Family Caregivers Of Individuals Research Articles

Exploring Caregiver Burden in Alzheimer's Disease: The Predictive Role Of Psychological Distress

Background Alzheimer's Disease [AD], the most prevalent form of dementia, is on the rise in terms of its prevalence. Individuals affected by this condition typically require extensive care across all aspects of daily living. The mental well-being of caregivers for those with dementia stands as a significant public concern. Therefore, the current study aimed to investigate the association between the burden of caregiving and the psychological distress experienced by family caregivers of individuals with AD. Methods This cross-sectional study employed a census method and involved the participation of 150 caregivers of Alzheimer's patients in Shahroud, Iran. To assess the eligibility of family caregivers, the inclusion criteria comprised minimal literacy in reading and writing and at least six months of care for an individual with AD.. Exclusion criteria included being a formal caregiver or employed in healthcare, having mental disorders, or using neuroleptic drugs among family caregivers. Data collection tools consisted of the Zarit Care Burden Inventory [ZBI] and Lovibond's Depression, Anxiety, and Stress Scale [DASS-21]. Information was gathered online and through self-reporting, followed by analysis using descriptive statistics [frequency, percentage, mean, and standard deviation], as well as inferential statistical tests [multivariate linear regression]. Results In this study, the mean scores for caregiver burden, anxiety, stress, and depression were 28.09 ±13.01, 4.50 ±4.53, 8.12 ±4.98, and 4.69 ± 4.86, respectively. The study's findings revealed that with each additional hour spent on daily patient care, the burden score for caregivers increased by 0.327 units [p=0.025, β=0.327]. Furthermore, for every one-unit rise in stress [p<0.001, β=1.087] and depression scores [p=0.015, β=0.671], the burden score also increased by 1.087 and 0.671 units, respectively. Conclusion Caregivers of individuals with AD experienced notable levels of caregiving burden, particularly correlated with the duration of daily patient care and the manifestation of stress and depression symptoms. Hence, the study suggests the implementation of tailored interventions, such as psychoeducational programs, to provide vital support for these individuals.

Promoting Spiritual Coping of Family Caregivers of an Adult Relative with Severe Mental Illness: Development and Test of a Nursing Intervention.

Severe mental illness disrupts daily functioning, burdening family caregivers, who often adopt spiritual coping strategies. With comprehensive skills, mental health nurses can promote well-being and mental health. The aim is to develop and test the nursing intervention "promoting spiritual coping" in the family caregivers of home-dwelling people with mental illness. This study was conducted in two distinct stages. Initially, the intervention was developed according to the first phase of the Framework for Developing and Evaluating Complex Interventions. Secondly, the intervention protocol was tested in a mixed-method pilot study. An intervention protocol was developed and tested on ten family caregivers. The intervention comprised three sessions, and before-and-after assessments were conducted. Significant improvements were observed in the outcomes, with caregivers expressing that discussing spirituality and religiosity benefited them. This intervention prioritized the therapeutic relationship of the nurses and family caregivers. The intervention "promoting spiritual coping" was created and evaluated as a suitable approach for mental health nurses to use in a psychotherapeutic context with family caregivers of individuals with mental illness.

Randomized controlled trial of a positive emotion regulation intervention to reduce stress in family caregivers of individuals with Alzheimer’s disease: protocol and design for the LEAF 2.0 study

