Family Caregivers Of Individuals Research Articles

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.

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.

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.

UNDERSTANDING THE PREDICTIVE FACTORS THAT INFLUENCE THE PERCEIVED BURDEN OF DEMENTIA CAREGIVERS

Abstract Burden is a significant negative outcome for caregivers of individuals with dementia. Guided by the Stress Process Model, the following study examined the impact of several novel constructs on burden including: compassion for others, family functioning, coping styles, and positive and negative affect. Data were gathered through Amazon Mechanical Turk from 102 dementia caregivers. Participants were 62% female, 72% Caucasian with a mean age of 39.5 years old. Burden was significantly related to positive affect (r =-.31, p =.01), negative affect (r =.56, p =&amp;lt;.01), family functioning (r =.43, p &amp;lt;.01), and dysfunctional coping (r =.37, p &amp;lt;.01). Compassion for others was not correlated with burden. Multiple regression analysis results found the set of predictors accounted for 65.0% of the total variance in burden (F(5,96) = 14.17, p &amp;lt; .01, R2= .65), with positive affect (β = -.26, p = .01), negative affect (β = .19, p= .05), and dysfunctional coping (β = .31, p= .01) predicting significant and unique variance. Results from mediation analyses indicated dysfunctional coping mediated the relationship between positive affect and burden (effect= -.14 95% bootstrap CI= -.26, -.04) as well as the relationship between negative affect and burden (effect= .24, 95% bootstrap CI= .07, .48). A mediating relationship between dysfunctional coping and family functioning and burden was not supported. Discussion will highlight the implications of the study findings in developing innovative caregiver programs aimed at reducing dysfunctional coping and the broader theoretical implications of the role of affect in family caregivers of individuals with dementia.

The Impact of Stroke on Family Caregivers

Research Objectives To illustrate the quality of life, lived experiences, and unmet needs of family members of individuals with stroke. Design Embedded within a cross-sectional design, a qualitative study was undertaken to explore the lived experiences of family caregivers. Using purposive sampling, family caregivers of individuals with stroke were recruited. Findings from semi-structured interviews were analyzed using a thematic approach. Setting Recruitment took place from the general community. Participants 17 adults (12 females, 5 males) were recruited. Participants had to be a (1) family member of an individual with first time stroke, (2) 18 years and above, and (3) have adequate communication skills. Interventions Not applicable. Main Outcome Measures An interview guide containing questions that probed the quality of life of family caregivers was used. Results Preliminary findings generated three themes: (1) trying to hold our lives together, (2) the road to normality is filled with uncertainties, and (3) the value in engaging a domestic helper. Many caregivers saw a disruption to their previous roles; thus, managed this by taking up new responsibilities and balancing between caregiving and other life commitments. The second theme demonstrated the desire to achieve normality; however, this was not a straightforward path. Some obstacles included fused relationships, and constant worrying. In the final theme, participants described the value of hiring a domestic helper in providing practical, and emotional support during times of uncertainty. Conclusions Family caregivers of individuals with stroke reported varying experiences. It is important to provide timely holistic support, and resources to ensure that family members are adequately prepared. Future studies can help to promote, develop, and evaluate the efficacy of family-centered programs to cater to the needs of family members after stroke. Author(s) Disclosures None. To illustrate the quality of life, lived experiences, and unmet needs of family members of individuals with stroke. Embedded within a cross-sectional design, a qualitative study was undertaken to explore the lived experiences of family caregivers. Using purposive sampling, family caregivers of individuals with stroke were recruited. Findings from semi-structured interviews were analyzed using a thematic approach. Recruitment took place from the general community. 17 adults (12 females, 5 males) were recruited. Participants had to be a (1) family member of an individual with first time stroke, (2) 18 years and above, and (3) have adequate communication skills. Not applicable. An interview guide containing questions that probed the quality of life of family caregivers was used. Preliminary findings generated three themes: (1) trying to hold our lives together, (2) the road to normality is filled with uncertainties, and (3) the value in engaging a domestic helper. Many caregivers saw a disruption to their previous roles; thus, managed this by taking up new responsibilities and balancing between caregiving and other life commitments. The second theme demonstrated the desire to achieve normality; however, this was not a straightforward path. Some obstacles included fused relationships, and constant worrying. In the final theme, participants described the value of hiring a domestic helper in providing practical, and emotional support during times of uncertainty. Family caregivers of individuals with stroke reported varying experiences. It is important to provide timely holistic support, and resources to ensure that family members are adequately prepared. Future studies can help to promote, develop, and evaluate the efficacy of family-centered programs to cater to the needs of family members after stroke.

