Title: Supporting the complete care of children and young people with life-threatening or life-shortening conditions: a mixed-method study of pastoral, spiritual and religious needs and support, and the role of chaplaincy services (The SPARK Project)
Funder: Department of Health and Social Care

Abstract: STUDY AIMS: To gather evidence the NHS and children’s hospices can use to inform the provision and practices of chaplaincy services for children facing end of life, and their parents. It will also establish if families have the same access to chaplaincy services as adult patients, and whether certain groups are more likely to have unmet needs for spiritual care and support._x000D_ _x000D_ BACKGROUND: Having a life-limiting condition, facing death and experiencing loss are extremely challenging experiences. They raise troubling questions in people’s minds about themselves and the meaning of life as they try to make sense of what is happening. Having the chance to explore these thoughts and feelings, to feel valued and supported emotionally are core elements of spiritual care. For some, support to practice religious beliefs are important to coping. Leaving such needs unmet causes additional suffering. Yet we know these needs are likely to remain unmet. National guidance on end of life care for children has said services should ensure such needs are addressed._x000D_ _x000D_ In the NHS, chaplaincy is defined as the main provider of pastoral and spiritual care and religious support. This emphasis on pastoral and spiritual care highlights important changes which have taken place in chaplaincy services. It reflects the fact that anyone, religious or not, may have spiritual and pastoral needs._x000D_ _x000D_ Despite their key and unique role, we know little about chaplaincy services. Evidence relevant to informing provision of chaplaincy services to children facing end of life is also sparse. This gap in evidence is critical. There are unique issues associated with meeting the spiritual needs of this population including: the very untimely nature of the death of a child, developmental differences in spirituality, and generational differences in spiritual expression and practice of formal religion._x000D_ _x000D_ DESIGN & METHODS: The study is made up of four connected elements:_x000D_ 1. A survey of heads of chaplaincy services will describe their characteristics, ways of working, and compare provision for adult patients, parents and children._x000D_ 2. Focus groups with chaplaincy staff will identify their views on the differences between caring for children, parents and adult patients, the unique needs of families, and barriers to meeting the spiritual care and support needs of families._x000D_ 3. Interviews with children, young people and parents (representing the different groups facing end of life) will explore their spiritual needs, sources of support, understanding of chaplaincy services and experiences of using them. _x000D_ 4. Focus groups with doctors & nurses will investigate their understanding of the spiritual needs of families, whether and how they identify and respond to such needs, including use of chaplaincy services._x000D_ _x000D_ PATIENT & PUBLIC INVOLVEMENT: This study arises directly from what young people told us was their top research priority. They wanted research on how to meet their and their parents’ needs, particularly spiritual and religious, arising from facing death and bereavement. During the project we will meet regularly with Parent and Young People Advisory Panels; they will also support dissemination._x000D_ _x000D_ DISSEMINATION: We will work with national organisations (representing chaplains, doctors, nurses, families) to develop meaningful and useful outputs. We will use different media to share findings in ways that help people reflect on the implications for their profession and own practice.