BackgroundCaring for a loved one with Alzheimer’s disease can be stressful, resulting in poorer emotional and physical health among family caregivers. Although supportive resources for caregivers are available, distance, caregiver health, and the daily demands of caregiving are barriers to access. Based on research demonstrating the importance of positive emotions in coping with stress, our previous trial showed that dementia caregivers who participated in facilitated, web-based delivery of a positive emotion regulation intervention called LEAF (Life Enhancing Activities for Family caregivers) experienced increased positive emotion and decreased depression and anxiety. Building on this evidence, the LEAF 2.0 study aims to test whether web-based, self-guided delivery can confer similar benefits for caregivers of individuals with Alzheimer’s disease.MethodsThis paper presents the design and methods for LEAF 2.0, a 3-arm web-based randomized controlled trial (N = 500) in which family caregivers of patients with Alzheimer’s disease (AD) are randomized to (1) the LEAF intervention facilitated remotely via the web (N = 200), (2) the LEAF intervention self-guided online (N = 200), or (3) an emotion reporting control (N = 100), which then crosses over to the intervention after approximately 6 months, half to the facilitated arm and half to the self-guided arm. We aim to (1) compare the effect of the facilitated and self-guided LEAF positive emotion interventions to an emotion reporting control condition on AD caregiver well-being (positive emotion, depression, anxiety, and perceived stress) and secondary outcomes (caregiving burden, caregiving self-efficacy, positive aspects of caregiving, quality of care, and AD patient quality of life); (2) assess whether effects are mediated by improvements in positive emotion or other aspects of caregiver well-being; and (3) test whether caregiver age or gender or the care recipient’s dementia severity moderates the effects of the intervention.DiscussionIf demonstrated to be effective, LEAF can be widely disseminated and ultimately have a significant impact on the stress experienced by AD caregivers and the well-being of people living with Alzheimer’s disease.Trial RegistrationClinicalTrials.gov NCT03610698.

Challenges Faced by Family Caregivers of Patients with Spinal Cord Injury

Background: Spinal Cord Injury (SCI) presents significant challenges not only to the individuals directly affected but also to their family caregivers. The sudden onset of SCI demands immediate adaptation to new caregiving roles, inducing physical, financial, emotional, and psychological strains on caregivers. Understanding these dynamics is crucial for developing supportive interventions that can alleviate the burdens faced by caregivers and improve the quality of care for SCI individuals. Objective: This study aimed to explore the experiences of family caregivers of individuals with SCI, focusing on the challenges they face, the roles they assume, the strains encountered, and the coping strategies they employ. Methods: A qualitative exploratory study was conducted among family caregivers of individuals with SCI at the Punjab Institute of Neurosciences, Lahore. Purposive sampling was used to select participants who were engaged in caregiving for at least 10 hours per week. Data were collected through semi-structured interviews, utilizing a specifically designed interview question grid. Demographic data were analyzed using SPSS software, while thematic analysis of interview data was conducted using NVivo 12 software. The study adhered to ethical standards, including obtaining informed consent from all participants. Results: The study comprised an equal distribution of male and female participants, with a majority engaged in caregiving for nine to twelve hours per week. Four main themes emerged: the initial challenge of becoming a caregiver, the multifaceted roles of caregiving, the strains of caregiving, and the coping strategies adopted. Caregivers reported significant physical strain, financial burdens, emotional and psychological stress, and relied on a combination of spiritual beliefs, optimism, and social support to navigate their caregiving responsibilities. The study also highlighted the importance of psychotherapy and comprehensive caregiving training sessions for caregivers. Conclusion: Family caregivers of individuals with SCI face substantial challenges that impact their physical, financial, emotional, and psychological well-being. Supportive interventions, including psychotherapy, comprehensive training, and the establishment of support groups, are essential to aid caregivers in managing the complexities of their roles effectively. Further research is needed to quantify these challenges and evaluate the effectiveness of proposed interventions.

Health-related quality of life instrument with 8 items to measure health-related quality of life among family caregivers of people with dementia: A pilot validation study.

The health-related quality of life instrument with 8 items (HINT-8) was developed to measure health-related quality of life (HRQoL) in Korea. However, the HINT-8 has not yet been validated among the family caregivers of people with dementia (PwD). A cross-sectional pilot study. The study aimed to examine the convergent and discriminant validity of the HINT-8 among family caregivers of individuals with dementia. Forty-seven family caregivers of PwD. HINT-8 was compared with the 5-level EQ-5D (EQ-5D-5L) to assess its convergent and discriminant validity. Additionally, the association between the two instruments assessing HRQoL was examined using the short-form Bédard-Zarit Burden Interview (SZBI). The HINT-8 was a promising and valid HRQoL instrument for family caregivers of PwD. There was a significantly high correlation between the overall HINT-8 and EQ-5D-5L indices (r=0.85, p<.001). The HINT-8 had acceptable psychometric properties compared to the commonly used EQ-5D-5L, as indicated by the subdomains associated with family caregivers' burden measured by the SZBI. Future studies should compare the HINT-8 with existing dementia carer-specific QoL instruments among a larger study sample to enhance its statistical power and confirm its reliability and structural validity.

