Risk Of Caregiver Burden Research Articles

Quality of life of families and siblings of children and adolescents with meningomyelocele.

Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children. One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires. Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables. Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

Virtual Respite for Family Caregivers

AbstractBackgroundThere are over 11 million family caregivers to individuals living with Alzheimer’s in the U.S. The risk of caregiver burden and the inaccessibility of institutional respite create a need for in‐home respite programs. This proof of concept study examined the feasibility of an in‐home virtual respite program.MethodFamily caregivers of individuals with mild dementia received up to six student delivered in‐home virtual respite visits over two months. Semi‐structured interviews were conducted with family caregivers and student participants following the visits. The qualitative data were analyzed using thematic analysis with three coders.ResultFamily caregivers reported that the virtual respite program allowed time to engage in self‐care activities such as rest, exercise, and social interaction.ConclusionThis novel intervention freed time for family caregivers to receive respite in a virtual format. A future randomized trial is needed to estimate the effect of the intervention on psychosocial and clinical outcomes.

Virtual Respite for Family Caregivers

AbstractBackgroundThere are over 11 million family caregivers to individuals living with Alzheimer’s in the U.S. The risk of caregiver burden and the inaccessibility of institutional respite create a need for in‐home respite programs. This proof of concept study examined the feasibility of an in‐home virtual respite program.MethodFamily caregivers of individuals with mild dementia received up to six student delivered in‐home virtual respite visits over two months. Semi‐structured interviews were conducted with family caregivers and student participants following the visits. The qualitative data were analyzed using thematic analysis with three coders.ResultFamily caregivers reported that the virtual respite program allowed time to engage in self‐care activities such as rest, exercise, and social interaction.ConclusionThis novel intervention freed time for family caregivers to receive respite in a virtual format. A future randomized trial is needed to estimate the effect of the intervention on psychosocial and clinical outcomes.

Perspectives of caregivers of older adults with acute myeloid leukemia during initial hypomethylating agents and venetoclax chemotherapy.

Older adults with AML commonly receive a hypomethylating agent (HMA) as first-line therapy. The addition of venetoclax (VEN) to HMAs has been shown to improve remission rates and overall survival. The use of combination therapy (HMA + VEN) requires frequent follow-up, results in longer infusion times, and likely increases caregiver responsibility at home. We describe experiences of informal caregivers (family/friends) providing care to older adults with AML receiving HMA + VEN. Fourteen caregivers of older adults with AML receiving HMA + VEN (September 2020 to September 2021) were recruited as part of a control group of an ongoing NIH-funded clinical trial. Semi-structured interviews were conducted to gain initial insight into caregiver experiences at the start of HMA + VEN treatment. Two researchers analyzed the data using thematic content analysis. Data saturation occurred when no new themes were found in subsequent interviews, but all interviews were coded and synthesized. Of the 14 caregivers interviewed, the majority were spouses (n = 10), female (n = 13), and aged 45 to 83 (median age 65). We identified five themes: (1) the impact of an AML diagnosis in older adulthood, (2) care recipient condition changes, (3) perspectives of caregiving roles and tasks, (4) factors influencing caregiving experiences, and (5) support system roles. Caregivers for older adults with AML report a range of experiences navigating health systems, caregiving responsibilities, and resource needs. The risk for caregiver burden and unmet needs should be addressed to improve caregivers' abilities to provide care.

Contextual Therapy for Couples who are Primary Caregivers for a Parent(s) with Alzheimer’s Disease

The number of individuals experiencing Alzheimer’s disease is increasing as the population ages. The majority of individuals experiencing Alzheimer’s disease receive care from a family member, most often a spouse or adult child. Adult child caregivers have unique needs and life situations that put them at increased risk for caregiver burden and burnout. While both individual therapy and family therapy have been used with family caregivers, little scholarship has explored the role of couples therapy in improving caregiver outcomes. This article explores contributing factors to adult child caregiver burden and applies contextual therapy to treat these problems in couples therapy. We use a clinical vignette to illustrate the application of fairness, balance, loyalty conflicts, and constructive/destructive entitlement to caregiving. In all, we identify common dynamics in couples wherein one or both partners are primary caregivers for parents with Alzheimer’s disease and provide clinical suggestions on how to assess and treat these challenges in couples therapy.

