Impact Of Caregiving Research Articles

Mental health impacts of spousal caregiving intensity in the US.

In the US, spouses are a major source of informal care for older adults and, therefore, key to the US national strategy to provide long-term care to the growing population of older adults. Understanding the mental health impacts of spousal caregiving is therefore critically important. Existing studies on the topic have often been limited by methodological limitations, and most overlook the role of caregiving intensity. In this study, we assess the impact of providing different intensities of caregiving to a spouse on mental health outcomes using data from the Health and Retirement Study. We address the endogeneity of the decision to provide different caregiving intensities using an augmented inverse probability weighted (AIPW) estimator adapted to handle multivalued treatments. We check the robustness of our estimates to the AIPW's identifying assumptions by re-estimating the model using a dynamic fixed effects estimator. We find strong evidence that becoming a caregiver is associated with worsened mental health outcomes for women, while the evidence for men is weaker. When disaggregating by caregiving intensity, we find that transitions into high-intensity caregiving lead to large increases in depression symptoms and the probability of exhibiting major depression for both men and women. The overall mental health impact of transiting into caregiving is driven almost exclusively by the negative impact of high-intensity caregiving, as transitions into low- and moderate-intensity caregiving are not associated with worsening mental health in most specifications. This study provides timely insights that can inform the targeting of long-term care policies and programs aimed at supporting family caregivers of older adults.

Perceived Importance of Types and Characteristics of Support to Informal Caregivers among Spouse Caregivers of Persons with Dementia in Sweden: A Cross-Sectional Questionnaire-Based Study.

Informal caregivers play a crucial role in the care of individuals with dementia, and their caregiving may significantly impact their own health and well-being. This cross-sectional survey study focuses on the perceived importance of various types and characteristics of formal support in a convenience sample of caregivers aged 65 years or older (N = 175) caring for a spouse with dementia. Participants completed a questionnaire containing 17 items describing different types of support and 12 items describing different characteristics of support, rating their importance. The questionnaire also contained questions on various caregiving-related factors. Principle components analysis (PCA) was carried out on the importance ratings, separately, on the types of support items and the characteristics of support items. Each PCA produced three components. For types of support, they were Proficiency and Opportunity, Supportive Structures, Flexible Counselling. For characteristics of support, they included Respectful and Competent, Timely Support, and Accessible and Acceptable. The three characteristics of the support components all had higher mean importance ratings than the three types of support components. The content of some components indicated that while spouse caregivers rate support for their caregiving needs as important, they may not always differentiate their own needs from those of their partner with dementia. The negative impact of caregiving was the factor most strongly and consistently associated with the components' importance ratings. This study emphasizes the need for health and social care providers to address the unique needs of spouse caregivers while simultaneously ensuring the delivery of quality care for individuals with dementia.

SURVEY ON CAREGIVERS' BURDEN OF CARE PATIENTS WITH CHRONIC STROKE AND CONSIDERATIONS ON THE ROLE OF THEPHYSIOTHERAPIST

Background: Therole of caregivers in the rehabilitation process is crucial, yet the impact of caregiving on their well-beingis not fully understood.This study aims to analyze the psycho-physical load on caregivers of chronic stroke patients, evaluate the variables affecting their health, and assess the significance of physiotherapists in improving patient rehabilitation outcomes. Materials: A sample of 30 chronic strokepatients and their caregivers involving home-based rehabilitation services was examined over eight weeks. The study utilized various scales such as the Short Form Health Survey 36 (SF-36), Barthel Index, Stroke Impact Scale 3.0, Modified Rankin Scale, and Caregiver Burden Inventory to assess the health status of patients and the burden on caregivers before and after the intervention. Results: The study found significant improvements in patient health metrics (SF-36, Barthel Index, Stroke Impact Scale, Modified Rankin Scale) post-rehabilitation. Similarly, a notable reduction in caregiver burden was observed, highlighting the effectiveness of targeted physiotherapy interventions in alleviating the psycho-physical stress on caregivers.

