Factors Influencing Caregivers’ Use of Respite Care Services: Secondary Analysis of the National Study of Caregiving

Abstract

This study examines when and why unpaid caregivers use respite services. We conducted a secondary analysis of the 2017 National Study of Caregiving (NSOC) Wave III, a U.S. nationally representative sample comprising 2652 unpaid caregivers. We found that unpaid caregivers reporting financial, physical, and emotional difficulties in caregiving were more likely to use respite care services than those not reporting these challenges. White, non-Hispanic caregivers reporting that they received support from their social networks (families/friends) were more likely to use respite care services than non-White and/or Hispanic caregivers receiving such support. Non-White and/or Hispanic caregivers who belonged to or attended support groups were more likely to use respite care support than those without social group affiliation. Respite care is underutilized in the U.S. despite its value and efficacy in supporting caregivers’ mental and physical well-being. Policies are necessary to increase availability and access to respite services for diverse unpaid caregivers.

Keywords

respite care caregivers mental health wellbeing

What this paper adds

• This analysis provides insights into the association between personal and community-level supports, and unpaid caregivers’ use of respite care.

• This study contributes significantly to the current understanding of unpaid caregivers’ utilization of respite care.

• This study fills a gap in the literature by using multivariate methods to provide insights into respite services in diverse settings.

Application of study findings

• This study identifies factors influencing unpaid caregivers’ use of respite care services.

• The analysis contributes insights into resources that can be leveraged to identify caregivers who may benefit from respite services and opportunities to connect caregivers with these services.

• The study can enhance caregiver well-being and care quality for recipients.

Introduction

Over one in five Americans will be 65 or older by 2030, with the population of those over 65 predicted to grow from 54 million in 2019 to 72.8 million in 2030 (Schulz & Eden, 2016; U.S. Census Bureau, 2022). Sixty-six percent of these older adults need some form of regular caregiving assistance to maintain their physical autonomy and well-being, often provided by unpaid caregivers (Schulz & Eden, 2016). Unpaid caregivers (hereon, caregivers) provide support to relatives, partners, friends, or neighbors who need help with daily activities with no financial compensation. They may live with or separately from the care recipient (Ringer et al., 2017) and support Activities of Daily Living (ADL; e.g., dressing and bathing) and Instrumental Activities of Daily Living (IADL; e.g., shopping and transportation), healthcare routines, and significant clinical tasks (e.g., communicating with doctors and medication management) for an average of 20 hours per week (Wolff et al., 2016). Given current healthcare system capacity challenges such as workforce shortages, these caregivers are critical to the fabric of long-term support for older adults (Bodas et al., 2021).

Although many caregivers view caregiving as fulfilling, it can also precipitate constant and chronic strain, anxiety, and burnout, resulting from physical and mental demands and challenges that quickly exceed the mental and emotional well-being capacities of caregivers (Roth et al., 2015). Over half of caregivers, especially those supporting a relative with physical or cognitive impairments, experience high-to-moderate stress and exhaustion with greater amplification of these stressors among female caregivers (Sharma et al., 2016; Wajnberg et al., 2016). Without consistent opportunities for rest, caregivers may experience loneliness, adverse mental health outcomes, and even unanticipated acute healthcare needs (e.g., hospitalization) (Peavy et al., 2022). Caregiving demands might also interfere with caregivers’ employment and hobbies, potentially even diminishing their capacity to continue caregiving (Cook et al., 2018). Respite services present a promising approach to fostering caregivers’ well-being and facilitating their capacity to continue caregiving by enabling them to refuel and prioritize their own mental and physical health (Utz, 2022; Victor et al., 2021).

Respite Services to Support Caregivers

Respite care provides caregivers temporary relief from caregiving responsibilities by providing in-home, inpatient care (e.g., hospice center and residential facility) or adult daycare overnight or over multiple days (Vandepitte et al., 2016). Considerable evidence points to the efficacy of respite services in alleviating the physical, mental, and emotional impact of caregiving responsibilities and demands, thereby improving caregiver well-being (Zarit et al., 2011; Zebrak & Campione, 2021). Respite services may also support caregivers’ financial—and subsequently, psychological—wellbeing, by offer caregivers a chance to maintain employment and income while supporting a care recipient and likely incurring more expenses (Heller et al., 2007; Kumagai, 2017; Rao et al., 2021). Additionally, use of respite services is associated with a reduced likelihood of older adult neglect and abuse and may enable care recipients to reside in community settings (rather than institutional settings), for instance, in circumstances where an in-home care provider supports the care recipient during the day so the caregiver can take a break (Gresham et al., 2018). These services may be especially promising for caregivers who are women (60% of all caregivers) and from racial and ethnic minority communities (40% of all caregivers) who may face an exacerbated risk of adverse health and employment outcomes associated with caregiving owing to differences in social support, caregiving preparedness, traditional gender roles, limited access to paid leave, and cultural expectations of caregiving (C. Liu et al., 2021; J. Liu, 2021).

