• To acknowledge that there is a growing number of people with intellectual disabilities who need end of life care
• To be aware of the value of developing an advance care plan with people with intellectual disabilities to identify their likes, dislikes, routines and needs
• To recognise the importance of supporting people with intellectual disabilities to receive end of life care from people they are familiar with in a place of their choosing
Background There has been a significant increase in the life expectancy of people with intellectual disabilities. As a result, they experience life-limiting chronic conditions that require end of life care. Understanding their needs is paramount to providing exemplary end of life care.
Aim To explore the importance of maintaining familiarity for people with intellectual disabilities at the end of life.
Method A constructivist version of the grounded theory approach was adopted. Individual face-to-face, semi-structured interviews were conducted with 11 adults with intellectual disabilities. The data were analysed using the constant comparative method.
Findings Maintaining familiarity at the end of life was essential to provide safety and comfort for people with intellectual disabilities. They wished to preserve their everyday routines and be cared for at their usual residence by familiar carers.
Conclusion People with intellectual disabilities wish to receive end of life care at their usual residence from people they know. Therefore, service providers must consider appropriate strategies to accommodate their needs and wishes.
Learning Disability Practice. doi: 10.7748/ldp.2022.e2190Peer review
This article has been subject to external double-blind peer review and checked for plagiarism using automated software
Cithambaram K, Duffy M, Courtney E (2022) Preserving familiarity: the care needs of people with intellectual disabilities at the end of life. Learning Disability Practice. doi: 10.7748/ldp.2022.e2190
Published online: 11 August 2022
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