Affiliate Stigma among family caregivers of individuals with dementia in China: a cross-sectional study.

Affiliate stigma experienced by family caregivers of individuals with dementia may seriously affect home care and prognosis of these patients. This study aimed to explore the levels of perceived affiliate stigma and its influencing factors among family caregivers of patients with dementia in mainland China, which remains a relatively unexplored topic. In this cross-sectional study, purposive sampling was used to recruit dementia family caregivers from an online communication group between April and May 2022. A total of 727 eligible caregivers were included and asked to complete the demographic questionnaire, the affiliate stigma scale, and the caregiver burden inventory. Descriptive statistics, independent sample t-test, one-way analysis of variance, Pearson correlation analysis, and multiple linear regression were used to explore the factors that influence perceived affiliate stigma among dementia family caregivers. The mean score for affiliate stigma of dementia family caregivers was 48.09 ± 16.38 (range: 22-86). Whether there were regular breaks during patient care, time-dependent burden, developmental burden, physical burden, and social burden were significant factors influencing the affiliate stigma of dementia family caregivers. Dementia family caregivers showed a moderate to high level of affiliate stigma. Those who had regular breaks during patient care, higher time-dependent burden, developmental burden, and physical burden and lower social burden exhibited higher levels of affiliate stigma.

Knowledge, Awareness, and Perceived Threat Toward Alzheimer's Disease Among the Family Caregivers of Individuals with Chronic Physical Conditions in Bangladesh.

Alzheimer's disease (AD) is a growing public health concern affecting millions of individuals worldwide. This disease burden is exacerbated in countries like Bangladesh, where public awareness and knowledge about the condition remains limited. This study aimed to assess the level of AD knowledge, awareness, and perceived threat among family caregivers of individuals with chronic physical conditions of Bangladesh. A descriptive cross-sectional study was conducted among the caregivers of patients selected via convenience sampling in six public hospitals between October 2022 and March 2023. The data was collected via face-to-face interviews employing a semi-structured questionnaire that contained information about socio-demographic characteristics, personal experiences with AD, knowledge of AD, level of awareness regarding AD, and perceived threat toward AD. The findings revealed a poor knowledge of AD among the study participants. Regarding AD awareness, 52.5% considered memory loss in older individuals abnormal, 26.2% attributed AD to causes like black magic, psychological distress, or bad eyes. Regarding perceived threat, 60.2% wanted to assess their AD risk, while 68.2% disagreed with the likelihood of developing the disease. Multiple linear regression analysis revealed that age, place of residence, education, and employment status significantly contribute to AD knowledge scores. This study highlights the urgent need for public education and awareness campaigns to address the knowledge gap and reduce stigmatization associated with AD in Bangladesh. Targeted efforts, particularly among older age groups and rural communities, can enhance understanding and improve the quality of care and support for AD patients and their caregivers.

Burden of Care, Depression, and Anxiety Among Family Caregivers of People With Dementia.

There are many challenges that entail caring for an individual with dementia, affecting not only the individual with the condition but also their caregivers. This can lead to increased burden, frustration, and depression among those taking care of them. A research gap exists concerning the care of people with dementia in Egypt, particularly regarding the mental health of caregivers. Limited studies have been conducted in Egypt, particularly focusing on the mental health of caregivers. This lack highlights the need to understand the prevalence and impact of caregiver burden in this population. The research aimed to evaluate the burden of dementia, levels of depression, and anxiety among family caregivers of individuals with dementia. A cross-sectional study was conducted at a geriatric unit clinic of a psychiatric hospital in Cairo University, Egypt. Caregiver burden, anxiety, and depression were assessed using questionnaires. These questionnaires included the Zarit Burden Interview (ZBI), Generalized Anxiety Disorder scale (GAD-7), and Patient Health Questionnaire-9 (PHQ-9), together with demographic data on the patients and caregivers. The majority of the 141 participants (73% (n = 103)) were female, mostly daughters, with an average age of 40 years. Approximately 50% (n = 71) of the subjects exhibited mild to moderate burden, whereas 30% (n = 43) showed moderate to severe burden. About 31% (n = 44) of the subjects exhibited symptoms of moderate depression, whereas 9% (n = 13) had symptoms of severe depression. Furthermore, almost 43% (n = 60) of caregivers exhibited a moderate level of anxiety. Furthermore, a significant association was seen between caregiver burden and the presence of anxiety and depression. This study showed a substantial burden in providing care, elevated levels of despair, and anxiety among caregivers of PWD. The findings highlight how important it is to develop targeted therapies and support systems in order to lessen the load on caregivers, advance their mental health, and improve overall care for both caregivers and their patients in Egypt. Policy-makers should prioritize investing in dementia-related support systems and services to empower caregivers and improve the quality of life for both caregivers and their patients.

