel, R. M., Le, H., Baertschiger, R., & Cameron, D. B. (2024) · Journal of Pediatric Surgery · doi:10.1016/j.jpedsurg.2024.162127 · Cited by 1
Supporting Everyday Life: Family Needs in Home-Based Pediatric Palliative Care — A Qualitative Study
Başal, M., & Erol, M. (2025) · Journal of Integrative Nursing and Palliative Care · doi:10.51847/70qzcetl8q
- Authors
- Broden, E. G., Boyden, J. Y., Keller, S., James, R., & Mooney-Doyle, K.
- Affiliations
- Yale University (US)
- University of Pennsylvania (US)
- Children's National (US)
- Nemours Children's Health System (US)
- Corresponding author
- Broden, Elizabeth G.
- Venue
- Journal of Pain and Symptom Management
- Publisher
- Elsevier BV
- Published
- 2024-10
- Volume
- 68
- Issue
- 4
- Pages
- e254-e279
- ISSN
- 0885-3924 (ISSN-L)
- OpenAlex
- W4400438754
- Cited by
- 6
- References
- 0
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 2
- FWCI
- 0.53
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Pain and Symptom Management (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- pediatric palliative care, family science, family intervention, family impact, parental attitudes, childhood cancer, family processes, health equity, research priorities
- MeSH terms
- Child, Family, Humans, Palliative Care, Pediatrics
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