Role Of Family Caregivers Research Articles

Cancer Prevention in Adults with Intellectual Disabilities: A Systematic Literature Review of Caregiver Perspectives in Institutional and Home Care Settings

Background: Individuals with intellectual disabilities (IDs) face unique challenges in accessing cancer prevention measures. Caregivers play a crucial role in facilitating these measures, yet their perspectives are under-researched. Methods: This systematic literature review explores caregiver perspectives on cancer prevention for adults with IDs in institutional and home care settings, aiming to understand their roles, knowledge, and challenges. Thirteen articles from the UK, the USA, Canada, and Ireland were analyzed through thematic synthesis. Four overarching themes were identified: breast cancer screening perspectives, caregivers’ knowledge and barriers to cancer prevention, caregivers’ perspectives, and cultural context and decision-making. Results: Caregivers, including healthcare professionals and family members, are essential in facilitating breast cancer screening for individuals with IDs. Challenges include explaining screening procedures, limited awareness, and logistical barriers, highlighting the need for targeted educational interventions. Disparities in access underscore the necessity for comprehensive training programs. Healthcare professionals’ perspectives reveal existing disparities and suggest interventions for improved accessibility and understanding. Cultural context influences decision-making, emphasizing the importance of culturally sensitive care. The role of family caregivers in decision-making necessitates empowering and supporting them through tailored interventions. Conclusions: This review provides insights into the challenges and opportunities in cancer prevention for individuals with IDs, suggesting the need for educational interventions, training programs, and systemic changes to address disparities. It lays the groundwork for future research and the development of holistic and inclusive strategies in this critical healthcare domain.

Exploring Health Care Professionals' Perspectives on the Use of a Medication and Care Support System and Recommendations for Designing a Similar Tool for Family Caregivers: Interview Study Among Health Care Professionals.

With the aging population on the rise, the demand for effective health care solutions to address adverse drug events is becoming increasingly urgent. Telemedicine has emerged as a promising solution for strengthening health care delivery in home care settings and mitigating drug errors. Due to the indispensable role of family caregivers in daily patient care, integrating digital health tools has the potential to streamline medication management processes and enhance the overall quality of patient care. This study aims to explore health care professionals' perspectives on the use of a medication and care support system (MCSS) and collect recommendations for designing a similar tool for family caregivers. Fifteen interviews with health care professionals in a home care center were conducted. Thematic analysis was used, and 5 key themes highlighting the importance of using the MCSS tool to improve medication management in home care were identified. All participants emphasized the necessity of direct communication between health care professionals and family caregivers and stated that family caregivers need comprehensive information about medication administration, patient conditions, and symptoms. Furthermore, the health care professionals recommended features and functions customized for family caregivers. This study underscored the importance of clear communication between health care professionals and family caregivers and the provision of comprehensive instructions to promote safe medication practices. By equipping family caregivers with essential information via a tool similar to the MCSS, a proactive approach to preventing errors and improving outcomes is advocated.

The Unseen Shift: How Partnership Long-Term Care Insurance Influences Caregiving Among Older Adults.

While the Partnership Long-Term Care Insurance (PLTC) Program was designed to mitigate the low uptake of long-term care insurance and reduce Medicaid's financial burden, research has predominantly focused on its direct impacts, leaving the effects on informal caregiving unexplored. This study aimed to investigate how the program alters the dynamics of family-provided care, leveraging nationally representative data to unveil the broader consequences on informal caregiving arrangements among older individuals. Data for this study were sourced from the U.S. Health and Retirement Study (1992-2018) and linked with the timing of the PLTC program implementation across states. The analysis compared individuals exposed to the program with those who were not, employing two-way-fixed-effects and dynamic models to assess its impact on long-term care insurance coverage and reliance on informal caregiving. The program positively affected long-term care insurance coverage, increasing insurance uptake among older individuals in the long run. Conversely, a significant negative effect was observed on the receipt of assistance from any helper, indicating a reduced reliance on informal care. This reduction extended specifically to family helpers and children's assistance with activities of daily living. The analysis suggests that the program effectively reduced the necessity for informal caregiving across several domains. These findings highlight the program's potential to reshape caregiving dynamics, suggesting the need for policies that balance promoting private insurance uptake with the implications for family caregiving roles. Policymakers should consider both the economic benefits and the social shifts induced by such programs in the long-term care landscape.

