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Trucco, Ana Paula, Mioshi, Eneida, Kishita, Naoko 
ORCID: https://orcid.org/0000-0001-8453-2714, Barry, Caroline and Backhouse, Tamara ORCID: https://orcid.org/0000-0001-8194-4174
(2023)
Navigating an emotional journey: A qualitative study of the emotional experiences of family carers currently supporting people living with motor neurone disease.
Palliative and Supportive Care.
ISSN 1478-9515
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Abstract
Background: Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers’ emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched. Objective: To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND. Methods: We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis. Results: Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. Maintaining emotional coping encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing. Significance of results: Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.
| Item Type: | Article |
|---|---|
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Arts and Humanities > Research Groups > Centre for Japanese Studies |
| Depositing User: | LivePure Connector |
| Date Deposited: | 10 Nov 2023 03:23 |
| Last Modified: | 10 Nov 2023 03:23 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/93618 |
| DOI: | 10.1017/S147895152300158X |
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