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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Abstract

Aims and objectives:

This study set out to describe caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers’ health-related quality of life and life satisfaction.

Background:

Knowledge about factors related to caregivers’ health-related quality of life and life satisfaction is important for identification of those at risk for ill health and for development of support and care.

Design:

A cross-sectional study.

Methods:

Forty-nine informal caregivers and 49 patients were included. Standardised and study-specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health-related quality of life (EuroQol Visual Analogue Scale, SF-36), life satisfaction (Life Satisfaction Checklist) and caregiver- and patient-related factors. Associations were explored by regression analyses.

Results:

Both positive and negative caregiver experience were reported, and health-related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health-related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers’ health-related quality and life satisfaction.

Conclusion:

The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person-centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers’ health-related quality of life and life satisfaction.

Relevance to clinical practice:

Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers’ health.

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