Introduction Diagnosis of Motor Neurone Disease (MND) for individuals and families is one of shock, due to fear, rapid progression, and the level of associated disability. Prompt access to multi-disciplinary support, signposting to services and the need for psychological support are important to individuals and their carers to live better with MND. An early access MND ‘Living Well’ support group was developed at a hospice in 2017 to address this.
Aims The objective of this study was to explore the carers’ lived experience of the group, to inform development of support services for people and families living with and dying from MND.
Method Qualitative semi-structured interviews with 8 carers were conducted, utilising phenomenological research design, enabling participants to discuss lived experiences of attending the ‘Living Well’ group with their relative. Thematic analysis was used to analyse the data using the IPA framework.
Results Thematic analysis of the findings resulted in 5 key themes: Theme 1, Dealing with diagnosis and fear of the hospice, Theme 2, Being human, Theme 3, Collegiality, or connection with others (Invisible Bonds), Theme 4, Escapism and Theme 5, Opening doors to living well.
Conclusion Carers experience divergent state of mind at different stages of the condition and MND journey. Early access to support networks can develop resilience reducing carer burden. Friendships and peer support which continued following the group, demonstrates shared bonds between people living with MND and their families, suggesting a familiarity of journey is important.
Impact This study demonstrates a need for early support for people living with MND and their families; and highlights the effectiveness of the Living Well Group at Marie Curie Hospice Newcastle.
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