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Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

Published online by Cambridge University Press:  03 November 2020

Laurie McKibben Open the ORCID record for Laurie McKibben [Opens in a new window] ,
Kevin Brazil ,
Dorry McLaughlin  and
Peter Hudson
Laurie McKibben*
Affiliation:
School of Nursing & Midwifery, Queen's University Belfast, Belfast, UK
Kevin Brazil
Affiliation:
School of Nursing & Midwifery, Queen's University Belfast, Belfast, UK
Dorry McLaughlin
Affiliation:
School of Nursing & Midwifery, Queen's University Belfast, Belfast, UK
Peter Hudson
Affiliation:
Centre for Palliative Care, St Vincent's Hospital and the University of Melbourne, Melbourne, Australia
*
Author for correspondence: Laurie McKibben, School of Nursing & Midwifery, Queen's University Belfast, Belfast, UK. E-mail: [email protected]
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Abstract

Objectives

People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care.

Methods

A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals’ (n = 28) perceptions of informational needs were explored within focus groups (n = 6).

Results

Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model.

Significance of results

New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

Keywords

Family caregiversInformation needsIntellectual disabilityPalliative careQualitative study
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 4 , August 2021 , pp. 405 - 414
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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