Family Caregivers Research Articles

Profiles of resilience resources among spousal caregivers

Objectives Resilience resources play a significant role in a caregiver’s adaptation process. Previous studies have primarily focused on the effects of individual resilience resources. This study aimed to examine diverse patterns of how those multiple resources simultaneously operate in a caregiving situation with the person-centered approach. Method This study utilized data from the Health and Retirement Study. Participants were eligible if they completed the Left-Behind questionnaire at two consecutive timepoints (2014 and 2016; or 2016 and 2018) and provided care for their spouse with limitations in activities of daily living (n = 692). Results Latent profile analysis identified three distinct groups among spousal caregivers: (1) Lack of Resilience Resources (17%), (2) Low Psychological and Cognitive Resources, but Having Moderate Support (21%), and (3) Strong Resilience Resources (62%). Spousal caregivers having functional limitations (Odds = 0.37, p = 0.016) and greater depressive symptoms (Odds = 0.59, p = 0.000), and high ongoing caregiving stress (Odds = 0.37, p = 0.007) were less likely to be in ‘Strong Resilience Resources’ than ‘Lack of Resilience Resources’. Conclusion The findings highlight the importance of taking a holistic view of resilience resources. It provides insights into potentially vulnerable groups and caregivers’ adaptation process, thereby contributing to the development of interventions or policies aimed at enhancing the resilience resources of family caregivers.

Health-Related Quality of Life of Family Caregivers in the United States, 2021–2022: A National Cross-Sectional Analysis

Health-Related Quality of Life of Family Caregivers in the United States, 2021–2022: A National Cross-Sectional Analysis

Follow-up care experience of patients with invasive meningococcal disease and their family caregivers: a qualitative study

BackgroundClinical guidelines recommend systematic follow-up of patients surviving invasive meningococcal disease (IMD) to assess sequelae. However, little is known about survivors and family caregivers’ experiences of the follow-up care. Study sought to explore IMD survivors’ and their family caregivers’ experiences after hospitalization for IMD and to identify unmet needs.MethodsSemi-structured interviews were conducted with patients and family caregivers, identified through hospitals database. Interviews were audiotaped, transcribed and subject to a thematic analysis. NVivo software was used for data management and analysis.ResultsEight IMD survivors and 14 family caregivers were interviewed. Three themes were identified from the data: (1) perception of patient and family caregiver on follow-up after IMD and role of healthcare professionals; (2) access to care and support; (3) relationship with healthcare professionals. Although most were satisfied with follow-up care after IMD, suggestions for improving the healthcare pathway were made relating information on potential sequelae and follow-up care, coordination, and access to psychological support.ConclusionsThis study confirms the need for more structured follow-up care for patients suffering from IMD and their families which is currently limited and focused on physical recovery. Optimal follow-up should aim to provide sufficient information, emotional support and logistical support for patient and family caregivers.Trial registrationEthics Committee of University of Lyon, France (ref: 2022-06-23-002).

Evaluating dyadic factors associated with self-care in patients with heart failure and their family caregivers: Using an Actor-Partner Interdependence Model

Dyadic conditions of patients with heart failure and their caregivers may affect both patient self-care and caregiver contribution to patient self-care (CCPS). The purpose of this study was to examine the relationships of patient-caregiver physical function and depressive symptoms to the patient self-care (maintenance and management) and CCPS. Data from 55 were analyzed using an Actor–Partner Interdependence Model to address the aim through AMOS. Patient self-care was very poor. Better patient physical function was related to better patient self-care management (actor effect) and poorer CCPS maintenance (partner effect). Better caregiver physical function was related to CCPS management (actor effect). Severer patient depressive symptoms were related to poorer patient self-care maintenance (actor effect) and poorer CCPS management (partner effect). Physical function and depressive symptoms in patient-caregiver dyads were related to patient self-care and CCPS. To improve patient self-care and CCPS, dyadic support for physical function and depressive symptoms is needed.

