Caregiver Quality Of Life Research Articles

The Burden of Metastatic Breast Cancer on Caregiver Productivity and Quality of Life: A Survey Study in the United States, United Kingdom, and Germany

BackgroundCaring for a patient with metastatic breast cancer (mBC) can impose a substantial burden and can lead to significant productivity losses. However, the extent to which productivity loss impacts caregiver well-being has not been well-elucidated. This study examined the relationship between productivity and other characteristics with quality of life (QoL) to illuminate the multifaceted challenges faced by caregivers in the context of mBC. MethodsWe conducted a one-time, cross-sectional survey of 345 informal caregivers of people living with mBC in the United States, United Kingdom, and Germany in December 2021. Caregivers were asked about their QoL using the Caregiver Quality of Life Index-Cancer (CQOLC) and pre-/post-caregiving productivity impacts. Heterogeneity in reported burden was assessed across a variety of caregiver characteristics. ResultsOne in three caregivers changed work status after onset of caregiving, either reducing working hours (12%), stopping work altogether (13%), or increasing working hours (8%). Caregivers who reduced hours or stopped working reported better QoL overall with total CQOLC scores of 71.8 and 65.3, compared to those who maintained or increased work hours (CQOLC scores of 61.3 and 54.4, respectively, [p<0.001]). While there were no differences in caregiver QoL by patients’ disease status (p=0.48), longer time spent caregiving was associated with lower burden (p=0.002). ConclusionsCaregiver productivity and QoL scores indicate leaving the workforce may ease the challenges associated with caregiving, suggesting a need for workplace flexibility to better support caregivers. Our study emphasizes the importance of supporting caregivers alongside patients, acknowledging caregiver well-being can significantly influence patient outcomes. Policy SummaryAlthough the burden associated with cancer caregiving has been well documented, policies supporting caregivers, such as flexible employment leave and mental health support resources, are urgently needed to improve QoL and health outcomes for both patients and their informal caregivers.

Unraveling spinal cord injury caregiver burden in Indonesia

Diverse cultural, social, and economic backgrounds significantly influence the caregiver burden of spinal cord injury (SCI) patients, affecting their quality of life (QoL) and the overall care experience. This study was done to identify spinal cord caregivers' QoL in Indonesia through their burden and the variables that influence it. A cross-sectional study was conducted at Dr. Hasan Sadikin Hospital, Bandung, Indonesia, involved 137 primary SCI caregivers. The burden of these caregivers was evaluated using the Indonesian version of the Zarit Burden Interview (ZBI) and the World Health Organization Quality of Life-BREF questionnaires. The data was analyzed with multiple linear regression and spearman analysis using SPSS version 24. The majority of SCI caregivers have a mild to moderate burden (54.7%). The burden score was significantly correlated, especially with occupational status and the length of interaction each day (p&amp;lt;0.001). It also found a significant with strong negative correlation (referring to the Guilford criteria) between caregiver burden and QoL (r-value −0.750; p-value &amp;lt;0.001). Indonesian caregivers' cultural and economic backgrounds may alleviate their burden in caregiving, but attention to patient occupational status and care duration is crucial to prevent worsening their quality of life, particularly for SCI survivors they care for.

Effect of alemtuzumab on fatigue, quality of life, and patient/caregiver-reported outcomes in relapsing-remitting multiple sclerosis – a real-world evidence study