Trajectory of Caregiver Burden and Associated Factors in Family Caregivers of Individuals with Colorectal Cancer: A Longitudinal, Observational Multicenter Study.

To (1) investigate the changes in 5 domains (lack of family support, impact on finance, impact on daily schedule, impact on health, and self-esteem) of family caregiver (FC) burden and overall burden for first diagnosed colorectal cancer; (2) exploring changes in FC burden for colorectal cancer patients over time and analyze the trajectory and sub-trajectories of FC burden; and (3) identify the FC-related and patient-related factors most associated with the overall FC burden and each of its sub-trajectories. This study is a descriptive longitudinal study. A convenience sampling method was used to recruit patients with colorectal cancer and their primary FCs from seven hospitals. A total of 185 pairs of first diagnosed colorectal cancer patient and their FC were investigated for 4 times. The results reveal the overall burden and 5 domains of burden showed a trend of increasing first and then decreasing, and the burden was the heaviest at the time in the middle of chemotherapy. In the course of time, the aspect that caused the greatest amount of burden on average transitioned from the "effect on daily schedule" (range= 3.3 and 3.9) to the "effect on finances" (range= 3.1 to 3.4). Almost 88% of FCs have a either a moderate or a high level of burden. The quality of life of patients and the self-efficacy, social support and care ability of FCs have a great impact on the overall FC burden and each sub-trajectory.

Caregiving burden and associated factors among family caregivers of individuals with schizophrenia in Bangladesh: A cross-sectional study.

Schizophrenia is a severe mental disorder affecting millions worldwide. Family caregivers play a vital role in patient treatment and recovery, but their responsibilities can be physically and emotionally exhausting. There is limited research on caregiver burden in Bangladesh, prompting this study to identify factors associated with the burden among caregivers of schizophrenic patients. This cross-sectional study collected data from 175 caregivers from January to December 2020 in Dhaka, Bangladesh. A semi-structured questionnaire and a validated Bangla version of the Zarit Burden Interview (ZBI) scale were used to assess the burden of primary caregivers and associated factors in caring for patients with schizophrenia. Participants' mean age was 34.02 ± 10.45 years, with 26.9% in the 34-41 age group. 49.1% were housewives, with most earning 5000 to 15000 taka monthly. Spouses accounted for 28.6% of caregivers. Most patients had an illness duration of less than five years (66.3%). Mean ZBI score was 49.49 ± 12.06, indicating moderate to severe burden. Factors significantly associated with caregiver burden included age, gender, occupation, income, marital status, house condition, relationship with patients, illness stage, and duration. This study highlights the burden experienced by caregivers of schizophrenic patients in Bangladesh and identifies factors associated with the burden. It recommends community interventions and psychosocial provisions to address this issue and inform targeted interventions to reduce caregiver burden. These findings provide insights for a comprehensive plan to manage such cases in the future.

Rehabilitation of post-stroke aphasia in Ghana.