Predictors of Caregiver Burden in Huntington's Disease.

Huntington's disease (HD) is a genetic neurodegenerative condition that is characterized by cognitive, motor, and psychiatric dysfunction. The purpose of this study was to explore which disease characteristics influence caregiver burden in HD. Fifty participants with HD and 50 of their caregivers participated in the study at the University of South Florida. Participants were administered a neuropsychological battery, the Unified Huntington's Disease Rating Scale (UHDRS) motor exam, and the Frontal Systems Behavior Scale (FrSBe) self-report. Caregivers completed the Caregiving Appraisal Scale and the FrSBe family-report. There were significant correlations between caregiver burden and caregiver age and sex, UHDRS motor scores, cognitive functioning, and self and caregiver-reported FrSBe scores. The significant variables were entered into a regression model and explained 63.1% of the variance in caregiver burden scores. Caregiver age, cognitive functioning, and caregiver-reported FrSBe scores continued to be significant predictors of caregiver burden, whereas the other variables were no longer significant. There were significant relationships between caregiver burden, cognitive functioning, and frontally mediated behaviors, but not motor scores. The results suggest that possible interventions for caregivers may include education to caregivers on how to cope with apathy/executive dysfunction and cognitive decline. Caregiver age was associated with burden, with younger age being associated with increased burden when controlling for symptom severity. This has implications for this population in that HD typically has a younger age of onset than other neurodegenerative diseases and therefore, these caregivers may be particularly at risk for caregiver burden.

Caregivers of People With Disabilities: A Program to Enhance Wellness Self-Care.

Caregivers are a source of support for family members with disabilities. However, caregivers are at risk for caregiver burden, which can erode self-care skills and lead to poor physical and mental health outcomes. Caregiver Wellness Self-Care, developed to address that risk, is a 5-week group program in which participants learn about strategies that cultivate their inner resources, while connecting with others for support. Wellness, self-care, mindfulness, and yoga-based information and practices are taught in the sessions and included in participant handouts. Self-reflection and planning activities with facilitated discussions further support awareness and personal transformation. Designed by and for people providing care to an adult family member with a mental health disorder and a developmental/intellectual disability, the program was piloted three times. The current article describes the development of the program through caregiver involvement, participant and facilitator feedback, and implications for future efforts to build caregiver wellness self-care skills. Implications for nurses are highlighted. [Journal of Psychosocial Nursing and Mental Health Services, 59(5), 25-32.].

Post-stroke depression as a predictor of caregivers burden of acute ischemic stroke patients in China

Our aim was to explore the independent attribution of Post-stroke depression (PSD) to caregiver burden of acute ischemic stroke patients. A cross-sectional survey was performed with 271 acute ischemic stroke patients in the Huai-He Hospital and First People’s Hospital of Kaifeng City in China. PSD was assessed by Self-rating Depressive Scale, and caregiver burden was assessed by Zarit Caregiver Burden Interview. Clustered logistic regression was applied to identify the impact of PSD on caregiver burden. As results, female patients, normal muscle strength and PSD were associated with caregiver burden. PSD correlated with an independent influence of 17.2% on the risk of caregiver burden, The independent influence of PSD on caregiver burden was smaller than that of social-demographics of caregivers and clinical factors of stroke patients This study suggests that PSD may have a modest influence on caregiver burden.

Addressing the burden of stroke caregivers: a literature review.

