Caregiving Duties Research Articles

Association Between Unequal Division of Caregiving Work and South Korean Married Women's Depressive Symptoms.

Background:A disproportionate amount of family caregiving can negatively impact married women's mental health. This study aims to examine the relationship between depressive symptoms in South Korean women and the satisfaction with their husband's participation in family caregiving.MethodsRaw data from 1,515 of the participants in the 2014, 2016, and 2018 Korean Longitudinal Survey of Women and Families were analyzed. Satisfaction with husbands' participation in family caregiving was classified as satisfied, less satisfied, and not satisfied. The survey used the Center for Epidemiologic Studies Depression Scale to measure depressive symptoms. The association was examined using a generalized estimating equations model.ResultsResults indicated 22.2% of the participating women reported depressive symptoms. Women who reported dissatisfaction with their husband's participation in caregiving were 2.54 times more likely to report depressive symptoms than the women who were satisfied. Subgroup analysis indicated that women with higher levels of education, were more likely to have depressive symptoms when they were not satisfied with their husbands' participation in caregiving.ConclusionMarried women who reported being dissatisfied with their husbands' participation in caregiving were more likely to report depressive symptoms. These results suggest the need to create environments with fair distribution of caregiving duties to minimize depressive symptoms in women.

Parenting and caregiving duties as career challenges among clinical microbiologists: a cross-sectional survey.

Aim: To estimate the burden of parenting and caregiving duties among clinical microbiologists in Germany and to identify workplace-related support systems and barriers to engaging in career-relevant activities. Methods: A cross-sectional web-based survey was conducted. Participants were asked to answer 37 questions, of which 24 specifically addressed parenting and caregiving duties. Results: Only few workplace-related support systems are currently available, and experiences of job-related disadvantages were frequently reported (27 of 47; 57.4%). Main barriers were a lack of flexible working hours and reliable childcare. Sociocultural norms and a lack of role models were perceived as detrimental. Conclusion: More support systems and a credible culture of family friendliness are needed to prevent jeopardizing the academic potential of young parents.

The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study

BackgroundRespite care provides caregiving support to people with amyotrophic lateral sclerosis (ALS) and their care partners by providing the care partner with temporary relief from their caregiving duties. The aim of this study was to explore the impact of respite care through the perspectives and lived experiences of people with ALS and their care partners.MethodsThirty-one dyads (62 participants) of people with ALS and their care partners were assigned to either the control group or the respite care intervention. Respite care was provided in the form of home-based services. Semi-structured interviews were conducted with participants at baseline and after a six-month period to gather perspectives on ALS caregiving, perceptions of respite care, and the respite care experience. Interviews were transcribed and subjected to thematic analysis.ResultsCaregiving challenges specific to the care partner and the patient-care partnership relationship were identified. Overall, people with ALS and care partners responded positively to in-home respite care and reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both the person with ALS and the care partner. Barriers and concerns were raised surrounding privacy and staff consistency.ConclusionThis study highlights respite care as a critical tool to alleviate caregiving challenges and support the needs of people with ALS and their care partners. Engagement with the ALS community and formal evaluations of respite care services should be prioritized in order to minimize barriers and best meet the needs of people with ALS and their care partners.

Parental work hours and household income as determinants of unhealthy food and beverage intake in young Australian children.

This study examined parental work hours and household income as determinants of discretionary (energy dense, nutrient poor) food and beverage intake in young children, including differences by eating occasion. Secondary analysis of cross-sectional data. Three hierarchical regression models were conducted with percent energy from discretionary food and beverages across the day, at main meals, and at snack times being the outcomes. Dietary intake was assessed by 1x24-hour recall and 1-2x24-hour food record(s). Both maternal/paternal work hours were included, and total household income. Covariates included household, parent and child factors. Data from the NOURISH/SAIDI studies were collected between 2008-13. Participants included 526 mother-child dyads (median(IQR) child age 1.99(1.96,2.03) years). Forty-one percent of mothers did not work while 57% of fathers worked 35-40 hours/week. Most (85%) households had an income of ≥$50k AUD/year. Household income was consistently inversely associated with discretionary energy intake (β= -0.12 to -0.15). Maternal part-time employment (21-35 hours/week) predicted child consumption of discretionary energy at main meals (β=0.10, p=0.04). Paternal unemployment predicted a lower proportion of discretionary energy at snacks (β= -0.09, p=0.047). This work suggests that household income should be addressed as a key opportunity-related barrier to healthy food provision in families of young children. Strategies to reduce the time burden of healthy main meal provision may be required in families where mothers juggle longer part-time working hours with caregiving and domestic duties. The need to consider the role of fathers and other parents/caregivers in shaping children's intake was also highlighted.

