Experiences of family caregivers of a hospitalized person

BackgroundPopulation aging in China has intensified psychological challenges for family caregivers. This study investigates the relationships among social support, caregiving experiences, and depressed mood in family caregivers of home-dwelling older adults with disabilities, aiming to provide theoretical guidance for enhancing caregivers’ physical and mental well-being and optimizing home-based care services.MethodsA random sample of 494 family caregivers from three districts in a specified city was surveyed. Data included demographics of family caregivers and care recipients, scores from the Social Support Rating Scale (SSRS), Zarit Burden Interview Scale (ZBI), Positive Aspects of Caregiving Scale (PAC), and Center for Epidemiologic Studies Depression Scale (CES-D 10). Statistical analyses comprised t-tests, ANOVA, Pearson’s correlation, and stratified linear regression.ResultsMean scores for social support, positive caregiving experience, caregiving burden, and depressed mood were 28.62 ± 5.82, 32.01 ± 6.13, 34.59 ± 18.41, and 8.22 ± 5.96, respectively. Depressed mood scores varied significantly with family caregivers’ education, self-rated health, and care recipients’ disability severity (P < 0.01). Social support was negatively correlated with both caregiving burden and depressed mood (P < 0.01), and positively correlated with positive caregiving experience (P < 0.01). Positive caregiving experience was negatively associated with caregiving burden and depressed mood (P < 0.01), whereas caregiving burden was positively correlated with depressed mood (P < 0.01). Regression analysis indicated that social support and positive experience negatively predicted depressed mood (path coefficients: -0.11 and − 0.37, P < 0.01), while caregiving burden had a significant positive effect (path coefficient: 0.35, P < 0.01).ConclusionSocial support exerts a direct negative effect on caregivers’ depressed mood, with caregiving experience playing a chain mediating role in this relationship. Strengthening the social support and enhancing the positive caregiving experience may reduce depressed mood. Governments and communities should strengen systemic support by establishing caregiver networks, expanding skill-building programs, and integrating mental health resources. These measures could empower family caregivers to manage responsibilities effectively, improving well-being for both family caregivers and care recipients.

BackgroundSupportive mobile apps are effective tools for family caregivers of persons with dementia to obtain online information and psychological support. Nevertheless, details about the experiences of family caregivers of persons with dementia using mobile apps are limited.ObjectiveThis study aimed to synthesize the perspectives and experiences of family caregivers of persons with dementia regarding supportive mobile apps.MethodsWe conducted a synthesis of qualitative research and searched 7 English-language databases and 4 Chinese-language databases. We included qualitative studies (peer-reviewed studies and gray literature) written in English and Chinese on the perspectives and experiences of family caregivers of persons with dementia regarding supportive mobile apps published from database establishment to March 2025. Two researchers independently screened the literature and used the JBI Critical Appraisal Checklist for Qualitative Research to conduct quality assessments on the final included studies. Themes were integrated using the 3-stage thematic synthesis approach by Thomas and Harden.ResultsA preliminary search yielded 4772 studies, of which 12 (0.25%) met the criteria. The included studies were from 7 different countries or regions, of which the only low- or middle-income country was Brazil. The studies involved a total of 232 family caregivers, most of whom were older adults and female. The integration of extracted content resulted in 4 themes: dynamic changes in value perception—complex attitudes toward mobile app adoption; from tools to partners—a technology-empowered multidimensional support system for family caregivers; external and internal barriers—challenges in family caregivers’ use of mobile apps; and person-centered design—future directions for improving mobile apps.ConclusionsThis study found that family caregivers’ attitudes toward using supportive mobile apps are influenced by their perceived value of mobile apps and their caregiving burden. In addition, such supportive mobile apps serve as valuable tools for family caregivers to enhance their caregiving abilities and efficiency, alleviate the burden of care, improve negative emotions, foster social connections, and promote self-care. Future mobile app design needs to address obstacles such as design flaws, family caregivers’ lack of technological literacy, time constraints, concerns about privacy breaches, and other device-related issues, with particular attention to the ease of use of mobile apps. Meanwhile, developers need to commit to designing personalized and multifunctional mobile apps as well as promote online collaboration among members of the care network. Overall, our study offers an important reference for developing person-centered supportive mobile apps for family caregivers of persons with dementia.Trial RegistrationPROSPERO CRD42024510905; https://www.crd.york.ac.uk/PROSPERO/view/CRD42024510905

