Evaluation of quality of life and depression in family caregivers of patients with type 1 diabetes in Iran: A case–control study
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ABSTRACT: Objective:
Diabetes as a silent epidemic and one of the top four causes of death in the
SUBMITTER: Ghorbani R
PROVIDER: S-EPMC9834789 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:BackgroundThis study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of parents of similar-age children without DMD.MethodsA web-based survey included DMD caregivers and a nationally representative comparison group of parents of children without DMD stratified by Child Age Group. Outcomes included quality of life, resilience, caregiver impact, stressful life events, financial strain, out-of-pocket expenditures, work productivity and unrealized ambitions. General linear models assessed the main effect of Caregiver Group and the interaction of Caregiver Group with Child-Age-Group, after adjusting for demographic covariates.ResultsCompared to parents without a DMD child, DMD Caregivers reported better physical health but worse mental health, positive affect/well-being, environmental mastery, difficulty paying bills, and more hours missed from work. Providing caregiving support for DMD teenagers was the most challenging. DMD caregivers curtailed their educational and professional ambitions, and modified their homes to accommodate the disability associated with DMD. Their non-DMD children had to make sacrifices as well. Nonetheless, in resilience and life stress, DMD caregivers were comparable to the comparison group, and showed consistent levels of positive emotions across the age of their DMD child.ConclusionDMD caregivers fared worse on most outcomes and faced more hurdles in work life. They face constraints and hidden costs that impact their health and financial well-being. Caregivers of teenagers with DMD reported higher impact. Nonetheless, parents of DMD children of all ages maintained notable resilience and positivity.
| S-EPMC8605451 | biostudies-literature
Project description:Background: Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers. Objectives: To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers. Design: Secondary analysis of baseline data from two randomized clinical trials. Setting/Subjects: Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States. Measurements: Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index-Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ). Results: Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication. Conclusions: Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended. Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.
| S-EPMC8982115 | biostudies-literature
Project description: Not available
| S-EPMC10880260 | biostudies-literature
Project description:BackgroundRare diseases affect the health-related quality of life (HRQoL) of patients and their family caregivers (FCs). However, limited evidence is available on the HRQoL of FCs of patients with Gaucher disease (GD). This study aimed to assess HRQoL and related factors among FCs of patients with GD in China.MethodsA cross-sectional online survey was conducted with 49 FCs recruited by convenience sampling. Participants completed the Medical Outcome Study Short Form-36 (SF-36), Zung's Self-Rating Anxiety Scale, Zung's Self-Rating Depression Scale, the Multi-dimensional Scale of Perceived Social Support, the Herth Hope Index, and a questionnaire about FCs' and patients' sociodemographic characteristics. Single-sample t tests, one-way analysis of variance, and multivariate linear regression analysis were used to analyze the data analysis.ResultsParticipating FCs had significantly lower scores in all eight SF-36 domains compared with the general population in China (p < 0.01). FCs' gender, education, daily care time, anxiety, and the perceived disease severity of patients were significant predictors of SF-36 physical component summary scores. Caregiving help from others, anxiety, perceived disease severity, and medical insurance type were significant predictors of SF-36 mental component summary scores.ConclusionThe findings showed FCs of patients with GD had lower HRQoL. There is an urgent need to address the health concerns of FCs of people with rare diseases including their HRQoL.
