Factors associated with mental health service use among families bereaved by pediatric cancer
child; Bereavement; article; controlled study; female; human; major clinical study; male; palliative therapy; education; sibling; Mental Health Services; bereavement; cooperation; distress syndrome; randomized controlled trial; health care personnel; self report; multicenter study; race; mother; home visit; malignant neoplasm; demography; father; support group; self help; educational status; mental health service; Child Behavior Checklist
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. METHOD(S): Bereaved 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). RESULT(S): Fifty 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 RESULTS: Although 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.
Hill KN; Olsavsky A; Barrera M; Gilmer MJ; Fairclough DL; Akard TF; Compas BE; Vannatta K; Gerhardt CA
Palliative and Supportive Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener">10.1017/S1478951522001018</a>
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Pediatric Blood and Cancer
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</a>
Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study
article; bereavement support; child; China; comfort; controlled study; death education; hematology; human; palliative therapy; pediatrics; qualitative research; religion; spiritual care; support group; terminally ill patient
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents. Results: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents’ spiritual needs. Parents’ spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism. Conclusion: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient’s personal belief in death should be assessed before discussing death with them.
Cai S; Guo Q; Luo Y; Zhou Y; Abbas A; Zhou X; Peng X
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319896747" target="_blank" rel="noreferrer noopener">10.1177/0269216319896747</a>
Legacy Artwork in Pediatric Oncology: The Impact on Bereaved Caregivers' Psychological Functioning and Grief
adolescent; adult; article; bereavement; Brief Symptom Inventory; Caregiver; child; childhood cancer; clinical article; complicated grief; controlled study; female; grief; health care personnel; human; infant; male; mental function; perception; prolonged grief; questionnaire; support group; time of death
Background: Legacy-making (i.e., a way for patients with terminal illness to create or do something for others as a means of remembrance) is rising in popularity in palliative medicine, although only one study has examined its impact in a pediatric population.
Schaefer M R; Spencer S K; Barnett M; Reynolds N C; Madan-Swain A
Journal of Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2018.0329" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0329</a>