The end-of-life trajectory in childhood cancer: Bereaved parents’ perceptions of the availability, use, and helpfulness of support services

Abstract

Background: The provision of bereavement support for parents is a recognized tenet of end of life (EoL) care, yet there is a knowledge gap concerning how and when health care providers can best provide this. To better understand bereaved parents’ perspectives, the present study examined what supportive interventions parents reported to be available, utilized, and found helpful based on their experiences at the medical institution where their child received care. They also identified the types of supportive interventions they felt were needed both before and after the death of their child and when along the cancer trajectory parents felt these services should be made available. Methods: Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey through a closed social media (Facebook) group. The survey was developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates. The survey was designed to gather retrospective reports of EoL support services offered and utilized. Descriptive information about reports of services available, services utilized, and services found to be helpful is reported. χ 2 analyses were utilized to compare availability, utilization, and helpfulness by cancer type and child's age at death. Results: One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. Most reported their care institutions to have availability of palliative care support (67.4%, n = 91), spiritual/religious support (n = 83, 61.9%), resource materials (n = 82, 60.7%), counseling for the child (n = 82, 59.0%), and advance care planning (n = 65, 50.0%). All parents who utilized assistance with food/beverages at bedside, funeral planning and legacy building found it to be helpful, with other services (ie, palliative care, advance care planning, counseling for child/family, among others) also rated as highly helpful (>75%). Most bereaved parents perceived a need for supportive interventions, particularly during the EoL experience, whereas about half reported a desire for services after the death of their child. Bereaved parents felt these services should be offered to the entire family, including the patient. Some services (eg, supportive counseling for parents, child, and siblings) were desired from diagnosis onward, whereas others (eg, advance care planning, discussions of location of death) were preferred if the disease was not responsive to treatment. Thematic analysis of open-ended responses of services that would have been helpful elicited a desire for treatment navigation, ongoing support/communication from the healthcare team, financial help, support for the child (both counseling and integrative therapies), meals, counseling (for the family and those impacted by the child's death in their community), legacy options, connection with other families, information about tissue donation, and grief support after the death of their child. Conclusions: Most bereaved parents utilized the supportive interventions provided to them by the healthcare team during their child's EoL care and reported finding them helpful. Additional services, not offered or available, were also desired, particularly during the EoL experience, and after the death of their child. These findings are consistent with guidance from evidence-based standards of care which promote early integration of palliative care and continuity of care after the death of a child. Provision of a variety of services may be beneficial to families both before and after their child's death, but additional research is needed to inform timing and how to best tailor these services to the family.

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review

“…38,39,41,42,44,46–52,54–59,61–63,65,66,68–70,72,74–78,80,82–84,86,88,90–97,99 Eleven articles report a quantitative observational study. 40,43,45,53,67,71,73,85,87,89,98 Five articles present a mixed-methods design. 60,64,79,81,100 Most stud-ies ( n = 22) were conducted in North America.…”

“…38 , 39 , 41 , 42 , 44 , 46 – 52 , 54 – 59 , 61 – 63 , 65 , 66 , 68 – 70 , 72 , 74 – 78 , 80 , 82 – 84 , 86 , 88 , 90 – 97 , 99 Eleven articles report a quantitative observational study. 40 , 43 , 45 , 53 , 67 , 71 , 73 , 85 , 87 , 89 , 98 Five articles prese...…”

“… 60 , 64 , 79 , 81 , 100 Most stud-ies ( n = 22) were conducted in North America. 39 , 40 , 42 – 45 , 63 , 64 , 67 , 70 – 72 , 77 – 79 , 81 , 83 , 88 , 89 , 91 , 97 , 98 Nineteen studies were from Asia. 38 , 41 , 46 – 49 , 58 – 60 , 69 , 73 , 74 , 76 , 82 , 86 , 87 , 94 , 96 , 99 Thirteen were from Europe.…”

“…Relatively few articles reported on the need for support with regard to religious beliefs despite being a major theme in the spiritual experience of parents. 38 , 40 , 41 , 43 , 58 , 74 , 78 , 79 , 87 , 94 A North-American survey study among parents whose children had been admitted for more than 48 h to PICU at a tertiary academic medical center 40 showed that parents’ ( n = 162, 82% Christian, 10% religious without category, 6% nonreligious and 2% other) wishes were mixed about whether their child’s physician should ask about their spiritual or religious beliefs. Parents views were divided equally between agreeing, disagreeing, and being unsure.…”

Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home

“…There have been rapid developments in pediatric palliative care, the availability of professional support, and the inclusion of the spiritual domain in national guidelines [ 11 , 12 ], partly based on the guideline “End of life care for infants, children and young people” of the British National Institute for Health and Care Excellence (NICE) [ 13 ]. Yet despite this, the scarce research in this area shows that both in the Netherlands and other countries, spiritual support in pediatric palliative care, including the involvement of chaplains or grief and bereavement counselors, is still not self-evident [ 14 , 15 ]. Indications remain that parents do not feel properly supported when dealing with the spiritual issues of parenting and caring for a severely ill child [ 3 , 16 , 17 ].…”