Book Review: Family caregiver distress

Book Review: Family caregiver distress

Family Peace and Affecting Factors in Family Caregivers of Patients With Cancer: A Cross-Sectional Study.

Objective: During the care process, family members who provide care for a patient with cancer are confronted with changes in their family dynamics. The purpose of this study was to evaluate the family peace of caregivers of patient with cancer and the associated factors. Methods: A cross-sectional study was conducted in a single center. The sample of the study included caregivers who were family members of patients with cancer. Data were collected with Caregiver and Patient Information Forms, General Self-Efficacy Scale, Family Peace Scale, Self-Care Behaviors Scale, and MD Anderson Symptom Inventory. Results: It was found that the mean age of the caregivers was 50.20 ± 0.71 years, 64.1% were female, 78.7% were married. The mean score of the caregivers on the total family peace scale was above the average value with 46 ± 0.75 out of 75 points. The caregivers' level of family peace increases as their scores on the scale increase. The family peace of caregivers who were widowed or divorced, were self-employed, had less income than their expenses, had a chronic disease, reported that their health was affected, had low self-efficacy was worse than that of others. The family peace of caregivers of patients who had gynecological cancer and had a good income was better (P < 0.05). The self-efficacy level of the caregivers and the symptoms of the patient with cancer were significant predictors of family peace (P < 0.001). Conclusions: Family peace of caregivers was affected by the type of cancer, symptom burden, self-care behaviors of the patient, and caregivers' income status, chronic disease, marital status, and self-efficacy. Physicians and nurses, who are in close contact with caregivers of cancer patients, should be aware of the issue, professionals should assess the family environment of the caregivers of patient with cancer and counseling should be provided if deemed necessary.

Family carers as service producers – insights into psychological contracts

ABSTRACT Family carers and caregiving have a role in the service system but family carers are often invisible and go unnoticed in society. In this article we are interested in family carers as service producers in health and social care. We analyze family care using the concept of a psychological contract. A psychological contract is an unspoken, unconfirmed and unwritten agreement where an exchange is based on perception rather than what is explicitly written and agreed. A psychological contract shapes family carers’ expectations and obligations, while providing a concept for understanding their work. The data were analyzed via theory-driven content analysis. Research question is: what are the features of a psychological contract in a family carer´s work? Data were collected from Finland in 2015. Ten family carers, aged between 64–78 years, who take care of their spouses were interviewed. A psychological contract involves the normative and mental schema of the carers, which direct what kind of care they feel they should provide as a spouse and carer. The psychological contract also guides what kind of support the carers may be willing to accept. The psychological contract clearly shows that family carers are primarily spouses rather than service providers. The concept of the psychological contract provides a workable frame to describe the relationship between family carers and the service system. This study enables the development of family care support services for the needs of family carers.

Early Childhood Adversity Predicts Risk of Family Caregiver Suicidal Ideation:Roles of Neuroticism and Self-Compassion.

Despite high rates of family caregiver suicidal ideation (SI), little is known about its relationship with childhood adversity. Those with a history of adverse childhood experiences (ACEs) have been shown to have higher neuroticism, lower self-compassion, and higher rates of late life mental health disorders. Caregiving for a family member with dementia may pose a particular challenge for those with ACEs. In a secondary analysis of 81 family caregivers of people living with dementia enrolled in clinical trials, we undertook a cross-sectional baseline analysis of the association between childhood adversity, measured with the ACE questionnaire, and self-reported suicidal ideation (SI). We further assessed whether the relationship between ACE and SI was mediated by neuroticism and self-compassion. 18 caregivers self-reported SI (22%). 89% of caregivers with SI reported childhood adversity (ACE > 0), versus 63% of those without SI (p=.04). The relative risk of SI was 3.6x higher in those with childhood adversity than in those without (p=.04), and for those with a specific history childhood abuse, the relative risk of SI was 3.4x higher (p=.005). Neuroticism and self-compassion mediated the relationship between ACE and SI (p<.05), with neuroticism strengthening the association and self-compassion weakening it. The association of SI with history of childhood adversity is high in family caregivers. Whereas elevated neuroticism might be one mechanism linking ACEs and SI, training self-compassion is a promising target for reducing SI. The phenotypic relationship between childhood adversity and SI in family caregivers should be further explored in larger samples, and could represent a new treatment target to improve the efficacy of therapies on caregiver emotional symptoms.

