Resilience and emotional intelligence of family members caring for someone with Duchenne muscular dystrophy

Abstract

Background: Duchenne Muscular Dystrophy (DMD) is a progressive
neuromuscular condition. Those living with DMD develop increasing care needs for all aspects of daily living, a role often consuming the lives of parents of affected children and adults. Caring for someone with DMD is challenging and can have detrimental effects on well-being. Despite this, previous research has suggested that those providing care demonstrate resilience - the process of personal growth through the experience of challenging life events. However, a lack of understanding exists around factors that contribute to the process of resilience, particularly the role of emotion. This research sets out to investigate how these carers develop resilience and considers the interplay of Emotional Intelligence (EI) in supporting resilience.

Methods: Conducted using mixed-methods, the research followed a two stage approach investigating carers caring for someone with DMD from the UK and Ireland. During Stage I, a questionnaire was completed by family carers of those living with DMD to measure resilience, EI and other demographical variables relating to the caring experience. Participants indicating interest were invited to take part in Stage II of the research. Stage II involved a semi–structured interview examining participants’ caring experiences, analysed using thematic analysis.

Results: Receiving a diagnosis of DMD and providing care is an emotional
bombardment; a particularly concerning finding in light of carers’ low resilience and EI. Nevertheless, the research found that resilience could be enhanced through EI. EI abilities facilitate resilience through enhancing personal competencies and initiating valuable social support resources.

Conclusions: Despite tremendous challenges, those caring for someone with DMD appear to generate and enhance their resilience using EI abilities. This is a promising basis for future research to investigate supportive interventions to enhance resilience for carers facing these challenges.

Date of Award	Nov 2021
Original language	English
Supervisor	Maggie Long (Supervisor), Brian Taylor (Supervisor) & Jill Hendron (Supervisor)