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

Abstract

Objective To determine how to improve care for families by obtaining their advice to healthcare providers and researchers after a child’s death from cancer. Design Families with a surviving sibling (ages 8-17) were recruited from cancer registries at three hospitals in the United States and Canada 3-12 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, as well as (e) offering praise. Interwoven within the five 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.

Compassion in healthcare: a concept analysis

“…Compassionate behaviours included: being provided with clear, non-jargon, individualpatient-tailored information, being given time and the opportunity to ask questions, not being spoken over, the professionals asking questions of them about their preferences and level of understanding [33,[35][36][37][38][39][40][41][42][43]. The tone of voice and the language used was of particular importance in a professional's ability to portray compassion due to the effects of an imbalance of power between the health professional and the patient [32,44].…”

Caring for Pediatric Patients’ Families at the Child’s End of Life

“…16,19,27,48,62 An important aspect is obtaining parental permission and respecting parental preferences about end-of-life communication while providing the siblings with honest, accurate information. 8,10,60,62 Dialogue with siblings should be congruent with the siblings' age and developmental level, and not euphemistic or metaphoric. 42,48,59,60 Supporting the Family After the Child's Death Nurses may feel awkward and unsure about to how to support a family once a child has died.…”

“…8,10,60,62 Dialogue with siblings should be congruent with the siblings' age and developmental level, and not euphemistic or metaphoric. 42,48,59,60 Supporting the Family After the Child's Death Nurses may feel awkward and unsure about to how to support a family once a child has died. A nurse can begin with a condolence, an acknowledgment of suffering.…”

“…25,58 Strategies to optimize communication with families must include special consideration of a patient's siblings, who are markedly affected by the critical illness and death of their brother or sister. 19,30,[59][60][61] In a study by Steele et al, 60 siblings 8 to 17 years old who had a brother or sister die of cancer expressed their desire to be included in conversations and involved in the endof-life experience. 60 Youngblut et al 61 sought parents' perspectives of surviving siblings' needs.…”

“…19,30,[59][60][61] In a study by Steele et al, 60 siblings 8 to 17 years old who had a brother or sister die of cancer expressed their desire to be included in conversations and involved in the endof-life experience. 60 Youngblut et al 61 sought parents' perspectives of surviving siblings' needs. The results indicated that siblings felt they did not have enough time to be with the dying child and/or say goodbye.…”