Exploring the impact on young people who are caring and grieving for a parent with motor neurone disease

Oliver Clabburn, Mary O'Brien

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Abstract

Background: Motor Neurone Disease (MND) is a terminal neurological disease. Little attention has been paid in the literature to investigating the experiences of children and young people who provide care for a parent with the disease. Aim: To explore how providing care for a parent with MND impacts upon a young person’s life. Sample: A purposive sample of seven young people who were bereaved or currently providing care for a parent with MND. Methods: A qualitative methodology with informal semi-structured interviews. Results: Five key themes were identified; initial MND diagnosis, changing family roles, implications upon education, implications upon social life and positive outcomes. Conclusion: The study suggests that young carers for a parent with MND experience substantial challenges in addition to some positive outcomes.
Original languageEnglish
Pages (from-to)243-248
JournalBritish Journal of Neuroscience Nursing
Volume11
Issue number5
Early online date27 Oct 2015
DOIs
Publication statusE-pub ahead of print - 27 Oct 2015

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Motor Neuron Disease
Caregivers
Interviews
Education

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abstract = "Background: Motor Neurone Disease (MND) is a terminal neurological disease. Little attention has been paid in the literature to investigating the experiences of children and young people who provide care for a parent with the disease. Aim: To explore how providing care for a parent with MND impacts upon a young person’s life. Sample: A purposive sample of seven young people who were bereaved or currently providing care for a parent with MND. Methods: A qualitative methodology with informal semi-structured interviews. Results: Five key themes were identified; initial MND diagnosis, changing family roles, implications upon education, implications upon social life and positive outcomes. Conclusion: The study suggests that young carers for a parent with MND experience substantial challenges in addition to some positive outcomes.",
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Exploring the impact on young people who are caring and grieving for a parent with motor neurone disease. / Clabburn, Oliver; O'Brien, Mary.

In: British Journal of Neuroscience Nursing, Vol. 11, No. 5, 27.10.2015, p. 243-248.

Research output: Contribution to journalArticle

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AB - Background: Motor Neurone Disease (MND) is a terminal neurological disease. Little attention has been paid in the literature to investigating the experiences of children and young people who provide care for a parent with the disease. Aim: To explore how providing care for a parent with MND impacts upon a young person’s life. Sample: A purposive sample of seven young people who were bereaved or currently providing care for a parent with MND. Methods: A qualitative methodology with informal semi-structured interviews. Results: Five key themes were identified; initial MND diagnosis, changing family roles, implications upon education, implications upon social life and positive outcomes. Conclusion: The study suggests that young carers for a parent with MND experience substantial challenges in addition to some positive outcomes.

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