To examine the empirical literature regarding the risk of burden experienced by the older adult caregiver of the stroke survivor. The scope of this review was limited to older adult family members caring for older adult stroke survivors as evidenced in the literature written between the years of 2009-2014. This article will explore published research within the past five years (2009-2014) that addresses the issue of burden among older adult caregivers of stroke survivors in addition to the implication for the changes needed within the nursing profession to mitigating the burden experienced by the caregiver. Many stroke survivors are in their 6th decade of life or older, with caregivers approximately the same age. This literature review specifically focuses on the role of nursing and the issue of caregiver burden. Literature Review. A review of the literature published between 2009-2014 related to the lived experience of caregivers of stroke survivors and the role of nursing related to mitigating caregiver burden. Numerous factors impact the lived experience of caregivers providing care for the stroke survivor. Assuming the role of caregiver has an inherent risk which can result in health compromises for the caregiver. It is the responsibility of the nurse to assess, design interventions and provide education to prepare the caregiver for the demands of the role. The literature review has shown that research regarding the risk of caregiver burden and the resulting health compromise is scarce. In addition, there is a lack of evidence-based nursing interventions aimed at assuaging the risk of caregiver burden. Caregiver stress culminating in burden is commonly a reason for the eventual institutionalisation of the stroke survivor. Critically assessing and providing for the physical, psychosocial and educational support needs of stroke caregivers will assist in mitigating the daily burden experienced by the caregiver. Caregiver burden often results in psychological and physical health compromise for the caregiver. This literature review will address the role of the caregiver and the responsibilities of nursing to meet the needs of the caregiver.

Impact of mental health and caregiver burden on family caregivers’ physical health

Caregivers providing care to chronically ill family members at home are potentially at risk for caregiver burden and declining physical and psychological health. This study aims to understand how family caregivers’ mental health and caregiver burden affects physical health simultaneously, controlling for factors such as age, education level, caring hours per day, and emotional, functional, and physical support systems used by caregivers. We recruited 388 caregivers from Kaohsiung and Pingtong region in Taiwan. Caregivers had to be 18 years or older and spend most of their time taking care of an ill family member at home. Mental health was assessed by the 12-item Chinese Health Questionnaire (CHQ-12) and burden was measured using a modified scale for caregiver's burden. Health status was assessed by self-perceived health (SPH), illness symptoms and the number of diagnosed chronic diseases. A high number of hours per day of caregiving was associated with low emotional support and SPH, poor mental health and high burden. Higher emotional support was associated with better mental health and fewer illness symptoms. Higher physical support was associated with poorer mental health, higher burden, a greater number of illness symptoms and chronic diseases, and a lower SPH score. Hours per day of caregiving, and use of emotional, functional, and physical support were associated with mental health, and the hours per day of caregiving and use of physical support were predictors of burden. Mental health and burden were significantly associated with caregivers’ health problems simultaneously. Our results show the important influence of mental health on caregivers’ physical health. Interventions for caregivers need to target health in a holistic way.

Predictors of burden and depression among nursing home family caregivers

This study identified predictors of caregiver burden and depression among family caregivers to nursing home residents. Pearlin's stress process model was used as a theoretical framework. Structured interviews were conducted with 103 family caregivers to nursing home residents. Multiple regression analysis was used to determine the relationship of contextual variables (caregiver age, income, health), caregiving stressors (resident's memory and behaviour problems, caregiving tasks, satisfaction with nursing home), and social support with caregiver burden and depression. All three domains of predictor variables were significantly related to caregiver burden. Only contextual factors and social support predicted depression. Depression levels were elevated in this sample, with the mean falling above the cutoff for clinical depression. Family members of nursing home residents are at risk for caregiver burden and depression and each outcome has unique predictors in this population. Understanding factors associated with greater burden and depression can guide nursing home staff and mental health professionals in working with family members. Older family members, those in poor physical health or with low incomes are at highest risk, particularly for depression; while families of more impaired residents are at higher risk for burden. Social support is an important factor in alleviating burden and promoting positive mental health.