Effects of Psychoeducation on Caregivers of Individuals Experiencing Schizophrenia: A Systematic Review and Meta-Analysis.

The existing paradigm on recovery in mental health prioritises self-empowerment and person-centred, community-based care, which necessitates family caregivers' collaboration to support individuals with schizophrenia in the community. However, the role of family caregivers is often under-recognised and hence insufficiently supported. This consequently compromises caregivers' well-being and, ultimately, the recovery of individuals with schizophrenia. Although caregiver-targeted psychoeducation may offer practical support, its effectiveness lacks conclusive evidence. This review aimed to evaluate the impacts of psychoeducation on caregiver-related outcomes (caregiver burden, quality of life and expressed emotion). Eight electronic databases were searched from inception to September 2023, supplemented by hand searching of end-reference lists. Two reviewers independently conducted title and abstract screening with predetermined eligibility criteria. A third reviewer was consulted to resolve any discrepancies. A random-effects meta-analysis was performed to estimate pooled effect sizes alongside subgroup and sensitivity analyses where appropriate. Twenty-one studies (totalling 1639 caregivers) were included, based on which psychoeducation contributed to a statistically significant improvement in caregiver-related outcomes. Given substantial heterogeneity, subgroup and sensitivity analyses were done for the durations and the evaluative scales for psychoeducation. Quality appraisal revealed unclear or high bias in most studies. Notwithstanding the heterogeneity, the directions of the effect sizes consistently indicated the effectiveness of psychoeducation across all outcomes. This finding aligned with Lazarus' stress appraisal and coping theory, which states that psychoeducation improves caregivers' knowledge, coping mechanisms and situation appraisal. Our findings offer encouraging evidence to advocate the integration of psychoeducation into healthcare services, but policy-based support is warranted for sustained implementation. Further research is merited to optimise its duration and content and appraise its long-term impacts through disease-specific scales for objective and subjective outcomes.

Dyadic advance care planning: systematic review of patient–caregiver interventions and effects

IntroductionFamily caregiver’s involvement in advance care planning (ACP) is essential to provide high-quality end-of-life (EOL) care and to ease the surrogate decision-making burden. However, no systematic review has focused on...

Using Topic Modeling to Understand Patients' and Caregivers' Perspectives About Left Ventricular Assist Device: Thematic Analysis.

Heart failure (HF) is a significant global clinical and public health challenge, impacting 64.3 million individuals worldwide. To address the scarcity of donor organs, left ventricular assist device (LVAD) implantation has become a crucial intervention for managing end-stage HF, serving as a bridge to heart transplantation or as a destination therapy. Web-based health forums, such as MyLVAD.com, play a vital role as trusted sources of information for individuals with HF symptoms and their caregivers. We aim to uncover the latent topics within the posts shared by users on the MyLVAD.com website. Using the latent Dirichlet allocation algorithm and a visualization tool, our objective was to uncover latent topics within the posts shared on the MyLVAD.com website. Through the application of topic modeling techniques, we analyzed 459 posts authored by recipients of LVAD and their family members from 2015 to 2023. This study unveiled 5 prominent themes of concern among patients with LVAD and their family members. These themes included family support (39.5% weight value), encompassing subthemes such as family caregiving roles and emotional or practical support; clothing (23.9% weight value), with subthemes related to comfort, normalcy, and functionality; infection (18.2% weight value), covering driveline infections, prevention, and care; power (12% weight value), involving challenges associated with power dependency; and self-care maintenance, monitoring, and management (6.3% weight value), which included subthemes such as blood tests, monitoring, alarms, and device management. These findings contribute to a better understanding of the experiences and needs of patients implanted with LVAD, providing valuable insights for health care professionals to offer tailored support and care. By using latent Dirichlet allocation to analyze posts from the MyLVAD.com forum, this study sheds light on key topics discussed by users, facilitating improved patient care and enhanced patient-provider communication.

