Caregiving in the shadows: National analysis of health outcomes and intensity and duration of care among those who care for people with mental illness and for people with developmental disabilities

Barnhart, Wesley R.; Ellsworth, David; Robinson, Ann C.; Myers, John C.; Andridge, Rebecca; Havercamp, Susan M.

doi:10.1016/j.dhjo.2019.100837

Cited by 10 publications

(7 citation statements)

References 27 publications

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“…Not surprisingly, this study also found that individuals who continuously engaged in caregiving tend to have even lower levels of SRH than those who started caregiving. This finding is consistent with evidence from previous studies that relied on cross-sectional data [ 8 , 47 ]. The FE estimates suggest that the negative association between informal caregiving and subjective health is not confounded by unobserved, time-invariant characteristics.…”

Section: Discussionsupporting

confidence: 93%

Gender differences in the relationship between informal caregiving and subjective health: the mediating role of health promoting behaviors

Kim

Woo

2022

BMC Public Health

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Background In most of developed societies, the prevalence of informal care is on the rise due to rapid population ageing. This study investigates longitudinal associations between informal caregiving and health among caregivers and potential gender differences in this relationship. Moreover, drawing on the Health Promotion Model, this study examines the mediating role of health promoting behaviors in the link between informal caregiving and caregiver’s health. Methods Seven waves of a large-scale (N = 9,608), a nationally representative longitudinal study of middle- and old-aged adults in Korea between 2006 and 2018, were used. To address the possibility of omitted variable bias, this study employed ordinary least squares models with lagged dependent variables (OLS-LDV) as well as fixed effects (FE) models. Univariate Sobel-Goodman mediation tests were used. Results Findings from OLS-LDV models showed that transition into informal caregiving is negatively associated with health satisfaction and self-rated health. FE results also suggest that our results are robust to controlling for unobserved heterogeneity. In the model where informal caregiving is interacted with gender, we found that these associations were largely driven by women caregivers. Results from Sobel-Goodman tests revealed that a decrease in regular exercise partially explains the observed association between informal caregiving and subjective health outcomes (11% for health satisfaction and 8% for self-rated health). Conclusions Although informal caregiving can be a rewarding role, it poses a threat to caregiver’s subjective health. Findings of this hold important implications and provide evidence in support of a gender-conscious approach to improve the health and well-being of informal caregivers.

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Section: Discussionsupporting

confidence: 93%

Gender differences in the relationship between informal caregiving and subjective health: the mediating role of health promoting behaviors

Kim

Woo

2022

BMC Public Health

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“…Our study nds that compared with non-caregivers, caregivers experienced signi cantly worse levels of self-rated health, BMI, and psychological distress. This nding resonates with what reported in previous studies [38,43,44], and further highlights the need for intervention studies that could acknowledge and address caregiver burden. As approximately 21.3% of U.S. adults or 53.0 million Americans are informal caregivers who often do not have the adequate knowledge or skills needed to take care of the patients [18], whether or not successful interventions can deliver much-needed health solutions to these caregivers may impact not only the health of patients and caregivers, but also the health of the society [45,46].…”

Section: Discussionsupporting

confidence: 88%

Understanding the Impact of Patients’ Disease Types on Caregiving Time and Caregiver Burden: An Analysis of the Health Information National Trends Survey

Zhou

Gelfond

2020

Preprint

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Background: Patients with different medical conditions often have distinctive caregiving needs that could result in varying levels of caregiver burden. However, despite empirical advances in this area, little is known about how patients’ disease types interact with caregiving time and caregiver burden. To bridge this gap, we examined the impact of patients’ disease types on caregiving time and burden. Methods: Data were analyzed from the 2018 Health Information National Trends Survey 5 Cycle 2. Only participants self-identified as caregivers were included in the final analysis. Data on patients’ disease types, caregiving time (i.e., caregiving duration and caregiving hours spent per week), and caregiver burden (i.e., caregivers’ self-rated health, body mass index, and psychological distress) were examined using logistic regression analysis.Results: Patients’ disease types impacted caregiving time and burden. Caregivers of patients with neurological disease spent the greatest amount of time. For caregiver burden, caregivers of patients with cancer or aging related disease experienced worst self-rated health, caregivers of patients with orthopedic disease have the greatest likelihood to be overweight or obese, while cancer caregivers experienced greatest levels of psychological distress. Conclusions: Patients’ disease types had highly varied effects on caregiving time and burden. This study underscores the need for healthcare researchers to adopt a nuanced approach in acknowledging and addressing the burden of care experienced by caregivers, such as tailoring interventions based on both patients and caregivers’ characteristics and preferences.

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“…Informal caregivers attend medical visits with and advocate for the patient, keeping track of physician instructions and medication changes, providing emotional support, and assisting with activities such as medication administration, wound care, transportation, meals, and finances [3]. Over half of informal caregivers have chronic health conditions of their own [4,5], and their health status can be worsened by the stress and demands of caregiving [6][7][8][9][10][11][12][13][14][15][16], which can then adversely affect their patient's well-being [17][18][19][20]. For instance, overburdened informal caregivers seldom seek mental health care to deal with emotional distress [21][22][23], despite informal caregivers of patients with advanced cancer reporting more depression than the patients themselves [24].…”

Section: Introductionmentioning

confidence: 99%

A novel smartphone application for the informal caregivers of cancer patients: Usability study

Oakley-Girvan

Yunis

Fonda³

et al. 2023

PLOS Digit Health

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Informal caregivers are a critical source of support for cancer patients. However, their perspectives are not routinely collected, despite health impacts related to the burden of caregiving. We created the TOGETHERCare smartphone application (app) to collect observer-reported outcomes regarding the cancer patient’s health and caregiver’s perceptions of their own mental and physical health, and to provide tips and resources for self-care and patient care. We enrolled 54 caregivers between October 2020 and March 2021 from Kaiser Permanente Northern California (KPNC), an integrated healthcare system. Fifty caregivers used the app for approximately 28 days. Usability and acceptability were assessed using questions from the Mobile App Rating Scale (MARS), the System Usability Scale (SUS), the Net Promoter Score (NPS), and semi-structured interviews. The caregivers’ mean age was 54.4 years, 38% were female and 36% were non-White. The SUS total mean score was 83.4 (SD = 14.2), for a percentile rank of 90–95 (“excellent”). Median MARS responses to the functionality questions were also high. The NPS score of 30 at the end of the study indicated that most caregivers would recommend the app. Themes from semi-structured interviews were consistent across the study period and indicated that the app was easy to use and helpful. Caregivers indicated a need for feedback from the app, suggested some changes to the wording of questions, the app’s visuals, and timing of notifications. This study demonstrated that caregivers are willing to complete frequent surveys about themselves and their patients. The app is unique because it provides a remote method to collect caregivers’ observations about the patient that may be useful for clinical care. To our knowledge, TOGETHERCare is the first mobile app developed specifically to capture adult cancer patient symptoms from the informal caregiver’s perspective. Future research will examine whether use of this app can help improve patient outcomes.

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Caregiving in the shadows: National analysis of health outcomes and intensity and duration of care among those who care for people with mental illness and for people with developmental disabilities

Cited by 10 publications

References 27 publications

Gender differences in the relationship between informal caregiving and subjective health: the mediating role of health promoting behaviors

Gender differences in the relationship between informal caregiving and subjective health: the mediating role of health promoting behaviors

Understanding the Impact of Patients’ Disease Types on Caregiving Time and Caregiver Burden: An Analysis of the Health Information National Trends Survey

A novel smartphone application for the informal caregivers of cancer patients: Usability study

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