Special Issue "Caregivers Supporting the Health and Quality of Life of Aging Adults: Needs and Opportunities at the Personal, Community, and Societal Levels"

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Aging".

Deadline for manuscript submissions: 31 January 2022.

Special Issue Editors

Dr. Erin DeFries Bouldin
E-Mail Website
Guest Editor
Department of Health & Exercise Science, Appalachian State University, Boone, NC 28608, USA
Interests: caregiving; aging; disability; epidemiology; public health surveillance; rural health
Prof. Mary Jo Pugh
E-Mail Website
Guest Editor
1. Department of Internal Medicine, University of Utah, Salt Lake City, UT 84132, USA
2. Decision-Enhancement and Analytic Sciences Center of Innovation, VA Salt Lake City, Salt Lake City, UT 84148, USA
Interests: veteran and deployment health; military exposures; brain injury; epilepsy; complex cormorbidity; family caregiving; resilience; epidemiology

Special Issue Information

Dear Colleagues,

Around the world, family members and friends provide a vital source of care and support for people as they age. Whether because of health conditions, barriers to social participation, injuries, or other reasons, older adults often experience declines in function, and these impairments can restrict their activities and participation, ultimately resulting in poor health and needs for assistance. Children and younger adults also sometimes need support and assistance with daily life, often for the same reasons as older adults: health conditions, disabilities, or injuries. Informal carers or caregivers can help their care recipients manage health conditions, receive appropriate health care, provide companionship, complete daily activities, and engage with their communities. Through these activities, caregivers improve the health and quality of life of their care recipients, and can prevent or delay institutionalization.

Caregivers’ own health and wellbeing is important to consider alongside that of their care recipients. Caregivers can gain benefits from their role, including a sense of purpose, a stronger connection with their care recipient, and potentially more opportunity to be physically active. However, caregivers may also experience emotional and physical strain because of their caregiving duties, and they may lose income or social connections if they give up work or community activities because of their caregiving responsibilities. 

The aims of this Special Issue are to describe unique health and quality of life experiences of caregivers and to share evidence about promising or proven interventions that enable informal caregivers to effectively support their care recipients while maintaining their own health and quality of life. From a public health perspective, support for caregivers could come at the individual level through training, at the community level through services and supports, or at the societal level through policy and funding changes. We consider health to be multi-dimensional, consistent with the World Health Organization’s definition and conceptualization, and therefore invite submissions that focus on physical, mental, and social health, which may also include a specific emphasis on emotional, spiritual, or another domain of health. We also consider quality of life to be a valid outcome measure, and welcome submissions that focus on global or domain-specific quality of life. Finally, we use the World Health Organization’s International Classification of Functioning, Disability, and Health to conceptualize disability and recognize the importance of the environment—the caregiver being the most salient part of that environment for this Special Issue—in determining whether or not an individual experiences disability.

We invite papers from a broad range of perspectives, including but not limited to public health practitioners, policy and legal experts, health care providers, community-based service providers, government agencies, implementation scientists, demographers, social geographers, and health economists. We encourage submissions that use quantitative, qualitative, or mixed-methods approaches. We will also consider papers that present a conceptual framework or address methodological or measurement issues related to caregiving. We welcome submissions that focus on people aging with disabilities, as well as those including people who developed a disability later in life. Papers that are purely descriptive in nature will be considered, but should provide information about a poorly studied population of caregivers or should provide new population-level estimates.

Topics may include:

  • Factors associated with health and quality of life among caregivers, including among specific types of caregivers or caregivers with particular demographic characteristics or social determinants of health.
  • Cultural or place-based needs of caregivers and care recipients and effective or promising strategies for adapting programs to meet these needs.
  • Intervention programs that improve the health of care recipients and/or caregivers.
  • Strategies for improving access to formal or informal supports and services for caregivers and care recipients that are known to increase health and/or quality of life.
  • Policies that effectively support caregivers and/or care recipients.
  • Strategies for increasing or maintaining the availability of informal caregivers as populations and/or social structures change.
  • Electronic or mobile health services that are acceptable to caregivers and care recipients and improve their health.
  • Measurement issues related to evaluating changes in caregiver and/or care recipient health or to the need for or use of formal or informal support services.

We will consider papers related to a topic not explicitly stated here. Please feel free to contact the Guest Editors for a pre-review of your abstract to determine whether it fits within the scope of this Special Issue.

