Caregiving in ALS – a mixed methods approach to the study of Burden

Abstract

BackgroundCaregiver burden affects the physical, psychological and emotional well-being of the caregiver. The purpose of this analysis was to describe an informal caregiver cohort (n = 81), their subjective assessment of burden and difficulties experienced as a result of providing care to people with Amyotrophic Lateral Sclerosis (ALS).MethodsUsing mixed methods of data collection and analysis, we undertook a comprehensive assessment of burden and difficulties associated with informal caregiving in ALS. As part of a semi-structured interview a series of standardised measures were used to assess quality of life, psychological distress and subjective burden, and in an open-ended question caregivers were asked to identify difficult aspects of their caregiving experience.ResultsThe quantitative data show that psychological distress, hours of care provided and lower quality of life, were significant predictors of caregiver burden. From the qualitative data, the caregiving difficulties were thematised around managing the practicalities of the ALS condition, the emotional and psychosocial impact; limitation and restriction, and impact on relationships.ConclusionsThe collection and analysis of quantitative and qualitative data better explores the complexity of caregiver burden in ALS. Understanding the components of burden and the difficulties experienced as a result of caring for someone with ALS allows for better supporting the caregiver, and assessing the impact of burden on the care recipient.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0153-0) contains supplementary material, which is available to authorized users.

Caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross‐sectional study

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Understanding informal carers’ experiences of caring for older people with a hip fracture: a systematic review of qualitative studies

“…The importance of carers' role and the impact of caring on the lives of carers has been examined in situations where patients have a range of conditions [13,14]. Much of the literature is in relation to chronic conditions which highlights the structural and contextual factors that impact on carer burden [15].…”

Amyotrophic Lateral Sclerosis Mortality in the United States, 2011–2014

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