Death Anxiety and Its Influencing Factors Among Family Caregivers of Cancer Patients: A Cross-Sectional Study.

In China, caregiving for cancer patients is primarily the responsibility of family members. This role often exposes family caregivers to the contemplation of mortality. Death anxiety among family caregivers may influence the care they offer to cancer patients. This study aims to evaluate the prevailing level of death anxiety among Chinese family caregivers of cancer patients and identify its influencing factors. This cross-sectional study followed the STROBE statement. A total of 220 family caregivers of cancer patients were recruited from a prominent tertiary hospital in southern China. The survey included a general information questionnaire, the Collett-Lester Fear of Death Scale, the Social Support Rating Scale and the Simple Coping Style Questionnaire. In addition to descriptive statistics, ANOVA, mean differences, correlations and regression analyses were computed. The average score for death anxiety among family caregivers of cancer patients was 104.27 ± 21.02. Death anxiety was negatively correlated with a positive coping style and social support. Multiple linear regression analysis revealed that marital status, death education, patients' fear of death and coping style accounted for 41.0% of the variance in death anxiety among family caregivers. Family caregivers of cancer patients experienced a moderate level of death anxiety. Individuals who were unmarried or divorced, lacked death education, had negative coping styles or cared for patients with fear of death tended to have high levels of death anxiety. Healthcare providers should act as credible educators to reduce caregivers' death anxiety by imparting positive coping styles and accurate knowledge and values about death so caregivers can provide high-quality care to patients.

Employment Experiences and Employability of People in China Living With Schizophrenia: A Qualitative Study.

Employment support for people living with schizophrenia in China currently focuses only on patient-level factors. The authors' aim was to assess the employment experiences of this population and to identify factors related to their employability. In-depth interviews were conducted with 24 purposively selected respondents. A thematic analysis was performed. A framework for examining the employment experiences and factors affecting employability of people living with schizophrenia was developed. Employability varied by individual characteristics, personal circumstances, and external factors. Individual-level characteristics, such as health and well-being, work skills and experience, educational attainment, personal social network, gender, and age, influenced individuals' work motivation and performance. Personal circumstances, such as family socioeconomic status and caregiving responsibilities, affected whether individuals decided to seek employment. External factors, such as labor market conditions, macroeconomic context, stigma and discrimination, mental health services, and policy factors, determined how likely individuals were to be employed and the types of jobs they were likely to obtain. A multifaceted combination of factors was found to influence employability among people living with schizophrenia. This research provided a thematic framework to structure effective employment support for people in China living with schizophrenia.

Exploring the Perceptions of Families and Nurses After Signing a Do-Not-Resuscitate Order for Patients in Respiratory Care Wards.

Introduction: This study aimed to explore the perceptions and experiences of family caregivers and nurses after the signing of a do-not-resuscitate (DNR) order for patients in respiratory care wards (RCWs). The goal was to facilitate nurses' preparedness for responding to family reactions and feelings in future DNR situations. Methods: The study employed semi-structured interviews with ventilator-dependent patients' families and nurses recruited from RCWs in regional and district hospitals in New Taipei City. It explored the feelings, motivations, and decision-making processes concerning DNR orders. Thematic analysis identified key themes and patterns. Results: Twenty-two family members and 12 nurses, caring for 22 patients, participated in the interviews, resulting in 44 interview transcripts. The majority of family members were male (54.5%), whereas all nurses were female. Family caregivers and nurses had nuanced perceptions and showed emotional responses after the signing of DNR orders. Family caregivers grappled with feelings of guilt, uncertainty, and the weight of decision-making, while nurses navigated ethical dilemmas and sought to support families through the process. Common themes included the desire to minimize the patient's suffering, concerns about quality of life, and the need for clear communication and support. Conclusion: The understanding of family caregivers' and nurses' perceptions of DNR orders for patients in RCWs illuminates complex end-of-life care challenges. A key gap in the study was its limited generalizability due to focusing on specific RCWs. Nonetheless, the insights gained may enable health care providers to tailor support, facilitate informed decision-making, and promote compassionate care for ventilator-dependent patients and their families.

