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Communication within families about advanced pediatric cancer: A qualitative study
- Charis Stanek, Dana Garcia, Anna L. Olsavsky, Kylie N. Hill, Alexandra C. Himelhoch, Ansley E. Kenney, Lisa Humphrey, Randal Olshefski, Cynthia A. Gerhardt, Leena Nahata
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- Journal:
- Palliative & Supportive Care , First View
- Published online by Cambridge University Press:
- 27 December 2022, pp. 1-8
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- Article
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Objectives
This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.
MethodsParticipants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5–19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child’s cancer as a family.
ResultsSaturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more.
Significance of resultsAlthough both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child’s developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.
Factors associated with mental health service use among families bereaved by pediatric cancer
- Kylie N. Hill, Anna Olsavsky, Maru Barrera, Mary Jo Gilmer, Diane L. Fairclough, Terrah Foster Akard, Bruce E. Compas, Kathryn Vannatta, Cynthia A. Gerhardt
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- Journal:
- Palliative & Supportive Care / Volume 21 / Issue 5 / October 2023
- Published online by Cambridge University Press:
- 08 August 2022, pp. 829-835
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Objectives
We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families.
MethodsBereaved families (n = 85) were recruited from three children's hospitals 3–12 months after their child died of cancer. One eligible sibling (ages 8–17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist).
ResultsFifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007).
Significance of resultsAlthough few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.