| S-EPMC8457695 | biostudies-literature
Project description:Family caregivers may not agree with patients with dementia regarding attitudes toward end-of-life preferences, and the effects of this type of disagreement are not well understood. This study sought to identify such a disagreement and its predictors.A cross-sectional sample of 84 family caregivers and patients with dementia was recruited from memory clinics. We used the Mini-Mental State Examination, Neuropsychiatric Inventory, Clinical Dementia Rating, and Katz index of independence in activities of daily living to assess patient symptoms, functions, and severity of dementia. Caregivers completed questionnaires on perceived patient end-of-life care preferences, caregiver end-of-life care preferences for patients, Zarit Burden Interview (ZBI), Center for Epidemiological Studies-Depression Scale (CES-D), and knowledge of clinical complications of advanced dementia.The self-disclosure rates of patient preferences were 34.5% for tube feeding, 39.3% for cardiopulmonary resuscitation, and 45.2% for mechanical ventilation. For patients who had disclosed preferences, the disagreement rate between them and their caregivers was 48.3% for tube feeding, 48.5% for cardiopulmonary resuscitation, and 60.3% for mechanical ventilation. Caregiver depression (i.e., CES-D ≥16) was associated with disagreements on cardiopulmonary resuscitation (adjusted odds ratio (aOR) = 6.6, 95% CI = 1.4-31.1, P = 0.01) and mechanical ventilation (aOR = 14, 95% CI = 2.2-87.2, P = 0.005) preferences.The preferences of end-of-life issues differed greatly between dementia patients and their caregivers. Depression in caregivers is associated with such discrepancy.
| S-EPMC4521939 | biostudies-other
Project description:BackgroundThe quality of life of family caregivers of patients with advanced cancers is an important concern in oncology care. Yet, there are few suitable measurement scales available for use in Asia. This study aims to develop and evaluate a locally derived measurement scale in English and Chinese to assess the quality of life of family caregivers of patients with advanced cancers in Singapore.MethodsScale contents were generated from qualitative research that solicited inputs from family caregivers. Six hundred and twelve family caregivers of patients with advanced cancers were recruited, of whom 304 and 308 chose to complete the English and Chinese versions of the quality of life scale, respectively. A follow-up survey was conducted for test-retest reliability assessment. Analyses began with pooling all observations, followed by analyses stratified by language samples and ethnic groups (among English-speaking participants).ResultsFactor analysis identified 5 domains of quality of life. The Root Mean Square Error of Approximation was 0.041 and Comparative Fit Index was 0.948. Convergent and divergent validity of the total and domain scores were demonstrated in terms of correlation with the Brief Assessment Scale for Caregiver and its sub-scales and a measure of financial concern; known-group validity was demonstrated in terms of differences between groups defined by patient's performance status. Internal consistency (Cronbach's alpha) of the total and domain scores ranged from 0.86 to 0.93. Test-retest reliability (intraclass correlation coefficient) ranged from 0.74 to 0.89. Separate analyses of the English- and Chinese-speaking samples and ethnic groups gave similar results.ConclusionA new, validated, multi-domain quality of life measurement scale for caregivers of patients with advanced cancers that is developed with inputs from family caregivers is now available in two languages. We call this the Singapore Caregiver Quality Of Life Scale (SCQOLS).
| S-EPMC6376783 | biostudies-literature
Project description:ObjectiveBlack Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective.MethodsOne hundred and fifty-one dyads comprised of a Black American with breast, colorectal, lung or prostate cancer and a Black family caregiver were included in this secondary analysis of pooled baseline data from three studies. Self-reports of problems managing 13 symptoms were used to measure mental and physical symptom distress. Descriptive statistics and the actor-partner interdependence model were used to examine symptom prevalence and the influence of each person's symptom distress on their own and each other's QOL.ResultsFatigue, sleep problems, pain and mental distress were prevalent. Patients and caregivers reported similar levels of mental distress; however, patients reported higher physical distress. Increased patient mental distress was associated with decreased patient QOL (overall, emotional, social, functional). Increased patient physical distress was associated with decreased patient QOL (overall, physical, emotional, functional) and decreased caregiver emotional wellbeing. Increased caregiver mental distress was associated with decreased caregiver QOL (overall, emotional, social, functional) and decreased patient overall QOL. Increased caregiver physical distress was associated with decreased caregiver QOL (overall, physical, functional), decreased patient emotional wellbeing, and better patient social wellbeing.ConclusionsSupporting symptom management in Black patient/caregiver dyads may improve their QOL.