BackgroundAlemtuzumab is approved in the European Union for treating highly active relapsing-remitting multiple sclerosis (RRMS). Patient-reported outcomes measure the treatment impact on quality of life (QoL), including fatigue, a common symptom in multiple sclerosis (MS). Chronic diseases like MS also affect the patient's caregiver. Thus, understanding the impact on both patients and caregivers is essential for a comprehensive view of MS treatment outcomes. MethodsThis multi-center prospective, observational study assessed RRMS patients undergoing alemtuzumab treatment, and their caregivers across three European countries (Denmark, Norway, and Italy). The study visits were conducted at baseline, and at Months 3, 6, 12, 18, 24, and 36 (± 1 month). The primary endpoint assessed the effect of alemtuzumab on MS-related fatigue (Fatigue Scale for Motor and Cognitive Functions [FSMC] score). Secondary endpoints included changes in cognition (Symbol Digit Modalities Test [SDMT]), depression (Beck Depression Inventory-Version II [BDI-II]), QoL (29-item Multiple Sclerosis Impact Scale [MSIS-29]), treatment satisfaction (Treatment Satisfaction Questionnaire for Medication [TSQM]), working capacity/daily life activity (Health-Related Productivity Questionnaire [HRPQ]), and clinical evaluation (number of relapses, improvement in Expanded Disability Status Scale [EDSS] score, and need for re-treatment with alemtuzumab/any other treatment). Exploratory endpoints included caregiver perception of patient's QoL, caregiver QoL, and caregiver burden. The sample size (N=80) was determined based on the 2-sided t-test at 5% significance level. Data were analyzed descriptively. Safety was also evaluated. ResultsOf 87 enrolled patients, 72.4% (n=63) completed all follow-ups. Significant improvement was observed in fatigue (p<0.01), with a median (min, max) FSMC score change of -7.3 (-56.0, 34.0) units at the end-of-study (EOS), and clinically relevant improvement (≥ 9 units) noted in approximately 12.5 months. SDMT (3-5 units, p<0.05), BDI-II (median score of 9.5, i.e., no depression, p<0.01), and MSIS-29 (median change in physical and psychological impact scores -9.2, p<0.01 and -14.8, p<0.001, respectively) improved significantly from baseline to EOS. Global treatment satisfaction (p<0.001), effectiveness (p<0.05), and side effects (p<0.05) significant improved exept at EOS, whereas treatment convenience remained same throughout the study. The percentage of patients with at least one relapse was similar each year of the study (10.8%-13.2%). A statistically significant improvement (p<0.05) in EDSS was reported over time. At EOS, 4.5% patients needed retreatment with alemtuzumab. Caregivers also reported improvement in patients’ QoL over time, but the median change from baseline (physical and psychological impact scores: -10.0 and -14.8, respectively) was not statistically significant (p>0.05). Caregivers reported similar QoL and caregiver burden at baseline and EOS, apart from an increase in emotional QoL. Headache (51.2%), pyrexia (44.2%), and rash (34.9%) were the most common adverse events (AEs). Majority of the AEs were either mild or moderate, apart from 25 severe AEs. Three patients discontinued prematurely, of which one patient died of sepsis related to treatment. ConclusionThis real-world study showed beneficial impact of alemtuzumab on fatigue, cognition, depression, QoL, and treatment satisfaction. Improvement in patient disability, and caregiver-reported outcomes indicated enhanced patients’ QoL.

Future anxiety, experience of stigma, emotion regulation and quality of life in caregivers of children with autism spectrum disorder: a cross-cultural perspective

The aim was (1) to investigate potential differences in future anxiety, experience of stigma, emotion regulation and quality of life between Saudi Arabia, Turkey and Emirate and Australian mothers/fathers/caregivers of children with autism spectrum disorder (ASD); (2) to examine the predictive role of sociodemographic characteristics (i.e. culture, parental gender, age, and family socioeconomic status), child’s features (i.e. child IQ and ASD severity) on parenting stress in parents of children with ASD in Italy and Japan; (3) to study the predictive role of culture, parents’ sociodemographic characteristics, child’s characteristics, future anxiety, experience of stigma, and emotion regulation on the quality of life between Saudi Arabia, Turkey, Emirate and Australian mothers/fathers/caregivers of children with ASD. Participants were parents or main caregivers of autistic children. There were 280 parents of children (aged six to ten years) with a diagnosis of ASD. For analyses of gender and country differences in future anxiety, experience of stigma, emotion regulation and quality of life, a multivariate analysis of variance (MANOVA) was performed. Findings highlight the importance of a cross-cultural approach to understand the predictive contribution of selected sociodemographics of parents and child on study variables.

A Longitudinal Examination of Autism Services, Child Adaptive Functioning, and Parent Quality of Life during the COVID-19 Pandemic.