Aphasia, a common consequence of stroke, which affects both communication and social functioning, and in turn, quality of life, is on the rise due to increases in stroke prevalence and survival rate. The rehabilitation of post-stroke aphasia primarily falls within the purview of speech-language pathology and research supports the effectiveness of such services. However, provision of aphasia rehabilitation services in sub-Saharan Africa is associated with challenges. This study aimed to examine rehabilitation services for individuals with post-stroke aphasia in Ghana by exploring the roles of the stakeholder groups involved in the assessment and treatment of post-stroke aphasia in Ghana, as well as the challenges they encounter in providing or identifying services. The stakeholder groups included educational institutions, interdisciplinary healthcare professionals, and family caregivers of individuals with post-stroke aphasia. A qualitative case study approach was used to collect and integrate from multiple sources data such as demographic information, interview responses and program syllabi to develop a holistic image. Fifteen respondents from the stroke and speech therapy units at Komfo Anokye and Korle-Bu Teaching Hospitals, University of Ghana, and University of Health and Allied Sciences, Ghana were purposively sampled. Interview questions were developed and centred on aphasia education and training, knowledge of speech-language pathology services, speech-language pathology service delivery, access to speech-language pathology services, challenges in both delivery and access to speech-language pathology services and suggestions for improving speech-language pathology services. In-person and virtual interviews were conducted after demographic information was collected. Interviews were analysed thematically, and demographic information and program syllabi were triangulated with the interview data collected. All stakeholder groups identified concerns with current aphasia services in Ghana. Issues raised included the insufficient number of speech-language pathologists, lack of awareness of speech-language pathology services for post-stroke aphasia (among healthcare professionals and the public), absence of aphasia management information and clinical training in educational programming, lack of interest in speech-language pathology training programs, financial challenges, spiritual and traditional beliefs and geographic barriers (i.e., speech-language pathology services are currently available in only a few cities). These findings emphasised the need to improve post-stroke aphasia rehabilitation in Ghana. The process of data collection itself educated respondents on the importance of post-stroke aphasia rehabilitation, and by identifying barriers, strategies to improving services, such as designing standardised aphasia assessments for the Ghanaian context, can now be initiated. What is already known on the subject To address post-stroke aphasia, evidence-based speech-language pathology services are provided. However, there is a paucity of studies on post-stroke aphasia services in Ghana, preventing an accurate report of services and practices in the country. What this study adds This study provides an overview of the existing rehabilitation services for post-stroke aphasia in Ghana. It highlights challenges facing the existing services and suggested strategies to improve post-stroke aphasia services. What are the clinical implications of this work? The study created awareness among healthcare professionals and general public (study participants) about the importance of rehabilitation services for post-stroke aphasia. Based on the study findings, appropriate stakeholders such as policy makers, researchers, and healthcare professionals can further design assessments and interventions to improve rehabilitation, including speech-language pathology services, for post-stroke aphasia in Ghana.

Patient Portal Use Among Family Caregivers of Individuals With Dementia and Cancer: Regression Analysis From the National Study of Caregiving.

Family caregivers are often inexperienced and require information from clinic visits to effectively provide care for patients. Despite reported deficiencies, 68% of health systems facilitate sharing information with family caregivers through the patient portal. The patient portal is especially critical in the context of serious illnesses, like advanced cancer and dementia, where caregiving is intense and informational needs change over the trajectory of disease progression. The objective of our study was to analyze a large, nationally representative sample of family caregivers from the National Study of Caregiving (NSOC) to determine individual characteristics and demographic factors associated with patient portal use among family caregivers of persons living with dementia and those living with cancer. We conducted a secondary data analysis using data from the 2020 NSOC sample of family caregivers linked to National Health and Aging Trends Study. Weighted regression analysis by condition (ie, dementia or cancer) was used to examine associations between family caregiver use of the patient portal and demographic variables, including age, race or ethnicity, gender, employment status, caregiver health, education, and religiosity. A total of 462 participants (representing 4,589,844 weighted responses) were included in our analysis. In the fully adjusted regression model for caregivers of persons living with dementia, Hispanic ethnicity was associated with higher odds of patient portal use (OR: 2.81, 95% CI 1.05-7.57; P=.04), whereas qualification lower than a college degree was associated with lower odds of patient portal use by family caregiver (OR 0.36, 95% CI 0.18-0.71; P<.001. In the fully adjusted regression model for caregivers of persons living with cancer, no variables were found to be statistically significantly associated with patient portal use at the .05 level. In our analysis of NSOC survey data, we found differences between how dementia and cancer caregivers access the patient portal. As the patient portal is a common method of connecting caregivers with information from clinic visits, future research should focus on understanding how the portal is used by the groups we have identified, and why.