Family Management of Hypertension in Brazil: A Cross-Sectional Study.

In Brazil, research indicates that primary family members are the main source of support for individuals with chronic conditions such as hypertension (HTN). The burden of caregiving not only hinders effective HTN management but can also cause stress and anxiety, potentially leading to HTN in caregivers. Despite this, few studies have explored the impact of caregiving on these family members. Aims of the study were to: (1) Describe the prevalence of blood pressure (BP) control in family members of individuals with HTN; (2) identify family member perspectives on facilitators and barriers to HTN management; and (3) identify influences that help or interfere with family member functioning (levels of stress, quality of life [QOL], and caregiver burden). This descriptive, cross-sectional study included 213 family members randomly selected from 3 Family Health Strategy units. Family members were largely female (n = 143; 67.1%); the mean age was 60.1 years (SD ± 17.02) and 42.6% (n = 96) had less than a high school education. The three most important facilitators and barriers were related to medication, medical visits, healthy eating, physical activity, and stress. The mean systolic BP was 132.7 (SD ± 21.9) mmHg and a diastolic BP of 85.9 (SD ± 18.1) mmHg with 120 (56.3%) of family members classified as having normal BP. In regard to family member contributions to the self-care of the individual with HTN, family members displayed low levels of self-care maintenance (n = 148; 69.4%) and management (n = 47; 71.2%) support, while a slight majority (n = 114; 53.5%) had adequate levels of self-care confidence in supporting the individual with HTN. Family members (n = 189; 88.8%) showed moderate-to-high levels of perceived stress, but good physical (n = 189; 88.7%) and mental QOL (n = 196; 92%) and low levels of caregiver burden (n = 113; 53.1%). A variety of contextual sociocultural influences were associated with the outcomes under study. Family-based interventions are urgently needed to address the inadequate management of HTN.

Caregiving-Related Depression Increases Neuroinflammation in Spousal Caregivers to Individuals with Cognitive Impairment: A Longitudinal Study

Abstract Background The caregiving burden of the spousal caregivers (SCGs) to individuals with cognitive impairment poses public health challenges with adverse psychosocial and physiological effects. However, few studies have investigated the neurobiological impact of caregiving, particularly through the investigation of neuroinflammation and neurodegeneration. Methods Using data from a longitudinal cohort at Chungnam National University Hospital, the relationship between caregiving burden, neuroinflammation and neurodegeneration was examined in 38 older adult couples over a 16-month period. Caregiving burden was assessed through a multifaceted approach. For factors related to the care recipient, we assessed cognitive function and neuropsychiatric symptoms. Factors regarding the SCGs included the measurement of perceived depression. Glial fibrillary acidic protein (GFAP) was used as a plasma biomarker for neuroinflammation and neurofilament light chain (NfL) for neurodegeneration. Regression analyses were adjusted for age, sex, apolipoprotein E status, follow-up interval, vascular risk factors, and physical activity. Results Changes in depression among SCGs were significantly correlated with increased GFAP levels (p = 0.003), indicating that greater depressive symptoms during caregiving are associated with increased neuroinflammation. In contrast, no significant correlations were found between changes in cognitive function or neuropsychiatric symptoms in care recipients and the plasma biomarker levels of SCGs. Additionally, there was no significant association between changes in depression and NfL levels in SCGs. Conclusions The psychological stress experienced by SCGs while caring for partners with cognitive impairment actively contributes to neuroinflammation, a well-known risk factor for various diseases. This study emphasizes the need to address psychological stress experienced by older adult caregivers.

African American Family Caregivers' Experiences and Mental Health: A Convergent Mixed-Methods Study.