The delivery of services to children with autism spectrum disorder (ASD) was disrupted during the coronavirus disease 2019 (COVID-19) pandemic, which may have affected child functioning and caregiver quality of life (QoL). This study examined changes in service intensity, child adaptive functioning, and caregiver QoL during the COVID-19 pandemic. Participants were 146 caregivers (87% mothers) of children with ASD (M age = 8.22 years; SD = 4.21) who were invited to complete an online survey about service intensity, child functioning, and caregiver QoL at four time points between the summer of 2020 and the summer of 2021. Simple regressions indicated that child adaptive functioning and caregiver QoL increased over time after stay-at-home orders were lifted. Fixed effects regression models indicated that increases in service intensity were associated with concurrent increases in caregiver physical QoL. Decreases in child repetitive behaviors were associated with concurrent increases in caregiver social and environmental QoL. These findings suggest that children and their caregivers demonstrated resilience in the year after stay-at-home orders were lifted. Additionally,service intensity and child repetitive behaviors may impact caregiver QoL, making these variables areas of opportunity for stakeholders and professionals.

Is intrapersonal emotional competence a personal resource for the quality of life of informal caregivers of cancer patients unlike interpersonal emotional competence?

This study assessed the influence of intrapersonal (one's own emotions) and interpersonal (emotions of others) emotional competence (EC) of informal caregivers on their quality of life (QoL) at the beginning of cancer care. Participants completed two questionnaires assessing their intrapersonal and interpersonal EC (S-PEC) as well as their QoL (SF-36) at the beginning of treatments. Multivariate ANCOVA regression analyses were then performed to explore the influence of EC on QoL. The questionnaires were completed by 203 caregivers. As expected, intrapersonal EC was associated with a better QoL in all sub-dimensions (p < 0.01). More surprisingly, interpersonal EC was associated with worse QoL in terms of physical role (- 8.97 [95% CI - 16.74; - 1.19]), emotional role (- 8.37 [95% CI - 16.27; - 0.48]), and general health (- 4.50 [95% CI - 8.08; - 0.92]). Intrapersonal EC should be improved for better QoL of caregivers of cancer patients. However, the more caregivers are attentive to the emotions of others (e.g., by identifying, understanding, listening and helping to manage emotions), the more their physical and psychological state has an impact on their daily life and their perceived health is impaired.

The effects of chemogenetic targeting of serotonin-projecting pathways on L-DOPA-induced dyskinesia and psychosis in a bilateral rat model of Parkinson's disease.

Parkinson's disease (PD) is commonly characterized by severe dopamine (DA) depletion within the substantia nigra (SN) leading to a myriad of motor and non-motor symptoms. One underappreciated and prevalent non-motor symptom, Parkinson's disease-associated psychosis (PDAP), significantly erodes patient and caregiver quality of life yet remains vastly understudied. While the gold standard pharmacotherapy for motor symptoms Levodopa (LD) is initially highly effective, it can lead to motor fluctuations like LD-induced dyskinesia (LID) and non-motor fluctuations such as intermittent PDAP. One source of these fluctuations could be the serotonergic raphe nuclei and their projections. Serotonin (5-HT) neurons possess the machinery necessary to convert and release DA from exogenous LD. In DA-depleted brain regions these 5-HT projections can act as surrogates to the DA system initially compensating but chronically leading to aberrant neuroplasticity which has been linked to LID and may also contribute to non-motor fluctuations. In support, recent work from our lab established a positive relationship between LID and PDAP in parkinsonian rats. Therefore, it was hypothesized that normalizing 5-HT forebrain input would reduce the co-expression of LID and PDAP. To do so, we expressed 5-HT projection specific inhibitory designer receptor exclusively activated by designer drugs (DREADDs) using Cre-dependent AAV9-hM4di in tryptophan hydroxylase 2 (TPH2)-Cre bilaterally 6-OHDA-lesioned rats. Thereafter we used the designer drug Compound 21 to selectively inhibit 5-HT raphe projections during LD treatment to modulate the expression of PDAP, assayed by prepulse inhibition (PPI) and LID, quantified by the abnormal involuntary movements (AIMs) test. Our results suggest that chemogenetic inhibition of 5-HT raphe-projecting cells significantly reduces LID without affecting stepping ability or established sensorimotor gating deficits. Overall, this study provides further evidence for the complex influence of 5-HT raphe-projecting neurons on LD's neurobehavioral effects.