BackgroundSpinal cord injury (SCI) often leaves affected persons with a lifelong demand for care. As a result, the effect of the condition goes beyond the injured person to affect family members and significant others who have to adjust their lives to provide care and support. However, little is known about the experiences of these family caregivers regarding the care of people with SCI in Ghana. Exploring their experiences would enhance the understanding of family caregiving of people with SCI and contribute to policy intervention.MethodsThis qualitative descriptive phenomenology study used the purposive sampling method to select 10 family caregivers. Data were collected using a semi-structured interview guide through individual in-depth interviews. Written informed consent was obtained and interviews were audio-recorded and transcribed verbatim. Data were manually analysed following Colaizzi’s method of data analysis.ResultsIn all, 4 main themes emerged from the analysis of data (1) becoming a caregiver, (2) roles of the caregiver, (3) the burden of caregiving, and (4) coping strategies. The family caregivers provided vital assistance to their relatives with SCI and experienced physical and financial burdens as a result of the care. Due to the strains involved in the caregiving process, family caregivers adopted various strategies to cope with the situation.ConclusionThis study has provided evidence of the lived experiences of family caregivers of people with SCI in the Ghanaian context and further supports the findings of previous studies. Measures including training, counselling, and instituting social support services for family caregivers should be considered by the management of healthcare institutions to enhance the experiences of family caregivers.

Evidence on differences in social network and their roles in associations between types of family caregivers and caregiving experience is limited. Based on the stress process model (SPM), we aimed to explore the different levels and interactions of social network and caregiving experience among spouses and adult-child caregivers. A questionnaire-based survey was conducted on a total of 146 dementia family caregivers (78 adult-child, and 68 spouses) in China. Data collection comprised four sections: (a) care-related stressors, (b) caregivers’ context, (c) social network using Lubben social network scale, and caregiving experience using short-form Zarit burden interview, and nine-item positive aspects of caregiving (PAC) scale. Linear regression, mediation model analysis, and interactive analysis were performed to explore associations between variables. Spouses experienced lower social network (β= -0.294, P=0.008) and higher PAC (β= 0.234, P=0.003) than adult-child caregivers, whereas no significant difference was found in caregiver burden between two groups. Mediation analysis suggested that associations between caregiver type and caregiver burden were indirect-only mediation effects by social network(β=0.140, 95%CI=0.066 to 0.228). The mediation effect of social network on caregiver type and PAC was the suppressing effect, and the interaction effect was significant (P for interaction =0.025). A higher social network was associated with higher positive aspects of caregiving among the spouse subgroup (β= 0.341, P=0.003). Social networks mediate responses to caregiving experiences among different care provider types and are vital intervention targets, especially for spousal caregivers. Our results can serve as references for identifying caregivers for clinical intervention.

The purpose of this study was to assess gender effects on family demands, social support and caregiver burden as well as to examine contributing factors of caregiver burden in caring for family members with mental illness. Providing continued care and support for people with mental illness is demanding and challenging. Findings of earlier caregiving studies on the role of caregiver gender in response to caregiver burden and caregiving-related factors have been inconsistent. Little research has been undertaken to examine gender effect on family demands, social support and caregiver burden in Taiwanese family caregivers of individuals with mental illness. Cross-sectional, descriptive correlation design. Data from 43 families, including at least one male and female family caregiver in each family, were analysed using descriptive statistics, principal component analysis and mixed linear modelling. Demographic data, Perceived Stress Scale, Perceived Social Support and Caregiver Burden Scale-Brief were used to collect data. Female family caregivers perceived less social support and experienced higher degrees of caregiver burden compared with male family caregivers. In contrast, no significant gender effect was associated with family demands. Family caregivers with greater family demands and less social support experienced higher degrees of caregiver burden. The results reinforced those of previously published studies that caregiver burden is highly prevalent among female family caregivers. Caregiver gender appears to be highly valuable for explaining family demands, social support and caregiver burden. Health care professionals should continue to collaborate with family caregivers to assess potential gender effects on available support and design gender-specific interventions to alleviate caregiver burden.