A conceptual framework to improve the quality of life in patients with CKD on dialysis in KwaZulu Natal Province, South Africa

Chronic kidney disease (CKD) is one non-communicable disease mainly caused by comorbid of diabetes and hypertension, thus compromising quality of life for the patients. Few rigorous Quality of Life frameworks on chronic kidney disease (CKD) have been reported in low-middle income countries including South Africa. Therefore, the study aimed at developing a Conceptual Framework to improve the Quality of Life in Patients with CKD on Dialysis in KwaZulu Natal Province, South Africa. A Mixed method sequential explanatory design which entails collection of quantitative data, followed by qualitative. A purposive sampling of 316 CKD patients for quantitative was initially selected. For qualitative, 17 healthcare professionals were theoretically sampled until data saturation. A structured questionnaire (WHO HRQOL–BREF) was utilized to collect numerical data for quantitative phase, while focus group discussions provided qualitative insights. The quantitative results indicated low quality of life (QoL) in several dimensions: economic (98 %), psychological (95 %), physical (70 %), and social (55 %). Grounded theory analysis of the qualitative data identified key predictors of QoL as the patients' geographic location, accessibility to haemodialysis centres, their ability to adapt and accept the condition, self-management practices, support from family members and caregivers including the presence of well-trained nursing staff.A comprehensive conceptual framework was developed through identifying contextual factors, interventions and outcomes that is expected to improve the QOL. The study recommends the immediate intervention of the policy makers and health care providers in drafting and implementing policies to improve the QOL in patients with CKD.

Voices of Parent-Carers Navigating the Care for Children With Osteogenesis Imperfecta.

Parent-carers of children with rare diseases, including osteogenesis imperfecta (OI), represent a vulnerable and largely invisible population. Despite existing research on familial OI caregiving, the unique experiences, perspectives, and feelings of parent-carers remain poorly understood, prompting this study to delve into these aspects through the subjective lens of voices. The aim of this study was to explore the voices of parent-carers in navigating the complexities of pediatric OI care. Employing a narrative design informed by social constructionism, 15 parent-carers of pediatric OI patients were purposively sampled from a tertiary hospital in Shandong Province, China, between May and August 2021. Individual face-to-face interviews were conducted, and data were analyzed using the voice-centered relational approach followed by thematic analysis. Parent-carers' narratives revealed two overarching themes. The first theme, "the all-encompassing caregiver role," highlighted the profound internal transformation parent-carers underwent, with three key aspects of experiences: "the centrality of care," "life on hold," and "guarded silence." The second theme, "navigating ambivalence," captured the complex psycho-emotional journey of parent-carers as they balanced denial and acceptance, experienced the burden and responsibility of caregiving, navigated uncertainty with hope, and sought to normalize the care recipients' experiences while acknowledging their unique needs. Our findings suggest the need for developing tailored support strategies that address not only practical challenges but also the psychosocial dimensions of caregiving, to effectively assist and empower this marginalized carer population.

Producing the public caregiver: the discursive politicization of family caregiving by Canadian caregiver organizations

How are problems of family/friend care framed and politicized, and with what socio-political implications? This feminist rhetorical analysis examines how carers are positioned, how problems and solutions of care are framed, and how carers’ social and political rights are supported by Canadian caregiver organizations. Organizations’ public materials draw on and expand narratives that foreground individual risk and recognition, decentring the state’s role. We elaborate on how carers’ citizenship rights are discursively bounded with proposed individualized solutions that support them in continuing to care. Broader narratives could consider carers’ human or citizenship rights or otherwise foreground relationality and complex collective care solidarities.