QOL-26. GLIOMA PATIENTS’ COGNITION AND THEIR CAREGIVERS: THE GOOD, THE BAD, AND THE BURDEN

Abstract BACKGROUND Cognitive decline, common in patients with gliomas, can contribute to reduced independence in daily functioning. Patients with gliomas often rely on informal caregivers for functional support, evidenced to cause distress in other caregiver populations (e.g., Alzheimer’s, terminal cancer, dementia). Few studies have investigated this relationship in neuro-oncology; thus, we explored whether patients’ neurocognitive function was associated with aspects of caregiver burden. METHODS Patients with glioma underwent neurocognitive testing including Auditory Verbal Learning Test-Delayed Recall (AVLT), Trail Making Test-Part B (TMT-B), Stroop Color-Word Interference (CWI), Controlled Oral Word Association Test (COWA), and the Grooved Pegboard (GPB). Caregiver burden was assessed using the schedule burden and self-esteem subscales of the Caregiver Reaction Assessment (CRA). Hierarchical regressions and independent samples t-tests evaluated whether neurocognitive performance predicted caregiver burden and differences in caregiver burden between patients with intact versus impaired (AVLT; ≥ -1.5 SD) memory. RESULTS Seventy-eight dyads were included for analyses (Patient: Mage=53.4, 65.4% male, 97.4% Non-Hispanic/White; Caregiver: Mage =52.5, 71.8% female, 96.2% Non-Hispanic/White). AVLT performance was significantly related to both caregiver schedule burden (β = -.63, p =.003) and self-esteem (β =.26, p =.046). Performance on TMT-B, COWA, GPB, and CWI and patient age were not related to caregiver burden in any model (ps&amp;gt;.05). There was a significant difference in caregiver schedule burden between those with (M=15.17, SD=5.84) and without memory impairment (M=18.50, SD=5.60) [t(72)=-2.44, p=.017] but not for self-esteem (p&amp;gt;.05). CONCLUSIONS Patient performance on verbal memory was sensitive to the changes that may contribute to increased caregiver burden. An amnestic profile may be the most salient cognitive predictor of strain on neuro-oncology caregivers. Our findings speak to the interdependence of patient outcomes and caregiver quality of life. Supporting patients’ neurocognitive capabilities, such as implementing individualized cognitive rehabilitation programs, may improve caregiver burden.

The Effect of Interventions on Quality of Life, Depression, and the Burden of Care of Stroke Patients and Their Caregivers: A Systematic Review.

BACKGROUND: The impact of stroke is a global concern for health policymakers. A large proportion of survivors require long-term support from family members who are typically unprepared for their caregiving duties. This study determined the effect of different interventions on quality of life (QoL), depression, and the burden of care of stroke patients and their caregivers. METHODS: A systematic review was conducted from 2000 up to May 2023. Study inclusion criteria were as follows: individuals serving as informal caregivers for stroke survivors 18 years and older, devoting a significant portion of their time to the care of such survivors; involvement in psychoeducational, informational, supportive, psychosocial, or combined interventions; exposure to standard or conventional care practices; evaluation of outcomes relating to the QoL for stroke caregivers, depression, caregiver burden, and levels of stroke survivors; and consideration of randomized controlled trials and quasi-experimental studies. RESULTS: Thirty-seven studies met the inclusion criteria and were synthesized in this systematic review. Details of intervention were divided into 3 groups: educational and psychoeducational programs, multidisciplinary approaches, and support and caregiver skill-building programs; 12 studies focused on different interventions affecting the QoL, 23 studies focused on the burden of stroke caregivers, and 20 studies focused on depression of stroke patients and their caregivers. CONCLUSION: The desired effectiveness of particular interventions was evident in the results, although conflicting findings have emerged. The study emphasizes the need for well-structured preliminary studies for each intervention type. More studies on interventions and outcomes might lead secondary researchers to conduct analyses to ensure the certainty of results.