Caregiving in the African American community is informed by strong cultural expectations but may be associated with negative experiences and poor mental health outcomes. The purpose of this convergent mixed-methods study is to understand the relationship between caregiving experiences and mental health and explore stress management strategies in African American family caregivers of adults with chronic or disabling conditions. African American family caregivers (N = 100) were recruited using community-engaged methods and completed a sociodemographic questionnaire, the Caregiver Reaction Assessment scale, and the Center for Epidemiologic Studies Depression (CES-D-10) Scale. A subsample (n = 24) participated in semi-structured interviews. Data were analyzed using linear regression and content analysis. A matrix was developed to integrate quantitative and qualitative results. Participants were on average 59 years old. Most were women and provided care to a parent. Lack of family support (B = 1.37, P = .03) and impact of caregiving on caregivers' finances (B = 1.74, P = .004), schedule (B = 2.92, P < .001), and health (B = 3.26, P < .001) were associated with depressive symptoms and were reported as stressful experiences. Negative interactions with the care recipient and caring for multiple people emerged as other sources of stress. Participants used independent and interpersonal coping strategies, as well as strategies to facilitate their caregiving role to reduce their stress. Values of reciprocity, limited use of community-based resources, and mental health stigma emerged as important cultural considerations. Our findings suggest the need for culturally-sensitive interventions to improve communication and care coordination within African American family caregiving networks and educational programs about mental health and caregiving resources endorsed by trusted community sources.

Mechanisms Underlying the Use of Abusive and Neglectful Behaviors in Dementia Caregiving: The Role of Caregiver Mental Health.

In dementia family caregiving, caregiver psychopathology has been frequently identified as a possible risk factor for the use of physically abusive, psychologically abusive, and neglectful behaviors toward care recipients. Yet, the mechanistic role of psychopathology in the use of these behaviors is not understood. The purpose of the current study is to determine the role of caregiver mental health in their daily risk of engaging in physically and psychologically aggressive and neglectful behaviors toward their care recipient with dementia. We used an intensive longitudinal design to survey family caregivers daily over 21 days. Using generalized linear mixed models, we evaluated the differential impact of caregivers' (N = 453) experience of major depression and generalized anxiety disorders measured at baseline versus 9,513 daily ratings of depressive and anxiety symptom severity, and interactions across levels, on the daily odds of engaging in physically abusive, psychologically abusive, and neglectful behaviors. Caregivers with clinically significant depression or anxiety at baseline had higher daily odds of engaging in each type of abusive and neglectful behavior. Worsened depressive symptoms (compared to individuals' average across all days) on a given day were associated with increased odds of engaging in psychologically and physically aggressive behaviors on the same day. Worsened anxiety symptoms on a given day were associated with increased odds of psychologically aggressive and neglectful behaviors. A key finding was lack of a significant interaction effect between depression and anxiety disorders and mental health symptomology on the daily odds of engaging in abusive and neglectful behaviors. This finding indicates that daily depressive and anxiety symptoms are generalizable intervention targets across the family caregiver population and do not only increase risk among family caregivers with depressive and anxiety disorders. [Research in Gerontological Nursing, 17(5), 227-236.].

Impact of caregiving on frailty in older spousal caregivers: A retrospective cohort study

Older spousal caregivers bear the dual burden of managing health changes and caring for their partners. This study aimed to investigate the association between spousal caregiving and frailty in older adults. A retrospective cohort study with a 4-year follow-up was conducted using seven waves of data from the Health and Retirement Study (2006-2018). The mean age of participants was 65.1 years. A significant correlation was found between spousal caregiving and frailty increase. Multilevel analysis demonstrated a significant difference in the changes in frailty index over 12 years between caregivers and non-caregivers. This study uncovered a significant association between spousal caregiving and frailty in older adults, suggesting that becoming a spousal caregiver is not only linked to higher levels of frailty but also accelerates its progression. Healthcare providers can tailor support services to assist caregivers in managing challenges and promoting healthy aging.

