Project overview
BACKGROUND Around 3000 children die each year in England and Wales, and 30% of deaths represent infants and children who die unexpectedly or suddenly from accidents, suicide or unexplained deaths. Clear guidance and palliative care services exist for children who die of a life-limiting condition. However, this is not available for sudden and unexpected infant and child deaths, even though these are often the most tragic, brutal and shocking deaths. The overall aim of this study is to investigate place of death, professionals involved and experiences of families and professionals, to make recommendations to improve care. METHODS QUINTET is a mixed method investigation with four interconnected Work Packages (WPs), focused on sudden and unexpected deaths in infants and children, investigating: 1. The approaches to care for families described in the literature, and where children die 2. What care around death and bereavement is provided, and by whom, and what the experiences and needs of professionals are 3. How families experience different models and/or approaches of care, and bereaved parents' long-term outcomes Culminating in: 4. Co-creation of an addendum to the Palliative and End-of-Life Care Ambitions document; and support and training needs for professionals WP1 - Aim: Investigate what care is available for these families, which professionals are involved and where children die, through: 1) an integrative review of care available to families, parent experiences and impact on resources; and 2) analysis of existing data on child deaths from the National Child Mortality Database, to examine where children die. WP2 - Aim: Mapping of approaches to care, provided by whom, and experiences of professionals providing care and their own support needs. This WP will include: 1) qualitative interviews with Child Death Overview Panel professionals to investigate what care is provided and who it is delivered by; 2) qualitative interviews with professionals (n=30) providing care for families, investigating their own experiences and needs, and possible training needs. WP3 - Aim: Investigate experiences of families in terms of support and care around and immediately after death, and what they might have needed, as well as the long-term outcomes for parents, (mental and physical health, employment). This WP will include: 1) qualitative interviews with 50 bereaved families. Questions will focus on experiences, support needs, health outcomes, and resource implications; and 2) A national survey asking bereaved parents about prolonged grief, mental and physical well-being, financial impact and quality of care. WP4: Aim: Develop and agree an addendum to the national Ambitions document, make recommendations for future work around guidance to improve care, and gain consensus on support and training needs for professionals. Data integration using Triangulation protocol. A one-day workshop using Nominal Group Technique with stakeholders (n=50) will be used to achieve consensus. TIMELINES. The study will be conducted over 36 months, with WP1 from month 1-8, WP2 month 8-23, WP month 9-28, and WP4 month 24-36. DISSEMINATION We will produce scientific papers, develop recommendations for care and maintain a network of parents and professionals. We will create national awareness and work to influence policy and change practice. We will produce newsletters, social media posts, and result postcards to update families and the wider network.
