Individual quality of life in spousal ALS patient-caregiver dyads
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(2020) 18:371
RESEARCH
Open Access
Individual quality of life in spousal ALS patient-caregiver dyads Miriam Galvin1* , Tommy Gavin1, Iain Mays1, Mark Heverin1 and Orla Hardiman1,2
Abstract Background: Quality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is currently no curative treatment. Aim: To explore individual quality of life of people with ALS and their informal caregivers over time. Methods: Over three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases. Results: Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point. Family, hobbies and social activities were the main selfdefined contributors to quality of life. The importance of health declined relative to other areas over time. Friends and finances became less important for patients, but were assigned greater importance by caregivers across the illness trajectory. Psychological distress was higher among caregivers. Caregiver burden consistently increased. Conclusion: The findings from this study point to the importance of exploring and monitoring quality of life at an individual level. Self-defined contributory factors are relevant to the individual within his/her context. As an integrated outcome measure individual quality of life should be assessed and monitored as part of routine clinical care during the clinical encounter. This can facilitate conversations between health care providers, patients and families, and inform interventions and contribute to decision support mechanisms. The ascertainment of selfdefined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care.
Key implications If Quality of life is conceptualised as being unique to individuals, it cannot be adequately assessed using standardised measures only. Contributors to life’s quality are re-evaluated and reconfigured as patients and their care partners adapt to changing functional, material and emotional contexts. * Correspondence: [email protected] 1 Academic Unit of Neurology, Trinity College Dublin, Dublin, Ireland Full list of author information is available at the end of the article
Palliative and supportive care services should aim to support the factors identified to help maintain life quality as long as is practicable.
Introduction Amyotrophic Lateral Sclerosis (ALS) also known as Motor neurone disease (MND) i
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