Deconstructing Caregiver Burden in Amyotrophic Lateral Sclerosis – adding a qualitative perspective

Introduction Amyotrophic Lateral Sclerosis (ALS) is a progressive, neurodegenerative disease, affecting physical, communication and cognitive functioning. A considerable amount of care for people with ALS is provided in the... [ view full abstract ]

Introduction
Amyotrophic Lateral Sclerosis (ALS) is a progressive, neurodegenerative disease, affecting physical, communication and cognitive functioning. A considerable amount of care for people with ALS is provided in the community by family and friends. Informal caregivers face the demands of coping with a rapidly evolving care situation, physical and cognitive/behavioural decline of the care-recipient and their own physical, psychological and emotional health needs. Caregiver burden is a multidimensional construct, a term frequently used but rarely deconstructed. A combination of validated scales and measures with pre-defined variables, and caregivers’ self-defined difficulties generates a comprehensive understanding of burden adding to the conceptualization and understanding of the informal caregiver experience.

Methods
In a semi-structured interview with informal caregivers (n=81), standardised measures were used to assess quality of life, psychological distress and caregiver burden, and in an open-ended question participants were asked to identify some difficult aspects of caregiving. Written informed consent was obtained. Ethical approval was received from authors’ institutions. Descriptive statistical analysis was performed on the quantitative with thematic analysis of open-ended responses.

Results
Significant associations were found between caregiver burden, hours of care provided (p=.012), reduced quality of life (p=.014) and increased psychological distress (p=.004). 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 with self and others.

Conclusions
Preliminary analysis endorses the value of the deconstruction of burden. Acknowledging objective and subjective burden, and difficulties as identified by the caregivers themselves, can help focus support and interventions for caregivers. Educational and training programmes for caregivers and health care professionals should recognize the dimensionality of caregiver burden in ALS.