Engaging patient-family dyads to inform the development of a digital health intervention to support cancer caregivers.

221 Background: Shifts in cancer care from hospital to home have increased the burden on family caregivers of individuals with cancer. Cancer caregiving is demanding and associated with declines in caregivers’ physical and psychological well-being. Digital health interventions may improve caregiver well-being by supporting them to monitor patient symptoms, access social support, and communicate with patients’ care team members. Despite benefits to quality care, few digital health interventions have been developed or implemented to support cancer caregivers. The purpose of this study was to develop a web-based intervention (myCare2) focused on supporting caregivers and caregiver well-being. Methods: This multi-method study followed a user-centered design. Participants were recruited from two clinics within one NCI-designated cancer center. We conducted three focus groups with patients with hematologic or gastrointestinal cancers and their caregivers to identify needs and preferences and guide intervention development. Next, we developed a wireframe prototype of myCare2. We iteratively refined the prototype in response to feedback obtained in cognitive interviews with patient-caregiver dyads. Lastly, we built a functioning web-based prototype and conducted user tests with dyads. Focus groups, cognitive interviews, and user tests were audio recorded, transcribed, and analyzed using conventional content analysis. Results: Eight dyads participated in three focus groups. Caregivers reported feeling unprepared and viewed themselves as “head of logistics” for the patient. Caregivers expressed the desire for a tool to help them organize caregiver responsibilities, including medication management, daily schedules and appointments, symptom monitoring, nursing and medical tasks, self-care, and communication with clinicians and support networks. In cognitive interviews, four dyads reviewed and provided positive feedback on the wireframe prototype features that allow the caregiver to schedule tasks; report patient and caregiver concerns; track patient symptoms and medications; ask family and friends for support; share updates with support networks; and find local resources, classes, and events. Five dyads tested myCare2, providing positive and constructive feedback about the intervention layout and functionality. Conclusions: Growing evidence suggests digital health interventions can benefit caregivers managing cancer care at home. The myCare2 intervention is a web-based tool based on caregiver and patient feedback that was found helpful and acceptable. Future research should evaluate the feasibility of myCare2, measure its effects on caregiver and patient outcomes, and identify optimal implementation strategies for use in practice.

Effectiveness of the Stress Process Model-Based Program in Dementia Caregiving (DeCare-SPM) for Family Caregivers: A Study Protocol for a Randomized Controlled Trial.

This paper aims to describe a randomized controlled trial protocol evaluating the effectiveness, cost, and process of a stress process model-based program in dementia caregiving (DeCare-SPM) for family caregivers. Family caregivers of individuals with dementia will be recruited from memory clinics and community settings and randomly assigned to either DeCare-SPM or usual care. DeCare-SPM comprises three face-to-face sessions (ie, problem-based coping, emotion-based coping, meaning-based coping), and a fourth session (ie, social support) including weekly telephone-based consultation for four weeks and then monthly face-to-face boosters. Outcomes will be measured at baseline (T0), and at one (T1), three (T2), and six months (T3). The primary outcome is positive aspects of caregiving and secondary outcomes are caregiving (ie, sense of competence, caregiver burden, social support, anxiety, depression, and quality of life), dementia-related (ie, care dependency, neuropsychiatric symptoms, and quality of life), and stress-related biomarkers of blood and saliva. In addition, process and economic evaluations will be performed. Mixed-effects models will be used to assess intervention effects. Content analysis will be performed on the qualitative data. This paper described the protocol for comprehensive evaluation of the effectiveness, cost, and process of the theory-driven DeCare-SPM to inform how and why interventions work. It highlights the need to reduce challenges and enhance the positive aspects of dementia care. The DeCare-SPM will provide evidence-based insights into how to support and empower family caregivers in their important roles, thereby, leading to improved dementia care.

Perceived Stressors and Support in Family Caregivers of Individuals With Opioid Use Disorder.

