Family Caregivers In Care Research Articles

SUSTAINABILITY OF COMPREHENSIVE DEMENTIA CARE INTERVENTIONS FROM A CLINICAL PERSPECTIVE

Abstract Multiple evidence-based comprehensive dementia care programs are currently available for adoption by healthcare systems and providers. However, barriers to adoption and long-term sustainability remain. The need for effective payment policies to incentivize implementation of comprehensive dementia care has long been recognized and the recently announced Center for Medicare and Medicaid (CMS) Guiding an Improved Dementia Care Experience (GUIDE) Model is an important step forward in improving access to comprehensive dementia care for Medicare beneficiaries and family caregivers. The GUIDE Model seeks to confirm that comprehensive dementia care can be widely implemented without raising health care costs. Similar work is needed under Medicare Advantage and other health plans. The National Dementia Care Collaborative (NDCC) seeks to accelerate dissemination of six effective comprehensive dementia care programs. The NDCC provides a forum for addressing barriers to adopting and sustaining comprehensive dementia care and seeks to promote that GUIDE Model participants use at least one evidence-based program. Existing evidence-based dementia care models, developed and tested within large health systems and academic medical centers, are now demonstrating ability to adapt to the characteristics of diverse service-delivery organizations leading to widespread adoption and sustainability. To succeed, one high priority is expanding the dementia care workforce to deliver high quality, comprehensive dementia care. Also essential is consensus on a core set of metrics for monitoring the quality and fidelity of comprehensive dementia care.

Associations between perceived overload and quality of care in dementia family caregivers in China: mediating role of familism and social support.

The quality of care (QoC) of people with dementia is an issue of widespread concern in public health. While perceived overload of family caregivers is thought to negatively affect QoC, the underlying mechanisms of this relationship are not well understood. This study aimed to examine the multiple mediating roles of familism and social support in the relationship between perceived overload and QoC among people with dementia (PwD) within the contemporary Chinese context. A cross-sectional study was conducted between February 2023 and October 2023 in three hospitals located in three cities in Hubei Province, China. A total of 213 PwD and their family caregivers were recruited. Participants completed a general demographic questionnaire, the Chinese version of the Overload Scale, the Social Support Rating Scale (SSRS), the Familism Scale (FS), and the Exemplary Care Scale (ECS). Data were analyzed using SPSS 26.0 and the PROCESS macro. Perceived overload among family caregivers was directly related to QoC. Multiple mediation analysis revealed that the relationship between perceived overload and QoC was mediated by familism (effect: -0.111, 95% CI [-0.221, -0.034]) and social support (effect: -0.078, 95% CI [-0.163, -0.007]) both independently and serially (effect: -0.024, 95% CI [-0.054, -0.004]). Familism and social support serve as multiple mediators in the relationship between perceived overload and QoC. This underscores the importance of incorporating familism and social support into intervention strategies aimed at enhancing QoC.

Validation study of the effectiveness of a stepwise care program for dementia family caregivers

AbstractObjectiveThis study aims to validate the effectiveness of the education program for dementia family caregivers (so‐called Value Care program), and to assess the applicability of the program at local dementia centers in the community.MethodThe Value Care program is an educational program designed for family caregivers of dementia, conducted once a week for 90 minutes over a total duration of 8 weeks. This program aims to enhance understanding of the characteristics and symptoms of dementia at various stages and to provide specific response strategies for caregivers.In this case‐control study, family caregivers of dementia patients were recruited from 38 local dementia centers in Korea. Each participants were randomly assigned to either the experimental group or the control group in a 1:1 ratio. After 8 weeks, assessment was conducted on measure such as depression, care‐burden scales, caregiver self‐efficacy and satisfaction surveys.ResultsA total of 226 family caregivers were recruited in the experimental group, and 210 participants in the control group. The experimental group showed significant reductions in depression (P<0.001) and care‐burden scores (P<0.001) and significant increases in caregiver self‐efficacy scores (P<0.001) after participating in the Value Care program. The overall satisfaction score averaged 4.47 over 5.ConclusionThe “Value Care Program” demonstrated effectiveness in reducing depression, care burden, and enhancing the efficacy of care for family caregivers of dementia patients. Participants expressed a high likelihood of rejoining the program and recommending it to others. Therefore, the Value Care Program could be a crucial initiative for alleviating caregiver burden, stress, and feelings of depression among dementia family caregivers.

