Exploring and addressing ‘concerns’ for significant others to extend the understanding of quality of life with motor neurone disease: a qualitative study

Ando, Hikari and Cousins, Rosanna and Young, Carolyn A. (2019) Exploring and addressing ‘concerns’ for significant others to extend the understanding of quality of life with motor neurone disease: a qualitative study. Journal of Central Nervous System Disease. ISSN 1179-5735 (Accepted for Publication)

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Abstract

Background: The absence of curative medication for amyotrophic lateral sclerosis (ALS) makes palliative care and understanding quality of life (QoL) in ALS a clinical priority. Previous qualitative research has explored the concept of QoL in terms of illness impact on life perspectives and sense of self. Objective: In this research we explored ‘concerns’ – one of the four aspects in the World Health Organization’s conceptualisation of QoL – towards adding to the literature. Methods: In-depth interviews with 26 individuals with ALS were subjected to thematic analysis involving both inductive and deductive approaches to explore participant’s concerns, and to evaluate the relevance of their concerns for understanding QoL in ALS. Findings: The analysis showed that concerns for significant others contribute to participant’s QoL because of their existential value. It was important for participants to minimise the impact of limitations and burdens associated with ALS on significant others, even at a cost to self. Discussion: The current study supports a holistic approach in service provision, ensuring the inclusion of relevant significant others. It is further suggested that clinicians explore the specifics of burdens perceived by patients in order to support them in minimising the burdens for their significant others.

Item Type: Article
Additional Information and Comments: This is the author's version of an article that was submitted to the Journal of Central Nervous System Disease. Once published, the final version will be provided here and will also be available open access from the publisher's website.
Keywords: Amyotrophic Lateral Sclerosis, qualitative method, quality of life
Faculty / Department: Faculty of Science > Psychology
Depositing User: Rosanna Cousins
Date Deposited: 03 Jun 2019 08:21
Last Modified: 03 Jun 2019 08:21
URI: http://hira.hope.ac.uk/id/eprint/2873

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