Stress experienced by family caregivers of individuals with opioid use disorder (OUD) contributes to caregiver burden. To understand the stressors experienced by family caregivers of individuals with OUD and the factors that influence their personal resiliency, data were collected from a convenience sample of family caregivers who answered two open-ended questions about sources of stress and factors that affect their personal resilience as part of an online survey. Yin's thematic analysis revealed five objective and two subjective burden themes and four resilience themes. Results indicate OUD places significant burden on families and may contribute to decreased physical and mental well-being in caregivers. Caregivers who perceived adequate support were able to use their experience and innate knowledge to cope and emerge with more resilience. Results of this study support the need for translational research to increase resilience and coping in this population of caregivers.

Factors Contributing to Life-Change Adaptation in Family Caregivers of Community-Dwelling Individuals with Acquired Brain Injury.

Acquired brain injury (ABI) is a public health issue that affects family caregivers, because individuals with ABI often require semi-permanent care and community support in daily living. Identifying the characteristics of family caregivers and individuals with ABI and examining life-change adaptation may provide valuable insights. The current study sought to explore the factors contributing to life-change adaptation in family caregivers of community-dwelling individuals with ABI. As a secondary analysis, a cross-sectional study was conducted using data obtained in a previous study of 1622 family caregivers in Japan. We hypothesized that life-change adaptation in family caregivers of individuals with ABI would also be related to family caregivers' characteristics and the characteristics of individuals with ABI. In total, 312 valid responses were analyzed using Poisson regression analysis. The results revealed that life-change adaptation in family caregivers of individuals with ABI was related to sex (prevalence ratio [PR]: 0.65, confidence interval [CI]: -0.819;-0.041) and mental health (PR: 2.04, CI: 0.354; 1.070) as family caregivers' characteristics, and topographical disorientation (PR: 1.51, CI: 0.017; 0.805) and loss of control over behavior (PR: 1.61, CI: 0.116; 0.830) as the characteristics of individuals with ABI, after adjusting for the effects of the caregiver's age, sex, and the duration of the caregiver's role. The current study expands existing knowledge and provides a deeper understanding to enhance the development of specific policies for improving caregiving services and supporting families.

Exploring factors contributing to caregiver burden in family caregivers of congolese adults with suspected dementia.

Predicting caregiver burden in individuals with suspected dementia - is critical due to the debilitating nature of these disorders and need for caregiver support. While some examination of the factors affecting burden has been undertaken in Sub-Saharan Africa, each country presents with its own unique challenges and obstacles. This pilot study investigates predictors of caregiver burden in family caregivers of individuals with suspected dementia living in the Democratic Republic of the Congo (DRC). Linear and multiple regression analyses were conducted to explore factors associated with caregiver burden in 30 patient-caregiver dyads with the Zarit Burden Interview (ZBI) for caregiver burden evaluation. Cognitive impairments of patients were assessed using the Community Screening Instrument for Dementia, Alzheimer's Questionnaire (AQ), the African Neuropsychology Battery, and the Neuropsychiatric Symptoms Inventory (NPI). Average caregiver burden on the ZBI was 36.1 (SD=14.6; range=12-58). Greater impairments in patient cognition (orientation, visuospatial, memory, executive functioning), fragility, and neuropsychiatric symptoms (delirium, agitation, depression) were predictive of caregiver burden. After controlling for AQ scores and caregiver gender, greater symptoms of depression, and worse performances on verbal memory and problem solving were associated with greater caregiver burden. Worsening patient fragility, cognition, functioning, and neuropsychiatric symptoms influenced caregiver burden in caregivers of individuals with suspected cognitive impairment in the DRC. These findings are consistent with the prior literature. Future studies may wish to explore supportive factors and caregiver specific characteristics that buffer against perceived burden.

Healthcare experiences of patients with Down syndrome from primarily Spanish-speaking households.