| S-EPMC8672379 | biostudies-literature
Project description:BackgroundProviding care for individuals with a progressive, debilitating condition such as dementia can adversely impact the quality of life (QOL) of informal caregivers. To date, there is no existing caregiver quality of life measure for dementia caregivers with breadth of coverage or that is applicable to caregivers of diverse ethnic backgrounds. The purpose of this study was to develop and evaluate a caregiver-targeted quality-of-life measure (CGQOL) for informal caregivers of persons with dementia that can be used with caregivers from a variety of ethnicities.Methods91 items were field tested by telephone interviews with 179 English-speaking and 21 monolingual Spanish-speaking caregivers of persons with dementia. Repeat interviews were conducted with 71 caregivers. Administration time, scale score distributions, item-scale correlations, reliability, and associations of scales with patient and caregiver demographic and caregiving characteristics were estimated. Structure of associations among scales was examined using exploratory factor analysis.ResultsItem analysis yielded 80 items distributed across 10 scales, with median administration time of 17 minutes [IQR 13.5-22 minutes] and minimal missing data. There were few floor or ceiling effects in scale score distributions. Internal consistency reliability was >or= 0.78 for all scales; test-retest reliability (intraclass correlation) estimates exceeded 0.70 for 6 scales. More hours weekly spent in caregiving was uniquely associated with worse quality of life on 8 scales (p's <or= 0.05). Three higher-order dimensions of caregiving assistance, emotional and social concerns, and spirituality and benefits were identified.ConclusionThese preliminary results support subsequent evaluation of test-retest reliability, construct validity, and responsiveness to change of this quality-of-life measure for caregivers from diverse ethnicities.
| S-EPMC2706224 | biostudies-literature
Project description:The COVID-19 pandemic underscored the imperative for meaningful family involvement in long-term care, aligning with policy and safety standards while enhancing outcomes for caregivers, residents, and staff. The objectives of this article are as follows: (1) a case study report on implementing a family involvement intervention designed to facilitate the formal and safe engagement of family caregivers in resident care and (2) the pilot evaluation of the intervention. We used Knapp's six-step implementation science model to guide and describe intervention development to provide insight for others planning family involvement projects. We employed sequential mixed methods, including surveys with quantitative and qualitative questions before and after program implementation for providers, and surveys and interviews with family caregivers a year after. We used the Mann-Whitney U test (p < 0.05) to assess differences in health providers' perceptions pre- and post-education. Families and staff perceived that the Family Involvement Program was important for improving the quality of care, residents' quality of life and family/staff relationships. Providers' perceptions of the program's positive impact on residents' quality of life (p = 0.020) and quality of care (p = 0.010), along with their satisfaction with working relationships with families (p = 0.039), improved significantly after the program. Qualitative data confirmed improvements in family-staff relationships. In conclusion, we documented the design of this family involvement initiative to encourage family caregivers and staff to work together in residents' care. Youville's Family Involvement Program gives families and family caregivers an explicit role as partners in long-term care. The mixed methods pilot evaluation documented improvements in staff and family relationships.
| S-EPMC10930910 | biostudies-literature
Project description:Purpose The survival rate of pediatric patients undergoing liver transplantation has increased considerably. Despite this, the period after transplantation is still complex and poses several challenges to the recipient’s family, which is responsible for care management. Recently, more attention has been paid to the impact of this complex procedure on the quality of life of caregivers. Hence, this study is aimed at assessing the quality of life of caregivers of patients who have undergone liver transplantation and the aspects that influence it. Methods This was an observational and cross-sectional study. From November 2020 to January 2021, short-form-36 questionnaires and additional questions were given to the main caregivers of children and adolescents who underwent pediatric liver transplantation. Results Thirty-eight questionnaires were completed and the results revealed a lower quality of life in comparison to Brazilian standards, primarily in the mental domains (41.8±14.1 vs. 51.1±2.8; p<0.001). It did not show a significant association with socioeconomic or transplant-related factors, but it did show a negative impact on parents’ perception of the child’s health. Parents who reported worse health status for their children had a lower mental quality of life (44.1±13.8 vs. 33.3±12.6; p<0.05). Conclusion The caregivers of transplanted children have a lower quality of life than those of the local population. Psychological assistance should be routinely provided to parents for long-term follow-up to mitigate potential negative effects on the transplanted child’s care.
| S-EPMC9679308 | biostudies-literature