Well-being Of Family Caregivers Research Articles

Mental health care for older adults: recent advances and new directions in clinical practice and research.

The world's population is aging, bringing about an ever-greater burden of mental disorders in older adults. Given multimorbidities, the mental health care of these people and their family caregivers is labor-intensive. At the same time, ageism is a big problem for older people, with and without mental disorders. Positive elements of aging, such as resilience, wisdom and prosocial behaviors, need to be highlighted and promoted, both to combat stigma and to help protect and improve mental health in older adults. The positive psychiatry of aging is not an oxymoron, but a scientific construct strongly informed by research evidence. We champion a broader concept of geriatric psychiatry - one that encompasses health as well as illness. In the present paper, we address these issues in the context of four disorders that are the greatest source of years lived with disability: neurocognitive disorders, major depression, schizophrenia, and substance use disorders. We emphasize the need for implementation of multidisciplinary team care, with comprehensive assessment, clinical management, intensive outreach, and coordination of mental, physical and social health services. We also underscore the need for further research into moderators and mediators of treatment response variability. Because optimal care of older adults with mental disorders is both patient-focused and family-centered, we call for further research into enhancing the well-being of family caregivers. To optimize both the safety and efficacy of pharmacotherapy, further attention to metabolic, cardiovascular and neurological tolerability is much needed, together with further development and testing of medications that reduce the risk for suicide. At the same time, we also address positive aging and normal cognitive aging, both as an antidote to ageism and as a catalyst for change in the way we think about aging per se and late-life mental disorders more specifically. It is in this context that we provide directions for future clinical care and research.

How did the COVID-19 pandemic impact the wellbeing of family care-givers? A longitudinal study of older adults in Germany

Abstract Previous research was not able to identify an effect of the COVID-19 pandemic on family care-givers' wellbeing due to cross-sectional data structures, care-giver-specific samples or non-probability sampling designs. In this article, by drawing on longitudinal data from a random and representative sample of the German population aged 40 and older, we overcome methodological limitations of previous research. We examine the impact of the COVID-19 pandemic on the wellbeing (life satisfaction, depressive symptoms, loneliness) of different groups of family care-givers (new care-givers, continuous care-givers, past care-givers) and non-care-givers in Germany. We derived a balanced sample of n = 3,875 individuals aged 43–97 (mean = 66.5 years, standard deviation = 10.2 years) from the German Ageing Survey (DEAS) to explore changes in wellbeing between 2017 (pre-pandemic) and June/July 2020 (pandemic). Using a first-difference approach, we found that the pandemic has a negative impact on both non-care-givers' and family care-givers' wellbeing, with increased levels of depressive symptoms and loneliness compared to pre-pandemic times. Changes in depressive symptoms of family care-givers did not significantly deviate from non-care-givers. However, continuous care-givers showed more pronounced increases in loneliness compared to non-care-givers. Our results suggest that family care-givers' wellbeing merits particular attention when considering the long-term consequences of the COVID-19 pandemic on individuals' wellbeing.

Ethical and Policy Implications of Financial Burden in Family Caregivers.

Palliative care nurses are key members of the health care team and provide support to patients and their families navigating chronic and life-limiting illness. Financial burden is an issue inherent to chronic illness, yet has not been fully addressed in family caregivers. The purpose of this article is to (1) provide a case study of a family caregiver navigating chronic illness with her daughter and the associated financial and employment consequences and (2) review the nursing ethical, policy, and practice implications of financial burden for family caregivers. The ethical implications of financial burden in family caregivers relate to health equity and health outcomes for both the patient and family caregiver in treatment access and quality. The policy implications include state and federal policies related to caregiver compensation and support and family medical leave. Palliative care nurses play an integral role in addressing caregiver financial burden through assessment, education, referral, and policy support. Family caregivers are essential to the palliative care team, and palliative care nurses have the opportunity to lead initiatives to support the financial well-being of family caregivers in practice, research, and policy settings.

