Background People with intellectual disabilities are living longer and suffering from the same life limiting illness as general population. The changing needs and care demands of this group force service providers and professionals to better equip themselves to respond and attend to the specific health needs of this group. In the caring process service providers often forget to hear, listen to and include the voices of this vulnerable population which can lead to people with intellectual disabilities receiving inconsistent and inappropriate end-of-life care.
Aim To explore the end-of-life care needs of people with intellectual disabilities and develop a model of service delivery.
Objectives 1. To explore attitudes, perceptions and preferences of people with intellectual disabilities about end-of-life care. 2. To explore perceptions and experiences of family members of people with intellectual disabilities about end-of-life care needs of people with intellectual disabilities. 3. To develop a model of service delivery for people with intellectual disabilities at the end of life.
Methodology The study was conducted in an intellectual disability service that provide residential and community service to adult with intellectual disabilities. Constructivist version of Grounded Theory Methodology was adopted. Ethical permission was obtained from the academic institution and service to carry out the study. All consenting participants (17) were interviewed between 45-60 minutes. Data were analysed using Constant comparative method.
Findings The data revealed how the participants wanted to be cared at the time of dying and after death. The participants’ main concerns are revealed from the data are Holism and Familiarism which explain the care needs at the time of dying and Respectivism which explains the care requirement after death. A core category of Continum and Ultimatum was constructed.
Conclusion and Implication The findings from this study will help to develop a model of service to meet the needs of people with intellectual disabilities at the end of life.
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