Women healthcare workers' experiences during COVID-19 and other crises: A scoping review.

BackgroundThroughout the COVID-19 pandemic, as measures have been taken to both prevent the spread of COVID-19 and provide care to those who fall ill, healthcare workers have faced added risks to their health and wellbeing. These risks are disproportionately felt by women healthcare workers, yet health policies do not always take a gendered approach.ObjectivesThe objective of this review was to identify the gendered effects of crises on women healthcare workers’ health and wellbeing, as well as to provide guidance for decision-makers on health systems policies and programs that could better support women healthcare workers.MethodsA scoping review of published academic literature was conducted. PubMed, EMBASE, and CINAHL were searched using combinations of relevant medical subject headings and keywords. Data was extracted using a thematic coding framework. Seventy-six articles met the inclusion criteria.ResultsDuring disease outbreaks women healthcare workers were found to experience: a higher risk of exposure and infection; barriers to accessing personal protective equipment; increased workloads; decreased leadership and decision-making opportunities; increased caregiving responsibilities in the home when schools and childcare supports were restricted; and higher rates of mental ill-health, including depression, anxiety, and post-traumatic stress disorder. There was a lack of attention paid to gender and the health workforce during times of crisis prior to COVID-19, and there is a substantial gap in research around the experiences of women healthcare workers in low- and middle-income countries during times of crises.ConclusionCOVID-19 provides an opportunity to develop gender-responsive crisis preparedness plans within the health sector. Without consideration of gender, crises will continue to exacerbate existing gender disparities, resulting in disproportionate negative impacts on women healthcare workers. The findings point to several important recommendations to better support women healthcare workers, including: workplace mental health support, economic assistance to counteract widening pay gaps, strategies to support their personal caregiving duties, and interventions that support and advance women's careers and increase their representation in leadership roles.

“Iranian family caregivers of autistic children: the experience of stigma”

PurposeAutistic children and their family caregivers are impacted widely by the social arrangements, which bring up a variety of problems and make their caregiving duties even more difficult. One of the main troubles family caregivers struggle with is the “Autism stigma” that eventually leads to social exclusion. This study aims to identify shreds of evidence of Autism stigma experienced by family caregivers of autistic children. The study also aims to present some general comparison between the findings in Iran and a few other countries’ available respective data to the “Autism stigma.”Design/methodology/approachThis study is an inductive qualitative content analysis. Twelve family caregivers were purposefully selected. Data were gathered exercising semi-structured, in-depth interviews and scrutinized using content analysis method.FindingsIn the interviews with the participants, a new category called “Autism stigma” was discerned. This category includes three subcategories: “Diagnosis process,” “Lack of awareness” and “Presence in the society.”Originality/valueIn Iran, Autism is considered a kind of social stigma. It mainly happens due to a lack of public awareness about this psychological disorder. The family caregivers in the community suffer from the stigma of autism, which leads them to distance themselves from society. This paper aims to improve the social awareness in regard to the negative impacts of Autism stigma.

The prevalence of physical activity among informal carers: a systematic review of international literature

Previous research has found physical activity levels among carers are low, and that carers are at greater risk of physical inactivity than their non-carer counterparts. Alternatively, research also suggests providing care may be associated with higher levels of physical activity than the general population, due to physically active care duties. Overall, there is a need to better understand the physical activity levels of carers to develop appropriate interventions and policies to promote health and well-being among carers. To systematically review studies reporting the prevalence of physical activity among carers. PubMed, SPORTDiscus, PsycINFO, and CINAHL, OpenGrey, Google and Google Scholar were searched for eligible articles. A total of 77 observational studies and 20 interventional studies were included. In low quality studies which examined adherence to physical activity guidelines, 16–84% of carers self-reported not meeting PA guidelines, whilst medium–high quality studies found 29.9 to < 99% of carers self-reported not meeting physical activity guidelines. However, it is not clear if carers are at higher risk of physical inactivity than non-carers. Studies which compared the physical activity levels of carers to non-carers reported conflicting results, and the association between hours of carers time, burden or strain, and physical activity was not consistent across studies. Further research with validated measures of different physical activity domains (leisure time, daily physical activity, caregiving duties), mental and physical health, is needed to better understand the physical activity behaviours of carers, and the associated health outcomes.

Gender and the pandemic: Associations between caregiving, working from home, personal and career outcomes for women and men.

The coronavirus pandemic lockdowns have led to an increase of caregiving and household responsibilities for many employees while working from home. We aimed to investigate whether there was a gender imbalance in the division of household labour within families during the pandemic, and whether this imbalance was associated with gender differences in personal outcomes (work-family conflict, burnout) as well as career-related outcomes (career self-efficacy and aspirations). Participants were 240 heterosexual individuals with or without caregiving responsibilities who lived with a partner and worked from home during the pandemic. They completed self-report questionnaires and indicated the division of domestic tasks within their household, the extent to which they experienced burnout and work-family conflict, and their career aspirations and career self-efficacy. The findings showed a significant gender imbalance, such that female caregivers spent significantly less time on work compared to the other groups and significantly more time on caregiving compared to male caregivers during the lockdown. There was a significant direct effect of caregiving on career outcomes for women, such that the more caregiving women performed during the lockdown relative to other tasks, the more negative their self-reported career outcomes were. Among men, caregiving did not predict career outcomes. Overall, our study showed that the gender imbalance in distributions of caregiving duties during the pandemic is associated with negative personal and professional outcomes for women who are caregivers. Practical implications are discussed accounting for this gender imbalance in the context of the pandemic and its influence on wellbeing and career outcomes, particularly for heterosexual women.Supplementary InformationThe online version contains supplementary material available at 10.1007/s12144-021-02630-6.

Understanding the Predictive Factors that Influence the Perceived Burden of Dementia Caregivers

Caregivers of individuals with dementia have increased levels of burden because of their caregiving duties which in turn results in negative effects on their physical, emotional, and mental wellbeing. Few studies have examined individual difference-based constructs such as positive and negative affect in relation to caregiver burden. Positive affect is characterized by pleasant emotions and expressions and higher levels of overall life satisfaction whereas negative affect is characterized by more pessimistic emotions and expressions and lower overall life satisfaction. Analyses were performed on dementia caregivers (n=102) using the online data collection tool MTurk Prime. The average caregiver provided 21 or more hours of care with 76.9% of caregivers living with their loved one with dementia. Significant correlations were found between caregiving burden and positive affect (r= -.31, p=.002) and negative affect (r= .56, p=<.001), with higher positive affect related to lower burden and higher negative affect related to greater burden. Results of multiple regression models showed that positive affect (β = -.24, p = .03) and negative affect (β = .35, p = .01) were significant predictors of burden even while controlling for other constructs including types of coping, compassion towards other, and assessment of family dynamics. Understanding the relationship between these constructs will allow for more individualized interventions to be created to help reduce the level of burden that dementia caregivers experience.

Family Caregiver Health in a Pandemic

Each year family caregivers provide care and services worth billions of dollars to support the needs of older Americans. Their support is invaluable to keep individuals in the community for as long as possible and to allow individuals to attain and maintain their highest practicable level of well-being. But what impact does caregiving have on one’s health? Does caregiver health decline with the assumption of caregiving duties? Did caregiver health change during the pandemic? If so, how and what factors are associated with declines in caregiver health? To answer these questions, an exploratory survey was conducted among a convenience sample of 195 family caregiver. Almost a third of those sampled reported excellent or very good health, while 44% reported good health, and almost a quarter reported poor or fair health. Forty-eight percent reported their health had declined since they assumed caregiving duties and 29% reported their health had declined during the pandemic. Employed caregivers and those experiencing less depression/anxiety reported better health. Those experiencing a decline in health with caregiving were more likely to be female, not employed, experienced more stress and more depression/anxiety. Those experiencing a decline in health during the pandemic reported less spirituality, greater attachment related avoidance, and greater depression/anxiety. Findings from this research can be used to inform future research on the effect of the pandemic on family caregiving and to plan interventions to protect caregiver health as they provide vital services to maintain individuals in the community for as long as possible.

Use and Disuse of Technology Among Persons With Memory Concerns and Their Caregivers During the COVID-19 Pandemic

Social distancing and shelter-in-place orders designed to curb the spread of COVID-19 increased isolation among persons with memory concerns (PWMC) and increased the burden on individuals providing their care. Technology, such as smartphones or tablets, has demonstrated potential to improve the social connections and mental health of older adults; however, older adults historically have been reluctant to adopt new technology. We aimed to understand why some PWMC and their caregivers used new technology to adapt to lifestyle changes during the COVID-19 pandemic while others did not. In this study, we used data collected in 20 qualitative interviews from June to August, 2020 with PWMC and their family caregivers to assess changes in and barriers to technology use. Qualitative thematic analysis identified three themes which explained motivations for using new technology during a pandemic: 1) seeking relief from caregiver burden, 2) alleviating boredom, and 3) maintaining social connection. Results further revealed lingering barriers to PWMC and caregiver adoption of technologies, including: 1) PWMC dependence upon caregivers, 2) a lack of familiarity with technology, and 3) difficulties using technology. This in-depth investigation suggests that technology has the ability to provide caregivers relief from caregiving duties and provide PWMC with more independence during periods of pronounced isolation

State-Level Policy Actions to Support Family Caregivers

The stresses created by the growing need for family caregivers have failed to prompt federal policy action; in its absence, states are stepping up. This review of state policies that support employment among family caregivers found six main categories of legislative action: paid leave; expanding federally mandated unpaid leave; paid sick time; unemployment insurance for job loss attributable to caregiving duties; establishing family caregivers as a protected classification in employment discrimination; and flexible or alternative work schedules. Despite the demand for policies that support and empower working caregivers, a minority of states have passed such legislation; to date, 9 states have implemented paid family leave; 14 have implemented mandatory sick leave legislation; and 14 have expanded FMLA. This study discusses state-level policy actions, reviews the status and importance of these policies, and finds that despite gaps in caregiver support legislation at the state level, there is significant and promising momentum.

Family Caregiving for Persons With Emotional, Developmental, and Behavioral Disorders During COVID-19

COVID-19 has the potential to exacerbate stresses of family caregiving. While studies during COVID-19 have focused on caregivers of those with memory / cognitive issues like Alzheimer’s Disease, less attention has been paid to those caring for persons with emotional / developmental / behavioral disorders. This paper compares family caregivers of persons with emotional / developmental / behavioral disorders (EDB); physical conditions (PH); and memory / cognitive problems (MC) during the early phase of the pandemic. We focus on demographics, caregiving context, COVID-related caregiver stressors, and validated physical, psychosocial, and financial well-being outcomes. We conducted a cross-sectional national online survey during April-May, 2020 (n = 556). The sample included 274 PH (50%), 141 MC (25%), and 141 EDB (25%) caregivers. EDB caregivers were younger, with younger care recipients who were more likely to be their child. EDB caregivers reported more COVID-related caregiver stressors than MC or PH caregivers, including increased caregiving duties (p<.01); more family disagreements about care provision (p=.05); and worsened mental health of the care recipient (p<.01). In multivariate regression models, EDB caregivers had significantly higher anxiety; depression; and fatigue (all p<.01); more sleep disturbance (p=.05); less social participation (p<.05); and poorer overall financial well-being (p<.05). MC caregivers also reported more negative outcomes, but effects were consistently strongest for EDB caregivers. This study shows that EDB caregivers are at significantly elevated risk for negative impacts due to COVID-19 and should receive increased support and attention during this public health crisis.

Romantic Partner Interference and Psychological Reactance in the Context of Caregiving for an Aging Family Member

Negotiating romantic relational dynamics is inherent to family caregiving situations, which continue to be on the rise in the United States. However, despite evidence that family caregiving duties are linked to a variety of negative relational outcomes, limited research examines communication processes that contribute to or alleviate the burden of caregiver duties on romantic relationships. Guided by psychological reactance theory (PRT), this study examined the link between romantic partner interference with family caregiving duties and the reactance process, as well as directness of communication about irritation as a type of freedom restoration behavior associated with reactance. Adults caring for aging family members recruited from MTurk ( N = 187) completed an online survey as part of a larger study of romantic partner communication surrounding family caregiving. Results using PROCESS serial mediation indicated that greater partner interference was related to heightened perceptions of freedom threat, which was positively associated with the experience of reactance, which in turn was associated with communication about irritation. However, the association between reactance and directness of communication about irritation was negative, the opposite direction of what was hypothesized. Implications for PRT and interventions with caregivers and their romantic partners are discussed.

Exploring the Impact of Dementia in Samoan Culture: A Qualitative Study on Community Perspective

ABSTRACT Purpose: Explore if and how American Samoan cultural norms influence caregivers’ knowledge, attitudes, and care choices for person’s living with Alzheimer’s Dementia (AD).Design: This pilot study used mixed methods.Methods: 1) Quantitative survey: measuring knowledge/attitudes towards AD (n = 80); 2) Qualitative techniques: a) Focus groups (n= 54) with caregivers; b) Semi-structured interviews (n=26) with health professionals; and c) In-depth interviews (n=3) with key informants. Emergent themes were created using data from all methods.Findings: Quantitative analyses revealed 50% of participants identified AD as normal aging, 83% as mental illness. The majority of participants believed elders with AD do not experience pain (70%) and should be cared for solely at home (74%). Qualitative evidence showed dissonance between cultural norms of respect for elders, familial caregiving duty, shame in others observing elders’ dementia-related behaviours, and the current language used to describe AD.Conclusions: Our findings show a need for developing and disseminating culturally sensitive terminology for AD to destigmatize and transmute attitudes, knowledge and care choices for elders living with AD.Clinical Evidence: American Samoan terminology for dementia is discordant with its cultural norms, thus shaping caregivers’ perceptions of AD and influencing care choices for managing AD symptoms.

Association between employment status change and depression and anxiety in allogeneic stem cell transplant caregivers.

Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is a demanding treatment that requires caregiver support during the first 100days post-transplant. Little is known about the association between caregivers' employment changes and their well-being during this lengthy and challenging time when caregivers may be balancing work with caregiving responsibilities. We used data from employed caregivers of Allo-HSCT patients who participated in two randomized clinical trials (N = 187) of an intervention for caregivers. Caregiver depression and anxiety were assessed using the Center for Epidemiologic Studies Depression and the Spielberger State-Trait Anxiety Inventory. ANCOVA was used to measure the associations between reducing work with depression and anxiety. Caregiver's demographics and baseline employment status were controlled in the analysis along with the patient's transplant conditioning intensity. Approximately 45% of caregivers reduced hours worked following the resumption of their caregiving duties. These caregivers, on average, had 3.49 points higher depression scores than caregivers who did not report a reduction in work (p < 0.01). Similarly, these caregivers also reported, on average, 3.56 higher anxiety scores (p < 0.10). Caregivers who reduced hours worked while caregiving reported greater distress. The underlying cause of this distress deserves further investigation. Caregivers of patients diagnosed with cancer may experience considerable stress related to work discontinuation and caregiving. Interventions are needed to support caregivers who are trying to balance work and caregiving responsibilities.

Surviving Work from Home: Observations from Singapore.

Circuit Breaker measures were implemented in Singapore on 7 April 2020, and work from home arrangements were officially made compulsory for most due to COVID-19. This study assessed the effects of prolonged telecommuting within the Singapore Police. Items on productivity, satisfaction with telecommuting, work-life effectiveness, feelings of safety, stress levels, connectedness to and support by colleagues, and supervisors were included. The study found that while prolonged telecommuting did not have any impact on levels of satisfaction with telecommuting, individuals with caregiving duties were significantly less satisfied with telecommuting than non-caregivers. Implications of the findings were discussed with respect to the necessary support required by officers while telecommuting. Recommendations on how individuals can practice self-care while telecommuting for prolonged periods were also proposed.

Health, Work, and Social Problems in Spanish Informal Caregivers: Does Gender Matter? (The CUIDAR-SE Study).

(1) Background: The aim of this study was (i) to analyze problems faced by informal caregivers in three areas of their life: health, work and finances, and family and social relationships, (ii) to investigate the main determinants of these problems, and (iii) to explore differences between men and women. (2) Methods: The study population consisted of people aged ≥18 years living in a family home who were providing unpaid care to a dependent person in the same or another home and who were registered as caregivers with the Primary Health Care District of Granada or the Provincial Council of Gipuzkoa. Several logistic regression models were built to analyze the likelihood of caregivers experiencing health, work-related, or social problems as a result of their caregiving responsibilities. (3) Results: Informal female caregivers were more likely to experience problems attributed to caregiving than their male counterparts, particularly in the areas of health and work. Additional factors associated with an increased likelihood of problems were low perceived social support, performance of ungratifying tasks, and fewer years as a caregiver. (4) Conclusions: Informal caregivers in Spain face significant problems as a result of their caregiving duties, and the impact on men and women is different. Policies and interventions to mitigate the negative effects of unpaid caregiving should incorporate differential strategies to meet the specific needs of male and female caregivers in different caregiving contexts.

Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings

BackgroundFamily caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly health consumers living in remote rural areas in Italy.MethodsThis is a community-based participatory research project in the remote area of Vallecamonica involving four main phases. These included a quantitative analysis of caregiver needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a novel service the piloting and a first implementation of the service and the assessment of project transferability to other contexts.ResultsAs the hours dedicated to elder care increases, both objective and developmental caregiver’s burden significantly increases. Conversely, higher levels of engagement were associated with lower physical and emotional burden, and caregiver engagement was positively correlated with their perceived self-efficacy in managing disruptive patient behaviours. Based on these preliminary results, four co-design workshops with caregivers were conducted and led to the definition of the SOS caregivers service, built on four pillars structured upon the previous need analysis: a citizens’ management board, training courses, peer-to-peer meetings, and project and service information. We found that co-design is an effective means of creating new services for family caregivers, whose experiential knowledge proved to be a key resource for the project team in delivering and managing services. Less positively, the transferability analysis indicated that local municipalities remain reluctant to acknowledge caregivers’ pivotal role.ConclusionsA dedicated support service for caregivers can ameliorate caregiving conditions and engagement levels. The service has resulted a successful co-productive initiative for a psycho-social intervention for family caregivers. For the future, we suggest that family caregiver should be considered an active partner in the process of designing novel psycho-social services and not just as recipients to enhance a better aging-in-place process.

Prediction of caregiver quality of life in amyotrophic lateral sclerosis using explainable machine learning

Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative, fatal and currently incurable disease. People with ALS need support from informal caregivers due to the motor and cognitive decline caused by the disease. This study aims to identify caregivers whose quality of life (QoL) may be impacted as a result of caring for a person with ALS. In this study, we worked towards the identification of the predictors of a caregiver’s QoL in addition to the development of a model for clinical use to alert clinicians when a caregiver is at risk of experiencing low QoL. The data were collected through the Irish ALS Registry and via interviews on several topics with 90 patient and caregiver pairs at three time-points. The McGill QoL questionnaire was used to assess caregiver QoL—the MQoL Single Item Score measures the overall QoL and was selected as the outcome of interest in this work. The caregiver’s existential QoL and burden, as well as the patient’s depression and employment before the onset of symptoms were the features that had the highest impact in predicting caregiver quality of life. A small subset of features that could be easy to collect was used to develop a second model to use it in a clinical setting. The most predictive features for that model were the weekly caregiving duties, age and health of the caregiver, as well as the patient’s physical functioning and age of onset.