Understanding family experiences of inherited motor neurone disease (MND)- a qualitative study based on interviews with people currently affected by inherited forms of MND, people at risk, and family members.
Motor Neurone Disease (MND) refers to a group of adult-onset neurodegenerative conditions. It is currently estimated that up to 10% of cases of MND are inherited. Whilst scientists are discovering more and more about inherited MND, and some people can be tested for particular genetic variants to find out the cause of their disease or whether they are at risk of developing MND in the future, a lot remains unknown.
This research investigates the experiences of people diagnosed with an inherited form of MND, those who may be at risk of developing it in the future, and other family members. It explores experiences of living with genetic risk and the impact this has across different aspects of people’s lives and decisions. It looks at how families navigate issues including genetic testing, reproductive choices, caring roles, and communication around inherited MND. It also seeks to understand how families deal with genetic information and what kinds of support and information would be useful to them.
This research uses a range of qualitative methods:
- Literature reviews of qualitative, social scientific research on: experiences of MND; experiences of inherited MND; and experiences of Huntington’s Disease as a parallel adult-onset inherited condition.
- An analysis of postings on an online forum for people affected by MND, focusing on questions and concerns faced by people affected by inherited forms of the disease.
- Semi-structured interviews with 36 people affected by inherited MND, including people who have been diagnosed with inherited MND, people ‘at risk’, and partners/ family caregivers. In light of the COVID-19 outbreak, the majority of interviews were carried out remotely.
This research will contribute to understandings of experiences of inherited MND and other hereditary conditions. Findings will be shared with families and healthcare professionals.
This PhD study is funded by the Institute of Applied Health Sciences, University of Aberdeen. Interviews from this study will be used to develop a Healthtalk resource on family experiences of inherited MND, which has been funded by the MND Association (Ref: Locock/Sept19/941-794). Please see the following link for further information on the healthtalk project: https://www.abdn.ac.uk/hsru/what-we-do/research/projects/understanding-family-experiences-of-inherited-mnd-a-secondary-analysis-852.php
Supervision: Professor Louise Locock (University of Aberdeen), Dr Fadhila Mazanderani (University of Edinburgh), and Dr Karen Keenan (University of Aberdeen).
Jade Howard; email@example.com
Ongoing - Analysis and write up