Quality of life and associated factors among family caregivers of individuals with psychiatric illness at DRH, South Wollo, Ethiopia, 2020

Mental illness results in an enormous social and economic burden not only on patients, but also on their families and communities. Many caregivers of patients with mental illnesses suffer from an extremely poor quality of life. In Sub-Saharan Africa, approximately 71% caregivers suffer from economic burden of severe mental illness. To our knowledge, no study has been conducted on quality of life of caregivers in Ethiopia. Therefore, this study aimed to assess the quality of life of family caregivers of patients with mental illness at Dessie Referral Hospital. The institution-based cross-sectional study was conducted among 398 caregivers selected using a consecutive sampling technique. The World Health Organization Quality of Life BREF was used to assess the quality of life. Logistic regression was performed and statistical significance was declared at a p-value < 0.05. 189 (47.5%) of family caregivers had poor quality of life. Being divorced, unable to read and write, primary education, being spouse, sibling and children of the patient, poor social support and high perceived stigma were significantly associated with the outcome variable. Because the magnitude of poor quality of life among family caregivers was high, family intervention programs are highly recommended to improve quality of life among caregivers.

Perceived stigma, barriers, and facilitators experienced by members of the opioid use disorder community when seeking healthcare.

Healthcare professionals, particularly nurses, have negative attitudes towards individuals with opioid use disorder (OUD) and these attitudes can contribute to suboptimal care. The aim of this study was to identify stigma, barriers and facilitators experienced by members of the OUD community when interacting with the healthcare system. A qualitative exploratory design used semi-structured focus group interviews to address the study aim. Following IRB approval, purposive sampling was used to recruit participants with a history of OUD, family caregivers of individuals with OUD, and support group leaders from regional recovery groups to provide a broad perspective of stigmatizing issues and barriers to care. Focus group discussions were conducted, and video recorded using web-based conferencing software. Transcripts from the focus groups and field notes were analyzed and coded into themes. Both structural and social determinants of health were identified by participants as stigmatizing and/or barriers to care. Thematic content analysis resulted in eight themes: stigmatizing language, being labeled, inequitable care, OUD as a chronic illness, insurance barriers, stigma associated with medications for OUD (MOUD), community resources, and nursing knowledge and care. Members of the OUD community are challenged by both internal and external stigma when seeking healthcare. Stigma negatively affects public support for allocation of resources to treat OUD. Interventions aimed at reducing stigma are critical to support effective OUD treatment and prevent barriers to OUD care. Understanding the complex relationships between stigma and structural determinants of health will allow nursing science to develop educational interventions that provide the next generation of nurses with the knowledge, skills, and attitudes needed to advance health equity for individuals with OUD.

Combating with Compassion Fatigue: The Perspective of Family Caregivers of People with Schizophrenia

The purpose of this study was to explore the coping processes used by family caregivers of individuals with schizophrenia to deal with compassion fatigue (CF). Grounded theory was used in this study. For recruitment, purposive and theoretical samplings were used to recruit participants. Data were collected from 29 family caregivers through in-depth interviews and field notes. Data were analyzed using constant and comparative methods. The study revealed a core process for dealing with CF as "Combating with compassion fatigue" that comprised three dynamic phases: strengthening attachment with the care recipient to increase willpower, learning how to deal with the illness, and self-empowerment to fight to the physical and mental fatigue. Family caregivers of people with a diagnosis of schizophrenia use various strategies to fight to CF. These combine the past experiences of strategies that work and new approaches. Our research will allow mental health professionals to provide basic strategies to family caregivers of people with a diagnosis of schizophrenia to help them to cope with CF.

Model of Family Caregiver Resilience and Burden in Opioid Use Disorder: A Theoretical Framework.

This theory synthesis provides a theoretical model for nursing researchers to examine factors that influence resilience and burden in family caregivers of individuals with opioid use disorder. Two frameworks, the Resiliency Model and the Conceptual Framework for Family Involvement with Adults with Co-occurring Substance and Mental Disorders, were synthesized and modified by incorporating concepts and conceptual relationships from recent research studies and experiential knowledge from clinical practice to develop a new model. The model predicts the impact of caregiver characteristics, caregiver support, stressors, and caregiver-care recipient dyad characteristics on caregiver well-being.

Dimensions of Caregiving in Schizophrenia

Family plays a vital role in the lives of individuals living with mental illnesses like schizophrenia. Schizophrenia is a severely disabling mental illness which affects the functioning of family caregivers. Family caregivers of individuals with schizophrenia have received significant consideration in recent years due to robust family involvement in caregiving of ill individuals. The family environment reflects the estimate of psychosocial factors that anticipate the prognosis of illness. Not surprisingly, family caregiving is a prominent support system that displays diverse roles regarding caregiving of individuals with mental illness; however, it has been stayed overlooked by the mental health practitioners. Family caregivers of individuals living with schizophrenia have to deal with a number of problems, such as associated stigma, burnout and reduced quality of life. These problems are result from apparent role of caring when combined with inefficient support system and unproductive ways of coping. Subsequently, may affect the biopsychosocial integrity and quality of life of caregivers. It is now well recognised concern for a mental health professional to acknowledge various dimensions of caregiving and cater the needs associated with family caregivers of individuals with schizophrenia. This review article used a descriptive approach to develop qualitative themes of different dimensions of caregiving from the review of literature. This is a retrospective study which has given an overview of different dimensions of caregiving in context of individuals living with schizophrenia. It is important to pursue further research on this neglected public health concern of caregiving.