The impact of a primary brain tumor diagnosis on caregivers: Insights from the patients’ perspective

PurposeThe diagnosis of a primary brain tumor (PBT) causes significant distress for the caregiver-patient dyad, warranting increased supportive care intervention. Although researchers have previously assessed caregivers’ perceptions of their own supportive care needs, no study to date has identified how patients perceive the caregiving experience and/or patients’ recommendations for integrating supportive care of caregivers in neuro-oncology. This qualitative study examined caregiver distress as well as caregiver supportive care needs from the patients’ perspective to inform future intervention development.MethodsAdults with PBT (N = 15; Mage = 45; 53% female; 93% White) were divided into four, 90-min focus groups moderated by a clinical neuropsychologist. Patients responded to semi-structured interview questions regarding various supportive care needs throughout the course of disease. Each discussion was transcribed and coded using thematic content analysis and NVivo software. Inter-rater reliability was excellent (MKappa = 0.92, range = 0.85–0.93).ResultsSeven distinct codes related to PBT caregivers emerged and were classified into two broader themes: Caregiver Impact (47% of coded content) and Caregiver Support (53% of coded content). Caregiver Impact refers to patients’ perspective of the practical and emotional demands of caregiving. Under Caregiver Support, patients cited a strong need for increased support of caregivers, including bereavement care, individual psychotherapy, and joint caregiver-patient dyad sessions.ConclusionPatients with PBT expressed profound concerns regarding the demands of caregiving and its impact on the well-being of their loved ones. Findings emphasize the need for comprehensive dyadic support in neuro-oncology throughout the disease trajectory to enhance the overall quality-of-life for both patients and their caregivers.

Healthcare Hardship of Adult Children Taking Care of Aging Parents.

Caring for aging parents is fulfilling for adult children but comes at the cost of impacting their health and finances. Employing Bronfenbrenner's bioecological model, this study examines the mediating role of healthcare hardship in the association between caregiving and health, while also investigating the sources of support that could mitigate the adverse effects of caregiving. Using the Survey of Health Retirement in Europe, the study reveals that while there is no sufficient evidence for a direct impact of caregiving on health through healthcare hardship, there is a significant link between caregiving and healthcare hardship. Additionally, having a support system is associated with reduced healthcare hardship. Notably, men seem to benefit more from social support compared to women. The study indicates that adult children make sacrifices, risking their own well-being to care for their parents. It emphasizes the importance of a strong support network to mitigate these negative caregiving effects.

2218 Experience of family caregivers for older patients with delirium: a qualitative study

Abstract Background Delirium is associated with psychological and cognitive complications that have impacts beyond the patients. Although family members and carers can play a significant role in the management and recognition of delirium, there is limited research on the experience of family caregivers in the context of delirium. This study aims to explore the needs and experiences of family caregivers for a person with delirium and offer suggestions to support them. Method A qualitative interview study with family caregivers of persons with delirium. Data were analysed using an abductive analysis approach. Results Fourteen family caregivers were interviewed. Carers explained their feeling of responsibility to support their loved ones with delirium, however, they perceived their caregiving role negatively because of increasing demands and the lack of sufficient support. Carers attributed their emotional exhaustion and distress to the onset of delirium, change in the personality of the person with delirium, confusion and progression of delirium. Additionally, carers indicated the negative impact of caregiving on the quality of the relationship between them and person with delirium. This highlights the need to enhance the support provided to carers to mitigate the emotional and relationship impact of caregiving on the carer. We identified the needs of carers for people with delirium including: education on delirium, reassurance, information on care pathways and support from formal carers to take breaks. Conclusions Viable solutions to assist family caregivers include more support for the carer in formulating care plans for people with delirium, the development of support groups for family caregivers of people with delirium, and a case worker. These solutions may help to decrease re-hospitalisation and admission to care homes. Future research should focus on approaches to better support carers of people with delirium, and to shift the care plan from person-centred into person and family-centred approach.

Operational Mechanisms of Peer Support Groups and Support for Caregivers of People Living with Serious Mental Illness.

