Determinants of quality of life decrease in family caregivers of care-dependent patients: a longitudinal study
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Marcus Luciano de Oliveira Tavares, Adriano Marçal Pimenta, Cristina García‐Vivar, Mark Anthony Beinner, Lívia Cozer Montenegro
Caregiving is often treated as a fixed burden, but this study finds that quality of life is shaped by several changeable factors including shared responsibility, physical activity, sleep, and faith.
Caregiving is often treated as a fixed burden, but this study finds that quality of life is shaped by several changeable factors including shared responsibility, physical activity, sleep, and faith. Family caregivers of care-dependent patients experience a decline in Quality of Life, or QoL.
However, the determinants contributing to this decrease in QoL are still not fully understood. Therefore, the study aimed to estimate prospectively the determinants contributing to decreased QoL among family caregivers of care-dependent patients.
The shifts in demographics and epidemiological patterns have highlighted a rise in the elderly population, alongside an escalation in risk factors associated with Non-Communicable Diseases, or NCDs. This could lead to a surge in NCD-related complications and debilitating injuries, rendering a significant portion of the population reliant on caregiving.
Cross-sectional studies constrain the ability to establish causal relationships. Longitudinal studies are essential for elucidating the factors that diminish or elevate the QoL of family caregivers over time. Insights from longitudinal investigations can guide policymakers and healthcare practitioners in formulating interventions aimed at ameliorating the negative effects of care dependency on QoL.
The study aimed to estimate prospectively the determinants contributing to decreased QoL among family caregivers of care-dependent patients. This was an epidemiological, observational, longitudinal, and analytical study, coupled to a broader mixed-methods study.
The broader study investigated factors associated with changes in the QoL of family caregivers of care-dependent patients. At baseline and follow-up, the same measurement instruments assessed sociodemographic, health status, and lifestyle characteristics of family caregivers and their care-dependents.
The WHOQOL-bref measured quality of life through twenty-six questions, and its scores ranged from zero to one hundred, with higher scores indicating better quality of life. The WHOQOL-bref consists of 26 questions: two general inquiries about overall quality of life and 24 questions addressing specific domains.
The resulting score ranges from zero to one hundred, with higher scores indicating better quality of life. Changes in QoL over time served as the outcome variable. The study computed deltas of QoL modifications by subtracting follow-up scores from baseline scores.
Score differences were categorized as maintained, decreased, or increased. For multivariable analysis, maintained and increased were grouped, making the outcome variable binary: maintained or increased versus decreased.
To estimate determinants of a decrease in family caregivers' QoL, a hierarchical multivariable analysis using Poisson regression was conducted. The variables were divided into two blocks following a theoretical model based on findings from a prior study.
The distal block contained variables concerning the care-dependent patient, while the proximal block focused on variables related to the family caregiver. Table One summarizes baseline and follow-up characteristics for one hundred twenty-two dependents and one hundred thirty-five family caregivers in Belo Horizonte, Brazil.
Dependents were mostly elderly, with ninety-one at baseline, while caregivers were predominantly female, with one hundred seven at baseline. The table also reports income, health status, hospitalization, caregiving duration, physical activity, and training, showing that noncommunicable disease was reported for one hundred fifteen dependents at baseline and caregiver training for fifteen caregivers.
Table Two compares dependents’ Barthel Index scores at baseline and follow-up for one hundred twenty-two participants in Belo Horizonte. The continuous scores report a mean of fifty-two point five at baseline and forty-one point four at follow-up, with a general difference of negative eleven point two; seventy-three participants, or fifty-nine point eight percent, were classified as worsening.
Categorically, the follow-up group included thirty-three classified as total dependency and forty-five as slight, compared with twenty-six and sixty-one at baseline, respectively; the authors mark the general difference and the slight-category change as statistically significant.
Table 3 compares quality-of-life scores for one hundred thirty-five family caregivers at baseline and follow-up, using the General Quality of Life Index and four domains. The overall mean changed from 64.9 at baseline to 58.9 at follow-up, with 47 caregivers reporting decreases, 77 remaining stable, and 11 reporting increases.
The Wilcoxon test identified statistically significant baseline-to-follow-up differences, while the domain-level results show decreases in the physical, psychological, social, and environmental scores. Comparing baseline and follow-up, a significant decline in family caregivers' quality of life was evident across all four quality-of-life domains as well as the general measure.
Table four reports relative risks and ninety-five percent confidence intervals for factors independently associated with changes in caregivers’ overall and domain-specific quality of life. Hospitalization, worsening dependence, and older caregiver age appear only in the GQOLI analysis, while physical activity, sleep, caregiving duration, religious faith, and shared responsibilities relate to selected domains.
Notably, shared caregiving responsibilities are reported across every outcome, and religious faith appears in the overall, physical, social, and environmental domains. The psychological domain showed that physical activity for more than one hundred fifty minutes per week was associated with a lowered risk of quality-of-life decrease.
In that domain, the relative risk was zero point three eight for physical activity and zero point five five for sharing caregiver responsibilities. Both factors offered protection against a decline in quality of life. Table five reports sensitivity analyses of factors independently associated with caregivers’ quality of life across the general, physical, psychological, social, and environmental domains.
Sharing caregiving responsibilities is associated with relative risks ranging from zero point forty to zero point sixty-two across these domains, while religious faith appears in the general, physical, and social domains. The table also identifies dependent hospitalization, worsening dependence, caregiver age, physical activity, sleep, and time as a caregiver as domain-specific factors.
Most factors identified in the study are amenable to intervention, which can either mitigate or enhance their impact. These factors include sharing caregiver responsibilities, engaging in physical activity, ensuring sufficient sleep duration, addressing hospitalization history, managing care-dependency levels, and addressing caregiving duration.
Achieving these changes requires collaborative intersectoral approaches involving policymakers, administrators, healthcare practitioners, and families working together. In this longitudinal Brazilian study, caregiver quality of life declined alongside worsening dependency, but several protective factors were identified.
That matters because many of these factors are amenable to intervention.
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