The psychological well-being of family caregivers of autistic people during the COVID-19 lockdown in Italy

IntroductionPeople with autism spectrum disorder (ASD) frequently need support due to the elevated prevalence of psychiatric and medical comorbidities. The Covid-19 outbreak has severely affected the routinary functioning of healthcare services, thus causing severe consequences for autistic people and their caregivers, an already fragile population prone to mental health diseases.Objectives1. To compare the levels of psychological well-being, insomnia, and family distress perceived by caregivers of autistic people to those perceived by caregivers of people with other types of disability. 2. To evaluate predictors of individual and family distress reported by caregivers of autistic individuals.MethodsWe collected data through a cross-sectional web-based observational study from April 19 to May 3, 2020. Socio-demographic information were collected, and psychopathological variables were assessed using the General Health Questionnaire-12, the Insomnia Severity Index, the Brief Resilient Coping Scale, and the Family Distress Index.ResultsNo significant differences emerged between the two groups of caregivers in terms of well-being, sleep quality, family distress, and level of resilience. The risk of individual distress during the pandemic was higher in people caring for younger autistic people. Lower levels of resilience predicted higher levels of individual distress among caregivers of autistic people.ConclusionsOur study confirmed that caregivers’ mental health is worthy of attention and that people with disabilities may benefit for well-organized healthcare support networks (e.g. in-home services). The non-significant differences found between caregivers of ASD and non-ASD individuals may be related to the severe distress that Covid pandemic caused on the entire population.DisclosureNo significant relationships.

The Experience of COVID-19 Visitor Restrictions among Families of People Living in Long-Term Residential Care Facilities during the First Wave of the Pandemic in Ireland.

Public health responses to COVID-19 in long-term residential care facilities (LTRCFs) have restricted family engagement with residents. These restrictions impact on quality of care and the psychosocial and emotional well-being of family caregivers. Following a national cross-sectional web-based survey, respondents were invited to provide personal reflections on visitor restrictions. This study aims to describe the consequences of these restrictions for individuals living in LTRCF and their families during the first wave of the COVID-19 pandemic. Data from open-ended questions contained within the survey were analyzed using Braun and Clarke’s (2006) method of thematic analysis. Four themes were identified: 1. Altered Communication and Connection; 2. Emotional and Psychological Impact; 3. Protecting and Caring Role of Staff; 4. Family Role. Throughout the narrative accounts, it is evident that the visitor restrictions impacted on the emotional and mental well-being of families. Some respondents expressed frustration that they could not assist staff in essential care provision, reducing meaning and purpose in their own lives. COVID-19 LTRCF visitor restrictions made little distinction between those providing essential personal care and those who visit for social reasons. A partnership approach to care provision is important and should encompass strategies to maintain the psychosocial and emotional well-being of families and their relatives during times of self-isolating or restrictive measures.

Self-Efficacy and Psychological Well-Being of Family Caregivers of Persons with Spinal Cord Injury

Self-Efficacy and Psychological Well-Being of Family Caregivers of Persons with Spinal Cord Injury

Systematic Review of the Evidence for Stroke Family Caregiver and Dyad Interventions.

Stroke family caregiver and dyad literature has expanded over the past few years. The purpose of this review was to build upon 2 prior systematic reviews to critique, analyze, and synthesize the evidence pertaining to the impact of family caregiver and dyad interventions on stroke survivor and family caregiver outcomes. CINAHL, PsychINFO, PubMed, and reference lists were searched from December 1, 2016 through March 31, 2021. Using PRISMA guidelines (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), articles were identified that tested outcomes from stroke family caregiver or dyad interventions that targeted the health or well-being of family caregivers. Data from the articles were abstracted into tables for analysis, then compared with recommendations from the 2 prior systematic reviews. A total of 18 articles met inclusion criteria (10 caregiver interventions; 8 dyad interventions) representing sample sizes ranging from 7 to 349 caregivers or dyads. Most were randomized controlled trials (n=13); 2 were cluster randomized trials; and 3 were single-group quasi-experimental designs. Of the 18 studies, 8 had <50 caregivers or dyads and 5 were small feasibility studies that reported data trends rather than testing for significance. Only 6 studies reported significant survivor outcomes. Eleven studies reported significant caregiver outcomes, the most common being burden. A number of survivor and caregiver outcomes were not significant, or only significant for certain subgroups. The limited number of studies, small sample sizes, and conflicting results, made it difficult to draw firm conclusions regarding the impact of these interventions on outcomes. Based on the available evidence from these 18 studies, recommendations from the 2 prior reviews were generally supported. Well-designed and well-powered randomized controlled clinical trials are still needed to confirm efficacy of stroke family caregiver and dyad interventions.

