The SPARK Project examines the best way to deliver pastoral, spiritual and religious care to children with life limiting illnesses and their families. Helen & Douglas House were involved in recruiting families pre- and post-bereavement to take part, as well as supporting focus groups. At the moment, we know very little about how to meet the pastoral, spiritual and religious needs of children and young people diagnosed with a life-threatening or life-shortening condition, and their parents.
This study was done over 3 years from August 2020, to March 2023. The study involved focus groups and interviews with care givers, children and healthcare professionals to better understand their practices, needs and views.The aim of this study was to gather evidence the NHS and children’s hospices can use to guide how they meet these needs, including the role of chaplaincy services (sometimes called pastoral and spiritual care services). It will also explore how chaplaincy services can support clinical and care teams involved in the care of these children and young people.
The conclusion from this study was that having a life-shortening or life-threatening conditions brings multiple threats to the spiritual wellbeing and lived experiences of children and young people and their families. It demonstrated the need for more training in this area particularly in the NHS. From this study, it’s recognised that spirituality and spiritual care needs to be part of a child’s care pathway.