Preserving self in the face of death and dying: a grounded theory of end-of-life care needs of people with intellectual disabilities

INTRODUCTION There is evidence to show that people with intellectual disabilities receive poor and inconsistent care at end of life, and that inclusion of people with intellectual disabilities in research to shape their health care delivery is sporadic. Therefore, this study is concerned with exploring the end-of-life care needs of people with intellectual disabilities from their perspectives and family members. AIMS AND OBJECTIVES The aim of this study was to explore the needs of people with intellectual disabilities at the end of life and to develop a substantive grounded theory that explains these care needs. The objectives were 1) to explore attitudes, perceptions and preferences of people with intellectual disabilities about their end-of-life care needs, 2) to explore perceptions and experiences of family members about the end-of-life care needs of people with intellectual disabilities and 3) to develop a model of service delivery for people with intellectual disabilities at the end of life. METHODOLOGY Using a constructivist grounded theory, 19 in-depth interviews, including 11 participants with intellectual disabilities and 8 family members, were conducted. The data were systematically analysed by using constant comparative methods to produce findings that are grounded in participants’ data. FINDINGS These findings suggest that people with intellectual disabilities require holistic care at the time of dying, including physical, social and spiritual care. Dependency at the time of dying is an issue for many people with intellectual disabilities as they suspect that their individuality and dignity might be compromised. They also believe that familiarity at end of life would ensure their safety and comfort and improve their quality of life and quality of care. In addition, they value the importance of disclosure, of their disease prognosis, and plan of care, because this helps them to let other people know about their wishes and preferences. Finally, they want to have their spiritual needs met, which many feel would allow their souls to rest in peace. CONCLUSION Based on findings that were grounded in the data, a care delivery model has been developed to meet the end-of-life care needs of people with intellectual disabilities. At a time when many people with intellectual disabilities suffer from life-limiting illnesses and receive inconsistent and inadequate service, this study is both timely and necessary