Contribute to the development of a caregiving study

A lot of research into the impact of caregiving has focused on spouses and partners who provide care, but less is known about the experiences of adult children caring for a parent with MND. The researchers are conducting a study to investigate the experiences of adult children who care for a parent with MND, including the emotional, psychological, relational and practical impact of caregiving. The researchers are particularly interested in how caring affects family relationships, identity, wellbeing and support needs. 

As part of the project, the researchers are looking for people with lived experience of caring for a parent with MND to help shape the research. Contributors will act as advisors to the researchers by sharing their perspectives and feedback throughout the development of the study. They will help to make sure the study materials, interview questions, recruitment approach and interpretation of the findings are meaningful, sensitive, and relevant to people with lived experience. 
 

How will this study help people with and affected by MND now and/or in the future?

By involving people with lived experience in the development of the research, this project aims to ensure that the study is grounded in the real experiences and priorities of families affected by MND. This will help to strengthen the quality, accessibility and relevance of the research. 

The research may help improve understanding of the experiences of adult child caregivers, an area that is currently underrepresented in research. In the future, findings may help inform more family-inclusive approaches to psychological support, service provision, and caregiver resources within MND care.