The spiritual needs and care of children and young people with life-threatening or life-shortening conditions, and parents (SPARK): a mixed-method investigation.

Abstract

Background: The human experience comprises four interconnected dimensions: physical, psychological, social and spiritual. Our spirituality is evidenced in the need to make sense of and find meaning, to feel our lives have purpose, to feel we matter and to feel connected to ourselves, others, the natural world and the sacred or divine. Having a life-shortening or life-threatening condition threatens spiritual well-being and causes spiritual suffering. While health care aspires to be holistic, the evidence on meeting spiritual needs and spiritual care in healthcare settings is limited, particularly for neonatal and paediatric populations.

Objective(s): To generate evidence to support evidence-informed approaches for the spiritual care of children/young people and their parents, including the role of chaplaincy.

Design and research participants: A mixed-method, multicomponent design was used with the quantitative and qualitative data collected. There were four work packages. Work package 1: survey of chaplaincy services in the National Health Service acute trusts in England (n = 98/136). Work package 2: focus groups with National Health Service chaplains across 13 acute trusts (n = 77). Work package 3: interviews with young people (12-25 years) (n = 19) and parents (n = 62). Work package 4: focus groups with National Health Service clinical staff and allied health professionals based in services caring for children with life-threatening or life-shortening conditions (n = 48).

Results: Multiple threats to children's/young people's and parents' spiritual well-being were identified. These included struggling to make sense and find meaning in their situation; existing belief systems (or personal philosophies) found wanting, existential worries and concerns; a sense of disconnectedness from others and 'normal life'; and a lack of pleasure and joy, moral distress and feelings of insignificance and invisibility. Almost all described hiding their spiritual distress from themselves and others. At the same time, parents and young people also spoke of wishing for people on whom they could unburden themselves: either at critical moments, or to 'journey' with them. For some, chaplains had provided this care and support. Many, including those identifying themselves as not religious, described drawing comfort from religious rituals and practices (e.g. prayer and blessings). For some, a religious faith protected against spiritual distress. For others, it was regarded as irrelevant or unhelpful. All work packages revealed barriers to children's/young people's and parents' spiritual needs being met. Healthcare staff's accounts revealed a lack of understanding and an uncomfortableness with raising and exploring religious needs and spiritual distress and, for some, a mistrust of chaplaincy services. Survey findings indicated that chaplaincy services are less likely to have a routine presence in paediatric compared to adult settings. Key reasons for this were staff capacity and gatekeeping by healthcare staff.

Limitations: Minority faiths are under-represented in the samples recruited to the qualitative components.

Conclusions: Having a life-threatening or life-shortening condition brings multiple threats to the spiritual well-being and lived experiences of children/young people and their parents. There are a number of barriers to National Health Service staff recognising and responding to these needs. These include workforce training and adequate resourcing of chaplaincy services and ensuring spiritual care is integrated into care pathways.

Future work: Priority topics for future research include effective training for clinical staff on spirituality and spiritual care and integrating spiritual care into care pathways.

Study registration: This study is registered as Current Controlled Trials ISRCTN41288313.

Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128468) and is published in full in Health and Social Care Delivery Research; Vol. 13, No. 16. See the NIHR Funding and Awards website for further award information.