Systematic review of burden&amp;quality of life in caregivers of children with schizophrenia (SyREN)

Abstract Background Schizophrenia is a chronic, disabling disorder that affects 23.6 million people worldwide, with patients often needing extensive assistance and care. Main caregivers are frequently family members who may present a reduced quality of life (QoL) due to the high-level burden of care. Literature mostly focuses on the burden caused by other mental disorders or by schizophrenia in both the adult and child population. We aim to assess the burden and QoL in caregivers of children and adolescents with schizophrenia. Methods We conducted a Systematic Review of articles published between 2013 and 2023 on MEDLINE, Scopus, Web of Science, APA PsycARTICLES, CINAHL. We included studies in which a validated instrument was used to measure the burden of caregiving and QoL for adult caregivers of children and adolescent schizophrenic patients. The results were reported following the PRISMA guidelines. Results We identified 1388 studies. We removed 610 duplicates. After screening 788 studies on title and abstract and 52 for full-text, we included one cross-sectional study in China based on the STROBE Checklist. Significant correlations between burden of care and schizophrenia severity, children’s age, period of care, education, sex, residence, and income were reported. Additionally, we screened 7 qualitative studies. Social stigma and struggle were the most frequently reported feelings, and financial burden was the most common external factor associated with a worse quality of life. Conclusions This review revealed a significant research gap in this field. This lack of focused research underscores the urgent need for targeted investigations into the experiences of caregivers of children and adolescents with schizophrenia. Addressing these knowledge gaps will improve support systems and interventions tailored to the unique needs of this population, such as disease-specific advisory, mental health services, social and financial support, and self-help groups. Key messages • We identified a research gap for burden and quality of life in informal caregivers of children with schizophrenia. Education, sex and income of caregivers relate to the burden of care. • Further research is needed to develop strategies to improve support systems and interventions tailored to the unique needs of this population.

The effect of visual education aimed at the basic needs of individuals with disabilities on the health literacy and life quality of caregivers

ABSTRACT The aim of this research is to evaluate the effect of visual education for the basic needs of people with disabilities on the health literacy and life quality of caregivers. The study sample comprised 268 caregivers evaluated in a pretest-posttest pattern. The data were collected using a Personal Information Form, the Health Literacy Scale, and the World Health Organization [WHO] Life Quality Scale-Short Form. Data were evaluated with the Wilcoxon test and Spearman correlation analysis. Following the education given to caregivers, an increase was determined in the Health Literacy Scale sub-dimension of information comprehension and in the WHO Life Quality Scale-Short Form sub-dimension of social relations. Thus it was seen that the visual education increased the health literacy and life quality of the caregivers.

Role Of Socioeconomics, Psychological State, and Attitude Toward Care Giving on Quality of Life of Dependent Patients’ Caregivers in the Northeast of Thailand

Background Caring for patients with dependency is a burden on primary caregivers, which impacts them economically, socially, and psychologically. The perception of caregiving and the psychological state associated with it further contribute to these effects. Objectives This cross-sectional analytical study aimed to study the socioeconomic and caregiving burden factors associated with the Quality of Life (QOL) of dependent patients’ caregivers in the Northeastern region of Thailand. Methodology A total of 1,335 dependent patients’ caregivers aged 18–59 years in the Northeastern Region of Thailand were selected by multistage random sampling to respond to a self-administered structured questionnaire. The Generalized Linear Mixed Model (GLMM) was performed to identify socioeconomic and caregiving burden factors associated with QOL while controlling the effects of covariates, presenting Adjusted Odds Ratio (AOR) and 95% Confidence Intervals (CI). Results Among 1,335 dependent patients’ caregivers, more than half of them had poor QOL (58.05%; 95% CI:39.28 - 44.65). Factors associated with poor QOL were age 46-59 years (AOR=4.30; 95% CI: 2.84-6.51, p-value&lt;0.001), insufficient financial status with debt (AOR=5.89; 95% CI: 3.85-9.01, p-value&lt;0.001), low caregiving knowledge level (AOR=2.43; 95% CI: 1.63-3.64, p-value&lt;0.001), average to low attitude caregiving level (AOR=4.45; 95% CI: 3.30-5.99, p-value &lt;0.001), and having depression (AOR = 3.57; 95% CI: 1.93-6.59, p-value&lt;0.001). Conclusion The findings from this study have important implications for healthcare practice and policy—interventions aimed at improving the QOL of caregivers.

