Understanding resilience in family carers

Background: Many family carers report suffering high levels of stress as a central part of the caregiver experience. Recently research has begun to examine the role of resilience in enhancing the capacity of individuals to 'bounce back', enabling them to continue to care. Resilience has been defined as 'the process of, capacity for, or outcome of successful adaptation despite challenging or threatening circumstances.'

This study aimed to understand the nature and complexity of the caring task, identify the emotions and the quality of life outcomes family carers experience, explore their perception of resilience and how it applies to their caregiving roles by developing a carer definition and model of support for enhancing carer resilience. The study then undertook a scoping review to evaluate the effectiveness of two carers' centres to see if there is merit in further evaluative research.

Methods: A grounded theory study was undertaken, and situational analysis was used to provide a systematic way of interrogating the data and identifying themes. Focus groups were conducted with a range of family carers who were caring for a variety of adults and children with differing needs. The focus groups were recorded, transcribed and then analysed using grounded theory. The software package Nvivo was used to support the analysis. Two carers' centres participated in evaluative research to investigate both the cost and the worth of the services they provided. A logic model was used to create the evaluative research framework, quantitative data was collected using standardised measures and economic costings, qualitative data was collected using observations, surveys and interviews.

Results: Carers across care groups and across different relationships with the cared for define resilience in the same way. They define carer resilience as the ability to either continue caring or to move on, to continue navigating the changing relationship and to do this by adapting roles and behaviours throughout the carer journey. This includes adapting to the changing relationship with the care recipient; adapting one's identity; adapting one's behaviour to manage the symptoms and behaviour of the care recipient. Carers want commissioned services aimed at building their resilience to focus on supporting the changing relationship between the carer and the cared for and to better support the interplay between carers and the communities they live in.

Conclusions: Resilience (as defined by carers) would be a useful construct in helping professionals to understand that the key issue is the huge journey of change carers must move through. A common understanding of a social justice model of carer resilience might focus carer strategies on the different types of support carers require at different points in the carer journey to enable them to adapt to these massive changes. Translating policy into practice for carers will require a common understanding of carer resilience, an ability to measure it, a commitment to supporting carers across the carer journey and a more insightful understanding by policy makers of the challenges carers face. There needs to be an increase in studies that involve carers across care groups, across relationships and across the carer journey rather than studying carers in silos. There would be value in future research building on cost-analysis evaluation methods in attempting to gauge both the 'merit' and 'worth' of carer support services.