The challenges faced by caregivers of people living with serious mental illness in Canada are well documented in the literature including emotional distress, financial strain, social isolation, and concerns about their physical health following the impact of caregiving. Peer support programs (including peer support groups) emerged as a promising method to attempt to address these challenges. While there is evidence on the positive impacts of peer support groups in providing support for caregivers, the mechanisms by which peer support groups operate and influence support for caregivers of people living with serious mental illness are less understood. This qualitative study took on a co-designed participatory research approach. Fifteen adult caregivers of people living with serious mental illness across Canada were engaged through key informant interviews that lasted for 45-60min each. A thematic analysis was carried out to help understand the operational mechanisms of peer support groups in influencing support for caregivers. The key informant interviews allowed for the identification and description of the following operational mechanisms that influenced the support caregivers received from peer support groups: (1) Group dynamics; (2) Messaging/content; (3) Equity and inclusion, (4) Group philosophy; and (5) Privacy concerns. Findings from this study showed that caregivers identified a number of operational mechanisms of peer support groups that explained how they felt supported when they participated in peer support groups. Among other operational mechanisms, group dynamics in terms of the gathering of caregivers of different age brackets and varying caregiving experience negatively influenced the peer support experience of caregivers. This pointed to the need for group dynamics that consider close age ranges and similar caregiving experience during group meetings to enhance support for caregivers. Caregivers also identified a gap in equity and inclusion in peer support groups that could have otherwise enriched their experience and enhanced the support they looked to receive from the group. Practical examples to enhance equity and inclusion include promoting active listening, using inclusive language, encouraging diverse representation and asking for feedback from peer support group members. While peer support groups in Canada exist independently of one another, it may help to consolidate evidence-based recommendations in the operational mechanisms of these groups, for the benefit of caregivers who turn to these groups for support, having been left on their own by an otherwise fractured mental health system.

Novel Framework of Financial Hardship in Childhood Cancer: Incorporating Stakeholder Perspectives.

Although financial hardship in childhood cancer contributes to poor outcomes, no standardized tool to assess its impact exists. Existing methods are heterogeneous and designed using high-income country (HIC), adult perspectives. This project aimed to construct a stakeholder-informed conceptual framework of financial hardship in childhood cancer with global relevancy. Group concept mapping, a participatory mixed-methods approach, was used. Participants were parents or caregivers of a child with cancer, childhood cancer survivors, and clinical or nonclinical support personnel, fluent in English, Spanish, or Portuguese. A representative panel established a comprehensive list of relevant items. Participants individually sorted these items into concepts and then rated each item for impact using a four-point Likert scale. Multidimensional scaling and hierarchical cluster analysis identified concepts. Descriptive statistics were calculated for impact ratings. One fourth (21/80) of participants were parents/caregivers or childhood cancer survivors. Participants worked in clinical (44/80), charity/volunteer (27/80), and other nonclinical (13/80) roles. Of the 41 represented countries, 78.0% (32) were low- and middle-income countries (LMICs). Conceptual themes spanned six distinct clusters: medical, nonmedical, assistance and support, treatment impact, family impact, and caregiver impact. These were distinct in composition compared with an existing framework for adult oncology. Caregiver impact (mean, 3.39) and treatment impact (mean, 3.29) were the highest rated clusters, and impact ratings were higher in LMICs compared with HICs. We developed a framework for financial hardship in childhood cancer that reflects the voices of stakeholders, including parents and caregivers, from diverse global contexts. The findings lay a foundation for the development and validation of tools to systematically assess financial hardship in families of children with cancer and inform effective policies and interventions.

Navigating the Unique Challenges of Caregiving for Children with Rare Diseases: Are the Care Experiences of All Caregivers the Same? A Focus on Life-Limiting Rare Diseases.