Needs of family members caring for stroke survivors in china: A deductive qualitative content analysis study by using the caregiver task inventory-25

BackgroundIn China, family caregivers are usually the main carers of relatives after stroke due to traditional Chinese culture and the limited development of the primary healthcare system. This responsibility often results in burdens and negative health outcomes. However, family caregivers seldom receive support. To improve informal care, as well as the health and well-being of family caregivers, it is important to identify their needs.ObjectiveThis study aimed to deductively explore the needs of family members caring for stroke survivors in China.MethodsTwenty-six semi-structured interviews were performed with family caregivers of stroke survivors who were selected from one city and three communities by purposive sampling. A deductive qualitative content analysis method was performed by using the Caregiver Task Inventory-25 (CTI-25), an instrument measuring the needs of family caregivers, as a framework.ResultsAll subscales, as well as all belonging items in the CTI-25, were identified in the present study, meaning that the family caregivers had needs related to learning to cope with new role, providing care according to care-receiver’s needs, managing own emotional needs, appraising supportive resources, and balancing caregiving needs and one’s own needs. Moreover, needs related to financial support, both direct and indirect, were identified but not part of the CTI-25.ConclusionThese findings identified that family caregivers of stroke survivors in China had various needs, which is important knowledge when assessing needs and improving health care for family caregivers. Cultural adjustments and modifications should be made if CTI-25 is used in mainland China. This study also indicated a comprehensive and holistic perspective (individual, community, and social level) when identifying, assessing needs or implementing interventions to support family caregivers.

Caregiving in a Pandemic: COVID-19 and the Well-Being of Family Caregivers 55+ in the United States.

Little is known about the effects of Coronavirus disease 2019 (COVID-19) on older family caregivers. Using data from a national sample of 2,485 U.S. adults aged ≥55, we aimed to describe the magnitude of disruptions to family care arrangements during the initial wave of the COVID-19 pandemic, and the associations between these disruptions and the mental health outcomes (depression, anxiety, loneliness, and self-rated health) and employment outcomes (job loss or furlough, hours or wages reduced, transition to work-from-home) of family caregivers. We found that COVID-19 disrupted over half of family caregiving arrangements, and that care disruptions were associated with increased depression, anxiety, and loneliness among caregivers, compared with both noncaregivers and caregivers who did not experience disruptions. Family caregivers who experienced pandemic-related employment disruptions were providing more care than caregivers who did not experience disruptions. These findings highlight the impact of the pandemic on an essential and vulnerable health care workforce.

Factors associated with the well-being of family caregivers of people with dementia.

Improving the health and well-being of family caregivers of people with dementia has become an increasingly important public health and policy issue in China. The aims of this study were to clarify the factors associated with the well-being of family caregivers of people with dementia in China. Data were collected from a sample of 132 family caregivers who volunteered to study and live together with people with dementia who had been treated as outpatients in three hospitals in China. The survey included questions on the family caregivers' characteristics, satisfaction with family support, positive aspects of caregiving, preparedness of caregiving, and characteristics of people with dementia. Multiple linear regression analysis was carried out to identify factors associated with the well-being of family caregivers. The mean age of the family caregivers (68.2% women) was 46.8 ± 14.9 years. The results of multiple linear regression analysis indicated that positive aspects of caregiving (β=0.352, P < 0.001), satisfaction with family support (β=0.219, P < 0.01), activities of daily living of people with dementia (β=0.265, P < 0.05), and household size (β=-0.184, P < 0.05) were related to the well-being of family caregivers. The findings from this study indicated that positive aspects of caregiving, satisfaction with family support, activities of daily living of people with dementia, and household size were significant factors related to the well-being of family caregivers. These findings could be expected to aid healthcare providers in identifying the optimal solution to enhance the well-being of family caregivers in China.

A Descriptive Study of Quality of Life of Caregiver in the Family of Schizophrenia Patients

People with Schizophrenia frequently live with their families. Family is required to support schizophrenia patients. However, Family caregivers who take care of patients with schizophrenia tend to have burdens and stigma. Burden among family caregivers had an effect on the decreased quality of life. The purpose of this study was to describe the quality of life among family caregivers of schizophrenia patients. This study was a cross-sectional design. The inclusion criteria of this study were family caregivers with Schizophrenia outpatients in Menur Mental Hospital. The total sample in this study was 160 family caregivers using a simple random sampling technique. We collected the data from June to July 2021. We used the Schizophrenia Care Giver Quality of Life Questionnaire (S-CGQoL) to measure the quality of life among care givers. All data were inputted in SPSS. Descriptive statistics were used to calculate the mean, median, frequency, standard deviation, and percentage of variables. Most of the family caregivers had a very good quality of life (41.3%). The sociodemographic showed that most of the participants were female (54.4%), adult (55.0%), had senior high school degrees (51.9%), unemployed (45.6%), and the majority gender of patients was female (47.5%). In addition, all of the participants regularly check-up at Menur Mental Hospital (100.0%). Managing quality of life among family caregivers is required to provide for patient needs and the well-being of family caregivers.

An Often Unnoticed Aspect of Caregiving: Let's Shake Up Our Conscience for the Well-Being of Family Caregivers.

An Often Unnoticed Aspect of Caregiving: Let's Shake Up Our Conscience for the Well-Being of Family Caregivers.

Care-giver wellbeing: exploring gender, relationship-to-care-recipient and care-giving demands in the Canadian Longitudinal Study on Aging

AbstractThe three-way intersection of gender, relationship-to-care-recipient and care-giving demands has not, to our knowledge, been examined in relation to the wellbeing of family care-givers. We explore inequalities in depressive symptoms and life satisfaction, comparing wives, husbands, daughters and sons providing very-intensive care (36+ hours/week) with those providing less care and disparities between these groups in the factors related to disadvantage. Data from the Canadian Longitudinal Study on Aging (N = 5,994) support the existence of differences between the groups. Very-intensive care-giving wives report the most depressive symptoms and lowest life satisfaction; less-intensive care-giving sons report the fewest depressive symptoms, and less-intensive care-giving daughters report the highest life satisfaction. However, group differences in life satisfaction disappear among very-intensive care-givers. Drawing on Intersectionality and Stress Process theories, data from regression analyses reveal a non-significant gender–relationship–demand interaction term, but, health, socio-economic and social support resources play a strong mediating role between care demand and wellbeing. Analyses of the eight groups separately reveal diversity in the care-giving experience. Among less-intensive care-givers, the mediating role of resources remains strong even as differences are evident. Among very-intensive care-givers, the role of resources is less and differences in wellbeing between the groups are magnified. Policy implications emphasise the imperative to personalise services to meet the varied needs of care-givers.

Working Family Caregiver Well-Being: Work Impact, Workplace Supports, and Family Discord

A recent study by our team showed that family discord about care provision among multiple family caregivers was a significant predictor of caregiver burden, anxiety, depression, and activity restrictions. This study examined the combined effects of family discord, work impacts (missed work, caregiving affects work), and workplace supports (flexible hours, caregiver benefits) on caregiver well-being. We conducted a secondary analysis using cross-sectional survey data from the Western Pennsylvania Family Caregiving Project 2017-2018. Participants were family caregivers who worked outside the home and shared older adult (i.e. over age 50) caregiving responsibilities with family (n=364, mean age: 52.59 years, female: 71.7%, White: 79.7%, cared for a parent: 69.5%, mean work hours/week: 37.30). Hierarchical regression analyses were conducted testing for main effects of family discord, work impacts, and workplace supports; and interactions between discord and work impacts/workplace supports. The presence of family discord negatively impacted all caregiver well-being outcomes (p<0.05). Having more work impacts increased the risk for anxiety (p<0.04), activity restrictions (p<0.01) and burden (p<0.01). No main effects were found for workplace support. Moderating effects were found, such that anxiety was high when family discord and work impacts were higher (p=0.025). Additionally, more activity restrictions occurred when caregivers had low workplace support and higher family discord (p=0.020). Results suggest having less family discord, more workplace support, and less negative work impacts may improve caregiver well-being. Future work is needed to determine which work supports are most beneficial to this population and how family discord and negative work impacts can be reduced.

Psychosocial Experiences of Family Caregivers of Children with Intellectual Disabilities in Alice, Eastern Cape, South Africa

In this study, we explored the psychosocial experiences of family caregivers of children with intellectual disabilities in the rural town of Alice in the Eastern Cape, South Africa. We intended to uncover the psychosocial well-being of family caregivers of children with intellectual disabilities. We adopted qualitative research methods. Snowball sampling was employed to recruit 15 family caregivers of children with intellectual disabilities in Alice. The age of the family caregivers ranged from 20 to 65. All the participants were black people and included both males and females. The data were collected through face-to-face semi-structured individual interviews. We analysed the data using thematic analysis. The study findings indicate that family caregivers of children with intellectual disabilities experience the caregiving process negatively in the various aspects of life. These aspects include social, personal, financial, emotional and health aspects. Also, the caregiving process carries a heavy burden. In light of the findings, we conclude that there is a need for the continuous rendering of comprehensive psychosocial support services to family caregivers of children with disabilities. It is recommended that social workers empower family caregivers of children with intellectual disabilities so that they can function effectively in their communities. Furthermore, the government needs to reinforce existing policies that support these psychosocial services.

Predictors of Spiritual Well-Being in Family Caregivers for Individuals with Parkinson's Disease.

Background: Parkinson's disease (PD) is a common neurodegenerative illness that causes disability through both motor and nonmotor symptoms. Family caregivers provide substantial care to persons living with PD, often at great personal cost. While spiritual well-being and spirituality have been suggested to promote resiliency in caregivers of persons living with cancer and dementia, this issue has not been explored in PD. Objective: The aim of this study was to identify predictors of spiritual well-being in PD patients' caregivers. Design: A cross-sectional analysis was performed. Our primary outcome measure, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp), was measured in caregivers alongside measures of patient quality of life, symptom burden, global function, grief, and spiritual well-being and caregiver mood, burden, and perceptions of patient quality of life. Univariate correlation and multiple regression were used to determine associations between predictor variables and caregiver FACIT-Sp. Setting/Subjects: PD patient/caregiver dyads were recruited through three academic medical centers in the United States and Canada and regional community support groups. Results: We recruited 183 dyads. Patient faith, symptom burden, health-related quality of life, depression, motor function, and grief were significant predictors of caregiver spiritual well-being. Predictive caregiver factors included caregiver depression and anxiety. These factors remained significant in combined models, suggesting that both patient and caregiver factors make independent contributions to caregiver spiritual well-being. Conclusions: The present study suggests that both patient and caregiver factors are associated with spiritual well-being in PD. Further study is needed to understand the causal relationship of these factors and whether interventions to support caregiver spiritual well-being improve outcomes for caregivers or patients. Clinicaltrials.gov registration NCT02533921.

The Cost of Isolation

Background: Recent research has found that family (e.g., informal, unpaid) caregivers to those in long-term care can experience significant risk of social isolation, a harmful social outcome linked to poor health and wellbeing. For many, the COVID-19 global pandemic has been a time marked by challenges that have exacerbated existing risk of social isolation and has likely impacted mental health and wellbeing among caregivers. As such, this paper outlines a protocol to investigate the extent to which the COVID-19 pandemic has impacted the psychological health and well-being of family caregivers of people living in residential long-term care.&#x0D; Methods/Design: A descriptive phenomenological design and photovoice methodology will be used alongside focus groups to capture the perspectives and voices of 15-20 family caregivers. Data will be analyzed thematically, and themes will be developed collaboratively alongside participants. A secondary analysis will be guided by a cumulative inequality lens to consider how the COVID-19 pandemic has differentially affected caregivers.&#x0D; Discussion: The results will fill a significant gap in the existing literature on caregiver isolation during this pandemic and inform the development and/or refinement of caregiver supports.

Exploring resilience and well-being of family caregivers of people with dementia exposed to mandatory social isolation by COVID-19.

BackgroundThe COVID-19 pandemic has raised questions about the resilience of health care systems worldwide. In this regard, one group of people whose physical and mental health has been affected has been family caregivers of people with dementia.ObjectiveThis study aims to identify the variables that predict a high degree of well-being in family caregivers of people with dementia during this period of mandatory lockdown.MethodsA total of 310 respondents participated in an online survey (266 women and 44 men) from various regions in Spain, aged between 20 and 73 years old (M = 46.45; SD = 15.97), and all were family members.ResultsThe results showed that there were notable differences in all the protective variables, together with a significant strong positive relationship between well-being and resilience (r = 0.92; p < 0.01) and with coping strategies (r = 0.85; p < 0.01), and there were also some significant negative relationships between well-being and difficulties in emotional regulation (ρ = −.78; p < 0.01). The most predictive variables of a higher level of well-being included the type of dementia (β = 1.19; CI (95%) = 1.01-1.29; p< 0.01), living in a large house (β = 0.97; CI (95%) =. 23-0.98; p < 0.01), social support as a coping strategy (β = 1.27; CI (95%) = 1.21-1.29; p < 0.01) and mainly resilience (β = 1.34; CI (95%) = 1.30-1.37; p < 0.01).DiscussionWe discuss the importance of promoting higher levels of resilience through the development of protective psychosocial variables in caregivers of people with dementia exposed to situations of mandatory social isolation as a modulator of the psychosocial well-being of these family caregivers.

Family Caregivers' Psychosocial Well-being in the Context of the Great Recession.

The economic instability of the Great Recession contributed to a rise in multigenerational households as more individuals took on unanticipated care responsibilities for older family members while navigating financial uncertainties. Guided by the life course perspective, this study compared the psychological and social well-being of family caregivers and examined the moderating influences of financial challenges experienced during the Great Recession. Filial and sandwiched caregivers (N = 138; Mage = 52.80; SDage = 11.25) from the Refresher Cohort of the Midlife in the United States (MIDUS) survey provided information on demographics, caregiving, financial challenges, and well-being. Findings from regression analyses showed that sandwiched caregivers exhibited lower environmental mastery and positive relations with others than filial caregivers (p = .07). Moderation analyses showed that sandwiched caregivers with fewer than average financial challenges exhibited lower social actualization than the other family caregivers (p = .01). Study findings underscore the need to support family caregivers' psychosocial well-being as they navigate caregiving responsibilities and financial disruptions.

The Impacts of an Educational Program by Using Group Discussion on Perceived Stigma Among the Family Caregivers of People with Alzheimer’s Disease

Background: The objective of the present study was to determine the impacts of an educational program by using group discussion on perceived stigma among family caregivers of people with Alzheimer’s disease (AD). Methods: This nonequivalent non-randomized controlled trial was performed in 2015. A sample of 66 family caregivers of people with AD was recruited conveniently. The caregivers were non-randomly allocated to a control and an experimental group. Initially, the perceived stigma of all participants was measured by using the Stigma Impact Scale. Then a five-session educational program by using group discussion was held over five weeks for the caregivers in the experimental group. The caregivers in the control group received no intervention. The level of caregivers' perceived stress was re-assessed both immediately and one month after the intervention. Results: The difference between the groups in terms of pretest perceived stigma was not statistically significant (P = 0.146). However, immediately and one month after the intervention, the mean score of perceived stigma in the experimental group was significantly lower than in the control group (P &lt; 0.05). The results of repeated measures ANOVA for the between-subject factor of the group also showed that the intervention had significant effects on the caregivers’ perceived stigma (P = 0.004). Conclusions: The findings of the present study showed the noticeable effects of the educational program using group discussion on the perceived stigma of family caregivers of people with AD. This finding can denote the importance of experience sharing in the psychological well-being of family caregivers. Through group discussion and experience sharing, caregivers learn the necessary skills for coping with their own problems. Given their effectiveness, educational interventions by using group discussion are recommended to reduce perceived stigma among family caregivers.