Challenges and coping strategies when caring for terminally ill persons with cancer: perspectives of family caregivers

IntroductionTerminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient’s initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person.MethodsAn exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis.ResultsFrom the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one’s time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so.ConclusionThe difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically.

Understanding the family burden and caregiver role in stroke rehabilitation: insights from a retrospective study.

Stroke negatively impacts both patients and their families, who must face multiple changes after the onset of the disease. Family caregivers must face new problems with a possible sense of inadequacy, stress and burden. Our retrospective study aimed to assess the burden of caregivers during the rehabilitation process of patients with Stroke. This study included patients with a diagnosis of stroke and their caregiver, who attended the Day Hospital of the IRCCS Neurolesi Center "Bonino-Pulejo", Messina, Italy, between January 2018 and October 2019, using electronic recovery system data. The final sample consisted of 30 patients and their caregivers. Significant improvements were observed in patients' cognitive and mood scores, reflecting the efficacy of rehabilitation therapies. Additionally, a correlation emerged between patients' reported anxiety levels and caregivers' reported depression levels, highlighting a dynamic interaction between the emotional states of the two groups. The study highlights the intricate interplay between caregiver characteristics, patient outcomes, and family dynamics in the context of caregiving. Targeted interventions aimed at improving family resilience and coping mechanisms are crucial to optimizing the well-being of both caregivers and patients.

A website to support people with dementia and their family caregivers in advance care planning: Results of a mixed-method evaluation study

ObjectiveThis study aimed to evaluate a theory-based website to support people with dementia and their families in the advance care planning (ACP) process. MethodsWe conducted an eight-week evaluation study with a convergent parallel mixed-methods design involving people with mild to moderate dementia and their family caregivers who used the website at their convenience. Interviews were conducted at baseline and after 8 weeks to evaluate usability, acceptability, feasibility, experiences, and effects on ACP knowledge, attitudes, perceived barriers to engaging in ACP, self-efficacy and skills to engage in ACP. ResultsWe included 52 participants (21 people with dementia and 31 family caregivers). In the interviews, all participants considered the website useful and valued the ACP content. Morever, participants reported that family caregivers mostly used the website alone or with the person with dementia. Participants' ACP knowledge, self-efficacy, and skills improved after 8 weeks compared the beginning of the study. ConclusionThe website may be an ideal introduction for those wanting to start ACP, providing user-friendly content and features for initiating and exploring ACP. Practical implicationsACP in dementia requires a tailored approach. Extra support is crucial for website adoption, emphasising the role of family caregivers while respecting individuals' autonomy.

Caring for people with non-communicable diseases: the views and experiences of health and social care professionals in Uganda

Resource-limited health systems in sub-Saharan Africa struggle to provide population-wide high-quality primary healthcare, with particular concerns relating to professional workforce issues and the role of family caregivers. This qualitative study design explores the perceptions of (n = 19) health and social care professionals of the challenges they face in caring for individuals living with non-communicable diseases in Uganda. Identified challenges resulted from staffing and resource limitations, with wider issues relating to poverty and the burden placed on carers. As non-communicable diseases continue to rise, these empirical findings can inform developments in policy and service delivery in low and middle-income country contexts.

Care for the cerebrovascular accident survivors: experiences of family caregivers

BackgroundThe role of family caregivers in the management of cerebrovascular accident survivors is invaluable. So far, there is a strong evidence affirming the effectiveness of family support for cerebrovascular accident survivors. Meanwhile, caring for cerebrovascular survivors can be labour and time intensive and pretty stressful for caregivers. The purpose of the study was to examine the lived experiences of family caregivers of cerebrovascular accident survivors in the Ho Municipality in the Volta Region of Ghana. This aims are to establish their caregivers’ knowledge, preparedness, and impact of caregiving on the caregiver, and coping strategies caregivers adopted.MethodsUsing a four-item (with 14 prompts) interview guide and descriptive phenomenological approach, we gathered and analysed data from 37 family caregivers in the Ho Municipality of Ghana.ResultsWe found that caregivers had limited knowledge about cerebrovascular disease-risk factors and were ill-prepared for their caregiving roles. Additionally, we found limited knowledge about coping strategies among the caregivers. We further report that some caregivers lost close relationships, and their jobs because of the caregiving, they also used fasting and prayer as coping strategies.ConclusionsCaregivers suffered broken relationship, loss their jobs and incomes due to their caregiving roles. Moreover, some engaged in fasting and prayers, and alcohol use to cope with the stress associated with caring for the cerebrovascular accident survivors. We discussed the potential implications of our findings on the realisation of the Sustainable Development Goal 3.4. The aim of this goal is to reduce by 75% premature deaths due to cerebrovascular and other non-communicable diseases by 2030.

