Bereaved Parents and Siblings Offer Advice to Health Care Providers and Researchers

Steele, Amii C.; Kaal, Julia; Thompson, Amanda L.; Barrera, Maru; Compas, Bruce E.; Davies, Betty; Fairclough, Diane L.; Foster, Terrah L.; Jo Gilmer, Mary; Hogan, Nancy; Vannatta, Kathryn; Gerhardt, Cynthia A.

doi:10.1097/mph.0b013e31828afe05

Cited by 73Palliative and Oncologic CarePalliative Care and End-of-Life IssuesGrief, Bereavement, and Mental Health

Bereaved Parents and Siblings Offer Advice to Health Care Providers and Researchers

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Steele, Amii C., Kaal, Julia, Thompson, Amanda L., Barrera, Maru, Compas, Bruce E., Davies, Betty, Fairclough, Diane L., Foster, Terrah L. +4 more·2013·Journal of Pediatric Hematology/Oncology

DOI 10.1097/mph.0b013e31828afe05PMC PMC3635497

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Abstract

OBJECTIVE: To determine how to improve care for families by obtaining their advice to health care providers and researchers after a child's death from cancer. DESIGN: Families with a surviving sibling (age, 8 to 17 y) were recruited from cancer registries at 3 hospitals in the United States and Canada 3 to 12 months (M=10.4, SD=3.5) after the child's death. SETTING: Data were collected in the home. PARTICIPANTS: Participants (N=99) included 36 mothers, 24 fathers, and 39 siblings from 40 families. OUTCOME MEASURES: Each participant completed a qualitative interview that was audio recorded, transcribed, and coded for thematic content. FINDINGS: Five major themes included the need for: (a) improved communication with the medical team, (b) more compassionate care, (c) increased access to resources, (d) ongoing research, and (e) offering praise. Interwoven within the 5 themes was a subtheme of continuity of care. CONCLUSIONS: Many participants were pleased with the care the child with cancer received, but others noted areas in need of improvement, particularly medical communication and continuity of care. Additional research is needed to inform interventions to improve services for families of children with life-limiting conditions.

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Siblings of children with cancer's psychosocial distress persists during their sibling's cancer diagnosis or treatment, especially after bereavement.
“as the SCCs' psychosocial distress persists during their sibling's cancer diagnosis or treatment, especially after bereavement.”
From Psychosocial interventions for siblings of children with cancer: A mixed methods systematic review (2021) · cites this paper as [40]
The Discussion reports that families wanted emotional support throughout the child’s illness and after death, and the Findings (Resources) include a sibling’s request for a teen support group. These passages support a need for support during illness and bereavement, but the paper does not establish that siblings’ psychosocial distress persists across those periods or is especially pronounced after bereavement. No page numbers are available in our copy. (LLM, conf=0.83)
Experimental — accuracy not yet measured
Around half of cancer-bereaved siblings still grieved 2 to 9 years after their loss.
“Around half of cancer‐bereaved siblings still grieved 2 to 9 years after their loss40”
From Psychosocial interventions for siblings of children with cancer: A mixed methods systematic review (2021) · cites this paper as [40]
The Method and Participants sections describe interviews conducted an average of 10.4 months after the child’s death, with a range of 6–19 months. A search for grief persisting in roughly half of siblings 2–9 years after the loss found no passage in our copy reporting that proportion or timeframe. (LLM, conf=0.76)
Experimental — accuracy not yet measured

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[38]Heller KS Solomon MZ Continuity of care and caring: What matters most to parents of children with life-threatening conditions Journal of Pediatric Nursing 2005 20 335 346 16182093

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Self-citation

Authors: Steele, A. C., Kaal, J., Thompson, A. L., Barrera, M., Compas, B. E., Davies, B., Fairclough, D. L., Foster, T. L., Jo Gilmer, M., Hogan, N., Vannatta, K., & Gerhardt, C. A.
Affiliations: Nationwide Children's Hospital (US)
Children's National (US)
Hospital for Sick Children (CA)
Vanderbilt University (US)
University of California, San Francisco (US)
University of Colorado Denver (US)
Corresponding author: Steele, Amii C.
Hogan, Nancy
Vannatta, Kathryn
Gerhardt, Cynthia A.
ORCID: Thompson, Amanda L.
Barrera, Maru
Compas, Bruce E.
Davies, Betty
Vannatta, Kathryn
Gerhardt, Cynthia A.
Venue: Journal of Pediatric Hematology/Oncology
Publisher: Ovid Technologies (Wolters Kluwer Health)
Published: 2013-05
Volume: 35
Issue: 4
Pages: 253-259
ISSN: 1077-4114 (ISSN-L)
DOI: 10.1097/mph.0b013e31828afe05
PMC: PMC3635497
OpenAlex: W2134717174
Cited by: 73
References: 46
Citations by year: 2025: 4 · 2024: 6 · 2023: 2 · 2022: 6 · 2021: 11 · 2020: 2 · 2019: 7 · 2018: 8 · 2017: 10 · 2016: 4 · 2015: 6 · 2014: 5 · 2013: 2
FWCI: 5.72
Type: journal article
Language: en
Open access: green
www.ncbi.nlm.nih.gov
Locations: Journal of Pediatric Hematology/Oncology (publishedVersion)
PubMed (publishedVersion)
Europe PMC (PubMed Central) (acceptedVersion)
PubMed Central (acceptedVersion)
Funders: National Cancer Institute (R01CA098217)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
Keywords: childhood cancer, bereaved parents, family caregivers, family-centered care, physician-family communication, compassionate care, continuity of care, access to resources, pediatric oncology, healthcare quality improvement
MeSH terms: Adolescent, Adult, Bereavement, Child, Communication, Empathy, Female, Health Personnel, Humans, Longitudinal Studies, Male, Neoplasms, Parents, Patient Satisfaction, Siblings

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