Sequential mediation model of social support, care burden, and internalized stigma among family function and depression in caregivers of patients with schizophrenia: evidence from a cross-sectional study in southwest China.

There is a lack of comprehensive measurements and systematic evaluations of the depression in caregivers of patients with psychiatric disorders and the factors influencing them in China. This study aims to explore the relationship between family function and depression in caregivers of patients with schizophrenia at the individual, family, and social levels according to the ecological system theory and attachment theory. In this study, multi-stage, stratified cluster sampling was adopted to sample caregivers of patients with schizophrenia as subjects from one to three counties of four counties in Yunnan, from September 2022 to March 2023. Collecting the current caregiver's demographic data, family functions, social support, care burden, depression and internalized stigma. The results of single-factor analysis show that age, education level, relationship with patients, and the degree of self-care of patients are the influencing factors of depression of people living with schizophrenia (p < 0.05). The scores of self-rating depression scale are higher for caregivers who have not received formal education, caregivers who cannot take care of themselves and the parents, spouses and children of patients. The results of Pearson correlation analysis show that depression is positively associated with internalized stigma and care burden, and negatively associated with social support and family function (p < 0.05). The results of multiple linear regression show that after controlling age, education level, the patient's self-care capacity, and relationship with patient, the internalized stigma (β = 0.184, p = 0.01) is positively correlated with depression. The mediation effect route of family function → social support → care burden → internalized stigma → depression was significant with 95% confidence interval [-0.150, -0.01], and the chained mediation effect was 5.904%. To reduce the depression level in family caregivers of schizophrenia, apart from taking measures to improve the caregiver's family function, enhancing social support, decreasing care burden, and reducing internalized stigma are suggested.

Feelings of Empowerment Scale for Family Caregivers: Development, Exploratory, and Confirmative Analysis

ABSTRACT Objectives This study aimed to validate a measure of feelings of empowerment among family caregivers of persons with life limiting illnesses. Methods Family caregivers (N = 295) completed a survey on their feelings of empowerment and psychosocial constructs. Results Utilizing exploratory and confirmatory factor analyses, the study validated the Empowerment in the Context of Caregiving scale, revealing a two-factor structure related to influencing the care recipient and controlling personal outcomes, with high reliability and validity. Convergent validity was supported by a strong association with an established measure of power. Discriminant validity was demonstrated through weak associations with theoretically less relevant constructs, confirming the scale’s validity. Conclusions This scale provides a reliable tool to identify feelings of disempowerment among caregivers, with implications for theory and practice. Future research should explore predictive validity and consider cultural factors to enhance its applicability in diverse caregiving contexts. Clinical Implications This study provides a reliable tool to identify feelings of empowerment among family caregivers of persons with life limiting illnesses for clinicians. It also allows future studies to reliably investigate a theory-driven intervention target, feelings of power, and allows clinicians to tailor this into theory-driven intervention for family caregivers of persons with life limiting illnesses.

Understanding how community-dwelling persons with early dementia perceive health and community services: Informing the dementia strategy of Newfoundland and Labrador, Canada.

With an increased aging population, the number of individuals with dementia is expected to rise. The onset of dementia marks the start of negotiating access to a wide range of health and social services to find practical and emotional supports to deal with the management of changes and subsequent challenges that individual with dementia face. The toll of dementia goes beyond the health care system, affecting families and caregivers' quality of life. This places more pressure on family caregivers and health care institutions to provide services for affected individuals. It is important to understand the service needs of this population to enable them to live at home longer, contribute to society and maintain a positive quality of life. To increase understanding of how persons living at home with early dementia and their caregivers/significant others currently perceive and interact with health and community-based services and service providers. A qualitative descriptive approach was used to explore the experiences of individuals with early dementia and care providers with health and community-based services using semi-structured interviews and content analysis. Participants included 16 individuals 50years and older with mild/early dementia living at home, 22 informal caregivers of individuals with mild/early dementia, and 5 key community informants (community health nurses and social workers). Four thematic categories of barriers and two thematic categories of facilitators for access to and uptake of supportive services were identified. Five strategies to inform the development of an action plan to enhance access to, and uptake of, supportive services were determined. Early recognition of dementia through education and publicity enhanced public awareness, attention, and social inclusion with dementia-friendly neighborhoods and facilities need to be considered to achieve effective dementia-related services. Inclusion and recognition of the wishes of persons with dementia is key.

Experiences and Supportive Care Needs of Latinx Millennial Caregivers.

Latinx Millennial caregivers are an understudied minority group in the United States. Due to life stage and cultural values, these caregivers struggle to balance conflicting priorities with career, family, and caregiving. They also face systemic barriers and healthcare disparities. Participants (N = 29) were recruited locally and nationally. Qualitative data were collected using five focus groups and one individual interview. Interviews were analyzed by seven coders using thematic analysis with an inductive approach. Meta-themes included (a) the Latinx experience with culture, immigrant status, and structural barriers; and (b) being a super caregiver: being everything to everyone. Additional main themes were identified including family well-being, occupational and financial well-being, social support dynamics, challenges and rewards of family caregiving, and coping strategies. Clinical interventions for Latinx Millennial caregivers should address cultural background, value of family/community, and systemic barriers for care and support.

Unmet Needs and Factors Impacting Home- and Community-Based Service Use Among Rural Appalachian Caregivers of People With Alzheimer's and Dementia.

Family caregivers of persons with Alzheimer's disease and related dementias (ADRD) living in rural areas face significant health and healthcare challenges. Limited research, however, has explored factors shaping their use of home- and community-based services (HCBS). This study identifies unmet needs among caregivers of people with ADRD in rural Western North Carolina and highlights contextual factors that facilitate HCBS use. Nineteen qualitative interviews were conducted with 21 family caregivers and 1 person with ADRD between 2021 and 2022. Thematic analyses revealed unmet needs among caregivers for information, service navigation, and caregiving support. HCBS use was shaped by multiple factors including illness needs, cultural beliefs, preferences for home-based care, and place-based resources. These findings suggest that culturally tailored HCBS are needed to support people with ADRD and their caregivers in rural Appalachian communities, especially those which facilitate access to paid caregiving, clearly communicate program eligibility requirements, and emphasize service availability.

Accepting and committing to caregiving for schizophrenia—a mixed method pilot study

BackgroundEnd of traditional institutionalized psychiatric care, diagnostic complexities, and associated stigma often negatively impact the social networks of caregivers, making them experience social isolation. Not the “identified patients”, caregiver perspectives are typically overlooked further adding to anticipatory stigma resulting in social death among them. Caregiving experience results in developing coping skills, preventing carers from responding to the nuances of the context, and identifying the useful rules— “Experiential Avoidance”. Psycho-education is typically combined with other formal treatment programs for case conceptualization, and to provide a clear rationale for the treatment approach but less as a distinct psychotherapy. Borrowing the philosophy of Functional Contextualism, the present study developed a “Present-Moment Awareness” guided psychoeducational intervention. The aim was to reduce schizophrenia caregiver burden and anticipatory stigma and promote the value of caregiver participation as ‘experts by experience’.MethodFive family caregivers of remitted schizophrenia patients were recruited using purposive sampling. Pre-post measure was taken on caregiver burden, caregiving experience, sense of personal mastery, and caregiving competence. Results were analysed quantitatively and qualitatively.ResultsA significant decrease in caregiver burden, stigma, and negative effects on the family in post-intervention was observed. Self-compassion led to a rise in a sense of empowerment.ConclusionA caregiver-centred “Present-Moment Awareness” guided psycho-education for schizophrenia caregivers can be considered a possible means to address perceived stigma in caregivers and to reduce associated distress of carers.