Dr. Erin DeFries Bouldin
Prof. Mary Jo Pugh
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All papers will be peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access semimonthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • health and quality of life among caregivers
  • support for caregivers
  • policies that effectively support caregivers
  • aging population health

Published Papers (8 papers)

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Research

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Article
“I Am the Home Care Agency”: The Dementia Family Caregiver Experience Managing Paid Care in the Home
Int. J. Environ. Res. Public Health 2022, 19(3), 1311; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph19031311 - 25 Jan 2022
Viewed by 210
Abstract
As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how [...] Read more.
As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews (n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia (n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers. Full article
Article
Evaluating the Appropriateness and Feasibility of the Care Partner Hospital Assessment Tool (CHAT)
Int. J. Environ. Res. Public Health 2021, 18(24), 13355; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph182413355 - 18 Dec 2021
Viewed by 476
Abstract
Hospital practitioners rely on care partners of older adults to provide complex care without identifying and addressing their needs. The Care Partner Hospital Assessment Tool (CHAT) was developed to identify the education skill training needs of care partners of hospitalized older adults. This [...] Read more.
Hospital practitioners rely on care partners of older adults to provide complex care without identifying and addressing their needs. The Care Partner Hospital Assessment Tool (CHAT) was developed to identify the education skill training needs of care partners of hospitalized older adults. This two-phased mixed-method study evaluated the appropriateness and feasibility of the CHAT. The phase 1 quantitative survey with caregiving experts indicated 70–100% agreement for the length and helpfulness of the CHAT (n = 23). These results were supported by phase 2 qualitative interviews with hospital administrators and practitioners, which revealed the following themes: (1) intuitive and clear design worth sustaining and (2) concerns and proposed solutions for implementation. Findings suggest the CHAT is an appropriate and feasible tool for hospital practitioners to tailor their education and skills training to address care partners’ needs. Identifying care partners’ needs is an important step in ensuring they are prepared to complete their caregiving responsibilities. Full article
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Article
The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers’ Knowledge, Burden, and Quality of Life
Int. J. Environ. Res. Public Health 2021, 18(24), 13231; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph182413231 - 15 Dec 2021
Viewed by 455
Abstract
This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. The participants comprised 60 caregivers (30 participants in each group) selected via purposive [...] Read more.
This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention’s effectiveness, repeat measure ANOVA and Mann–Whitney, Friedman, and Dunn’s tests were performed. At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Our findings show that this program had a positive effect on the caregivers’ knowledge and quality of life. However, the program did not affect the caregivers’ burden. Full article
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Article
Choosing and Managing Aged Care Services from Afar: What Matters to Australian Long-Distance Care Givers
Int. J. Environ. Res. Public Health 2021, 18(24), 13000; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph182413000 - 09 Dec 2021
Viewed by 401
Abstract
This research aims to identify the factors that influence caregivers’ decisions about the aged care providers they select for their elder relatives when caring from a distance and what they value once they have engaged a service. Adult long-distance carers for older relatives [...] Read more.
This research aims to identify the factors that influence caregivers’ decisions about the aged care providers they select for their elder relatives when caring from a distance and what they value once they have engaged a service. Adult long-distance carers for older relatives living within Australia were purposively sampled and they participated in audio-recorded interviews. A thematic analysis was employed to investigate the data. A sample of 13 participants enabled data saturation with no new major themes identified in the final three interviews. Participants were 50 to 65 years (Mean = 59.8) and mostly (77%) female. Four themes emerged relating to selection of care providers: (1) availability of care, (2) financial arrangements, (3) proximity and location, and (4) reputation of care provider. Five themes detailed valued qualities of care: (1) vigilant monitoring and responsivity, (2) communication with family, (3) flexibility and proactiveness of care, (4) staffing, and (5) access to appropriate and holistic care to maintain wellbeing. Long-distance caregivers face barriers in selecting and managing aged care services from afar within a complex Australian aged care system. They strongly value regular, proactive communication about the wellbeing of their relatives and may be particular beneficiaries of communication and assistive monitoring technologies. Full article
Article
Association between Having Cancer and Psychological Distress among Family Caregivers Using Three Years of a Nationwide Survey Data in Japan
Int. J. Environ. Res. Public Health 2021, 18(19), 10479; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph181910479 - 06 Oct 2021
Viewed by 658
Abstract
We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers’ psychological distress in Japan. We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. [...] Read more.
