Psychosocial Support Around Death, Dying, and Grief for Children with Intellectual Disabilities in Pediatric Palliative Care : An Empirical Study

Abstract: Many children with life-limiting health conditions in pediatric palliative care have cognitive impairments or intellectual disabilities (ID). They are confronted with their own death and need adapted psychosocial support. The assumption that children with ID might not understand death and dying can lead to limited support. Little is known about psychosocial support in pediatric palliative care around death, dying, and grief for this population. The study aimed to capture professionals' experiences in supporting children with ID in pediatric palliative care around topics of death, dying, and grief. Seven professionals who worked in pediatric palliative care in Germany were interviewed utilizing a qualitative research approach with semi-structured interviews. Inductive thematic analysis was used, and three major themes were identified: Communication about death and dying involves both verbal and non-verbal means, Child-centered interventions are employed to enhance the child's well-being, and Personal factors of involved individuals influence the support provision. The provided support was highly individualized to children's needs. Communication difficulties were identified as a challenge for professionals when providing psychosocial support for children with ID. Children's health condition and functioning, parents' beliefs, and professionals' attitudes towards ID and uncertainty about children's needs were identified as crucial factors influencing support provision for children with ID. The need for further research was highlighted.