Components and Correlates of Family Burden in Schizophrenia

BackgroundParkinson’s disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and – if needed – the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD.Methods/designWe will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5–15 patients with PD and their family caregiver will be followed prospectively for 8–12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver.DiscussionThis study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

Dynamics of informal BMT caregiving

BackgroundThere is a wealth of literature exploring the experiences of family caregivers of people with severe mental illness (SMI) in western countries, however, this topic has been neglected in the Middle East, despite families being the main source of caregiving in this context. The purpose of this review was to conduct a systematic review and qualitative meta-synthesis to explore the experiences of family caregivers living in countries in the Middle East caring for a relative with severe mental illness.MethodsA systematic review and meta-synthesis were conducted, to comprehensively gain a thorough and detailed overview of what is known about family caregivers’ experiences from published qualitative research in the Middle East geographical area from inception to May 2021. The review protocol was pre-registered with PROSPERO (Ref: CRD42020165519).ResultsThe review identified twelve qualitative studies that explored caregivers’ experiences of caring for relatives with SMI in Middle East countries. Family caregivers’ experiences were captured under seven overarching themes. The participants across all studies reported negative consequences of providing care, increased burden and emotional distress. Many experienced issues with family/marital relationships and stigmatizing attitudes and behaviours from their communities. Caregivers expressed the need for increased support which was perceived to have a critical role in improving family caregivers’ experiences.ConclusionsThe meta-synthesis revealed many challenges and issues that affect caregivers of people with SMI in the Middle East. Family caregivers experienced distress and burden, and reported significant impact on their psychological well-being. Their experiences highlight the urgent need to provide more support for family caregivers in Middle East countries.

There is a wealth of literature exploring the experiences of family caregivers of people with severe mental illness (SMI) in western countries, however, this topic has been neglected in the Middle East, despite families being the main source of caregiving in this context. The purpose of this review was to conduct a systematic review and qualitative meta-synthesis to explore the experiences of family caregivers living in countries in the Middle East caring for a relative with severe mental illness. A systematic review and meta-synthesis were conducted, to comprehensively gain a thorough and detailed overview of what is known about family caregivers' experiences from published qualitative research in the Middle East geographical area from inception to May 2021. The review protocol was pre-registered with PROSPERO (Ref: CRD42020165519). The review identified twelve qualitative studies that explored caregivers' experiences of caring for relatives with SMI in Middle East countries. Family caregivers' experiences were captured under seven overarching themes. The participants across all studies reported negative consequences of providing care, increased burden and emotional distress. Many experienced issues with family/marital relationships and stigmatizing attitudes and behaviours from their communities. Caregivers expressed the need for increased support which was perceived to have a critical role in improving family caregivers' experiences. The meta-synthesis revealed many challenges and issues that affect caregivers of people with SMI in the Middle East. Family caregivers experienced distress and burden, and reported significant impact on their psychological well-being. Their experiences highlight the urgent need to provide more support for family caregivers in Middle East countries.

Objective To get a more comprehensive view of caregiving experiences, and describe the caregiver burden and the positive aspects of caregiving of family caregivers of senile dementia patients in community and to explore the relationship between the caregiver burden and the positive aspects of caregiving. Methods Totally 80 family community-dwelling caregivers of senile dementia patients in community were investigated by Caregiver Burden Inventory (CBI) and Positive Aspects of Caregiving (PAC) questionnaires. Results The score of CBI was 54.73±13.15 and the score of PAC was 28.53±5.37. The score of PAC was negatively correlated with the caregiver burden (r=-0.243, P<0.05). Conclusions The caregiver burden of the family community-dwelling caregivers of dementia patients is high and the positive aspects of caregiving is at middle level. Professional help and support should be provided to the family caregivers of dementia patients by the community health service centers on the premise that the caregiving experience is fully understood. Our aim is to reduce their burden, strengthen the caregiving skills and improve the positive aspects of caregiving simultaneously. Key words: Dementia; Caregiving experience; Caregiver burden; Positive aspects of caregiving; Family caregivers