Determinants of quality of life decrease in family caregivers of care-dependent patients: a longitudinal study.

Family caregivers of care-dependent patients experience a decline in their Quality of Life (QoL). However, the determinants contributing to this decrease in QoL are still not fully understood. Therefore, this study aimed to estimate prospectively the determinants contributing to decreased QoL among family caregivers of care-dependent patients. This longitudinal study involved 135 family caregivers in Brazil. Data were collected at baseline from October 2016 to August 2017, and at follow-up from December 2021 to July 2022. During both periods, we administered a questionnaire that covered sociodemographic, health, and lifestyle characteristics of the participants; the Barthel Index to assess the dependency level of the patients; and the WHOQOL-bref to assess the caregivers' QoL. Both caregivers and care-dependent patients were more frequently elderly (44.4% versus 74.6%), female (79.3% versus 61.5%), and had non-communicable disease (60.0% versus 94.3%) at baseline. Most patients experienced a worsening in their level of dependency (59.8%), while over a third of family caregivers (34.8%) reported a decline in their General Quality of Life Index. Eight determinants of decreased QoL were identified: four protective factors (religious faith, physical activity, sharing caregiving responsibilities, and sufficient sleep) and four risk factors (patient hospitalization in the past year, patient increased care dependency, older family caregiver age, and longer caregiving duration). Many factors influencing caregiver QoL are modifiable through intervention, underscoring the need for public policies to support family caregivers. Healthcare professionals can play a vital role in promoting protective factors and addressing risk factors to enhance caregiver QoL.

Quality of Life and Appraisal Factors of Patients with Advanced Cancer and Their Family Caregivers.

Few existing interventions have effectively improved the quality of life (QOL) for patients with advanced cancer and their caregivers, partly due to limited research on the factors associated with QOL. Guided by an adapted stress-coping model, this study aimed to examine the associations between the QOL of cancer patients and their caregivers and their primary and secondary appraisals. Primary appraisals involve perceptions and evaluations of advanced cancer and related caregiving, while secondary appraisals relate to their available resources and coping capabilities. Using multi-level modeling, we conducted a secondary analysis of the baseline data collected from a randomized clinical trial that examined the effects of a family-based, psychoeducational support program for patients with advanced cancer and their caregivers (N = 362 dyads). The appraisal variables hypothesized in the adapted stress-coping model explained 74.14% of the variance in the QOL of patients with advanced cancer and their caregivers when controlling for demographics and other disease-related variables. Better QOL in patients and caregivers was associated with less negative appraisals of illness/caregiving, less uncertainty and hopelessness, less avoidant coping strategies, more family support, more health behaviors, higher self-efficacy, and more active coping strategies. Our study highlights the significant impact that advanced cancer has on patients and their caregivers' perceptions, responses to the illness, and QOL. It also highlights that effective interventions may need to target illness/caregiving appraisals, uncertainty, hopelessness, family support, health behaviors, self-efficacy, and coping strategies tailored to patient and caregiver needs.

Determination of Health Concepts in β-Propeller Protein-Associated Neurodegeneration.