We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers’ psychological distress in Japan. We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. The participants were 5258 family caregivers aged ≥40 years, caring for only one family member whose information in the dataset was available for all the covariates included in the model. The family caregivers’ psychological distress was defined by the Kessler Psychological Distress Scale (K6) score (K6 ≥ 5). We conducted a Poisson regression analysis to examine the association between having cancer and family caregivers’ distress. The sample of family caregivers consisted of mostly females (69.3%) and people within the 40–64 years age group (51.8%). As a result, family caregivers with cancer increased across the survey periods; a higher number of participants were unemployed. When adjusted for covariates, including the presence of other diseases, having cancer was significantly associated with distress (risk ratio 1.33, 95% confidence interval 1.05–1.69) among family caregivers. Family caregivers with cancer are expected to increase in the future; it is important to provide them with more support in managing both their treatment and caregiving to cope with their distress. Full article
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Article
Baby Boomers Who Provide Informal Care for People Living with Dementia in the Community
Int. J. Environ. Res. Public Health 2021, 18(18), 9694; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18189694 - 15 Sep 2021
Viewed by 781
Abstract
One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health [...] Read more.
One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Although no differences in caregiver’s physical and mental health by care recipient’s dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers’ health and well-being. Full article
Article
It’s Like Juggling, Constantly Trying to Keep All Balls in the Air”: A Qualitative Study of the Support Needs of Working Caregivers Taking Care of Older Adults
Int. J. Environ. Res. Public Health 2021, 18(11), 5701; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18115701 - 26 May 2021
Viewed by 942
Abstract
Many informal caregivers of older adults combine their caregiving tasks with a paid job. Adequate support is important to enable them to combine paid work with caregiving, while maintaining their health and wellbeing. To date, however, knowledge about working caregivers’ support needs is [...] Read more.
Many informal caregivers of older adults combine their caregiving tasks with a paid job. Adequate support is important to enable them to combine paid work with caregiving, while maintaining their health and wellbeing. To date, however, knowledge about working caregivers’ support needs is fragmented. This study, therefore, aimed to obtain more insight into the support needs of working caregivers of older adults. We conducted six online semi-structured focus group interviews with in total 25 working caregivers of older adults living at home. Data were complemented with information from seven working caregivers participating in the study’s advisory board. Data were analyzed using inductive and deductive thematic analysis. Six themes related to working caregivers’ needs were identified: (1) Recognition of caregivers, including the challenges they face; (2) Attention for caregivers’ health, wellbeing and ability to cope; (3) Opportunities to share care responsibilities; (4) Help with finding and arranging care and support; (5) Understanding and support from the work environment; (6) Technological support tailored to the needs and capacities of caregivers and older adults. To address these needs, working caregivers suggested several options in multiple domains of life (i.e., work, home and social life, care environment, personal health and wellbeing). To successfully support them, a multi-faceted effort, involving actors from multiple settings, is needed. Full article
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Brief Report
Employment of Young Adult Cancer Caregivers, Other Disease Caregivers, and Non-Caregiving Adults
Int. J. Environ. Res. Public Health 2021, 18(14), 7452; https://0-doi-org.brum.beds.ac.uk/10.3390/ijerph18147452 - 13 Jul 2021
Viewed by 648
Abstract
Young adults are increasingly taking on caregiving roles in the United States, and cancer caregivers often experience a greater burden than other caregivers. An unexpected caregiving role may disrupt caregiver employment, leading to lost earning potential and workforce re-entry challenges. We examined caregiving [...] Read more.
Young adults are increasingly taking on caregiving roles in the United States, and cancer caregivers often experience a greater burden than other caregivers. An unexpected caregiving role may disrupt caregiver employment, leading to lost earning potential and workforce re-entry challenges. We examined caregiving employment among young adult caregivers (i.e., family or friends) using the 2015 Behavioral Risk Factor Surveillance System (BRFSS), which included caregiving, employment, and sociodemographic variables. Respondents’ ages varied between 18 and 39, and they were categorized as non-caregivers (n = 16,009), other caregivers (n = 3512), and cancer caregivers (n = 325). Current employment was compared using Poisson regressions to estimate adjusted incidence rate ratios (aIRR) and 95% confidence intervals (95% CI), including gender-stratified models. We estimated employment by cancer caregiving intensity (low, moderate, high). Cancer caregivers at all other income levels were more likely to be employed than those earning below USD 20,000 (aIRR ranged: 1.88–2.10, all p< 0.015). Female cancer caregivers who were 25–29 (aIRR = 0.71, 95% CI = 0.51–1.00) and single (aIRR = 0.70, 95% CI = 0.52–0.95) were less likely to be employed than their counterparts. College-educated males were 19% less likely to be employed than high school-educated caregivers (95% CI = 0.68–0.98). Evaluating caregiver employment goals and personal financial situations may help identify those at risk for employment detriments, especially among females, those with lower educational attainment, and those earning below USD 20,000 annually. Full article
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