Youth Caregivers of Adults in the United States: Prevalence and the Association Between Caregiving and Education

A growing proportion of individuals adopt family caregiving roles. Family caregivers are the primary providers of long-term care in the United States yet limited federal policy supports exist, despite the known negative impacts of caregiving. There is also limited information about the prevalence of youth/young adult caregivers and the impacts of caregiving at formative ages in the United States. Our objective is to estimate the prevalence of youth caregivers and examine the association of caregiving with educational investments. We use the American Time Use Survey (2013–2019) to identify and describe youth caregivers (aged 15–18) and young adult caregivers (aged 19–22) and compare them with non-caregiving peers. We estimate that there are approximately 1,623,000 youth caregivers and 1,986,000 young adult caregivers, corresponding to 9.2% and 12.7% of these age groups, respectively. However, there is a wide range in the estimated prevalence per year, from approximately 364,000 to 2.8 million youth caregivers and from 353,000 to 2.2 million young adult caregivers, depending on caregiver definition. Unlike adult caregivers, we find that young men and women were nearly equally likely to provide care. We also find that non-White individuals are disproportionately represented as youth caregivers. Compared with non-caregiving peers, both youth and young adult caregivers are less likely to be enrolled in school and, among those enrolled in school, spend significantly less time on educational activities. Considering the association of caregiving among youth/young adults and education, policies supporting youth and young adult caregivers are critical.

The Intersection of Successful Aging and Family Caregiving.

For the millions of older adults who rely on the support of a family caregiver, successful aging is not an individual achievement but a cooperative process between a care receiver and a caregiver. Yet, family caregivers are rarely incorporated into theoretical models of successful aging. Family caregivers also play an essential role in recent healthcare delivery movements that seek to better align care delivery with successful aging. Greater reliance on family caregivers by the US healthcare system is occurring as an increasingly vocal constituency is tasking policymakers with developing and implementing federal and state health policies that would help build the national infrastructure needed to support them. This paper provides a critical discussion of how family caregivers actualize successful aging for older adults. We highlight the key role of family caregivers in healthcare delivery innovations aimed at facilitating successful aging and discuss policies that support family caregivers. As successful aging continues to evolve as a dominating framework in the literature, we conclude with key recommendations for how research, policy, and practice efforts in successful aging can be more inclusive and supportive of family caregivers.

Adults With IDD in Supported Accommodation During COVID-19 Lockdown: The Families' Perspective.

The present study aims to understand and describe family caregivers' perceptions and experiences regarding contact and relationships with their adult relatives with intellectual and developmental disabilities (IDD) living in supported accommodation during the COVID-19 lockdown. A qualitative phenomenological approach was applied in which 19 Israeli family caregivers (parents and siblings) were interviewed. Inductive thematic analysis revealed themes at the microsystem level (the resident, the caregiver, and their relationship), and at the mesosystem level (the caregivers' interactions with service providers and other residents' families). The findings highlight the pivotal role of family caregivers in times of uncertainty and the need to develop explicit policies and mechanisms to facilitate family engagement in the residents' lives.

An Intersectional Approach to Understanding the Psychological Health Effects of Combining Work and Parental Caregiving.