β-Propeller protein-associated neurodegeneration (BPAN) is a rare, X-linked condition caused by pathogenic variants in the WDR45 gene that result in a defect of autophagy. Classified as a disorder of neurodegeneration with brain iron accumulation, β-propeller protein-associated neurodegeneration is associated with severe neurologic impairments. With the anticipation of future therapeutic trials, this project characterizes the family's perspective of the impact of disease and defines Health Concepts (HC).Children with a molecularly confirmed diagnosis of β-propeller protein-associated neurodegeneration were enrolled in a prospective natural history study. We administered the Vineland Adaptive Behavior Scales-Third Edition and provided health-related quality of life questionnaires to 42 caregivers. Questionnaires included Pediatric Quality of Life Inventory-Generic Core and Pediatric Quality of Life Inventory-Family Impact modules, Caregiver Priorities and Child Health Index of Life with Disabilities, and Caregiver TBI-CareQoL.The Vineland Adaptive Behavior Scales-Third Edition (n = 42) captured the family's perspective that communication was more affected compared with socialization, activities of daily living (ADL), and motor skills (P < .0001, P < .0001, P = .0053, respectively). Similarly, on the Caregiver Priorities and Child Health Index of Life with Disabilities (n = 26), Pediatric Quality of Life Inventory-Generic Core (n = 27), CareQol (n = 26), and Pediatric Quality of Life Inventory-Family Impact (n = 27), communication abilities, as well as social functioning and activities of daily living, were noted to be most impacted.Through the use of standardized surveys and outcome assessments, we establish the effects of β-propeller protein-associated neurodegeneration on caregiver quality of life. Key health concepts identified by families included overall health, comfort, and communication. The identified HC will inform the future identification of concept of interest and selection of appropriate clinical outcome assessments through the administration of patient-reported outcomes.

Caring for Carers: Association between Care-giving and Quality of Life of Family Carers of Spinal Cord Injury Survivors in Pakistan

Caring for someone with a spinal cord injury (SCI) has always been a family endeavor in developed as well as developing countries like Pakistan. Majority of people with SCI need assistance of others to carry out daily life activities i.e., eating, self-care, transportation and this functional dependence of patients on their attendant affect Quality of Life (QOL) of caregivers. Present study was designed to find the relationship between caregiver burden, psychosocial factors and QOL among caregivers. Caregiver Burden Inventory-SCI and WHOQOL was used to measure study variables. Cross-sectional research design having purposive sampling technique was used to gather data from spinal units of various hospitals of Pakistan. Sample size includes N= 255 family caregivers of SCI patients. Correlation analyses were applied to find the relationship between psychosocial factors, caregiver burden and QOL. Results showed that caregiver burden was significantly negatively correlated with quality of life and positively correlated with care-giving hours, duration of injury, and number of helpers involved in care-giving process. Furthermore, female caregivers showed high level caregiver burden and low levels of quality of life as compared to male counterparts. Similarly, married persons scored higher on caregiver burden and whose patients had paraplegic nature of injury. In Pakistan, there are no respite care programs for carers, The abovementioned findings are helpful in planning psychotherapeutic interventions and tailored caregiver training programs to lessen the impact of caregiver burden on caregivers and to boost their quality of life.

Exploring Caregiver Quality of Life in Dementia: The Role of Mealtime and Care Recipient Factors

Informal caregivers play a critical role in supporting individuals with dementia, yet often face significant challenges that impact their own quality of life (QoL). This exploratory study investigates the multifaceted factors contributing to caregiver QoL, particularly focusing on care recipient factors including dysphagia, dietary restriction, dementia severity, and care recipient QoL. A total of 24 informal caregivers of persons with dementia (PWD) participated in an online survey assessing various factors believed to play a role in caregiver QoL including dysphagia severity, dietary restrictiveness, cognitive impairment, and caregiver QoL. Results revealed that increased degree of dietary restrictiveness, lower dementia symptomatology, and higher care recipient QoL were significant predictors of improved caregiver QoL. These findings highlight the complex interplay of factors influencing caregiver QoL and underscore the need for tailored interventions to enhance well-being in both caregivers and care recipients within community-based care settings.

Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers

BackgroundPatients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes.MethodsIn this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy.ResultsPatients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning.ConclusionsA mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing.Trial RegistrationClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007.

