Parent and staff perceptions of bereavement support surrounding loss of a child

The death of a child is one of the most overwhelming and devastating experiences a parent may face and is one of the most challenging clinical situations that health professionals must traverse in providing care to the child and family. Research has tended to focus on parent or health professional perceptions of support surrounding this event rather than both. This study sought to explore both parent and health professional perceptions of bereavement support surrounding the loss of a child. The research participants were parents who had lost a child as well as the health professionals caring for the child and family around the time of the child’s death. The study location was a large tertiary paediatric hospital in Queensland, Australia. The study was underpinned by an interactional model of social support and social constructionism. Parents and health professionals were interviewed and their narratives analysed using thematic analysis. Three main themes refer to parents’ perceptions of support surrounding their child’s death: Sudden versus Expected Loss (which includes the subthemes of Sudden, Sudden despite being Expected and Expected and Images and Appearances of Dying), The Parent who Experienced the Loss (which includes subthemes of Parental role, Family Tensions and Gender Differences and Coping)and Interactions with Health Professionals (which includes the subthemes of Communication During the Child’s Illness, Privacy, Communication at the Time of Death and Organisational Issues). Three main themes refer to health professionals’ perceptions of supporting the dying child and family: The Death (which includes the subthemes of Relationship in Sudden and Expected Loss and Images and Appearance of Dying); Staff Who Support at the Experience of Loss (which includes the subthemes Staff Coping and Perceptions of Support Provision) and Interactions with Parents (which includes the subthemes Withdrawing Life Support, Differing Needs of Parents, To Stay or To Leave and Talking to the Deceased Child). The study findings point to a number of recommendations for practice including the consideration of mother, father and child needs and preferences for support, communication that conveys a valuing and respect for the dying child including post-mortem care that involves recognition of the child’s continued presence. Organisational changes are also recommended including the development of principles articulating best end-of-life care including care at particular transition points such as the move from acute to palliative care for paediatric oncology patients. Such principles would ensure improved continuity of care and familiarity of health professionals as well as enable parents to harness the support of other parents who are facing similar challenges and losses. The study also points to the importance of a relational learning approach to assist future and beginning health professionals to develop their abilities to support parents and children in end-of-life care and to learn effective coping strategies to enable them to manage the physical and psychological burden of this complex area of paediatric health care