Role theory suggests occupying simultaneous family caregiving and employment roles in midlife may exert positive and negative effects on psychological health. However, there is a lack of causal evidence examining the degree to which combinations of these roles influence psychological health at the intersection of gender and racial identity. Longitudinal data from the Health and Retirement Study (2004-2018) are used to estimate a series of individual fixed effects models examining combinations of employment status and parental caregiving situation on Center for Epidemiological Studies-Depression Scale (CES-D) depression scores among Black and White men and women aged 50-65. Subsequent models were stratified by intensity of caregiving situation and work schedule. Individual fixed effects models demonstrate combining work, and parental caregiving is associated with greater depressive symptoms than only working, and with lower depressive symptoms than only caregiving, suggesting that paid employment exerts a protective effect on psychological health whereas parental caregiving may be a risk factor for depressive symptoms in later life. Analyses using an intersectional lens found that combining paid work with parental caregiving exerted a protective effect on CES-D scores among White women and men regardless of participants' intensity of care situation or work schedule. This effect was not present for Black men and women. Accounting for intersectionality is imperative to research on family caregiving, work, and psychological health.

Family Caregivers' Attitudes and Perspectives About the Sexual and Reproductive Health of Women With Intellectual and Developmental Disabilities: An Online Survey.

Although sexual and reproductive health is critically important for women with intellectual and developmental disabilities (IDD), there is limited research elucidating the role of family caregivers in assisting women with IDD access sexual and reproductive health services and information. Understanding the family caregivers' attitudes and perspectives is essential to improving access to sexual and reproductive health services and information for women with IDD. A cross-sectional online survey of family caregivers of women with IDD was administered between June and October 2018. Quantitative analysis was conducted for closed-ended responses, and qualitative analysis was conducted for open-ended responses. The analytic sample included 132 family caregivers. Most participants were parents and reported being closely involved in their family member's access to sexual and reproductive health services and information. Although most participants expressed that sexual and reproductive health services and information are essential for women with IDD, qualitative analysis of participants' open-ended responses revealed both supportive and restrictive attitudes and perspectives on sexual and reproductive health services and information for women with IDD. Supportive attitudes and perspectives included (1) "knowledge is power;" (2) supported decision-making; and (3) protection against sexual abuse. Restrictive attitudes and perspectives included (1) dependent on the individual; (2) lack of autonomy; and (3) placing responsibility on disability. Greater attention from policymakers and practitioners to systems-level changes, including universal and accessible sexual education for women with IDD, supported decision-making, and sexual abuse prevention measures, are urgently needed.

Factors associated with quality of life among elderly patients with type 2 diabetes mellitus: the role of family caregivers.

As a long-term chronic disease, Type 2 diabetes mellitus (T2DM) patients' quality of life is affected by both themselves and his/ her close relatives, requiring comprehensive support from family members to ensure that patients are able to manage disease. The objective of this study is to investigate the relationship between caregivers' sense of coherence, caregiver competence, and T2DM patients' quality of life, as well as to explore the factors affecting patients with T2DM patients. This investigation was a cross-sectional study. Between October 2022 and July 2023, 392 participant-caregiver dyads from two hospitals in Jinzhou City, Liaoning Province, were researched. Participants were investigated by General Characteristics Questionnaire, Modified Barthel Index (MBI), Diabetes Specific Quality of Life Scale (DSQLS), Sense of Coherence scale-13 (SOC-13), and Family Caregiver Task Inventory (FCTI). Data were statistically analyzed using SPSS 25. Univariate and multivariate linear regression analyses were used to identify the independent factors associated with the quality of life of elderly patients with T2DM. The average score of T2DM quality of life was 61.14 (SD = 7.37), quality of life was negatively correlated with sense of coherence (r=-0.344, P<0.01) and positively correlated with caregiver competence (r = 0.522, P<0.01). Furthermore, we found that age, disease duration, activities of daily living scores, sense of coherence, and caregiver competence scores were the main predictors of quality of life (R2 = 0.375, P < 0.001). This study found that high levels of sense of coherence and caregiver competence in family caregivers were associated with better quality of life for patients. Furthermore, we also found that good quality of life was also related to younger age, shorter disease duration, and less dependence. This study offers a feasible example for policymakers to improve the quality of life from the perspective of T2DM patients' family caregivers.

Self-driven solutions and resilience adapted by people with drug-resistant tuberculosis and their caregivers in Bengaluru and Hyderabad, India: a qualitative study

One-fifth of people with drug-resistance tuberculosis (DR-TB) who were initiated on newer shorter treatment regimen (with injection) had unfavourable treatment outcomes in India as on 2020. Evidence on self-driven solutions and resilience adapted by people with DR-TB (PwDR-TB) towards their multi-dimensional disease and treatment challenges are scarce globally, which we aimed to understand. In this qualitative study using positive deviance framework, we conducted semi-structured in-depth interviews among consenting adult PwDR-TB (7 women, 13 men) who completed shorter treatment regimen (including injections) with maximum treatment adherence. The study was conducted in the southern districts of Bengaluru and Hyderabad, India between June 2020 and December 2022. Caregivers (14 women, 6 men) and health providers (8 men, 2 women) of PwDR-TB were also interviewed. Interviews were conducted in local language (Kannada, Tamil, Telugu, Urdu and Hindi) and inquired about practices, behaviours, experiences, perceptions and attributes which enabled maximum adherence and resilience of PwDR-TB. Interviews were audio recorded, transcribed, and translated to English and coded for thematic analysis using inductive approach. Distinctive themes explanatory of the self-driven solutions and resilience exhibited by PwDR-TB and their caregivers were identified: (i) Self-adaptation towards the biological consequences of drugs, by personalised nutritional and adjuvant practices, which helped to improve drug ingestion and therapeutic effects. Also home remedies and self-plans for ameliorating injection pain. (ii) Perceptual adaptation towards drugs aversion and fatigue, by their mind diversion practices, routinisation and normalisation of drug intake process. and constant reinforcement and re-interpretation of bodily signs of disease recovery (iii) Family caregivers intense and participatory care for PwDR-TB, by aiding their essential life activities and ensuring survival, learning and fulfilling special nutritional needs and goal oriented actions to aid drug intake (iv) Health care providers care, marked by swift and timely risk mitigation of side-effects and crisis response (v) Acquired self-efficacy of PwDR-TB, by their decisive family concerns resulting in attitudinal change. Also being sensitised on the detrimental consequences of disease and being motivated through positive examples. Synthesised findings on self-driven solutions and resilience towards the multi-dimensional DR-TB challenges provides opportunity for developing and testing new interventions for its effectiveness in DR-TB care settings globally. Designing and testing personalised cognitive interventions for PwDR-TB: to inculcate attitudinal change and self-efficacy towards medication, developing cognitive reinforcements to address the perception burden of treatment, skill building and mainstreaming the role of family caregivers as therapeutic partners of PwDR-TB, curating self-adaptive behaviours and practices of PwDR-TB to normalise their drug consumptions experiences could be the way forward in building resilience towards DR-TB. United States Agency for International Development (USAID) through Karnataka Health Promotion Trust (KHPT), Bengaluru, India.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

뇌졸중 환자 가족돌봄제공자의 일반적 특성과 보호자의 심리적 요인간의 상관관계

Objective : The role of family caregivers is a very important factor in the patient's recovery. In this study, based on these previous studies, we confirmed the correlation between the general characteristics of family caregivers of stroke patients and psychological factors. Through this, we would like to suggest a method of supporting the caregiving behavior of family caregivers. Methods : This study conducted a paper questionnaire and an online survey targeting 112 family caregivers who are currently caring for their family members. The research period was conducted for 4 weeks from September 30 to October 30, 2023. Descriptive statistics were obtained for the data collected through the questionnaire using spss 23.0 for Windows, and multiple regression analysis was performed to see the correlation between the general characteristics of family caregivers and psychological factors. Results : First, in the caregiver response scale according to general characteristics, there was a relationship between gender, disease period, and age of the family caregiver. Second, the burden of care according to general characteristics was related to gender, disease period, age of family caregiver, place of care, and personal insurance. Third, in terms of stress coping strategies according to general characteristics, there was a relationship between the age of the family caregiver, location&#x0D; of care, and employment of personal care. Fourth, gender, onset period, and age of family caregiver were related to depression according to general characteristics. Conclusion : In this study, we sought to identify independent variables that can be influenced by environmental&#x0D; changes in family caregivers. Support methods that enable changes in the environment, such as location of care, personal insurance, and employment of personal caregivers, were presented to those who provide family caregivers.