Impact of an Early Goals of Care Discussion on Patient Satisfaction and Quality of Life among Seriously Ill Patients Admitted to the Medical Wards – A Quality Improvement Project

Objectives: The objective of this study was to achieve integration of goals of care discussion (GOCD) as a routine part of assessment among seriously ill patients admitted to medical wards and assess its impact on patient satisfaction, caregiver satisfaction and quality of life (QOL). Materials and Methods: This was non-randomised before and after study – A quality improvement project involving three plan-do-study-act (PDSA) cycles each of 6 weeks duration. The study included a total of 60 patients and their caregivers admitted to the Internal Medicine Unit in a tertiary care hospital in South India. Junior residents from Internal Medicine were trained in conducting a GOCD through a face to face training session and through an online training program using capc.org modules. Through a process of three PDSA cycles, we introduced the documentation of GOCD as a routine part of the assessment of seriously ill patients and assessed its impact on QOL and patient satisfaction. Results: Following the introduction of GOCD, patient and caregiver satisfaction had a statistically significant improvement across the majority of the assessed domains, and there was an overall improvement in the mean World Health Organization QOL Brief Version QOL scores by 4.8% Conclusion: Among patients with serious illness, GOCD improved patient and caregiver satisfaction and QOL. Such conversations are essential to align the care delivery with patient preferences and help in providing patient-centred care.

Quality of life and associated factors among primary caregivers of children and adolescents with neurodevelopmental disorders attending public hospitals in Addis Ababa, Ethiopia: a cross-sectional study.

Neurodevelopmental disorders are a set of disorders that negatively affect the acquisition of skills in a variety of developmental domains, including motor function, learning, socialization, language and cognition. However, there is no information available on the standard of living of Ethiopian primary caregivers of children and adolescents with neurodevelopmental disorders. Therefore, this study aimed to assess the quality of life (QOL) and associated factors among primary caregivers of children and adolescents with neurodevelopmental disorders in Addis Ababa, Ethiopia. A cross-sectional study was conducted during 1-30 May 2022. Systematic random sampling was used to obtain 352 samples. QOL was measured using the WHO Quality of Life Brief. The gathered information was coded, entered into EpiData 4.6.0.2 and analyzed with SPSS version 26. Multiple linear regression analysis was used to identify the correlates of QOL and the strength of the correlation was measured by β coefficient with 95% CI. The mean score of the overall QOL was 62.61 with a SD of 5.17. The mean (±SD) scores for the physical health, psychological, environmental and social relationship domains of primary caregivers were 57.36±9.98, 66.98±9.39, 66.06±12.91 and 60.02±9.14, respectively. Age was significantly associated with physical domain (β=-0.25, 95% CI -0.43 to -0.07) and with environmental domain (β=-4.57, 95% CI -9.06 to -0.09). Being divorced/widowed was negatively associated with psychological health (β=-2.99, 95% CI -5.82 to -0.17) and social health (β=-0.62, 95% CI -1.33 to -0.10). The presence of medical illness was negatively associated with the physical health domain (β=-4.32, 95% CI -7.64 to -2.91) and the environmental domain (β=-3.11, 95% CI -5.71 to -0.51). Poor social support was negatively associated with psychological health (β=-3.25, 95% CI -5.89 to -0.61) and the social health domain (β=-3.39, 95% CI -11.3 to 4.6), and moderate social support (β=8.62, 95% CI 3.15 to 14.09) was positively associated with physical health. Depression (β=-6.32, 95% CI -11.96 to -0.67) and anxiety (β =-3.07, 95% CI -5.80 to -0.34) were negatively associated with physical health and the psychological health domain, respectively. The findings from this study indicate that all dimensions of QOL of primary caregivers of children and adolescents with neurodevelopmental disorders in this study setting were compromised. Being divorced or widowed, lack of formal education, age, average monthly income, poor social support, depression, anxiety and the presence of medical illness were factors associated with QOL in all domains. This requires integrating a bio-psychosocial perspective, a positive mental health strategy and pharmaceutical therapies to enhance QOL for caregivers of children and adolescents with neurodevelopmental disorders.