Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study.
- Författare
- Sandstedt P., Littorin S., Cröde Widsell G., Johansson S., Gottberg K., Ytterberg C., Olsson M., Widén Holmqvist L., Kierkegaard M.
- Titel
- Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study.
- Utgivningsår
- 2018
- Tidskrift
- J Clin Nurs.
- Volym
- 27
- Häfte
- 23-24
- Sidor
- 4321-4330
- Sammanfattning
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 qualityof 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.