Authors' objectives: 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. To generate evidence to support evidence-informed approaches for the spiritual care of children/young people and their parents, including the role of chaplaincy. Core to our human experience is the need to make sense of and find meaning in life, to feel our lives have purpose, to feel we matter and have value and to feel connected to ourselves, others, the wider social and natural world and, for some, a sacred/transcendent being. This aspect of our humanness is collectively referred to as our spirituality. For some, religious beliefs offer a framework by which we make sense of life, achieve and express connectedness with ourselves, others and ‘God’. Our spirituality is not something we may be particularly conscious of on an everyday basis. However, people do become more conscious of their spirituality at turning points in their lives and at times of change, trauma, challenge, danger, uncertainty and crisis. Such times can challenge the values and beliefs about life, and there can be a heightened awareness of mortality. Spiritual well-being can be threatened, and spiritual distress experienced. People who are spiritually distressed describe feeling sad, afraid, desperate, vulnerable, lonely, empty, useless, guilty and helpless. They may describe existential crises and feel life is without meaning and they do not matter. It is widely accepted that the diagnosis of, and living with, a life-threatening or life-shortening condition [we collectively refer to these as life-limiting conditions (LLCs) forthwith] threatens spiritual well-being. Historically, the recognition of and attention to patients’ spirituality and spiritual needs were regarded as core to health care. However, rapid advances in medicine’s ability to treat disease caused a narrowing in the understanding of both what health care is and what constitutes health, particularly in Western countries. The past 20 or so years have, however, seen the beginning of a recalibration away from a biomedical model of health and illness to one that advocates a more holistic approach, including attention to the spiritual needs and care of patients and their families. Indeed, there is extensive evidence that people (patients and family members) need and want healthcare systems to attend to their spiritual needs. Equally strong is the evidence that such needs are frequently unmet. Spiritual care has been defined as care ‘which recognises and responds to the needs of the human spirit’, with all healthcare staff implicated as having a role to play in preventing and responding to spiritual distress. In the NHS, chaplaincy services are identified as the spiritual care specialist service and care for patients, family members and staff. With patients and families, much of that work is achieved through their ‘presence’: defined as an encounter, fleeting or more prolonged, which may include both silence and verbal exchange. It conveys a willingness to sit with a person in their suffering and, in doing so, assumes and shares the load of suffering. The approach taken is person-centred, empathetic and non-judgemental. Chaplains do not seek to provide answers but rather support sense-making by providing a space for individuals to articulate their thoughts, feelings and existential concerns. At the moment, what we understand about how having a LLC threatens the spiritual well-being of children and young people (and their parents) is limited and patchy, with much of the existing research conducted in the USA or relying on proxy informants. Equally, we know little about their spiritual support needs, where they go for comfort and support, their experiences of how NHS services respond to their spiritual needs and their experiences of chaplaincy services. The overall aim of this study was to support evidence-informed approaches for the spiritual care of children/young people with LLC, and their parents, including the role of chaplaincy services in that care. The study objectives were as follows: to describe the organisation and delivery of NHS and hospice chaplaincy services and identify differences in the nature of provision for children, parents and adult patients to investigate the equity of access to chaplaincy services for children and parents and the factors affecting access to describe the spiritual needs of children and parents, preferences regarding sources of support and their experiences of having those needs met or remain unmet to understand the differences between providing chaplaincy services to children, parents and adult patients and the implications for service provision and staff training to describe children’s and parents’ attitudes, understanding and experiences of accessing and using chaplaincy services to identify the (potential) roles of clinical teams in identifying and responding to the spiritual needs of children, young people and parents and the barriers and facilitators to these roles being fulfilled.

Authors' results and conclusions: 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. 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. Study findings are relevant to a number of different bodies and organisations as well as clinical teams and chaplaincy services. Key implications are set out below, followed by suggested priorities for future research. Implications In response to our findings that health professionals lacked an understanding of spirituality and spiritual care, or felt uncomfortable with exploring and supporting this aspect of children’s and parents’ lives, we suggest that national professional bodies specify or review the spiritual care competencies and training required at each qualification level. In doing so, we recommend that they draw on the expertise of healthcare chaplains, particularly paediatric chaplaincy. Investment in developing training resources and courses is likely to be required. This should be informed by evidence on the content and teaching approaches taken by existing training programmes and any evaluations conducted. We note, however, that much of this work is taking place in other countries, and the degree to which content and training approaches translate to the UK should be carefully considered. NHS trusts should, at minimum, adhere to the guidance published by the Chaplaincy Forum for Pastoral, Religious and Spiritual Care in Health on chaplaincy staffing ratios in paediatric and neonatal settings. We also suggest that NHS England evaluates the adequacy of these indicative staffing ratios, given the: (1) degree of spiritual distress reported, from the point of diagnosis, by children/young people and parents; (2) valued and unique roles chaplains were described to have played and that, for almost all young people and parents who took part in this research, access to such support would have been appreciated; and (3) roles chaplaincy services can play in supporting the multidisciplinary team (MDT), both the team itself and in the clinical care of the child. Furthermore, study findings identify the need for NHS trusts to review the policies and strategies they have in place with respect to workforce training, the profile of spiritual care within the organisation’s ethos, vision and objectives, and investment in the creation and maintenance of ‘faith spaces’. We also suggest national condition-specific professional bodies use the study findings to review their coverage on the spiritual needs and care of their patient group and to review any current guidance and recommendations. They may also wish to use study days and conferences to increase the profile of spirituality and spiritual care within their specialism. Our findings also support the argument for clinical and service leads of services that care for children/young people diagnosed with a LLC to consider assigning the role of ‘spirituality/spiritual care lead/champion’ to a member of the MDT, with protected time to work on developing or improving: (1) staff understanding, skills and practices; (2) reviewing systems and processes by which spiritual needs (including religious support needs) may be identified or assessed; and (2) developing relationships with the chaplaincy teams. In terms of improving access to chaplaincy services, our findings suggest chaplaincy services need to work proactively to develop relationships with clinical teams and ward staff. While recognising the constraints under which chaplaincy services are working, we recommend heads of chaplaincy services in trusts with a children’s hospital (in particular) should seek to invest time in developing relationships with the clinical teams and wards caring for children and young people with LLC. We also recommend they review the training offered or available to the team on paediatric healthcare chaplaincy. Our findings highlight three issues unique to chaplaincy in paediatric settings: (1) developmental differences (within the population and compared to adults); (2) the uniqueness of parental spiritual distress; and (3) different family dynamics and sensitivities. We would suggest that the UK Board of Healthcare Chaplaincy and chaplaincy training providers review the content of generic training programmes in terms of whether curricula sufficiently cover chaplaincy in paediatric settings, including direct work with children/young people, working with individual family members and family-centred working. In addition, providers offering specialist training in paediatric healthcare chaplaincy should review curricula in terms of coverage of the whole childhood–adolescent age range, family dynamics and family-centred ways of working. Finally, this study was the first that the National Institute for Health and Care Research (NIHR) commissioned on spiritual care and, to date, remains the only study on this topic. We suggest that NIHR should consider how they might further support developing the evidence base in this area.

Authors' methods: 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). Minority faiths are under-represented in the samples recruited to the qualitative components.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR128468

Year Published: 2025

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/ZMLF1648

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/ZMLF1648

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk