家庭韧性提升过程——以社会工作介入脑卒中后遗症患者家庭为例

Background Stroke is the leading cause of death and disability among adults in China. Social isolation in stroke survivors is a major public health concern across the globe. Social isolation is associated with social support, family resilience, and levels of personal hope, but how they interact to predict social isolation in the young and middle-aged stroke survivors remains unclear. Methods Using cross-sectional design and convenience sampling method, a survey was conducted among 461 young and middle-aged stroke survivors. Perceived social support scale, General isolation Scale, Chinese version of Family Resilience Assessment Scale and Herth hope index were adopted to assess patients’ social, family and personal factors. SPSS 27.0 and AMOS 26.0 were used for descriptive analysis and structural equation modeling of the data. Results The young and middle-aged stroke survivors had a high level of social isolation(49.57 ± 5.84). In the mediating effects model, social support could influence social isolation directly (95% CI -0.250, -0.061) or indirectly through family resilience (95% CI -0.136, -0.062) or patient hope level (95% CI -0.078, -0.017). In addition, Family resilience and hope had a significant chain mediating effect between social support and social isolation (95% CI -0.029, -0.006). Conclusions Social support can have both direct and indirect effects on social isolation through the mediating factors of family resilience and hope. Clinicians and nurses can develop supportive interventions by taking integration of family and personal hope. On the one hand, resources can be directed to the individual patient, and on the other hand, the utilization of social support can be ensured by increasing family resilience and enhancing the coping capacity of family members and individuals.

Family resilience theory posits that families can cultivate adaptive capacities to thrive amid adversity. However, evidence on family resilience mechanisms among Chinese stroke survivors and their caregivers remains limited. To investigate the direct and indirect pathways linking perceived social support, caregiver capacity, and family resilience in stroke-affected families and to identify socioeconomic determinants shaping resilience outcomes. This is a cross-sectional study. A convenience sample of 513 stroke survivor-caregiver dyads was recruited from two hospitals in Ningbo, China: a large public hospital and a private rehabilitation hospital. Quantitative data were collected using a structured questionnaire with respondent-stratified data sources. Primary family caregivers self-reported their general demographics, as well as their responses to the Perceived Social Support Scale (PSSS), Family Caregiver Task Inventory (FCTI), and Family Resilience Assessment Scale (FRAS-C). Concurrently, the demographics, clinical characteristics, and Activities of Daily Living (ADLs) of stroke survivors were assessed. Statistical analyses encompassed descriptive statistics, Pearson correlation coefficients, multivariate regression models, and mediation analysis to examine relationships between variables. Family resilience scores (mean = 86.70 ± 19.00) showed significant positive correlations with perceived social support (PSS) (r = 0.523, p < 0.01) and positive correlations with caregiver capacity (FCTI, r = 0.522, p < 0.01). Mediation analysis revealed that caregiver capacity partially mediated the relationship between PSS and family resilience (indirect effect: 26.68%). Socioeconomic determinants played a critical role: higher education (β = 8.50, p = 0.008), medical insurance coverage (β = -6.47, p = 0.009), and mild stroke survivors dependence (ADL;β = 9.40, p < 0.001) enhanced resilience, while higher pre-illness income of stroke survivors (β = -8.31, p = 0.002) and poor caregiver sleep quality (β = -6.20, p < 0.05) reduced it. This study provides novel evidence on the psychosocial mechanisms underlying family resilience in Chinese stroke populations. First, we identify caregiver capacity as a critical mediator between social support and resilience, elucidating a previously underexplored pathway. Second, we reveal the paradoxical association between higher pre-stroke income and reduced resilience, challenging conventional socioeconomic assumptions in resilience research. Third, we establish caregiver sleep quality as a modifiable determinant of family resilience. The study suggests that interventions should simultaneously strengthen social support networks and caregiver skills, while addressing issues related to sleep quality and financial concerns. Not applicable. Family resilience plays a crucial role in post-stroke recovery, enabling families to cope with and adapt to the challenges of adversity. Perceived social support and caregiver capacity are established psychosocial factors that contribute to family resilience. Existing studies often focus on stroke survivors-centered outcomes, with limited integration of socioeconomic and psychosocial factors in family resilience frameworks, particularly in non-Western contexts like China. Family resilience plays a crucial role in post-stroke recovery, enabling families to cope with and adapt to the challenges of adversity. Perceived social support and caregiver capacity are established psychosocial factors that contribute to family resilience. Existing studies often focus on stroke survivors-centered outcomes, with limited integration of socioeconomic and psychosocial factors in family resilience frameworks, particularly in non-Western contexts like China.

AIMS AND OBJECTIVES To investigate empirically the direct effect and potential mechanism of family resilience on patient-reported outcomes among young stroke dyads in China. BACKGROUND Young patients with stroke have been becoming an important public health issue. According to relevant theories and previous studies, we found that family resilience might play an important role in patient's symptoms. However, it is less clear about the specific relationship and potential mechanisms of these two variables. DESIGN We used a prospective cross-sectional design. METHODS A multi-item questionnaire was used to assess the constructs of interest. Researchers progressively constructed and validated conditional process models. The PROCESS macro was used to verify the research hypotheses. RESULTS A total of 560 questionnaires were collected in this study. We found that family resilience of stroke patients and their spouses had a direct effect on the physical, psychological and social aspects of patient-reported symptoms. We further revealed that caregiver preparedness partially mediated the relationship between family resilience and patient's symptoms in stroke patient-spouse dyads, while perceived social support moderated the relationship between caregiver preparedness and patient's symptoms. Finally, we observed that the impact of caregiver readiness and social support on patients' symptoms predominantly manifested in physical and physiological outcomes. CONCLUSIONS Our research provides evidence about the positive impact of family resilience on patient-reported symptoms in young stroke dyads. Meanwhile, it further revealed how caregiver preparedness and perceived social support may play out in the relationship. PRACTICE IMPLICATIONS Our research introduces a novel perspective and pathway to enhance short-term recovery outcomes for patients. It also furnishes clinicians and nurses with evidence to guide the implementation of interventions aimed at improving patient health outcomes and facilitating smoother transitions from the hospital to home. IMPACT What problem did the study address? Families play a crucial role in a patient's recovery process from illness, with family resilience serving as an important force for families to overcome adversity. However, the impact on patient symptoms and the underlying mechanisms of this relationship are uncertain. Empirical research is required to validate these aspects. What were the main findings? Family resilience has a positive impact on the physical, psychological and social aspects of patient-reported symptoms in young stroke dyads. Both the actor effect and partner effect are supported. The impact of caregiver readiness and social support on patient-reported symptoms is primarily observed in physical and physiological outcomes. Where and on whom will the research have an impact? This study offers a novel approach to enhance the short-term recovery of stroke patients. The researchers believe that the findings of this study will play an even more significant role during patients' transition from the hospital to home. REPORTING METHOD This study followed the STROBE statement of cross-sectional studies. PATIENT OR PUBLIC CONTRIBUTION The study was conducted by patients, their spouses, healthcare professionals and the research team.

Background Walsh's family resilience theory indicated that families could foster resilient outcomes among their members when they are facing changes or crises. However, little is known about family resilience among Chinese stroke survivors and their caregivers. Objectives To explore the direct and indirect relationships between the family resilience of stroke survivors, perceived social support, self-perceived burden, self-efficacy, and the burden on their principal caregivers, and to examine the journey of adapting to family resilience among stroke survivors. Design An explanatory sequential mixed-method study. Methods A quantitative assessment of perceived social support, self-perceived burden, self-efficacy, and family resilience was conducted among a cohort of stroke survivors. For a deeper understanding of the family resilience formation process, semi-structured, in-depth interviews were undertaken with a purposefully selected subset of participants, consisting of 15 stroke survivors and their principal caregivers who met the study criteria. Data analysis encompassed descriptive statistics, mediation models, and content analysis to integrate and interpret both quantitative and qualitative data. Results In a comprehensive hospital in Guangdong Province, China, 379 participants—229 men (60.4%) and 150 women (39.6%)—completed a cross-sectional questionnaire survey. The quantitative phase revealed significant statistical differences (p < 0.05) in total family resilience scores among stroke survivors related to various factors, such as age, marital status, educational level, occupational status, average monthly income per capita, first-time onset, and types of stroke. Self-perceived burden and self-efficacy partially mediate the relationship between perceived social support and family resilience, contributing to a sequential chain-mediated effect. During the qualitative phase, in-depth interviews revealed a progressive trajectory from the initial shock of diagnosis through the ongoing presence of stress and challenges to the ultimate development of family resilience and an adaptive perspective toward the future. Conclusions Exploring the factors influencing family resilience in stroke survivors could assist healthcare professionals developing interventions to enhance family resilience and lessen the burden on principal caregivers from individual, family, and social perspectives.

Background Stroke is a critical public health issue in China that necessitates a closer examination of family resilience (defined here as the collective capacity of individuals, families and communities to effectively navigate challenges, recover from adverse events and foster positive adaptation). Amid rising stroke incidence, this study addresses the dearth of research on family resilience among stroke survivors in China, aiming to assess its level, identify influencing factors and establish coping strategies for family caregivers. Methods This mixed-methods research employed a sequential explanatory design. Questionnaires were distributed to 258 stroke survivors and their family members at outpatient follow-up visits. In the first stage (ie the quantitative research stage), the research tools for data collection included a general demographic sociological data questionnaire, the Family Resilience Assessment Scale (FRAS), the Self-Efficacy for Managing Chronic Disease 6-Item Scale, the Caregiver Burden Scale, the Family Functioning Scale and the Social Support Rating Scale. Quantitative data were analysed using IBM SPSS 26.0 software, utilising descriptive statistics for summarising sociodemographic characteristics and conducting analyses, such as independent-sample t-tests, one-way analysis of variance and Spearman correlation analysis. The second stage (ie the qualitative research stage) involved complementing and validating the data, developing a quantitative–qualitative interview framework and selecting participants for interviews. Colaizzi’s seven-step analysis was applied to analyse interview data. In the third stage, the quantitative and qualitative research results were integrated, and a comprehensive analysis was performed to obtain an accurate conclusion. Results A total of 242 families responded to the questionnaire (response rate: 93.8%). In total, the mean age of stroke survivors was 61.86 ± 8.76 years old, and 69.8% were male. The quantitative results showed that the FRAS mean score was (185.33 ± 24.78), which was above the medium level. The multiple linear regression analysis confirmed that family function was the strongest influencing factor on family resilience (β = 0.948, p < 0.01). The qualitative analysis revealed four themes of family adaptation experience: loss of independence and certainty, facing threats and challenges, seeking family advantage resources and adopting coping strategies. Conclusion This hybrid study sheds light on the adaptation process of the families of stroke survivors, revealing family function as the primary influencer of resilience. Recognising that eliminating risk factors is challenging, our suggestion is for clinical practitioners to emphasise family strengths and implement resilience-oriented interventions. Focusing on enhancing coping abilities and fostering adaptation within families can aid in the rehabilitation process, promoting the well-being and growth of both the family unit and individual members, while alleviating caregiver burden.

This article explores the array of social and psychological challenges confronting contemporary family structures and examines the integral role of social work in addressing these issues. Rapid societal changes, urbanization, and evolving cultural norms have contributed to increased family stress, communication breakdowns, and emotional isolation. Through a review of current literature and empirical data, the study identifies key stressors such as economic uncertainty, generational conflicts, and the erosion of traditional support networks. The research further investigates how tailored social work interventions can restore stability and enhance relational dynamics within families. By employing a mixed-method approach, including surveys and in-depth interviews with professionals in the field, the study provides insights into effective strategies that foster resilience and promote healthier family environments. Ultimately, this analysis underscores the necessity for proactive, community-based initiatives and policy reforms that empower social workers to better support modern families.

Sociocultural, mental, behavioral, and physical factors are interrelated associates of chronic health conditions—such as diabetes, obesity, and cardiovascular disease—all of which are disproportionally high and drive much of the mortality and morbidity for Indigenous peoples. Indigenous worldviews conceptualize health holistically, with inseparability across social, spiritual, cultural, familial, mental, behavioral, physical, and social dimensions of wellness. Food, family, and culture are fundamental to Indigenous wellness. The purpose of this article is to use the Framework of Historical Oppression, Resilience, and Transcendence (FHORT) conceptualization of relational wellness to honor urban and rural U.S. Indigenous perspectives that highlight the intersections of family, culture, physical health, spiritual, and mental health to promote resilience and wellness. This research focused on interconnections between wellness, culture, health, and family. Thirty-one critical ethnographic interviews used a life-history approach with methodology following an Indigenous toolkit for ethical and culturally sensitive research strategies, such as building upon cultural strengths, engaging in long-term, relational commitments with communities, incorporating storytelling and oral history traditions, centering Indigenous methodologies and preferences, working with cultural insiders, and prioritizing the perspectives of Indigenous peoples. Emergent themes included: (a) roots of Indigenous wellness: cultural values promoting balance and connection; (b) practicing resilience: family transmission of health information; and (c) wholistic mental wellness and resilience, with the subtheme culture and wellness. Interventions can be developed in collaboration with tribes for optimum efficacy and cultural relevancy and can approach wellness holistically in culturally relevant ways that center foodways, culture, family, and spirituality.

The prevalence of mental health illness is on the rise throughout the world. Mental health is increasingly one of the most overwhelming conditions that has an effect on the social functioning of individuals and families within communities. Mental Health Care Act, No 17 of 2002 of the South African government provides for the protection of individuals and communities against mental health. Still, people continue to experience mental health problems at a high rate. Social workers have a fundamental role to play in improving mental health services and outcomes for communities. Social work services have the potential to improve the lives of people with mental health conditions and build resilience in individuals and families. Resilience is a critical technique that assists individuals to function properly despite the challenges they may have experienced.  Research has shown that people with mental health problems struggle to return back to normality. This article aims to explore the roles of social work intervention in promoting mental health and resilience in communities. The study was conducted by analyzing research or studies related to mental health and resilience. The study carried out comprehensive desktop electronic research to gather data and themes from previous studies. The analysis showed that mental health is still a major concern, and social workers have an important role to play in building resilience for individuals and families.

Objective: Guided by Maslow’s Hierarchy of Needs, this study explored the impact of home-based social support services on the well-being of older adults in Turkey. Methods: A qualitative descriptive design was employed with 63 participants, including 25 older adults, 23 caregivers/family members, and 15 professionals from four major cities. Data were collected through semi-structured interviews and analyzed using MAXQDA 2024. Results: Home-based services were found to enhance both physical and psychological well-being. Nonetheless, chronic health conditions limited daily activities and social engagement. Older adults who maintained regular interactions with family, friends, and professionals demonstrated greater emotional resilience and strengthened social relationships. Discussion: Strengthening collaboration between families and professionals in home-based care is essential to improve older adults’ well-being and promote active aging. The findings underscore the need for inclusive, needs-oriented approaches in gerontological social work and aging policies.

Healing a patient after a stroke will have an impact on their emotional status. This study aims to analyze the relationship between family support and emotional regulation in disabled patients after stroke. This research uses a cross-sectional design. The population in this study was 45 patients with disabilities after stroke. The sample size in this study was calculated using the Slovin formula, so based on the population size, we obtained a sample size of 40 patients. Respondents were selected using random sampling techniques. The variables studied were family support as independent and emotional regulation as dependent. Data were collected using the Perceived Social Support Family Scale questionnaire and the Emotional Regulation Questionnaire. The results showed that family support for disabled patients after stroke was mostly good (45%), and emotional regulation for disabled patients after stroke was mostly good (57.5%). The close relationship between family support and emotional regulation is proven by the value r = 0.768; p = 0.01. The conclusion of this study is that there is a strong relationship between family support and emotional regulation in post-stroke-disabled patients. Family support is important for managing emotions. Good emotional regulation will increase the patient's adaptive response to the disease. The implication of this research is that the patient's adaptive response will make it easier for patients to improve their recovery in health services

Culture is a significant factor in human development, sustainability, and societal cohesion. It is greatly cherished and holds universal significance to individuals, groups, families, communities, societies, and nations. Culture affects how a victim, survivor, client, or family responds to life altering experiences such as domestic violence, child abuse and neglect, sexual abuse, and trauma. It also influences how a client or family deals with loss and grief, resilience, and recovery. Hence, understanding different cultures and cultural practices, symbols, artifacts, the meaning they hold, and respecting and operating within the confines of a set culture is very important. Cultural competency is a key medium through which this need can be addressed. Cultural competency is a core principle that should undergird a social worker’s service/practice with clients as enshrined in the Code of Ethics of the National Association of Social Workers. Failure to execute cultural competency is detrimental to the delivery of appropriate and effective services to clients, and a digression from the code of ethics and professional standard of practice within the profession of social work. The execution of cultural competency in social work practice fosters a positive and enduring therapeutic relationship between the social worker and client, and lays the foundation for productive engagement, interaction, and intervention. From this perspective, this article embodies a review of the research literature on the topic of culture and culturally competent practice from different disciplines. The review and analysis include a study this author conducted in Ghana-Africa that examined the significance of culture and its impact on individuals and their perceptions as well as behaviors within a cultural context. Specifically, the study focused on the cultural effects on learning and the transfer of knowledge, and this paper relates its significant implications for understanding culture and responsiveness to cultural practices within professional practice. The findings from this original study revealed that culture impacts an individual’s perception and behavior significantly. The implications for culturally effective social work practice were discussed and recommendations for cultural competence, responsive, and responsible practices including anti-oppressive intervention strategies at the micro, mezzo and macro levels were put forward. In addition, a cultural conceptual practice model called GACIE was proposed for use in assessing and intervening with culturally diverse ethnic minority clients.

Introduction: The natural process of aging is accompanied by a decline in physical, psychological, and social conditions that work together to create problems from chronic illnesses, weakness from reduced function of various body organs, and problems with day-to-day activities. Stroke is among the health issues that older adults frequently face. Hemorrhagic and non-hemorrhagic strokes are the two types of strokes. Method: The purpose of this study is to ascertain how much family support affects an older adults' ability to carry out daily activities independently after suffering a stroke. Selected articles from the literature are reviewed and used in this study. Results: Participants discussed two themes regarding the impact of family support: enhancing the quality of life for older adults following a stroke and providing support for older adults to remain independent with their ADLs. Having optimal family support will cause stroke sufferers to become independent in carrying out activities, but if there is no family support, stroke patients will become dependent on other people to fulfill their ADLs. Conclusion: There is no family support, stroke patients will become dependent on other people to fulfill their ADLs.

This is a qualitative study which uses Grounded Theory as its methodological framework and Symbolic Interactionism as a theoretical base to understand the experience of family caregivers for Cerebrovascular Accident (CVA) patients with regard to social support during their rehabilitation process at home. The components (themes and categories) of the phenomenon assuming home care and specifically the themes assuming care with support and assuming care without support were inter-related for the purpose of comparison and analysis, in order to apprehend how the interaction between them occurred. It was observed that, in addition to the recovery of the patient's autonomy, social support is one of the intervenient components in the quality of life for the family caregiver-disabled person binomial, particularly with respect to the caregiver's freedom to resume his/her life plan.

Cerebrovascular accident (CVA) may leave permanent and long-term disability placing a burden on the family. Disability following the CVA often required family, especially spouse to provide care. Spouses may struggle to adapt to a long-term caregiving role and relationships with CVA survivors. The study aims to describe the lived experiences of spouses of CVA survivors in order to gain a deep and thorough understanding of the phenomenon. The Husserlian descriptive phenomenology design was used to purposively identify the eight informants. The data were gathered through an interview, after which transcription was done and analyzed using Colaizzi's method. After the thematic analysis, four themes emerged: (1) Increased Domestic Workload (2) Exhaustion: (a) Physically Demanding (b) Psycho-emotional Distress (c) Financial Burden, (3) Bound for a Mission and Responsibility: (a) Being Obligated (b) Strength of Relationship (c) Spouse Welfare, (4) Sense of Loss: (a) Loss of Understanding (b) Loss of Hope (c) Loss of Control. Taking care of CVA survivor had contributed to the changes in the lives of these spouses. The physical, emotional, psychological and financial matters had to be considered that could affect the wellbeing of both the spouses and the CVA survivor. The support of spouses of CVA survivors and their families in achieving optimum long-term adjustment was essential.

The family caregivers are spouse, family members, friends, or relatives of the sick, disabled, anddependent individuals who are not paid for providing care. The care may last for months or years andcovers a wide range of physical, social, emotional, or even financial care. Statistics show that morethan 40 million adults in the United States care for their loved ones as family caregivers.1 In Iran, nospecific statistics are available on the number of caregivers of patients with chronic diseases. However,by examining the statistics of chronic diseases, as well as the trend of population aging in Iran, it is mostlikely that a large part of the community is involved in caring for a sick, elderly, or disabled person.The persistent and often physical nature of caring duties and emotional complications resultingfrom providing care to a loved one with a debilitating illness is considered a chronic stressor.2 Thisstressor, which has a chronic nature, caregiver burden, and the uncertainty about the end timeof the need for this care, is associated with numerous physical and psychological consequencesfor the caregiver.3 Due to involvement in care, caregivers lose job opportunities. On the otherhand, caregiving also leads to social isolation of the caregivers.2 This condition is referred to asa general concept of caregiver burden.3 Consequently, involvement in providing care is a publichealth issue that affects millions of individuals’ quality of life.4Demographic change and therapeutic advances in chronic disorders may shortly highlightthe informal care. Despite the increasing need for informal care, changes in family structureand social roles in the future may endanger the potential for informal care or, at least, increasecare burden.5 Therefore, to take advantage of this vital and influential role of family caregivers,reduce caregiver burden, and encourage and motivate them to continue this challenging path, wemust find a solution. Specific priorities for supporting family caregivers, including recognizingneeds and problems, increasing awareness, supporting work environments, and healthcare, havebeen identified worldwide. Various studies have been conducted in different areas and based ondiverse methods to assess the caregivers’ needs and burdens and evaluate the effectiveness of3Family caregiverIJCBNMvarious interventions. In Iran, several studies have been conducted, too; however, there is no wellwrittenprogram or a special center with specific goals for family caregivers that can practicallyutilize the results of these studies.Nursing is a discipline with a broad field. In all nursing areas, the emphasis is placed on caringfor clients and their families. In Iran, likewise, the patient’s family has been considered in thecurriculum of different nursing levels. Although nurses may focus on supporting the client’sfamily in their routine care programs, in the absence of an identified and responsible unit forcaring for caregivers, these minor efforts will not resolve significant problems. On the otherhand, nursing staff shortage issues do not allow the nurses in medical centers to care for familycaregivers along with their patients. The lack of implementation of nursing care programs atthe family and community level and the focus of nursing care on medical centers, and the lackof even a unit in these medical centers to assess and address the caregivers’ problems and notmerely their patients complicated the situation. In the absence of such centers and the lack ofmicro- and macro-planning, there is no opportunity to apply the results of the studies, and noneof the caregivers’ major or minor problems will be resolved.It seems that the establishment of centers and facilities to educate, counsel, and support thecaregivers of individuals with chronic conditions, such as cancer, mental disorders, Alzheimer’s,dementia, diabetes, heart failure, cerebrovascular accidents, spinal cord injuries, multiple sclerosis,and kidney failure, is of particular importance. Moreover, strengthening the relationship betweenthe patient and family and the care-support centers through the nursing team’s home care can help support the patients’ caregivers. On the other hand, taking advantage of electronic and virtualservices, creating websites, and mobile-based programs, particularly remote and less privilegedareas can be beneficial. Furthermore, this group’s financial issues and the need to support them withthe help of insurance services and government financial support are suggested to be consideredand planned.

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Introduction The act of caring for a dependent elderly victim of cerebrovascular accident exerts different impacts on caregivers. Knowledge of their socioeconomic level by health professionals supports the planning and implementation of actions appropriate to the reality of the elderly and their caregivers. Objective To determine whether socioeconomic status predicts informal caregivers’ state of mind (depression). Design Cross-sectional, descriptive study in the Dão Lafões sub-region. Participants Non-probabilistic sample of 636 informal caregivers, aged 17–85 years (mean = 50.19 ± 14.30). Measuring instruments The Beck Depression Inventory and the Graffar Socioeconomic Level Scale. Results We found class III (middle class family/reasonable socioeconomic status) was the most common (40.4%), class IV (upper lower class family/low socioeconomic level) with 37.7%. A majority of the sample (62.9%) does not have depressive symptoms, with their presence observed in 37.1% of informal caregivers, in which 24.3% are men and 39.6% women. The results sustain that socioeconomic level (P = .004) in the total sample predicts state of mind, inferring that caregivers with poorer socioeconomic status have a worse state of mind. Conclusions The evidence found from the research show that informal caregivers with depressive symptoms have a poorer socioeconomic status, so that it is compulsory to consider these variables when planning interventions whose primary focus of attention is aimed at caregivers and elderly cerebrovascular accident victims experiencing situations of transition.

Context: Impact of disability is deleterious, affecting an individual's every aspect. Majority of disabled reside in rural areas of developing countries. Moreover, different types of disability add to its wide spectrum. All these make it a major health issue. Aims: The aim of this study was to note the prevalence rate and pattern of locomotor disability in a rural population of Jodhpur District and to observe its impact on mobility, self-care, and interpersonal skills of disabled. Settings: This study was carried out in rural field practice area of the Community and Family Medicine Department of tertiary care setup. Design: This was a cross-sectional study. Materials and Methods: House-to-house survey for a sample size of 1656 was conducted by a team of trained doctors, therapists, and anganwadi workers for identification of locomotor disability applying a pretested survey questionnaire. Statistical Analysis: SPSS version 22 was used for descriptive analysis of variables (frequency distribution), and the Chi-squared test was used for the association of sociodemographic factors with performance qualifier score. Results: The prevalence rate of 2.08% for locomotor disability (male = 57% and female = 43%) was noted, with 31% from 40 to 60 years, 49% were illiterate, and 60% were from lower class. The main etiologies were cerebrovascular accident (25%) and cerebral palsy (23%). About 80% faced some difficulties in mobility domain, 57% in self-care, and 63% in interpersonal skills. Statistically significant association was seen for self-care domain with education level (P = 0.04) and for interpersonal skill domain with age groups and diagnosis (P = 0.022 andP = 0.035, respectively). Conclusion: The overall prevalence of locomotor disability in rural Jodhpur was 2.08%, higher for males and higher from 40 to 60 years. Most disabled were illiterate and were from low socioeconomic status. Self-care, mobility, and interpersonal skills were primarily affected and require proper intervention.

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Meaning in caregiving plays an influential role in stroke family caregiver’s perception and adaptation to caregiving. Although the role meaning plays in stroke family caregiving has been recognized, knowledge about this subject among the Chinese population is fragmented and sparse. Therefore, a hermeneutic phenomenological study was conducted as a first step in a program of research focused on Chinese caregivers utilizing a purposive sample of five stroke family caregivers living in China to explore the meaning of the lived caregiving experience. Data were collected through in-depth interviews and analyzed by a phenomenological hermeneutic interpretation. Meaning in stroke family caregiving was interpreted as suffering, an obligation, a personal choice, a meaningful opportunity, and a natural part of living. These meanings were dynamic and interconnected and were affected deeply by the Chinese culture in how caregivers experience, interpret, and cope with caregiving. Findings highlight the need to understand the culture-shaped meanings in caregiving to better support family caregivers and develop culturally tailored interventions.

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Objective: To explore the perspective of family caregivers who care for stroke patients in North Sumatra Province, Indonesia. Methodology: This qualitative study included 16 family caregivers who were recruited using purposive sampling method. Data were collected from June to August 2022 at Adam Malik Hospital, North Sumatra, Indonesia. We used in-depth semi-structured interviews and interview guidelines. The data were analyzed using thematic content analysis. Results: Three themes and ten sub-themes were as follows: heavy burden (psychological disorders, limited time for rest, change in social activities, and decreased income); need support and information (requires a support system, using non-pharmacological drugs, and using alternative therapies); and lack of knowledge and skills (lack of knowledge on stroke and its management, lack of knowledge on physical mobility and stroke complications, and lack of knowledge on nutrition). Conclusion: Family caregivers of stroke patients experience a heavy burden, need support and information, and have lack of knowledge and skills in carrying out their duties while caring for patients, because there have been changes in lifestyle before becoming a caregiver.

Aim Exploration of the healthcare journey post-stroke is incomplete without acknowledging the crucial role of family caregivers. With limited literature documenting the role of caregivers in the healthcare journey post-stroke, we aimed to describe the healthcare experiences of family caregivers and stroke survivors across different caregiver identities in Singapore. Methods We conducted a qualitative descriptive study involving semi-structured interviews with transcripts analysed using thematic analysis. 26 stroke survivors and 35 family caregivers purposively sampled from multiple settings. Results Findings were summarized into seeking care and experience of healthcare encounters. Seeking care comprised of the following themes: factors influencing seeking care, decision to seek care and role of caregiver in seeking care. Experience of healthcare encounters comprised of the following themes: service around the patient, service with care and role of caregiver in healthcare encounters. Conclusion Multi-dimensional role of caregivers in healthcare experience emerged as a major finding. Unique to our Asian context, as per the participants’ accounts, family caregivers seemed to be central in healthcare decision-making for stroke survivors, with adult-child caregivers commonly reported being engaged in collaborative decision-making. While spousal caregivers preferred a relational healthcare experience, adult-child caregivers preferred a transactional one. Practical implications include equipping caregivers with skillset to make healthcare decisions, provision of supportive decision-making environment for caregivers and reinforcing communication aspects in the medical, nursing and allied healthcare curriculum to improve healthcare experience.

For patients, the social and emotional repercussions of stroke include shame, personality changes, and upheavals experienced by the couple (i.e. patient and main family caregiver). These impacts on the couple ‘patient/family caregiver’ are scarcely documented. Focusing on the perceptions of the patients and the family caregivers living at home, two years after a stroke occurrence, the aims of the study were to analyse the concordance of attitudes towards the emotional and social repercussions of stroke and to determine the profiles of the differing dyads. Two researchers conducted separate face-to-face structured interviews with stroke survivors and their family caregivers. Eleven items, identified through a content analysis of interviews and after a qualitative process of generating questionnaire items, assessed the commonly experienced impact of stroke on the family, the social repercussions of stroke, and its emotional effects on the stroke survivors. The kappa concordance coefficient was used to determine the response convergence between patients and family caregivers. Four items, selected by a panel of experts, were included in logistic regressions (i.e., demographic characteristics and patients’ impaired functions) to identify the differing dyadic profiles. Family caregivers’ and patients’ attitudes towards the social repercussions of stroke were similar. Patients with motor deficiencies tended to underestimate the upheaval brought to their couple by stroke, whereas caregivers of language-impaired patients tended to underestimate their feelings of shame and demeaning. Communication disturbances, but also residual physical disabilities in stroke survivors, may affect the understanding of each other’s attitudes within dyads. In order to avoid dysfunctional relationships between family caregivers and patients, healthcare professionals need to pay special attention to this issue, especially in cases of aphasia and motor deficiencies.

ABSTRACT This study aimed to explore the relationships between social capital, family functioning, and caregiver burden in caregivers of older adults with post-stroke dementia (PSD). A cross-sectional correlational study was conducted between November 2017 and April 2018 among 105 caregivers of older adults with PSD using a demographic questionnaire, the Social Capital Scale, Family APGAR Index (APGAR), and Caregiver Burden Inventory (CBI).An independent samples t-test was also utilized to compare caregiver burden based on demographic characteristics. Statistical analysis comprised Pearson correlation analysis and multiple regression analysis using SPSS version 22.0 to identify influencing factors. Significant negative correlations were found between caregiver burden and variables such as social capital (p < .001) and family functioning (p < .01). The results of the multivariate analysis revealed that social capital, physical condition, and duration of caregiving were the main influencing factors (β = 58.162, ΔR2 = 0.289, p < .001). These findings suggest that nurses should continue to prioritize the well-being of patients’ families, and collaborative efforts should be made to establish care facilities that cater to both medical and social needs.

Background: Stroke survivors tend to face disabilities that impact activities of daily living. However, limited studies, particularly across diverse cultural contexts in Thailand, have examined the factors affecting the ADL of stroke survivors from the perspectives of family caregivers.Purpose: The study aimed to examine factors predicting the activities of daily living of stroke survivors from the perspectives of family caregivers.Methods: A cross-sectional correlational research design using secondary data was employed. Ninety-nine family caregivers from diverse cultural backgrounds who met the inclusion criteria were recruited into the study using stratified random sampling and completed seven questionnaires, including demographics, perceived self-efficacy (SE), activities of daily living (ADL), family relationships, social support, caregiver stress, and illness beliefs. All data were analyzed using Pearson’s product-moment correlation coefficient, the chi-square test, and multiple linear regression with the stepwise method.Results: Family caregivers reported that stroke survivors had a moderate level of ADL (n = 99, M = 12.88, SD = 6.23). Age, gender, communication ability, and severity of stroke disease among stroke survivors were significantly correlated with ADL (p < 0.01). Moreover, the severity of stroke disease, gender, symptom improvement, education, and age of stroke survivors were significant predictors of ADL, accounting for 41.6% of the variance (F = 13.27, p < 0.001).Conclusion: This study indicates that the severity of stroke disease, gender, symptom improvement, education, and age of stroke survivors can predict ADL. These findings offer valuable insights for nurses, highlighting the importance of effectively rehabilitating stroke survivors before discharge from the hospital to home to achieve better clinical outcomes and an improved quality of life.

Stroke is a major cause of long-term disability in Indonesia, where family members often become primary caregivers with minimal formal support. In culturally rooted communities like East Java, caregiving is deeply influenced by local values, yet limited research has examined how these values shape caregiver resilience. This study aimed to explore how Javanese cultural beliefs influence the experiences and resilience of family caregivers providing home-based care for stroke survivors. Using a qualitative design, in-depth interviews were conducted with ten caregivers in East Java, employing interpretative phenomenological analysis. Thematic analysis identif ied four key themes: caregiving as a devotion and cultural duty; the family’s understanding of illness as a foundation for meaning; home-based continued care with love, hope, and spirituality; and emotional dynamics in the early stages of caregiving. Caregiving was seen not only as a responsibility, but as a moral and spiritual calling rooted in values such as Ngabekti (devotion), Nrimo (acceptance), and Pasrah (surrender). Participants employed both biomedical and traditional practices, showing creativity in overcoming limited resources. These f indings highlight the importance of culturally responsive nursing care that addresses the emotional, spiritual, and informational needs of caregivers. Supporting caregiver resilience through culturally informed nursing and medical interventions may enhance stroke rehabilitation outcomes and promote caregiver well-being in similar community settings.

No abstract available

Stroke survivors depend on informal caregivers who face considerable financial, emotional, social, and physical demands. Although they are very involved, the actual experiences of caregivers remain minimally studied. While caregiver burden is widely documented, limited research has explored the gendered nuances and culturally specific coping mechanisms among stroke caregivers in South India. To investigate the lived experiences of informal caregivers tending to stroke survivors. This study employed a descriptive phenomenological design to capture the lived experiences of caregivers. It is a Colaizzi phenomenological study that examined data from in-depth interviews conducted between November 2024 and January 2025 with sixteen main caregivers at SRM Medical College & Research Centre, utilizing Colaizzi’s approach. Participants were chosen using the Purposive sampling method until data saturation was reached. The interviews’ transcriptions were examined for developing themes. Themes identified include emotional burden, physical and health-related burden, economic burden, and social isolation. Caregivers reported anxiety, depression, guilt, and helplessness, reflecting an emotional and psychological burden. Caregivers suffered from sleep deprivation, chronic pain, tiredness, neglected self-care, physical and health-related burdens. Significant stress resulted from economic burden, including growing healthcare costs, job loss, and insufficient financial support. Caregivers reported changed family dynamics, social isolation, and loneliness as part of their social and relationship impact. Many caregivers said that despite these challenges, they experienced personal development, strengthened emotional bonds with their loved ones, and developed greater resilience in coping with their caregiving responsibilities. In particular, informal caregivers of stroke survivors deal with several challenges, particularly in emotional and physical spheres. Although obstacles at first seem overwhelming, many adjust and find significance in their caring responsibilities. Maintaining the psychological, physical, financial, and social needs of caregivers and patients depends on complete support plans covering all aspects of their needs.

Background: Stroke, characterized by high morbidity, disability, and mortality, has increasingly affected younger populations. In China, the proportion of strokes among individuals aged 40-64 has risen significantly. This study explored the caregiving burden and family resilience among caregivers of young and middle-aged first-stroke survivors, comparing caregivers of those with good versus poor functional outcomes. Methods: A cross-sectional survey was conducted from January to June 2024, involving 119 family caregivers of stroke survivors from two tertiary hospitals in Yancheng City, Jiangsu Province, China. Data were collected using the Modified Rankin Scale (mRS), Zarit Burden Interview (ZBI), and the Family Resilience Assessment Scale (FRAS-C). Independent t-tests and Pearson's correlation analysis were performed to examine differences in care burden and family resilience between caregiver groups. Results: Caregivers had an average ZBI score of 28.32±20.66, with 39.5% reporting no or minimal burden, 29.4% light burden, and 25.2% moderate burden. Caregivers of patients with mRS 0-2 had significantly lower care burdens (23.84 vs. 37.17, p<0.01) and higher family resilience (98.22 vs. 93.00, p<0.05) compared to those with mRS 3-5. Care burden was negatively correlated with family resilience (r=-0.243, p=0.008). Conclusion: Caregivers of young and middle-aged stroke survivors generally experienced mild to moderate care burden, while family resilience was moderate. Caregivers of survivors with better functional outcomes had lower care burdens and higher family resilience. These findings highlight the need for targeted interventions to support caregivers of survivors with poorer functional outcomes to enhance family resilience and reduce care burden.

This secondary data analysis sought to identify characteristics associated with mistreatment among chronic stroke survivors who transition to dementia. We examined baseline data from a multi-time series survey study (n = 453; where caregivers of those with stroke n = 107, and those without stroke, n = 346) on caregiving experiences influencing dementia family caregivers’ abusive or neglectful behaviors. Inferential statistical analysis indicated that baseline mistreatment rates were similar across stroke and non-stroke subgroups, though this finding was not significant. Caregiver depression was significantly associated with mistreatment. Multi-morbidity, prescription medication use, and limited mobility were more common among stroke survivors. Stroke-related complications may impose a greater burden of care upon family caregivers whose care recipients also have dementia. Determining timepoints of heightened mistreatment risk for stroke survivors may significantly impact long-term trajectories of stroke management to screen and identify those who may benefit from added support and intervention.

Background: Social and health trends (e.g., the aging population and growth of chronic diseases) place stroke and informal care as global concerns. After a stroke, most survivors return home relying primarily on informal caregivers, who ensure essential daily support. Although informal care’s adaptive and learning dimensions are evident, it has rarely been problematized. Understanding what and how learning processes emerge in the context of informal caregiving may be useful for the development of health, social, and educational strategies that support caregiving contexts.

No abstract available

Introduction The sudden undertaking of being a caregiver for a spouse or family member afflicted with a stroke can cause adverse psychological consequences. In Malaysia, the majority of stroke patients return home to be cared for by family members and continue rehabilitation as outpatients. In most local urban communities, the practice of shared caregiving is observed among stroke caregivers either out of necessity or familism. Sole or primary caregivers who share their homes with stroke patients would be more challenged physically and psychologically compared to secondary or joint caregivers. Sharing the caregiving responsibilities is believed to lighten the burden on primary caregivers. This study aims to determine the proportion and associated factors of depression among urban-dwelling caregivers of home-bound stroke patients receiving long-term care from a university-based primary care clinic. Methodology A cross-sectional study involving 123 primary and secondary caregivers of stroke patients was conducted at Klinik Primer PPUKM Cheras (KPPC) and the outpatient Medical Rehabilitation Services Department Hospital Canselor Tuanku Muhriz (HCTM), Cheras Kuala Lumpur. A self-administered questionnaire comprising of sociodemographic characteristics, the Beck Depression Inventory-II (BDI-II), and the Multidimensional Scale of Perceived Social Support questionnaire (MSPSS) was used. The functional status of the stroke patients was assessed using the Modified Rankin Score (MRS). Results The proportion of respondents with depression was 20.3% (n=25). Depression was associated with caregivers’ age (CI=42.23-50.09, p=0.016), presence of illness (p=0.001), and being a sole caregiver (p=0.001). There is also an association found between caregiver depression with longer duration post-stroke (CI= 12.75-16.13, p<0.001), longer time spent for caregiving (CI= 117.73-135.87, p=0.004), and more functionally dependant patients (p=0.002). Conclusion Depression affects one in five caregivers of home-bound stroke patients residing in the urban community. The primary care provider should be more vigilant in screening for depression, especially among caregivers who are from older age groups, have ongoing health problems, and are sole caregivers to patients who are functionally dependant.

Introduction Caring for stroke survivors in primary care settings substantially impacts family life and health. Caregivers of stroke survivors have different challenging experiences in providing care in relation to family happiness. This study aimed to explore family happiness and its contributing factors among family members caring for stroke survivors in suburban Thailand. Method Qualitative semi-structured interviews and observations were conducted among 54 family caregivers in suburban Thailand communities from January to July 2020. Interviews and focus group discussions were digitally recorded, independently transcribed and analysed using ATLAS.ti 8.0. Qualitative data analysis method was used. Results Family happiness was found to help a family function and be satisfied with caring. The analysis revealed three themes for achieving family happiness: 1) ideal caregiver characteristics: virtue, love and gratitude, experience in caring, good health and self-care ability, good management of emotions and freedom to manage problems and obstacles; 2) family function: family structure, roles and duties, relationships and management of family problems; and 3) resource support: financial, health and environmental supports. Conclusion The findings demonstrate how life adaptations can improve family happiness within families of stroke survivors. Understanding caregivers' perceptions of their experiences in caring for stroke survivors is a challenge for healthcare providers; overcoming this could transform an unpleasant life into caregiving happiness. Appropriate and practical support from healthcare authorities could empower families of stroke survivors to succeed in caregiving and achieve family happiness.

Background Stroke is a leading cause of disability worldwide, significantly impacting patients and their families. Family caregivers, as the primary providers of care for stroke patients, face dynamic and evolving challenges throughout the patient’s recovery journey. Objective This study aims to explore the comprehensive care needs of family caregivers of stroke patients with disabilities within the Chinese cultural context. The study is guided by the “Timing It Right” (TIR) theory, a conceptual model emphasizing dynamic support aligned with caregivers’ evolving needs across distinct care phases. Methods Using a phenomenological qualitative design, this study recruited 48 family caregivers of stroke patients with disabilities from a tertiary hospital in Xiangtan City, China, from February 2024 and November 2024. Data were collected through semi-structured interviews and were analyzed thematically using NVivo 12 software. This study explored caregivers’ experiences and needs across five key phases of care: diagnosis, stabilization, discharge preparation, adjustment, and adaptation. Results In this study, family caregivers of stroke patients with disabilities expressed diverse needs across different phases of the patient’s illness. (1) Diagnosis phase: hospital environment adaptation, examination navigation and disease knowledge acquisition. (2) Stabilization phase: rehabilitation skill development and caregiver well-being support. (3) Discharge preparation phase: home care readiness and health behavior guidance. (4) Adjustment phase: sequelae management and care continuity needs. (5) Adaptation phase: obtaining follow-up resources and safety management. Caregivers’ needs were influenced by cultural expectations(e.g., Chinese traditional filial piety norms requiring family-based caregiving), resource limitations, and their evolving role over time. Conclusion The findings emphasize the necessity of developing culturally sensitive interventions that are specifically tailored to meet the needs of family caregivers across distinct phases of care. Consideration should be given to integrating multidisciplinary teams, leveraging telemedicine for continuity of care, and designing caregiver education programs aligned with Confucian family values. These strategies can reduce caregiver burden and improve stroke rehabilitation outcomes in resource-limited settings.

Globally, stroke remains one of the leading causes of long-term disability and death, with disproportionate burden in low and middle-income countries (LMICs). Stroke survivors in LMICs face several challenges and unmet care needs after hospital discharge due to limited healthcare infrastructure. Additionally, stroke survivors are discharged while unable to perform activities of daily living, leading to dependence on informal caregivers who are not trained in managing care at home. In Tanzania, where structured post-stroke support systems are limited, understanding stroke recovery journey and home care experiences is critical to inform more responsive stroke transitional care models. Therefore, the aim of this study was to explore the post-stroke recovery and home care challenges faced by survivors and their caregivers in Tanzania. This qualitative study was conducted at a neurology clinic of a tertiary referral hospital in Dar es Salaam, Tanzania. Using a descriptive phenomenological approach, in-depth interviews were conducted with a purposive sample of unmatched 16 pairs of stroke survivors and caregivers. Data were analyzed thematically in Dedoose software using an inductive approach to capture patterns and meanings across participant narratives. The study was approved by the Institutional Review Board of Muhimbili University of Health and Allied Sciences (Ref. No. MUHAS-REC-04-2024-2139). Three major themes emerged: (1) post-stroke limitations and adjustments; (2) caregiving burden and coping strategies; and (3) home care challenges after stroke. Stroke survivors faced multiple post-stroke limitations which restricted their independence and slowed recovery. Caregivers, in turn, experienced considerable physical, emotional and financial burdens which were compounded by insufficient caregiving training. Home care was further complicated by minimal family support, poor home environment, financial constraints and adverse events. Despite these challenges, both survivors and caregivers demonstrated resilience by adopting coping strategies to navigate the demands of post-stroke recovery and home care needs. Although stroke survivors and their caregivers demonstrated remarkable resilience in the recovery journey, they continue to encounter complex home care challenges such as inadequate caregivers’ competence, poor home care environment, financial hardships and uncoordinated follow-up care which lead to adverse events. Bridging these gaps calls for comprehensive discharge planning, structured home-based follow-up, caregiver training and supportive national policies that ensure continuity of care.

Abstract Background Stroke is a leading cause of death and disability globally, with high incidence in aging Asian populations. Elderly stroke survivors often have physiological dysfunctions, relying heavily on primary informal caregivers. However, Chinese caregivers face unique cultural and practical challenges (e.g., close bonding, filial piety-driven self-sacrifice, urban-rural medical insurance gaps) has not been explored from a qualitative perspective. Purpose This study aimed to explore the caregiving experiences, emotional states, and unmet needs of primary caregivers of elderly stroke patients in China, using Maslow’s Hierarchy of Needs as a theoretical framework to guide analysis and identify targeted support strategies. Methods A descriptive qualitative study was conducted from March to April 2024 in the neurology department of a tertiary Grade-A hospital in southwestern China. Purposive sampling with maximum variation was used to recruit 19 primary caregivers.Data were collected via 30–45 minute semi-structured one-on-one interviews and analyzed using directed content analysis with NVivo software. Results Three core themes emerged: 1) Caregiving challenges (physical/mental exhaustion, economic pressure, role adaptation difficulties, lifestyle disruption); 2) Caregiver growth (enhanced mental resilience, improved health awareness, strengthened family bonds, reshaped life meaning); 3) Diverse support needs (instrumental, informational, emotional, social support). These themes mapped to all tiers of Maslow’s Hierarchy of Needs. Conclusions Chinese caregivers of elderly stroke patients face multi-dimensional burdens but also experience personal growth. Healthcare professionals should use Maslow’s theory to provide comprehensive support to improve caregivers’ well-being and long-term care quality. Plain language summary What is known? Caregivers are under tremendous physical and emotional stress. Caregivers are in desperate need of social assistance to alleviate feelings of loneliness and powerlessness. Nurses play a vital role in reducing caregivers’ stress and enhancing their capacity for care. What is new? Cultural and Contextual Insights on Caregiving in Mainland China: This study offers an in-depth exploration of the emotional journey and unmet needs of primary caregivers of elderly stroke survivors within the unique socio-cultural context of mainland China, highlighting the impact of filial piety norms and healthcare system characteristics. Human-Centered Care Paradigm in a Chinese Context: By emphasizing the interdependence of patient outcomes and caregiver well-being within familial and cultural expectations, this research advocates for an integrated care model tailored to the realities of Chinese family structures and support systems. Policy and Practice Implications for China: Findings underscore the urgency of developing culturally and systemically appropriate support mechanisms (e.g., respite care, psychological counseling, community resources) within mainland China to alleviate caregiver burden and improve long-term care sustainability.

Abstract Purpose Understanding navigational barriers and facilitators has the potential to advance equitable stroke care delivery. The aim of this study was to explore, using a qualitative study, the experiences of stroke survivors and their families as they journey through the stroke care system, both before and during the COVID-19 pandemic. Methods In-depth semi-structured interviews were conducted with 18 stroke survivors and 12 family members during 2021 and 2022. Participants were recruited through voluntary organisations, social media, and stroke support groups. Data analysis followed a systematic process guided by the framework method with steps including familiarisation, coding, framework development, and charting and interpretation. Results The experiences of navigating stroke care were particularly challenging following discharge from hospital into the community. Barriers to stroke care continuity included insufficient appropriate services and information, unsatisfactory relationships with healthcare professionals and distressed mental health. There were particular navigational challenges for survivors with aphasia. Facilitators to effective navigation included having prior knowledge of the health system, harnessing support for care co-ordination, and being persistent. Conclusion Greater support for patient navigation, and person-centred referral pathways, particularly during times of increased pressure on the system, have the potential to improve access to services and wellbeing among stroke survivors. IMPLICATIONS FOR REHABILITATION Interactions between practitioners and stroke survivors need to be simple, empathetic, and transparent, using communication tools when needed for older stroke survivors or those with a communication or cognitive disability Navigation of the care system is a significant challenge and source of emotional distress for stroke survivors and their families, likely leading to foregone care and inequity in access to services. This indicates a need for both clearer, more standard stroke care pathways that are easier to navigate, and evidence-based patient navigation support programmes. The development of navigational interventions and stroke care pathways would benefit from co-design with motivated and knowledgeable stroke survivors. Taking advantage of the wealth of lived experience, and stroke survivors’ capacity and passion for advocacy, has the potential to empower the wider stroke community.

After stroke rehabilitation, patients need to reintegrate back into their daily life, workplace and society. Reintegration involves complex processes depending on age, sex, stroke severity, cognitive, physical, as well as socioeconomic factors that impact long-term outcomes post-stroke. Moreover, post-stroke quality of life can be impacted by social risks of inadequate family, social, economic, housing and other supports needed by the patients. Social risks and barriers to successful reintegration are poorly understood yet critical for informing clinical or social interventions. Therefore, the aim of this work is to predict social risk at rehabilitation discharge using sociodemographic and clinical variables at rehabilitation admission and identify factors that contribute to this risk. A Gradient Boosting modelling methodology based on decision trees was applied to a Catalan 217-patient cohort of mostly young (mean age 52.7), male (66.4%), ischemic stroke survivors. The modelling task was to predict an individual’s social risk upon discharge from rehabilitation based on 16 different demographic, diagnostic and social risk variables (family support, social support, economic status, cohabitation and home accessibility at admission). To correct for imbalance in patient sample numbers with high and low-risk levels (prediction target), five different datasets were prepared by varying the data subsampling methodology. For each of the five datasets a prediction model was trained and the analysis involves a comparison across these models. The training and validation results indicated that the models corrected for prediction target imbalance have similarly good performance (AUC 0.831–0.843) and validation (AUC 0.881 - 0.909). Furthermore, predictor variable importance ranked social support and economic status as the most important variables with the greatest contribution to social risk prediction, however, sex and age had a lesser, but still important, contribution. Due to the complex and multifactorial nature of social risk, factors in combination, including social support and economic status, drive social risk for individuals.

Introduction As the primary bearers of post-stroke rehabilitation and long-term care, caregivers of stroke patients in China face a profound sense of social alienation that has not yet been fully recognized due to issues such as role-related limitations. Especially in the context of China’s family caregiving model and evolving social support system, this sense of alienation not only undermines the physical and mental health of caregivers, but also ultimately affects the quality of ongoing rehabilitation support. This is undoubtedly detrimental to both care providers and recipients. Therefore, the aim of this study was to investigate the level of social alienation and its influencing factors among Chinese stroke caregivers. Methods Participants for this study were selected from caregivers of stroke patients who visited the neurology department of a comprehensive hospital in Kunming between February and August 2023. A total of 222 stroke caregivers were assessed using the General Alienation Scale, the Zarit Caregiver Burden Interview, the Social Support Rating Scale, and the University of California at Los Angeles-Loneliness Scale. Results The mean social alienation scores for the stroke caregivers included in this study were 40.45 ± 4.76 (range:24-51).Multivariate linear regression analysis revealed that the marital status of caregivers, whether they live with the patient, their knowledge of the disease, social support, caregiving burden, and loneliness are significant factors influencing social alienation in stroke caregivers (all p < 0.05). Conclusions Caregivers of stroke patients experience high levels of social alienation. It is crucial to address the social alienation of these caregivers, particularly those who live with the patient, are divorced or widowed, have limited knowledge of the disease, bear a heavy caregiving burden, have low levels of social support, and experience high levels of loneliness. Targeted and individualized interventions should be developed to reduce their social alienation.

No abstract available

Introduction: Stroke imposes a significant burden on individuals, families, and healthcare systems, with high readmission rates and healthcare utilization. It disproportionately affects racial/ethnic minorities, exacerbating healthcare disparities. There is a critical need for tailored, patient-centered interventions, particularly for minority populations. Objectives: This research identifies key themes in stroke survivors' and care partners' perspectives post-stroke, and examines the demographic and social determinants of health impacting outcomes. The study focuses on how these factors influence survivors' experiences with a digital health platform offering personalized support through remote clinical guidance and curated educational content. Methods: A mixed-methods, exploratory design was employed with 50 participants, including 36 unique stroke survivors (52.7% female, 47.2% male) and 13 care partners (84.6% female, 15.3% male), followed for 90 days for comprehensive post-stroke care via Principal Illness Navigation (PIN). The average age of participants was 59 years, with close to 60% being non-white. Participants provided feedback through focus groups conducted via video-conferencing between December 2022 and March 2024. These sessions included up to 3 participants, a facilitator, a Kandu representative, and lasted no more than 60 minutes. Results: Participants were highly engaged, with an average of 12 navigator touchpoints over 12 weeks, totaling 7.65 hours of one-on-one navigator time. The cohort identified an average of 3.1 social determinants of health (SDOH) needs, with mental health (43.9%), financial strain (34.1%), and family/community support (31.7%) being the most common. Focus group themes included: (1) Multi-faceted Therapeutic Support, (2) Educational Content&Services, (3) Triaging/Clinical Care Guidance, (4) Behavioral Health Support, (5) Connectivity/Community, (6) Programmatic Value, and (7) Constructive Feedback/Future Opportunities. Conclusion: This study offers insights into the effectiveness of a digital health and clinical navigation platform in enhancing stroke recovery and person-centered care. The program addressed core themes impacting patient and care partner experiences, such as access to educational resources, real-time clinical guidance, intervention compliance, and behavioral health needs. These findings can inform future interventions aimed at providing post-acute stroke navigation and reducing healthcare disparities.

ABSTRACT Purpose The impact of a stroke is particularly evident during the transition home, with reported unmet needs. However, little is known about post-stroke adaptation in Portugal. This study aimed to understand how Portuguese people with stroke and their informal carers/family adapt over time, and how health professionals support their adaptation. Methods A multi-perspective, longitudinal qualitative study was conducted using in-depth semi-structured interviews one and six months after inpatient discharge. A purposive sample of 24 participants (8 triads) participated. Thematic and narrative analysis strategies were used. Results Three themes were identified: Managing change over time; Balancing support over time; Changing priorities. These suggest the importance of time and gradual adjustment of health professionals’ approach throughout the rehabilitation process tailored to people with stroke’ and carers’ needs. Both valued positive thoughts and support from others to adjust life goals and find a balance between a mutual/bidirectional support and time for themselves. Conclusions Findings show that the manner in which changes after a stroke are approached may be positively transformed to provide strength. As a result of the deeper understanding gained from this study, health professionals may be better placed to acknowledge the needs of people with stroke and carers and find effective ways of supporting them.

No abstract available

Background Coping with disabilities after stroke in midlife can be challenging, with potential gender differences that may have implications for quality of life (QoL) and support. This study aimed to explore QoL and resilience among midlife stroke survivors from a gender perspective. Methods Quantitative questionnaire data related to demographics, function, service, resilience and QoL were gathered from a stroke register including 51 individuals (of whom 29 were men) aged 40–64 years. Results of gender were compared using two-sided t-tests and chi-square tests. Additionally, eight semi-structured telephone interviews were conducted, with equal representation of men and women. Qualitative content analysis was used to explore deeper and capture nuanced insights. Results The quantitative analysis revealed no statistically significant gender differences. However, the qualitative data revealed three central themes: (1) “A Forced Lifestyle Change,” (2) “Lack of Understanding and Support,” and (3) “Importance of Independence and Coping Strategies.” Men talked about feelings of being restricted in their post-stroke lives and expressed a greater need for support from healthcare providers, family, and friends. In contrast, women described having more well-developed coping strategies and reported a higher perceived QoL. Conclusion Qualitative findings suggest men may face greater challenges in adapting to post stroke life. The result suggests that men struggle with accepting limitations that prevent them from participating in social contexts and require more support from healthcare services. These difficulties, potentially due to less effective coping mechanisms, may result in a lower QoL. Gender-sensitive interventions addressing these needs could improve QoL and adaptation.

Abstract Elder mistreatment has negative implications for individuals, families, communities, and society as a whole, yet little research exists on interventions or prevention approaches. This study reports on the results from the pilot test of an elder mistreatment prevention program. The Comprehensive Older Adult Caregiving Supports (COACH) program was developed as a strengths-based person-centered caregiver support intervention, built on evidence-based prevention approaches used in other types of family violence. In a double-blind randomized controlled trial, family caregivers (n=80) of older adults aged 65 and older who were members of Kaiser Permanente completed surveys at baseline, post-test, and three-month follow-up. The primary outcome was elder mistreatment; additional proximal outcomes were caregiver burden, quality-of-life, anxiety, and depression. All analyses were conducted using nonparametric tests. The treatment group had no mistreatment at 3-month follow-up, a significantly lower rate than the control group (treatment=0%, control=23.08%, p=0.010). Among the proximal outcomes, a significant difference in social quality-of-life was seen at post-test but did not persist to the 3-month follow-up. No further proximal outcome effects were detected. This pilot program offers a promising model to reduce elder mistreatment and its resultant impacts on the health and well-being of both caregivers and the older adults they care for. In helping to ameliorate mistreatment, COACH supports individuals providing crucial care to older adults with chronic health conditions and reduces the burden of addressing this complex condition for an already strained geriatric health and social service delivery system.

Introduction Understanding local complexities and challenges of stroke-related caregiving are essential to develop appropriate interventions. Our study aimed to characterize the impact of post-stroke care among informal caregivers in a setting of transitioning economy. Materials and methods Qualitative study based on in-depth interviews with primary caregivers of stroke survivors in Lima, Peru. Transcribed data was organized around the following themes: emotional impact of caregiving, main stress factors and coping mechanisms to deal with the caregiving role, as well as the unmet needs of caregivers. Results We interviewed twelve caregivers, mean age 52.5 years. Eight were females, who were either the spouse or child of the stroke survivor. Stroke patients had a median age of 70 years, range 53–85 years. All participants reported having experienced emotional stress and depressive symptoms as a result of caregiving. Although most had family support, reduced social activities and added unanticipated financial burdens increased caregiver's stress. None of the caregivers had received training in post-stroke care tasks after the patient's discharge and only a few had received some psychological support. Almost all expressed the need to see a professional to improve their mental health. Keeping a positive attitude towards their relative's physical post-stroke condition was a key coping mechanism. Conclusions In the absence of structured institutional responses, family members are responsible of providing care for stroke survivors, a task escorted by major emotional, financial, and social strains. This burden could be prevented or curtailed if caregivers were to be targeted by interventions providing psychological and financial support, together with basic training on post-stroke care.

No abstract available

ABSTRACT Objective: African Americans are disproportionately affected by stroke in the United States (US). The purpose of this study is to explore experiences, wants, and needs of African Americans with stroke and their family caregivers residing in the stroke belt across the care continuum using the ‘Timing It Right’ (TIR) framework as a conceptual guide. Design: We conducted a series of focus groups among 20 African Americans living with stroke and 19 family caregivers. Focus groups were audio-recorded and transcribed verbatim. For this secondary analysis, we coded qualitative data using the TIR framework. Results: Participants in this sample identified pre-stroke needs in addition to the TIR phases that span across the care continuum and into community living. We identified four important contextual factors and real-world conditions that operate in the background and influence the post-stroke needs of this specific population across the TIR framework: (1) religion, faith, and church, (2) healthcare delivery, (3) community, and (4) sentinel events. Conclusions: We propose a TIR model that expands upon the original TIR framework which includes factors important for consideration when developing and delivering community-based interventions among African Americans with stroke and family caregivers in the southeastern US.

Background Stroke is a major cause of long-term disability and has a potentially enormous emotional and socio-economic impact on patients, their families, and health services. Perceptions of patients with stroke have already been studied worldwide, which are unique in terms of their cultural background. However, in India, there is a lack of studies about the experience of the disease by stroke survivors and their perspectives of understanding the situation. Objective This study aimed to explore lived experience of stroke survivors in India. Methods A phenomenological study design was used. In-depth interviews were conducted with a purposive sample of ten stroke survivors who had experienced post-stroke deficits three months to one year after stroke. Data were analyzed using Diekelmann’s hermeneutical approach to identify underlying themes. Results Two main themes emerged: (1) emergence of stroke (actual occurrence, mental perception, and recognition of illness) and (2) therapeutic concerns (enhanced and weakened recovery). Conclusion Recognizing how patients experience the illness is crucial in planning care for stroke survivors. Strengthening factors enhancing recovery and limiting the hindering factors through effective therapeutic management is a necessity. The findings might also contribute to refining existing interventions and designing holistic multi-component rehabilitation programs that facilitate easy recovery. The study also highlights the need for providing information to general public on recognizing warning signs of stroke.

ABSTRACT Purpose: Stroke survivors report poorer self-rated health (SRH) compared to the general population but there is limited understanding on what contributes to SRH. This ethnographic study examined the individual and contextual factors that shape stroke survivors’ SRH in a rural middle income country situated in South East Asia. Methods: Ethnographic methods which encompasses various data collection methods from different data sources were used in this study to describe the socio-cultural context of 16 stroke survivors living in a rural village. Within this context, the experiences of these participants were then interpreted in terms of what contributed to their perception of health and recovery, juxtaposed with objectively measure physical and cognitive states. Results: SRH reflected the post stroke adjustment of stroke survivors. Better SRH was influenced by good post-stroke adjustment that was achieved by a combination of physical functioning, cognitive functioning, emotional well-being and family support. Poorer SRH appear to reflect poor post-stroke adjustment regardless of the objective physical and cognitive states of the stroke survivors. It was also observed that cognitive deficits, though its presence was acknowledged by participants, were usually not taken into account when rating SRH. However, while physical functioning was perceived by participants to directly impact SRH, the presence of cognitive deficits (often in tandem with depressive symptoms) indirectly complicated the recovery of physical functions treasured by participants. Conclusion: Stroke survivors reporting poorer SRH warrant further attention and intervention from health practitioners supporting the longer-term needs of stroke survivors in similar settings.