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Introduction to Research Theme: End of Life

Research on End of Life experiences of adults with intellectual disability addresses the experience of healthcare at end of life, perspectives of carers, preparing for end of life and palliative care.

Although still not as great as for the general population life expectancy for people with an intellectual disability has increased and that longevity is posing research questions both how individuals are living fulfilling lives and on how they are coping with chronic conditions, with illness and with how they are dying. As the lead research programme on end of life care for people with intellectual disabilities within the All-Ireland Institute on Palliative and Hospice Care the Centre advances research on:

  • Increasing openness among carers to discussing and preparing for death

  • Involving people with intellectual disabilities themselves, families and other carers in person-centred end of life planning and palliative care

  • The addressing of the physical, social, and psychological needs of people with intellectual disability and those who support them as they approach end of life.

This is an interdisciplinary and a cross sector research focus building relationships between intellectual disability services providers, hospice and palliative care expertise, families, carers, peers and the person with intellectual disabilities themselves.

End of Life Team