Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study

Abstract

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.

What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

“…Tools such as the Carer Support Needs Assessment Tool (CSNAT) can be used to identify specific carer support needs [25][26][27], and could enrich the quality of information on referral. Spiritual needs, in the broadest sense, were rarely documented, despite being important for patients and their families [28][29][30][31]. This may be due partly to the inclusion of an explicit section about spiritual support needs on some but not all referral form templates.…”

Parental bereavement – impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review

“…Understanding these states is critical to the provision of effective support, since there is no consistency as to how religious affiliations across cultures impact grief in parents. For instance, South American families reported that their spirituality [95] was compromised by evangelical family and/or friends [96] whilst self-reported nonreligious participants in Beijing found religious mores a source of support that enhanced spirituality [97]. Similarly, whilst Hedayat [98] suggested that in Muslim societies the death of a child a reinforced their religious faith [92], some bereaved parents believed that their child's death was a punishment from a Higher Power [89,99,100] and turned their disappointment inward and or towards the Higher Power [99].…”

“…This is underlined by the knowledge that factors previously deemed supportive to coping and meaning-making may turn into risk factors and vice versa. With Knapp and Contro [ 95 ], Jonas, Scanlon [ 96 ], van der Geest, van den Heuvel-Eibrink [ 151 ] and Cai, Guo [ 97 ] highlighting the interchangeability of factors listed in either column in Table 3 , data here suggests that the RToP’s ability to capture such change ought to be used in the training of healthcare professionals so that they are better able to respond appropriately to each individual parent’s bereavement needs [ 27 – 30 , 33 , 34 , 195 ]. Addressing change in the rings of the RToP foregrounds the import of timely [ 57 ] and context sensitive [ 7 ] assessments of parental coping [ 25 , 89 , 196 , 197 ] and careful involvement of various members of the bereaved parents’ friends, relatives and community.…”

What Makes Palliative Care Needs “Complex”?: A Multisite Sequential Explanatory Mixed Methods Study of Patients Referred to Specialist Palliative Care

“…Spiritual needs, in the broadest sense, were rarely documented, despite being important for patients and their families. [23][24][25][26] An indication of the importance of spiritual support for the terminally ill person at the time of referral, might usefully ensure that the person is directed towards the hospice service(s) most aligned with their needs.…”