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

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.MethodsForty‐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.