We report on the health care experiences of individuals with Down syndrome (DS) from families who are primarily Spanish-speaking. Data were collected through three methods: (1) a nationally distributed, 20-item survey, (2) two focus groups with seven family caregivers of individuals with DS who self-identified as living in primarily Spanish speaking households, and (3) 20 interviews with primary care providers (PCPs) who care for patients who are underrepresented minorities. Standard summary statistics were used to analyze the quantitative survey results. Focus group and interview transcripts, as well as an open-ended response question in the survey, were analyzed using qualitative coding methods to identify key themes. Both caregivers and PCPs described how language barriers make giving and receiving quality care difficult. Caregivers additionally described condescending, discriminatory treatment within the medical system and shared feelings of caregiver stress and social isolation. Challenges to care experienced by families of individuals with DS are compounded for Spanish-speaking families, where the ability to build trust with providers and in the health care system may be compromised by cultural and language differences, systemic issues (lack of time or inability to craft more nuanced schedules so that patients with higher needs are offered more time), mistrust, and sometimes, overt racism. Building this trust is critical to improve access to information, care options, and research opportunities, especially for this community that depends on their clinicians and nonprofit groups as trusted messengers. More study is needed to understand how to better reach out to these communities through primary care clinician networks and nonprofit organizations.

Needs of Patients With Gynecologic Cancer and Their Caregivers for Obtaining mHealth-Supported Self-Management: Focus Group Study.

Family caregivers of individuals with gynecologic cancer experience high levels of distress. Web-based caregiver support interventions have demonstrated efficacy in improving caregiver outcomes. However, the lack of portability could be a limitation. Mobile health (mHealth) apps could fill this gap and facilitate communication between patient-caregiver dyads. We sought to obtain information on desired usage and features to be used to design an mHealth self-management support app targeting both patients with gynecologic cancer and their caregivers. We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, and vulvar); patients were also asked to invite a self-identified "closest support person" (caregiver). A semistructured focus group guide was used to elicit information on patients' and caregivers' perceived gaps in information and support, desired features of an mHealth app, and interest in and preferences for app usage. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups. A total of 8 groups were held. The final sample included 41 individuals with gynecologic cancer and 22 support persons or caregivers (total n=63). Patients were aged between 32 and 84 years, and most (38/41, 93%) were White and married. For caregivers (n=22), 15 (68%) identified as male and 7 (32%) as female, with ages ranging between 19 and 81 years. Overall, 59% (n=13) of caregivers were spouses. Questions geared at eliciting 3 a priori topics yielded the following themes: topic 1-gaps in information and support: finding relevant information is time-consuming; patients and caregivers lack confidence in deciding the urgency of problems that arise and from whom to seek information and guidance; topic 2-desired features of the mHealth app: patients and caregivers desire centralized, curated, trustworthy information; they desire timely recommendations tailored to specific personal and cancer-related needs; they desire opportunities to interact with clinical and peer experts through the app; and topic 3-interest and preferences for app usage: need for private space in the app for patients and caregivers to get information and support without the others' knowledge; patients and caregivers desire having control over sharing of information with other family members. Designing a single mHealth app to be used by patients and caregivers presents unique challenges for intervention designers and app developers. Implications of the study suggest that app developers need to prioritize flexibility in app functionality and provide individuals the ability to control information sharing between patients and caregivers.

Predictors of Burden and Resilience in Family Caregivers of Individuals With Opioid Use Disorder.

Family caregivers are an essential resource for individuals with opioid use disorder (OUD). Overburdened caregivers often experience detrimental effects to their emotional and physical well-being. A cross-sectional, nonexperimental, correlational study was used to identify correlates and predictors of burden and resilience in caregivers of care recipients with OUD. Pearson product-moment correlation and multiple regression analysis were used to explore the relationships between caregiver characteristics, care recipient characteristics, the caregiver-care-recipient dyad characteristics, and burden and resilience among caregivers of individuals with OUD and to determine the best predictive model. Participants ( N = 152) completed the study using an online electronic survey. The standardized regression coefficients indicated that supervision of care recipient behavioral problems (β = .29), dyadic interaction (β = .29), caregiver stress (β = .28), and care recipient opioid use (β = .12) were the strongest predictors of caregiver burden, whereas caregiver mental health (β = -.31) and physical health (β = .30) were the strongest predictors of caregiver resilience. Caregiver and care recipient characteristics, and their dyadic interaction, directly influence the degree of burden and resilience reported by family caregivers. Caregivers experiencing increased stress who are tasked with supervising problematic care recipient behaviors are more likely to experience higher levels of burden. In contrast, caregivers with good physical and mental health and adequate resources showed higher levels of resilience.