The aim of the study was to clarify the care experience of primary caregivers when caring for a terminal cancer patient in the home with the assistance of a home palliative care service. Participants were asked to provide background data and to evaluate their experience of caregiving and of the patient's response throughout the period of home palliative care, up to the time of death. One hundred twelve primary family caregivers were a mailed self-report questionnaire, and 74 valid questionnaires were returned (response rate 66%). Ninety percent felt that the patient's condition of mind and body was reasonably stable, and 75% felt that the death was peaceful. About 90% reported a deepening of their bond with the patient and that the bond of other family members deepened also. Sixty percent reported that the burden of caregiving was not too great or not felt at all. Approximately 90% judged that the patient retained his or her own personal qualities to the end. Ninety percent also felt that they had done their best in their caregiving and judged that home care had been beneficial for the deceased, for the primary caregiver him/herself, and for other family members. These primary caregivers' evaluations of caring for a terminally ill patient at home in conjunction with a home palliative care service were both high and positive. Our findings suggest that it is important to maintain the patient's personal qualities up to the time of death through appropriate symptom management, to respect the family bond of the household, and to provide professional support in order to reduce the load on the family. If appropriate care is provided, peaceful home death will be possible, resulting in significant benefits for patients and their families in Japan.

The aim of this study was to investigate perceived caregiver burden and quality of life (QOL) among Chinese family caregivers for people with serious mental illness (SMI). This is a cross-sectional study design. Participants were recruited and independently interviewed using the Chinese version of the World Health Organization Quality of Life-Brief Form, Hospital Anxiety and Depression Scale, Social Support Rating Scale, and Family Burden Interview Schedule as outcome measures. In this study, 363 family caregivers were recruited. This study found that caregivers in Guangzhou perceived significantly higher levels of burden than did family caregivers in Hong Kong (all p values <.001). Weekly hours of contact with patients; subjective support; and subdomains of physical, psychological, and environmental QOL were significant predictors of perceived overall caregiver burden. Education levels, depressive symptoms, objective support, and objective caregiver burden significantly predicted caregivers' QOL. Study findings suggest there is a need for developing and implementing effective intervention strategies to reduce caregiver burden and improve caregivers' QOL. Health policy makers should provide relevant resources, such as financial assistance with care for family caregivers, as it is important that the health policy fully recognizes the role of family caregivers as a healthcare resource in caring for people with SMI.

Nearly one in five Americans is an unpaid family caregiver, and the need for family caregivers is projected to grow over the next several decades in the face of longer lifespans (AARP 2020). Yet the increasing centrality of family caregivers for providing care to an aging population highlights two knowledge gaps: first, the degree and experience of burden and stress caregivers manage around balancing care with other family and work responsibilities; and second, a lack of knowledge about the caregiver journey and the microtasks of care, including how caregivers leverage – or not – different tools, technologies and resources to support the care they provide. To develop a deeper understanding of these questions and others, the MIT AgeLab has built a research panel of over 1200 caregivers providing care to another adult family member. This symposium will present findings from the MIT AgeLab Caregiver Panel, including: 1) an examination of the extent to which family caregivers identify as such and how they feel about their roles; 2) how family caregivers experienced the COVID-19 pandemic both personally and around the care they provide; 3) caregivers’ use of and attitudes toward technology to support the care they provide; and 4) what caregivers identify as their key unmet needs. The session will include a facilitated discussion around the intersection of COVID-19 with caregivers’ technology use, experience of caregiving, and future needs, as well as to identify additional research questions and directions for future research with the MIT AgeLab Caregiver Panel.

Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively. Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = -0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = -0.563, p = 0.01). Several burden items-including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else-were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions. Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.