Lay abstract: Research questions:_x000D_ What are the pastoral, spiritual and religious care needs of children and young people (and their parents) with life-threatening and life-shortening conditions (and their parents), and who may be facing end of life? What are the roles of chaplaincy services in meeting these needs?_x000D_ _x000D_ Background:_x000D_ A life-shortening or life-threatening condition brings significant and unavoidable challenges. Meeting spiritual needs is a core element of palliative care and responds to the fact that people facing end of life find themselves needing to interpret, make sense of, and find meaning in what is happening to them and, perhaps, resolve things that have happened in their lives. Some people seek, or draw on, religious, faith or spiritual beliefs as sources of hope or strength, or to assist decision-making. Whilst typically a positive resource, such beliefs may create dilemmas and raise critical questions Failing to address such needs increases suffering. _x000D_ _x000D_ In the NHS, chaplaincy services are designated the primary provider of pastoral, spiritual and religious care to patients and staff. Such services no longer require their staff to have a religious affiliation. Existing evidence supports the person-centred, relational approach taken by chaplaincy services. Chaplains may also support clinical teams to identify and respond to such needs._x000D_ _x000D_ We know that, among children and young people with life-threatening and life-shortening conditions, spiritual issues are a key concern but typically remain unmet. The untimely nature of death, generational differences in religious beliefs, and developmental changes in how spirituality is experienced and expressed are unique issues to this population. However, much existing research is North American with many groups not represented. The evidence base on chaplaincy for this population is extremely limited._x000D_ _x000D_ NICE guidance on end of life care of children and young people stipulates that spiritual needs should be addressed. However, it noted a lack of evidence, and made research on spiritual care and chaplaincy one its top priorities._x000D_ _x000D_ The study's definition of 'facing end of life':_x000D_ This project sits within NIHR commissioned call on end of life care. It defined end of life as “people who are likely to die within 12 months”. This is challenging to apply in the paediatric population. Many life-threatening/shortening conditions diagnosed in childhood do not have predictable trajectories, and some will survive. In addition, spiritual needs associated with end of life may well arise (and need attending to) earlier in disease trajectory (e.g. at diagnosis, time of significant medical intervention, significant evidence of deterioration). For these reasons, for this study, children and young people ‘facing end of life’ will be defined as_x000D_ • children and young people who are ‘actively’ dying;_x000D_ • children and young people definitively known to be at end stage (e.g. active treatment/management has been withdrawn, palliative care only);_x000D_ • children and young people, based on their diagnosis and/or trajectory of their condition, may die within the next twelve months._x000D_ _x000D_ Study aim:_x000D_ To support evidence-informed change and practice in the provision of pastoral and spiritual care, and religious support, by chaplaincy, and other health/care professionals, to children and young people, and parents, facing end of life._x000D_ _x000D_ Study objectives:_x000D_ • To describe the organisation & delivery of NHs and hospice chaplaincy services, and identify differences in the nature of provision for children, parents and adult patients._x000D_ • To investigate issues of equity of access to chaplaincy services for children and parents, and factors affecting access. _x000D_ • To describe the pastoral, spiritual and religious support needs of children, young people and parents, experiences of having those needs met or remain unmet, and actual and preferred sources of support._x000D_ • To understand the differences between providing chaplaincy services to children, parents and adult patients, and the implications for service provision and staff training._x000D_ • To describe children’s and parents’ understanding and experiences of accessing and using chaplaincy services._x000D_ • To identify the (potential) roles of clinical teams in identifying and responding to spiritual needs of children, young people and families, and the factors affecting these roles being fulfilled._x000D_ _x000D_ Overview of design:_x000D_ The study comprises primary research, organised into four workpackages (WP). WP1 precedes WP2-4 which run concurrently. We will triangulate a number of different sources of data to address our research questions. The design of the study avoids the need for the direct involvement of children and young people who are dying. WPs are as follows:_x000D_ WP1: a survey of NHS and children’s hospice chaplaincy services will describe current provision of chaplaincy services for children and young people, and their parents, within acute NHS trusts and children’s hospices, and compare this to provision for adult patients and their families. _x000D_ WP2: focus groups with chaplaincy staff will generate qualitative evidence on chaplaincy staff’s views and experiences of the spiritual needs of children and young people facing end of life, their parents and the staff involved in their care, and the ways chaplaincy meets those needs._x000D_ WP3: interviews with children and parents will explore pastoral, spiritual and religious care and support needs, sources of support, and experiences of accessing and using spiritual care within NHS or children’s hospice settings, including chaplaincy services._x000D_ WP4: focus groups with clinical team/care team staff will generate qualitative evidence on: clinical teams’ understanding, awareness and use of chaplaincy services, and their perceived impacts; their observations of the spiritual needs of patients, and their parents; and their roles (perceived or actual) in identifying and responding to these needs._x000D_ _x000D_ Timelines for delivery:_x000D_ Study duration is 26 months. _x000D_ _x000D_ Anticipated impact & dissemination:_x000D_ Multi-media resources will increase understanding among clinical teams, and NHS management, of the spiritual needs in this population and chaplaincy services, and support evaluation of current provision. Working with national bodies, findings will inform revisions, or support implementation, of national clinical guidance, strategic planning for chaplaincy, and workforce development. An audio-visual resource for families will be created.

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE