Effects Of Caregiving Research Articles

WHAT MOTIVATES PHYSICIANS TO ADDRESS CAREGIVER NEEDS? THE ROLE OF EXPERIENTIAL SIMILARITY

Abstract Despite the negative emotional and physical consequences of caregiving, caregivers’ needs and risks are often overlooked in health care settings. This study used survey data from a national random sample of primary care physicians (N=106) to examine the factors associated with physicians’ perceived responsibility to identify caregiver needs and risks, focusing on three theoretically implicated variables: 1) experiential similarity (i.e., physicians having personal experience with caregiving), 2) structural similarity (i.e., physicians being older and female), and 3) secondary exposure to caregivers (i.e., more time seeing older patients and a higher percentage of older adults in their patient panel). Physicians in our sample consisted of 42.5% women; most of whom were white (73.6%). The majority (76.5%) agreed or strongly agreed that they were responsible for identifying caregivers’ needs and risks. Multivariable models controlling for physicians’ age and gender revealed that physicians who had personal experience with caregiving were four times more likely than those without caregiving experience to feel responsible to identify caregivers’ needs and risks (adjusted odds ratio [aOR] 3.90; 95% confidence interval [CI] 1.34-11.41) and to assess caregivers’ mental health concerns (aOR 3.58; 95% CI 1.29-9.94). Structural similarity and secondary exposure did not play significant roles in motivating physicians. Findings highlight the role of experiential similarity in physicians’ motivation to assess caregivers’ needs and risks. Future work may benefit from designing intervention programs for physicians that incorporate experiential learning activities (e.g., conversations in which caregivers share their experiences) and evaluating whether such programs enhance physicians’ sensitivity toward family caregivers.

Characteristics and Psychosocial Well-being of Caregivers of Veterans with TBI

<h3>Research Objectives</h3> The study has two aims: 1) To investigate the extent to which the veterans' traumatic brain injury (TBI)-related changed behaviors are related to the spouse/partner caregiver's psychosocial well-being in terms of spirituality, family happiness, depression, anxiety, and perceived stress. 2) To investigate caregivers' demographic characteristics and caregiving situations in relationship to their perceptions of their care recipients' post-TBI behaviors. <h3>Design</h3> Secondary cross-sectional survey study. <h3>Setting</h3> Participants were recruited nationally via flyers posted at Veterans Affairs (VA) clinics and on Facebook. Recruitment letters were also sent from a polytrauma outpatient clinic of a midwestern VA hospital. <h3>Participants</h3> Inclusion criteria for members of the parent study were (1) female (2) 18 years or older, and (3) wife or female partner caring for a male veteran diagnosed with a TBI within the past three months to 10 years. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> The psychological spiritual subscale and the family happiness subscale of the Ferrans and Powers Quality of Life Index, Center for Epidemiologic Studies Depressive Symptoms Scale, Beck Anxiety Inventory, Perceived Stress Scale, and Key Behaviors Change Inventory. <h3>Results</h3> Caregivers who reported less changed behaviors in the partners with TBI reported higher levels of psychosocial well-being. Lower psychosocial well-being was associated with the interpersonal difficulties and unawareness of problems behaviors, younger age, and white race. <h3>Conclusions</h3> Younger caregivers who are white may be particularly vulnerable to the emotional and mental health consequences of caregiving. Practitioners should consider the impact of age and race on the experience of TBI-related behaviors in order to develop tailored interventions for these caregivers' psychosocial well-being. Interventions that promote social capital may be particularly meaningful for this population. <h3>Author(s) Disclosures</h3> We have no known conflict of interest to disclose.

Relationships between Caregivers’ Psychosocial Well-being, Caregivers’ Characteristics, and Perceived Changed Behavior of Veterans with TBI

<h3>Research Objectives</h3> (1) To examine the extent to which the caregiver's perception of the changed behaviors (e.g., inattention, impulsivity, interpersonal difficulties, apathy, somatic difficulties, unawareness of problems, communication problems, and emotional adjustment) experienced by veterans with traumatic brain injury (TBI) are related to caregivers' psychosocial well-being (e.g., psychological spirituality, family happiness, depression, anxiety, and perceived stress). (2) To identify the relationships among caregiver characteristics (e.g., age, education level, annual income, employment status, and race), caregiving situation (e.g., length of caregiving), and caregivers' psychosocial well-being. <h3>Design</h3> A cross-sectional survey study. We used descriptive statistics and multiple regression. <h3>Setting</h3> Department of Veterans Affairs (VA), and a polytrauma outpatient clinic of a midwestern VA hospital. <h3>Participants</h3> Forty female spouse/partner caregivers of veterans with TBI volunteered to participate in a national survey. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> The psychological spiritual subscale and the family happiness subscale of the Ferrans and Powers Quality of Life Index, Center for Epidemiologic Studies Depressive Symptoms Scale, Beck Anxiety Inventory, Perceived Stress Scale, and Key Behaviors Change Inventory. <h3>Results</h3> Findings demonstrate that caregivers who reported less changed behaviors in the partners with TBI reported higher levels of psychosocial well-being. Among eight evaluated behaviors changed due to TBI, interpersonal difficulties and unawareness of problems were related to all assessed psychosocial well-being of caregivers. Based on regression results, older age of the caregiver reduced the impact of TBI-related changed behaviors on caregivers' depression, anxiety, and perceived stress, while the self-identified race as White was related to increased anxiety. The effect size of the regression models (R squared) are 19.9% - 45.2%, moderate to large. <h3>Conclusions</h3> More research is needed to examine the associations among caregiver well-being and veterans with TBI-related changed behaviors in order to develop tailored interventions to better support veterans and their family members, especially younger caregivers who may be particularly vulnerable to the emotional and mental health consequences of caregiving. <h3>Author(s) Disclosures</h3> We have no known conflict of interest to disclose.

Informal Caregiving Among American Indians and Alaska Natives in the Pacific Northwest.

Unpaid or informal caregivers are people who provide assistance without compensation to adults and children who require care beyond typical needs. Although often rewarding, informal caregiving can be associated with high rates of depression, stress, anxiety, sleep and endocrine system disruption, immunosuppression, and general morbidity and mortality. Few recent studies of informal caregivers have included data from American Indians and Alaska Natives (AI/AN). Given this noteworthy gap in the literature, we surveyed a total of 225 AI/ANs attending two cultural, community functions in the Pacific Northwest to gain a general understanding of frequency of caregiving, caregiver and recipient characteristics, caregiving duties, support needs, and financial, emotional, and physical strains as a consequence of caregiving. Of the 225 participants who completed the survey, 90 (40%) indicated that they had been an unpaid caregiver for a month or more and 28 (12%) were current unpaid caregivers. Consistent with prior research, most caregivers (84%) reported satisfaction from providing help, but 84% of caregivers reported experiencing "increased stress," 40% reported financial strain, and 34% reported decreased health "because of involvement with providing care." Our data also suggested a disproportionate impact on AI/AN women given higher rates of being a caregiver compared to other populations and less support from others in their communities. Our data suggest similarities for AI/AN caregivers with other groups of caregivers but also emphasize the importance of including AI/AN populations in future research in order to understand ways to best serve their unique needs.

Physical and socioeconomic burden of caregiving on family caregivers of children with cancer at a tertiary Hospital in Ghana.

Childhood cancer is proportionately higher in Africa and these result in increased demands on caregivers. The inability of affected children to take care of themselves; coupled with prescribed medical interventions presents physical and social burdens on family caregivers. This study used a qualitative exploratory design to explore the physical and socioeconomic challenges for family caregivers of children diagnosed with cancer and receiving care at one of the biggest tertiary hospitals in Ghana. A total of thirteen family caregivers of children with cancer were interviewed. Two major themes were identified: Burden of care on Physical Health and Socioeconomic burdens of caregiving on the family caregiver. It was reported that family caregivers encounter physical challenges such as Aches and Pains when performing caregiving activities, Loss of Appetite, Fatigue, Compromised Functional State and Sleep Disruption. The second theme, Socioeconomic burdens of caregiving on family caregivers account for the consequences of caregiving on social lives, family relationships, finance and employment. The study recommends that measures that provided relief for the caregivers such as teaching them to adopt local measures of pain relief such as massage should be encouraged. Policies should adopt measures that encourage caregivers to have some days of rest whiles providing care to their children with cancer. Also, health insurance packages that provide relief for the cost of accessing healthcare, should be extended to children with cancers to support their caregivers.

Aggression Towards Caregivers in Parkinson's Disease and Related Disorders: A Mixed Methods Study.

Aggression is one manifestation of behavioral disturbances in neurodegenerative disease with emerging literature suggesting a high prevalence in Parkinson's disease and related disorders (PDRD). Our aim was to describe characteristics, associated factors, and consequences of aggression towards caregivers in PDRD. This is a convergent mixed methods study, leveraging data from 296 PDRD patient-caregiver dyads in a clinical trial of palliative care and semi-structured interviews with a subgroup of 14 caregivers who reported aggression. The primary outcome was baseline caregiver-reported aggression. Using multivariate linear regression, baseline dyad characteristics (eg, measures of disease, psychosocial issues, caregiver strain) were examined to identify factors associated with aggression. Thematic analysis of interviews was used to augment these findings. Associated variables included disease duration (r=0.15, P < 0.05), patient grief (r=0.22, P< 0.001), symptom burden (r=0.18, r < 0.01), resistance to care (r=0.40, P < 0.01), caregivers' depression (r=0.16, P < 0.05), and caregiving burden (r=0.34, P < 0.001). We identified five themes: (1) Aggressive behaviors range from verbal abuse to threats of physical violence; (2) Caregivers believe that aggressive behaviors result from the difficulty patients experience in coping with disease progression and related losses; (3) Caregivers' stress and mental health are worsened by aggressive behaviors; (4) Aggressive behaviors negatively affect patient-caregiver relationships; (5) Caregivers are ill-prepared to manage aggressive behaviors and cope with the consequences on their own. Aggression in PDRD is driven by diverse factors (eg, grief, fluctuations in cognition) with serious consequences for caregivers. Neurologists and movement specialists should consider screening for aggression while prioritizing caregiver education and wellbeing.

The wage penalty for informal caregivers from a life course perspective.

Caring for a friend or family member in need of care has been found to have negative consequences for wages. This study contributes to the literature by studying how three major life course factors, namely timing of first caregiving, duration of caregiving, and the number of caregiving episodes, help to explain the (hourly) wage penalty for informal caregivers (i.e., providers of health-related care to older or disabled people in the personal network). We used unique retrospective data of 1417 informal caregivers in the Netherlands that map start and end dates of up to seven caregiving episodes. Findings showed that a higher number of caregiving episodes was related to a stronger wage penalty, whereas timing of first caregiving was not associated with a wage penalty. Opposite to our expectation, we found that the wage penalty decreased the longer someone cared, potentially even resulting in a wage premium for long-time caregivers. We conclude that applying a life course perspective is relevant when examining employment consequences of informal caregiving and that caregiving possibly fosters skills that are beneficial for employment careers in the long run.

Protocol: the complexity of informal caregiving for Alzheimer's disease and related dementias in rural South Africa.

With aging, many people develop Alzheimer's disease or related dementias (ADRD) as well as chronic physical health problems. The consequent care needs can be complicated, with heavy demands on families, households and communities, especially in resource-constrained settings with limited formal care services. However, research on ADRD caregiving is largely limited to primary caregivers and high-income countries. Our objectives are to analyse in a rural setting in South Africa: (1) how extended households provide care to people with ADRD; and (2) how the health and wellbeing of all caregivers are affected by care roles. The study will take place at the Agincourt health and socio-demographic surveillance system site of the MRC/Wits Rural Public Health and Health Transitions Research Unit in Mpumalanga Province, northeast South Africa. We will recruit 100 index individuals predicted to currently have ADRD or cognitive impairment using data from a recent dementia survey. Quantitative surveys will be conducted with each index person's nominated primary caregiver, all other household members aged over 12, and caregiving non-resident kin and non-kin to determine how care and health are patterned across household networks. Qualitative data will be generated through participant observation and in-depth interviews with caregivers, select community health workers and key informants. Combining epidemiological, demographic and anthropological methods, we will build a rich picture of households of people with ADRD, focused on caregiving demands and capacity, and of caregiving's effects on health. Our goal is to identify ways to mitigate the negative impacts of long-term informal caregiving for ADRD when formal supports are largely absent. We expect our findings to inform the development of locally relevant and community-oriented interventions to improve the health of caregivers and recipients, with implications for other resource-constrained settings in both higher- and lower-income countries.

Effect of disability severity on home-based care quality among families with Uygur and Kazakh disabled older adults in far western rural China: A cross-sectional study.

To explore how family functioning and family resilience mediate the relationship between disability severity and quality of home-based care among families with disabled older adults. A cross-sectional survey was conducted with 431 families with Uygur and Kazakh disabled older adults in Xinjiang, China, in 2020. The data were collected using the Katz Activity of Daily Living Scale; Mini-Mental State Examination; Family Adaptation, Partnership, Growth, Affection and Resolve Index Scale; Family Resilience Assessment Scale; and Family Caregiving Consequences Inventory Scale. All mediation effects were estimated in SPSS26.0. Disability severity, family functioning and family resilience were all significantly correlated with home-based care quality. Disability severity had a 46.16% direct effect on home-based care quality and a 53.84% indirect effect on home-based care quality independently and in series through family functioning and family resilience. Disability severity directly affected home-based care quality and had an indirect influence via family functioning and family resilience. Multidisciplinary care teams should focus on families with disabled older adults and help them improve family functioning and family resilience by implementing targeted interventions, so as to improve home-based care quality.

Assessing the impact of caregiving on informal caregivers of adults with a mental disorder in OECD countries: A systematic literature review of concepts and their respective questionnaires.

We conducted a systematic literature review to identify and review the concepts and questionnaires used to assess the impact of caregiving on caregivers for adults with a mental disorder. With our study, we aimed to provide an overview and categorize the conceptualization and operationalization of the impact of caregiving, with special attention for the complexity and multi-conceptualization of concepts. Embase, Medline, PsycInfo, Web of Science Core Collection, Cochrane Central Register of Trials, Cinahl Plus, Econlit and Google Scholar were systematically searched for articles from 1 January 2004 to 31 December 2019. Eligible articles were peer-reviewed studies that assessed the impact of caregiving for informal caregivers of adults with a reported mental disorder by means of a questionnaire. The complete study protocol can be found on PROSPERO (CRD42020157300). A total of 144 questionnaires were identified that assessed the impact of caregiving. Based on similarities in meaning, concepts were classified into 15 concept clusters. The most frequently assessed concept clusters were mental health, caregiving burden, other caregiving consequences, family impact, and overall health-related outcomes. The use of concept clusters differed per diagnosis group, with diagnoses, such as schizophrenia, using a wide range of caregiving impact concepts and other diagnoses, such as personality disorders, only using a limited range of concepts. This is the first study that identified and reviewed the concepts and questionnaires that are used to assess the impact of caregiving. Caregiving is researched from a broad array of perspectives, with the identification of a variety of concepts and dimensions and use of non-specific questionnaires. Despite increasing interest in this field of research, a high degree of variability remains abundant with limited consensus. This can partially be accredited to differences in the naming of concepts. Ultimately, this review can serve as a reference to researchers who wish to assess the impact of caregiving and require further insight into concepts and their respective questionnaires.

Exploring healthcare professionals' experiences with informal family cancer caregiving.

Caring for a family member with cancer is often associated with significant cognitive, emotional, and physical demands. Although considerable research has explored informal cancer caregiver role burden, research has seldom focused on the experiences of individuals who hold the dual role of informal caregiver and healthcare professional. This qualitative study begins to explore this dual role experience. Participants (N = 12) who had at least 1 year of prior professional experience and cared for a family member with cancer were recruited conveniently from a large university-affiliated hospital in Montreal, Quebec. Individual face-to-face semi-structured interviews were conducted. Using thematic analysis, key themes were developed from verbatim transcripts: (1) salient dual role advantages, (2) significant challenges related to this role, (3) changes in professional practice as a consequence of informal caregiving, and (4) important palliative and end-of-life care access issues. Whereas professional knowledge helped advocate on behalf of patients, the dual role often came with over-solicitation from others, enhanced sense of responsibility, increased burden, and significant distress. Further study of critical ramifications linked to jointly enacting informal and professional caregiving across various health contexts should continue to inform supportive care strategies for this understudied yet increasingly prevalent segment of the caregiver population.

Family caregivers’ experiences of providing care for hospitalized older people with a tracheostomy: a phenomenological study

Purpose The purpose of this paper is to describe family caregivers’ experiences of providing care for older people with a tracheostomy during hospitalization. Design/methodology/approach A descriptive phenomenological approach was used in this study. A total of 40 family caregivers were interviewed face-to-face in medical-surgical wards. Data was analyzed using Giorgi’s phenomenological method. Findings Family caregivers described meanings of providing care, learning how to provide care, caring activities, impacts of caregiving, support needs and qualities of being a caregiver. Meanings included filial responsibility, spousal attachment and end of life care. Caring activities were varied. Impacts experienced were reported as physical, psychological, social and financial. Caregivers expressed the need for information from the nursing team and assistance from their relatives. Positive caregiver qualities that were described included loving to provide care for older people and confidence and sincerity in caregiving. Practical implications Although caring for older people with a tracheostomy was difficult and came with challenging impacts, family caregivers were willing to support their loved ones due to feelings of family responsibility. Originality/value The paper addresses family participation in providing care for people with a tracheostomy. They experience physical, psychological, social and financial consequences of caregiving. Therefore, health-care professionals should support family caregivers with education, training and awareness of supports and resources for dealing with problematic impacts and other expressed needs.

Family caregivers of people with dementia in the context of the sociocultural stress and coping model: An examination of gender differences

The study assessed gender differences in the associations between familism dimensions, dysfunctional thoughts, and resource and outcome variables in 190 Spanish dementia family caregivers. A theoretical model was tested through path analysis, obtaining an excellent fit of the model to the data. Higher scores in the familial obligations dimension were associated with lower self-efficacy for self-care and obtaining respite and leisure frequency, and higher anxious and depressive feelings, in female caregivers only. Significant between-gender differences were obtained, suggesting that female caregivers holding strong familistic values are more vulnerable to the negative consequences of caregiving compared to male caregivers.

The socioemotional challenges and consequences for caregivers of Aboriginal and Torres Strait Islander children with otitis media: A qualitative study

IntroductionLiving with ear disease can have extensive impacts on physical, emotional and social well‐being. This study explored otitis media (OM) and its management from the perspective of caregivers of Aboriginal and Torres Strait Islander children.MethodsSemi‐structured interviews were conducted from 2015 to 2020 with caregivers of Aboriginal and Torres Strait Islander children with OM. Thematic analysis of transcripts was undertaken using a constructivist grounded theory approach through the leadership and the cultural lens of an Aboriginal community‐based researcher.ResultsCaregivers described OM as having profound impacts on their child's physical, developmental, and emotional well‐being, with long waits for specialist treatment contributing to extra strain on families. Children's well‐being suffered when OM was mistaken for poor behaviour and children were punished, with caregivers subsequently experiencing strong feelings of guilt. Concerns were conveyed about the social implications of having a sick child. The variable nature of OM symptoms meant that caregivers had to monitor closely for sequelae and advocate for appropriate treatment. Success in navigating the diagnosis and treatment of OM can be strongly impacted by the relationship between caregivers and health professionals and the perceived access to respectful, collaborative and informative healthcare.ConclusionOM may have substantial social and emotional consequences for children and their caregivers. A holistic understanding of the way in which OM impacts multiple facets of health and well‐being, as well as recognition of challenges in accessing proper care and treatment, will aid families managing OM and its sequelae.Patient or Public ContributionGoverning boards, managers, staff and community members from five Australian Aboriginal Medical Services were involved in the approval, management and conduct of this study and the wider clinical trials. The caregivers of Aboriginal and Torres Strait Islander patients at these services informed the interview study and guided its purpose.

Dual Caregivers of Persons living with Dementia: The Added Stress of COVID-19 Pandemic.

Serving in dual caregiving roles presents challenges and has consequences for caregivers’ physical and mental health. Forty-six dual caregivers in rural southwest Virginia participated in one semi-structured telephone interview pre-pandemic. Of these caregivers, nine dual caregivers of multiple older adults (MOA) and six caregivers of multiple generations (MG) participated in two telephone interviews during the COVID-19 pandemic. Pre-pandemic health, stress, and support data were used to compare dual caregivers of MOA and MG; differences were minimal. Responses to interviews conducted during the pandemic highlighted the effects of social restrictions on MOA and MG caregivers, revealing five themes (1) Increased isolation, (2) Increased need for vigilance, (3) Negative impact on mental health, (4) Tendency to “do it all,” and (5) Increased informal help. MOA and MG caregivers differed on managing care responsibilities and ensuring the health of care recipients. In general, dual caregivers experienced decreased mental health, increased social isolation, and increased caregiving responsibilities. Antecedents of the pandemic experiences differentiated MOA and MG caregiver. Findings suggest that programs and services should target dual caregivers’ unique needs.

Consequences of Inadequate Caregiving for Children's Attachment, Neurobiological Development, and Adaptive Functioning.

Given that human infants are almost fully reliant on caregivers for survival, the presence of parents who provide sensitive, responsive care support infants and young children in developing the foundation for optimal biological functioning. Conversely, when parents are unavailable or insensitive, there are consequences for infants' and children's attachment and neurobiological development. In this paper, we describe effects of inadequate parenting on children's neurobiological and behavioral development, with a focus on developing capacities for executive functioning, emotion regulation, and other important cognitive-affective processes. Most prior research has examined correlational associations among these constructs. Given that interventions tested through randomized clinical trials allow for causal inferences, we review longitudinal intervention effects on children's biobehavioral and cognitive-affective outcomes. In particular, we provide an overview of the Bucharest Early Intervention Project, a study in which children were randomized to continue in orphanage care (typically the most extreme condition of privation) or were placed into the homes of trained, supported foster parents. We also discuss findings regarding Attachment and Biobehavioral Catch-up, an intervention enhancing sensitivity among high-risk parents. We conclude by suggesting future directions for research in this area.

POSB385 Use of Healthcare Resources and Cost Associated Related to Juvenile Idiopathic Arthritis in Spain: The Itaca-or Real-World Study

Juvenile idiopathic arthritis (JIA) is a chronic disease that represent a considerable burden for healthcare systems. There is a lack of information regarding the JIA related costs in Spain and its consequences for patients and caregivers. The aim of the present study was to assess direct healthcare, indirect resources utilization and associated costs from moderate-severe JIA patients in real clinical practice in Spain.

Multiple sclerosis caregiving: A systematic scoping review to map current state of knowledge

Unpaid caregivers, typically family and friends, provide significant amounts of support to people with multiple sclerosis (MS). Understanding their experiences, needs and challenges is necessary to ensure that caregivers receive the support that they require to continue in their role. Our aim was to map the current state of knowledge about unpaid caregivers of people with MS and identify gaps in knowledge to guide future research and practice. We used scoping review methodology with three major health-related databases (MEDLINE, CINAHL, APA Psychinfo), searching in September 2019, April and October 2020 and October 2021. We selected peer-reviewed scientific articles reporting on primary studies of unpaid caregivers of people with MS, regardless of topic or research design. We extracted information on study aim, participant characteristics, measures used and key findings to generate major themes and identify knowledge gaps. We identified 108 published studies between 1992 and 2021 that met our criteria. Studies of spousal caregivers were most common. Studies focused primarily on measurement of caregiver burden or other negative consequences of caregiving. Thirteen studies addressed positive consequences of caregiving. Sixteen studies reported actual tasks performed by caregivers and seven reported outcomes of caregiver support interventions. Attention to diversity issues that may influence caregiving experiences and outcomes was rare. Overall, knowledge of MS caregiving is limited, particularly with respect to tasks performed by caregivers that may contribute to negative outcomes, diversity issues and effective approaches to remediate caregiver burden. Without this knowledge, finding ways to better support MS caregivers will be difficult.

Gender Differences in the Link Between Informal Caregiving and Subjective Well-Being

Despite existing evidence on the negative association between informal caregiving and caregiver’s well-being, three important knowledge gaps remain. First, the link warrants further scrutiny due to the possibility of individual heterogeneity. Second, less is known about how informal caregiving is related to caregiver’s well-being. Third, there is little consensus in the literature regarding whether caregiver’s gender matters. This study fills these gaps in the literature. Using seven waves of a large-scale, nationally representative longitudinal study of older adults in Korea between 2006 and 2018, this study employed generalized estimating equations models with a lagged dependent variable as well as fixed effects models. Findings from both models revealed that informal caregiving is negatively associated with subjective well-being, and this association is largely driven by female caregivers. To explore potential mechanisms undergirding this association, we examined the mediating roles of a number of health behaviors. We found that engaging in informal caregiving is associated with a reduction in regular exercise. Results from mediation analyses, however, suggested that regular exercise explains only a moderate amount of the observed association (12% for health-related life satisfaction and 8% for self-rated health). While informal caregiving is obviously a rewarding role, it poses a serious threat to caregiver’s well-being. Findings of this study on gender differences in the well-being consequences of informal caregiving lend support to taking a gender-conscious approach in programs aiming to improve the well-being of informal caregivers.

Caregiving During COVID-19: A Multi-State Qualitative Study of Family Caregiver Experiences and Decision Making

COVID-19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic. Using purposive sampling, 63 family caregivers across eight states participated in open-ended qualitative interviews (2019-2020), until thematic saturation was reached. Questions broadly examined caregivers’ experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long-term services and supports expenditures. Family caregivers experienced significant concern about COVID-19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers also displayed flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care tools such telemedicine, no-contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload. Given the persistent challenges posed by COVID-19, long-term service organizations have an opportunity to enhance their policies to meet the needs of caregivers and those they care for. There is a need to expand telemedicine and other remote healthcare tools, while adapting these technologies to the needs of families. Also, procedures are needed for safe pathways to utilize HCBS and nursing care during a pandemic including communication supports, sufficient PPE, increased staffing, and utilization of evidence-based protocols.