Background: Caregiving experiences in rare diseases (RDs) vary based on factors such as specific clinical entity, disease severity, the child's age, and available support and resources, leading to challenges that significantly impact caregivers' lives. This study investigates whether caregivers of children with different RDs encounter varied aspects of care. Methods: This study was conducted as a self-administered, anonymous, computer-assisted online survey, focusing on the challenges of caregiving for children with RDs. Questions covered aspects such as information availability on RDs, diagnostic processes, modern treatment accessibility, family physicians and specialists, the impact of caregiving on personal life, family dynamics, and financial challenges. To achieve our study objectives, we categorized caregivers of children with RDs into two groups to compare various aspects of caregiving: caregivers of children with phenylketonuria (PKU) (n = 175) and those caring for children with life-limiting rare diseases (LLRD) (n = 226). Results: Caregivers of children with LLRD reported greater emotional challenges, personal sacrifices, and financial burdens compared to caregivers of children with PKU. Significant differences included heightened emotional distress, more frequent conflicts, and lower assessments of healthcare support among LLRD caregivers. Although family support ratings were similar between the groups, perceptions of financial concerns and interactions with the healthcare system varied significantly. Conclusions: This study, representing the inaugural systematic comparison of specific caregiver cohorts overseeing children with RDs across a substantial sample size, provides valuable insights. The findings lay a crucial foundation for precisely tailoring assistance and support initiatives to meet the unique needs of caregivers facing various RDs in diverse contexts.

The Social and Financial Burden on Families of Type 1 Diabetic Pediatric Patients in Madinah Region, Saudi Arabia.

Caregivers and families play an essential role in managing and caring for type 1 diabetes mellitus (T1DM) pediatric patients. However, caregiving is usually associated with social and financial burdens. This study assesses the burden and underlying social and financial factors among Saudi caregivers of pediatric patients with T1DM. A cross-sectional study was conducted among caregivers and families of T1DM pediatric patients attending the Diabetic Center at King Fahad Hospital (KFH) and the Diabetic Center at King Salman Bin Abdulaziz Medical City (KSAMC)in Al-Madinah City, Kingdom of Saudi Arabia (KSA) from January 2024 to June 2024. The data collection was done using the Zarit Burden Questionnaire and the Caregiver Care Cost Assessment Questionnaire. The study surveyed 376 participants, primarily females (N = 285, 75.8%)and married (N = 317, 84.3%), with a majority aged between 18 and 47 years (N = 322, 85.6%). The burden experienced by families with T1DM pediatric patients was moderate, with a mean total burden level score of 27.8 ± 16.3. For those employed, most reported working as usual (N = 107, 81.1%), with most spending less than two hours on care weekly (N = 76, 57.6%). A significant association was found between the financial impact of caregiving on saving, spending, and general financial stress and social burden (p < 0.01). The findings show a moderate burden faced by caretakers of T1DM pediatric patients, with a strong correlation between the financial impact of caregiving on saving, spending, and general financial stress and burden level. The findings also highlight the significant impact of caregiving on the financial stress and lifestyle changes that caregivers endure.

Caring for autism in Ghana: exploring the psychological impact and coping strategies of caregivers

Caring for autism in Ghana: exploring the psychological impact and coping strategies of caregivers

Gender Inequalities of Health and Quality of Life in Informal Caregivers in Spain: Protocol for the Longitudinal and Multicenter CUIDAR-SE Study.

The aging population and increased disability prevalence in Spain have heightened the demand for long-term care. Informal caregiving, primarily performed by women, plays a crucial role in this scenario. This protocol outlines the CUIDAR-SE study, focusing on the gender-specific impact of informal caregiving on health and quality of life among caregivers in Andalusia and the Basque Country from 2013 to 2024. This study aims to analyze the gender differences in health and quality of life indicators of informal caregivers residing in 2 Spanish autonomous communities (Granada, Andalusia, and Gipuzkoa; Basque Country) and their evolution over time, in relation to the characteristics of caregivers, the caregiving situation, and support received. The CUIDAR-SE study uses a longitudinal, multicenter design across 3 phases, tracking health and quality of life indicators among informal caregivers. Using a questionnaire adapted to the Spanish context that uses validated scales and multilevel analysis, the research captures changes in caregivers' experiences amid societal crises, notably the 2008 economic crisis and the COVID-19 pandemic. A multistage randomized cluster sampling technique is used to minimize study design effects. Funding for the CUIDAR-SE study was in 3 phases starting in January 2013, 2017, and 2021, spanning a 10-year period. Data collection commenced in 2013 and continued annually, except for 2016 and 2020 due to financial and pandemic-related challenges. As of March 2024, a total of 1294 participants have been enrolled, with data collection ongoing for 2023. Initial data analysis focused on gender disparities in caregiver health, quality of life, burden, perceived needs, and received support, with results from phase I published. Currently, analysis is ongoing for phases II and III, as well as longitudinal analysis across all phases. This protocol aims to provide comprehensive insights into caregiving dynamics and caregivers' experiences over time, as well as understand the role of caregiving on gender inequality in health, considering regional variations. Despite limitations in participant recruitment, focusing on registered caregivers, the study offers a detailed exploration of the health impacts of caregiving in Spain. The incorporation of a gender perspective and the examination of diverse contextual factors enrich the study's depth, contributing significantly to the discourse on caregiving health complexities in Spain. DERR1-10.2196/58440.