Family caregiver involvement in forensic mental health care – A qualitative study of healthcare professionals' perceptions

This qualitative study aims to explore healthcare professionals' (HCPs) perceptions of facilitators and barriers in their collaboration with family caregivers in forensic mental health care (FMHC). A thematic analysis resulted in two interrelated themes: (1): Organizational constraints, with subthemes Resource-driven time and staffing constraints, Duty of confidentiality, and External substance use treatment, and (2) Collaboration with family caregivers, with subthemes Alliance in collaboration, and Overinvolvement. The findings show that HCPs prefer family caregivers to support care and treatment, reflecting a unilateral direction of support. RELEVANCE STATEMENT: Family caregivers of service users in forensic mental health care settings are burdened by the service user's mental illness, offense(s) and difficult collaboration with health care professionals, including nurses. However, the involvement and support of family caregivers in mental healthcare is a national and international objective in policy papers and guidelines because it has been documented to foster the recovery process of service users. Healthcare professionals' perceptions regarding facilitators and barriers in relation to the involvement of family caregivers in the care and treatment of the service user, is needed for the healthcare professionals for optimal support of the service user and family caregivers.

Investigating the Relationship between the Health Literacy of COVID-19 Patients and the Burden of Family Caregivers

Background: The COVID-19 pandemic was associated with the challenge of health literacy of patients and the care burden of family caregivers. Aim: The present study was conducted to determine the relationship between the health literacy of patients discharged with the diagnosis of COVID-19 and the care burden of family caregivers. Methods: This descriptive and analytical study was conducted on 290 people who were COVID-19 patients and 290 people who were their family caregivers in 2022. The study used the convenience sampling method in hospitals located in 22 Bahman Khaf and Allameh Bohlol Gonabadi. The data were collected using the health literacy questionnaire of Montazeri et al. (2005) and the burden of care questionnaire of Zarit et al. (1998). The data were analyzed using SPSS-22 statistical software and Kolmogorov-Smirnov, independent t, Pearson correlation coefficient, and ANOVA tests at a significance level of 0.05. Results: The level of health literacy in most patients was weak. The burden of care for most family caregivers was severe. There was a negative and significant relationship between the health literacy of patients in general and the care burden of family caregivers in general (p<0.001). For an increase of one health literacy score in general, the care burden score decreases by 0.44. Conclusion: As the health literacy of patients increases, the care burden of their family caregivers decreases. Therefore, scientific and practical training plans for patients are recommended to health policymakers to improve health literacy and ultimately reduce the care burden of family caregivers.

Family caregivers and the ethical relevance of moral identity.

Many people want to spend the last stages of their lives at home, in familiar surroundings, and possibly with people they know. However, this increasing desire on the part of older, ill, or even dying people also makes support from other people unavoidable, which in many cases involves family members, loved ones, or even friends. These family caregivers care for the person concerned, even though they lack the professional skills of nursing staff, for example, and have usually not been prepared for this task. This article focuses on the ethical significance of the moral identity of family caregivers. While the effects of this care constellation on the caregivers have often been discussed in the scientific literature, ethical considerations regarding moral identity have so far been neglected. In the first step, the question of what is actually meant by the term moral identity is examined. The second step shifts attention to those people who have taken on the care of a loved one. The relevance of this previously discussed identity is emphasized by using study results and work in this context, and placed in relation to family caregivers. The third step shows that (1) moral identity must be understood as a necessary prerequisite for adequate and humane care, (2) this identity can be enhanced through the caregiving relationship, and (3) the activities undertaken by family caregivers reveal their moral identity. These considerations are finally summarized, provided with ethical aspects, and awareness of this important work of family caregivers is raised.