Impact of caregiving on mental, self-rated, and physical health: evidence from the China health and retirement longitudinal study.

Given the escalating demand for care services, understanding the impact of informal caregiving, providing unpaid care for family members, on own health is essential. This study longitudinally analyzed the association of caregiving (and different caregiver types) with mental, physical, and self-rated health. Urban-rural, gender, and employment heterogeneity were further investigated. Based on three-wave data (2011, 2013, and 2018) from the China Health and Retirement Longitudinal Study, we used growth curve models to assess the impact of informal caregiving (providing care to family members) and caregiver types (caregivers to grandchildren, parents, spouses, or multiple family members) on three health outcomes (depressive symptoms, self-rated health, and activities of daily living limitations). Our study included 13,377 individuals. Results showed a negative correlation of caregiving with mental, physical, and self-rated health. Compared to noncaregivers, spousal caregivers and multiple caregivers were both associated with worsening mental, self-rated, and physical health. In contrast, adult child caregivers were only negatively associated with mental health, and grandparent caregiving did not significantly affect any health outcomes. Further heterogeneity analysis showed that gender did not moderate the relationship between caregiving and health, whereas the negative association between caregiving and health was more pronounced among the rural population and those employed in agriculture. Findings from the present study suggest that caregiving is detrimental to health, and recommend considering caregiver type when examining caregiving and health. These findings have vital implications for policymakers in addressing the challenges of structuring and implementing a sustainable informal care system.

Capturing the perspectives of African American informal dementia caregivers: a phenomenological study

ABSTRACT Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers’ experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers’ experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

Supporting Individuals With an Acquired Brain Injury: An Interpretative Phenomenological Study Exploring the Everyday Lives of Caregivers.

Acquired brain injury (ABI) is one of the most common causes of disability and death globally. Support from informal caregivers is critical to the well-being and quality of life of people with ABI and supports the sustainability of global health and social care systems. This study presents an in-depth qualitative analysis of the experiences of eight British informal caregivers supporting someone with ABI. Semi-structured interviews were conducted with narratives transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Three superordinate themes were generated: making sense of brain injury; being consumed by caregiving; and, the changing self. These data highlight the impact of caregiving on the caregiver's illness perceptions and sense of self. By identifying negative and positive changes in the caregiver's sense of self, and dilemmas regarding the care recipient's behaviour, we address less understood aspects of caregiver experiences. Caregiving can pose both challenges to the caregiver's sense of identity and an opportunity for self-growth. Some caregivers exhibit resilience throughout their journey, with post-traumatic growth more apparent in the later stages of caregiving. Illness perceptions shape caregiver well-being and family dynamics and indicate the need to address stigmatisation and discrimination faced by ABI survivors and caregivers. Although some caregivers acquired positive meaning and enrichment from their caregiving, previously described challenges of ABI caregiving are supported. Overall, our findings support the need for timely psychological/mental health support for caregivers, caregiver education, and the provision of short breaks from caregiving.