Dynamics of Family Caregivers in Caring for People with Disabilities Congenital: A Systematic Literature Review (SLR)

The role of family caregivers in caring for people with congenital disabilities has a significant impact on the individual's well-being. However, there has been no comprehensive systematic literature review regarding the dynamics, challenges, and support provided by family carers in this context. Therefore, we need a comprehensive literature review to fully comprehend the role of family carers in providing care for individuals with congenital disabilities. This research aims to conduct a systematic literature review to examine the dynamics of the role of family carers, the challenges faced, and the type of support needed in caring for people with congenital disabilities. Thus, the aim of this research is to compile a comprehensive and in-depth picture of this phenomenon based on existing literature. We use a systematic literature review as the research method, searching, selecting, and critically analysing scientific articles relevant to the topic under study. This study also applied strict inclusion and exclusion criteria to ensure the accuracy and validity of the literature review results. This systematic literature review emphasizes the importance of fully understanding the role of family caregivers in caring for people with congenital disabilities. The results of this review can provide a basis for further research and development of interventions aimed at improving well-being and support for family carers in this context.

Implications of Rebalancing Home-Based Care for Family Caregivers to Older Adults.

Over the last several decades, Medicaid has been "rebalancing" services from institutions to the community, increasing support of home- and community-based services (HCBS). These services could potentially substitute for care typically provided by family members, replacing or reducing care from kin. Leveraging one of the most recent Medicaid rebalancing programs, the Balancing Incentive Program (BIP), and using data from the 2008-2016 Health and Retirement Study on 953 Medicaid beneficiaries ages 65 and over with at least one functional limitation, we examined the relationship between exposure to BIP and family and professional caregiving. BIP exposure was not associated with receipt of care or total hours of care. It was, however, associated with more hours of professional care and fewer hours of family care from non-spouse kin. These findings suggest that recent Medicaid rebalancing programs, while intended to meet the desires of older adults, could have implications for their families.

Transitional Palliative Care for Family Caregivers: Outcomes From a Randomized Controlled Trial

Patients receiving inpatient palliative care often face physical and psychological uncertainties during transitions out of the hospital. Family caregivers often take on responsibilities to ensure patient safety, quality of care, and extend palliative care principles, but often without support or training, potentially compromising their health and well-being. This study tested an eight-week intervention using video visits between palliative care nurse interventionists and caregivers to assess changes in caregiver outcomes and patient quality of life. This randomized controlled trial, conducted from 2018 to 2022, enrolled adult caregivers in rural or medically underserved areas in Minnesota, Wisconsin, and Iowa. Eligible caregivers included those caring for patients who received inpatient palliative care and transitioned out of the hospital. The intervention group received teaching, guidance, and counseling from a palliative care nurse before and for eight weeks after hospital discharge. The control group received monthly phone calls but no intervention. Caregiver outcomes included changes in depression, burden, and quality of life, and patient quality of life, as reported by the caregiver. Of those consented, 183 completed the intervention, and 184 completed the control arm; 158 participants had complete baseline and eight-week data. In unadjusted analyses, the intervention group and their care recipients showed statistically significant improvements in quality of life compared to the control group. Improvements persisted in adjusted analyses, and depression significantly improved. No differences in caregiver burden were observed. Addressing rural caregivers' needs during transitions in care can enhance caregiver outcomes and improve patient quality of life.

Impact of Spiritual Support Interventions on the Quality of Life of Patients Who Receive Palliative Care: A Systematic Review.

Palliative care focuses on the prevention of worsening health, improving the quality of the patient's life, and the relief of suffering, and therefore has a considerable impact on both the patient suffering from a life-threatening or potentially life-threatening illness and on their family. Spirituality, as the dimension of human life involving the search for meaning, purpose, and transcendence, and connection with oneself, others, and the sacred, could be essential in supporting these patients. The aim of this study was to synthesise the scientific evidence describing the interventions and/or activities undertaken to meet the spiritual needs of the palliative patient. A literature search was carried out across the following databases: PubMed, LILACS, Scopus, and Web of Science. The PRISMA statement was used to guide this review. Twenty-four articles were included. The thematic categories included spiritual needs at the end of life, the influence of music and dance as palliative care, care for family caregivers, and the comparison between counselling and dignity therapy. Interventions in the biopsychosocial-spiritual spheres impact on the patient's peace of mind and promote the acceptance of a "good death". Healthcare personnel play an essential role in the way their patients prepare for the moment of death, and the meaning and values they convey help them to accompany and welcome patients. Last but not least, universities can play a crucial role by training nurses to integrate spiritual interventions such as music and dance, or by considering the family as a unit of care. The systematic review protocol was registered in the Prospective International Register of Systematic Reviews (PROSPERO) under protocol number CRD42023490852.

The "Double Victim Phenomenon"-Results From a National Pilot Survey on Second Victims in German Family Caregivers (SeViD-VI Study).

Second-victim phenomena may lead to severe reactions like depression or posttraumatic disorder, as well as dysfunction and absenteeism. Medical error as a cause for second victims is not limited to professionals, as family caregivers care for millions of patients at home. It remains unclear whether these are first, second, or double victims in case of error. This explorative study investigated whether second victim effects and signs of moral injury are detectable in family caregivers and whether existing instruments are applicable in lay persons. In an open convenience sampling online survey, we recruited 66 German family caregivers. Propensity score matching was conducted to obtain a balanced sample of family caregivers and qualified nurses who took part in the previous study by adjusting for age and sex. The groups were compared regarding the German Version of the Second Victim Experience and Support Tool-Revised and the German version of the Moral Injury Symptom and Support Scale for Health Professionals. Sixty-six caregivers participated, of whom 31 completed the survey. Of all, 58% experienced a second victim-like effect, 35% experienced a prolonged effect, and 45% reported to still suffer from it. In a matched sample (22 family caregivers and 22 nurses), no significant differences were observed between the groups. Regarding the limitations of this pilot study, demanding for resampling in larger populations, we could show that second victim effects and moral injury are detectable in family caregivers by validated instruments and are not inferior to professionals' experiences. Concerning the demand for further studies, we confirmed the applicability of the testing instruments but with need for item reduction to lower response burden.

Surgical outcomes in surgical oncology patients who participated in a family involvement program

There is a lack of evidence regarding the relationship between family involvement and outcomes in gastrointestinal oncology patients after surgery. To evaluate the effect of a family involvement program for patients undergoing oncologic gastrointestinal surgery on unplanned readmissions within 30days after surgery. A multicenter patient-preference cohort study compared 2 groups: patients who participated in the family involvement program versus usual care. The program comprised involvement of family caregivers in care and training of health care professionals in family-centered care. Multivariable regression analyses were used to evaluate the effect of the FIP on the number of unplanned readmissions up to 30days after surgery. Secondary outcomes included complications sensitive to fundamental care activities, emergency department visits, intensive care unit admissions, hospital length of stay, and the need for professional home care after discharge. Of the 301 patients included, 152 chose the family involvement program, and 149 chose usual care. Postoperative readmissions occurred in 25 (16.4%) patients in the family involvement program group, and 15 (10.1%) in the usual care group (P=.11). A significant reduction of 16.2% was observed in the need for professional home care after discharge in the family involvement program group (P<.01). No significant differences were found between the 2 groups in the other secondary outcomes. The family involvement program did not reduce the number of unplanned readmissions, but it led to a substantial reduction in-home care, which suggests an economic benefit from a societal perspective. Implementation of the family involvement program should, therefore, be considered in clinical practice.

Demographic Factors and Perceived Social Support as Predictors of Burden of Care among Family Caregivers of Children Living With HIV in Akwa Ibom State

The burden of care among caregivers has emerged as a significant public health concern. This study investigated demographic factors and perceived social support as predictors of the burden of care among family caregivers of children living with HIV (CLHIV) in Akwa Ibom State. Fifty-seven participants, comprising 6 males (10.53%) and 51 females (89.47%), were purposively selected from rural family caregivers receiving family support services from selected Non-Governmental Organisations (NGOs) in Akwa Ibom State. A cross-sectional survey design was employed, utilizing the Perceived Social Support Scale and the Burden of Care Scale for data collection. Descriptive statistics and multiple regression were used for data analysis. Results indicated that age significantly predicted the burden of care among family caregivers of CLHIV (β = .322; t = 2.50, P &lt; .05). However, caregivers' education (β = .031; t = .235; P &gt; .05) and relationship with the care recipient (β = -.077; t = -0.58; P &gt; .05) did not predict the burden of care. Notably, perceived social support independently predicted the burden of care (β = .292; t = 2.29; P &lt; .05). Furthermore, a significant joint prediction of demographic factors and perceived social support on the burden of care of family caregivers of CLHIV was found (F = (6,56) = 2.82; P &lt; .05). The findings highlight the need for targeted interventions and support programs that address caregivers' needs, particularly in terms of social support networks, to alleviate the burden associated with caring for children living with HIV.

Design, Implementation and Evaluation of a Health Promotion Program for Family Caregivers of Chronic Mental Disorders: A Mixed Methods Study.

Family caregivers of patients with chronic mental disorders who are responsible for taking care of the patient face many problems that can endanger the psychosocial health of these people. This study was conducted to develop, implement, and evaluate a psychosocial health promotion program for family caregivers of patients with chronic mental disorders. This research is an exploratory sequential mixed-method study conducted using a qualitative-quantitative design. A qualitative study was conducted to explain the needs and psychosocial problems and the solution to improve the psychosocial health of family caregivers of patients with chronic mental disorders in two psychiatric care centers in Isfahan were conducted. Then the program was written based on Kern's programming development approach. In the quantitative stage, a part of the developed program was implemented as virtual group psychoeducation for 67 caregivers, and its impact on caregivers' burden of care was evaluated. The findings from the qualitative phase of the study led to the emergence of 3 main categories and the findings from the quantitative phase of the study indicated that the implementation of the compiled program causes a significant reduction in the burden of care in family caregivers of chronically mentally ill patients (p<0.05). The current program was prepared and developed using an evidence-based approach. Policymakers and members of the mental health team can take a valuable step toward reducing the care burden of family caregivers of chronic mental patients by using the content of the developed mental health promotion program.

Burden and Quality of Life of Family Caregivers Caring for Patients on Hemodialysis

Burden and Quality of Life of Family Caregivers Caring for Patients on Hemodialysis

BECOMING INCLUSIVE: A NECESSARY PURSUIT FOR SUPPORTING FAMILY CAREGIVERS IN HOSPITAL CARE

Abstract Given advances in medicine and technology, shorter hospital stays, and a shrinking health care workforce, an increasing number of older adults are relying on family caregivers for support during and after hospital care. Yet, our healthcare system is often unresponsive to the needs of family caregivers. Recent consensus recommendations including the National Strategy on Family Support encourages health systems to include family caregivers in care processes of older adults. This presentation will report interview and community advisory board findings from a qualitative descriptive study of N=24 stakeholders consisting of hospitalized older adults (n=4), family caregivers (n=6), healthcare providers (n=9), and health policymakers (n=5). The goals of the study were to identify and describe existing barriers and facilitators to the inclusion of family caregivers in older adult’s hospital care. Of the participants, 87% were female and from the Midwest region, and all were Caucasian. The average age was 56 years. The resulting themes from this exploration demonstrated that inclusion of family caregivers in hospital care is influenced by personal factors of both the caregiver and the provider (caregiver availability, health literacy, education, values/priorities), interpersonal skills between these two parties (communication style and methods), hospital environment/resources (accessibility, comfortability, staffing, documentation), and social climate/policy (Covid-19 Restrictions, HIPAA, Power of Attorney). Findings from this study can be used to develop or adapt healthcare system policies and practices, fulfilling Outcome 2.1 of the National Strategy on Family Support’s recommendation for recognizing family caregivers as essential members of the care team.

Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team

BackgroundSpecialist palliative care (SPC) includes care for incurably ill patients and their family caregivers at home or on a palliative care ward until the very end of life. However, in the last days of life, patients can rarely express their needs and little is known about SPC outcomes as reported by multiprofessional SPC teams and family caregivers.MethodsUsing the Palliative Care Outcome Scale (POS; Score 0–40), proxy assessments of SPC outcomes in the patient’s last 3 days of life were performed by SPC teams and primary family caregivers of three home care and three inpatient services. Additional questions were asked about problems solved ‘particularly well’ or ‘inadequately’ (last 7 days), which were content analyzed and quantified.ResultsProxy assessments by SPC teams were available in 142 patients (of whom 51% had died at home). Family caregiver assessments exist for a subgroup of 60 of these patients. SPC teams (POS total score: mean 13.8, SD 6.3) reported SPC outcomes slightly better than family caregivers (mean 16.7, SD 6.8). The POS items consistently rated as least affected (= 0) by both, SPC teams and family caregivers, were ‘not wasted time’ (team 99%/family caregivers 87%), ‘information’ (84%/47%) and ‘support’ (53%/31%). Items rated as most affected (= 4) were ‘patient anxiety’ (31%/51%), ‘life not worthwhile’ (26%/35%) and ‘no self-worth’ (19%/30%). Both groups indicated more problems solved ‘particularly well’ than ‘inadequately’; the latter concerned mainly clinically well-known challenges during end-of-life care and family caregiver care.ConclusionsThis study shows the range and type of symptoms and other concerns reported in the patient’s last days. Starting points for further improvements in family caregiver care and psychosocial and spiritual issues were identified.

Burden of Care of Family Caregivers for People Diagnosed with Serious Mental Disorders in a Rural Health District in Kwa-Zulu-Natal, South Africa.

An estimated 6% of the world population has serious mental illness, with one in four families having a member with some form of psychiatric disorder, who is mostly cared for by their relatives within a family setting. Although care-giving in a home setting is reported to be associated with significant mental distress, the burden of such distress is rarely measured. The purpose of this study was to quantify the burden of care among family caregivers of relatives with serious mental disorders, as well as to explore possible associations between the caregiver burden of care and a range of caregiver and Mental Health Care User (MHCU) variables in a rural district in Kwa-Zulu Natal, South Africa. The Zarit Burden Interview (ZBI) scale was used to collect data from 357 caregivers, and STATA 14 was used to analyze data. The ages of the sample ranged from 18 to 65 years, with a mean of 50.29, and the majority (86%) were female and unemployed (83%). The ZBI scores ranged from 8 to 85, with a mean of 41.59. The majority (91%) were found to be affected by family caregiver burden, which ranged from mild to severe. Using the Pearson Chi-square test of association (p = 0.05), variables that were significantly associated with the burden of care were clinically related (caregiver self-reported depression, MHCU diagnosis, recent relapse of the MHCU), socio-economic (caregiver family monthly income, MHCU disability grant status and MHCU employment status) and socio-demographic (MHCU gender and MHCU level of education). The prevalence of the burden of care is high and severe, and the scarcity of resources in families and communities contributes to the high burden of care in these rural communities.

The Impact of Social Anxiety and Social Phobia on Difficulties in Providing Care for Family Caregivers to People with Dementia

The Impact of Social Anxiety and Social Phobia on Difficulties in Providing Care for Family Caregivers to People with Dementia

The Effect of the Web-Based Psychosocial Health Promotion Program on the Burden of Care in Family Caregivers of Patients with Chronic Mental Disorders.

Family members of Chronic Mental Disorders (CMD), who are responsible for patient care, face many physical, psychological, and social problems which make them face the burden of care. This study aimed to investigate the effect of a psychosocial health promotion program on the care burden of family caregivers of patients with CMD. This is a quasi-experimental study that was conducted in two intervention and control groups in the form of pretest and posttest. This study was performed on 67 family caregivers of patients with CMD in Farabi and Noor centers in Isfahan, Iran. Participants in this study were randomly divided into two intervention and control groups. Data from the intervention and control groups were collected in two stages, before and after the intervention by demographic information form and Zarit burden questionnaire. The intervention group received a web-based psychosocial health promotion program in eight sessions in 4 weeks. At the end of the intervention, the Zarit questionnaire was completed by the intervention and control groups. The mean score of care burden between the intervention and control groups was not statistically significantly different before the implementation of the program (p = 0.534). But after the intervention, the mean score of care burden was significantly different between the two groups (t65 = 3.43, p = 0.001). This study provides evidence for the benefits of web-based psychosocial health promotion program in reducing the perceived care burden of the caregiver of CMD.