Respite Services are Underutilized

Despite evidence of improved outcomes associated with respite service use, respite care continues to be an underutilized resource (AARP & National Alliance for Caregiving, 2020; Utz, 2022). Estimates of respite care use among caregivers range from 10% to 16% with reasons for underuse including time, cost, lack of awareness and accessibility, cultural beliefs, and variable eligibility criteria that are often based on care recipient characteristics rather than caregiver need (AARP & National Alliance for Caregiving, 2020; Rose et al., 2015).

However, little is known about when and why caregivers use (or do not use) respite services. Previous studies have examined correlates of respite service use among caregivers combined with other types of formal services such as support groups, rather than focusing specifically and exclusively on respite care (Feldman et al., 2020; Yoshikawa et al., 2023). Even less is known about how the conditions under which caregivers use respite services may vary across social identities (e.g., sex and race). For example, lower utilization of respite services among Asian, Black, and Hispanic caregivers compared to White, non-Hispanic caregivers may be attributed to barriers (e.g., language), cultural beliefs such as familism and/or filial piety (Crist & Speaks, 2011; Miyawaki, 2016; Raj et al., 2021), or due to structural obstacles or a strong cultural emphasis on self-sufficiency and related hesitancy to seek external assistance (Parker & Fabius, 2020). Studies also suggest that female caregivers who use respite services may also benefit other types of supplemental support (e.g., education or counseling) (Chen, 2014). Ensuring the provision of appropriate, accessible, and relevant respite services across communities first requires greater clarity around how caregiver needs and access to other relevant resources is related specifically to their use of respite services. Upon accounting for caregiver needs and access to resources, identifying potential disparities in use of respite services is important for developing or tailoring services to meet diverse caregiver needs.

Conceptual Framework

Our study applies the Andersen and Newman (1995) framework which identifies three key factors influencing the use of healthcare services: predisposing factors (personal characteristics; e.g., age, gender, education, and race), enabling factors (resources that can help people access healthcare services, such as financial and social support that enable a caregiver to access an in-home care provider) and need factors (Andersen, 1995). For instance, a caregiver might perceive a need for training on wound management; this might motivate them to seek respite services so they have time to attend a caregiver training (Brandao et al., 2022). In combination, predisposing, enabling, and need factors have the potential to explain the conditions under which an individual (e.g., a caregiver) might use a health service (e.g., respite care).

Study Objectives

The main objective of this study was to characterize the use of respite care services [i.e., when and why caregivers use respite care]. We conducted additional analyses to examine potential disparities in respite care use in terms of caregivers’ self-reported sex and race.

Methods

Study Design

We conducted a cross-sectional secondary analysis of the nationally representative 2017 National Study of Caregiving (NSOC) Wave III, a derivative of the 2017 National Health and Aging Trends Study (NHATS). The NSOC 2017 Wave III comprised 2652 unpaid caregivers age 18 and older who supported NHATS Medicare beneficiaries age 65 or older (Kasper et al., 2013) and collected information about caregiving experiences and responsibilities. Since informed consent was obtained from the John Hopkins University Institutional Review Board during primary data collection, no further permission was needed for our analysis.

Measures

The outcome was the utilization of respite care services measured by response (yes/no) to the question: “In the last year of {care recipient} ‘s life}, {have you used/did you use} any service that took care of {care recipient} so that you could take some time away from helping?” We selected predictor variables based on the conceptual framework. To capture predisposing characteristics, we included self-reported sex (male vs. female), age (years), education (high school diploma or less, some college or Associate’s degree, or Bachelor’s degree or higher), race (White, African American, American Indian/Alaska Native, Asian, Native Hawaiian/Pacific Islander), and ethnicity (Hispanic vs. non-Hispanic). To capture needs, we included variables assessing financial difficulty (Is helping your (care recipient) financially difficult for you; yes/no), physical difficulty (Is helping your (care recipient) physically difficult for you; yes/no), and emotional difficulty (Is helping your (care recipient) emotionally difficult for you; yes/no). We also included a variable assessing whether the care recipient “gets on the caregiver’s nerves” (How often does {he/she} get on your nerves?“; a lot, some, a little, or not at all). We categorized responses to this question into two groups (most of the time vs. not at all). To evaluate enabling characteristics, we included: (1) support from families/friends to care for the care recipient (“Do you have friends or family that help you care for {care recipient}?“; yes/no); (2) caregiving training (“In the last year {of {care recipient} ‘s life}, {have you received/did you receive} any training to help you take care of {care recipient}?“; yes/no); (3) engagement with support groups (“In the last year {of {care recipient} ‘s life}, {have you gone/did you go} to a support group for people who give care?” (yes/no); and (4) support from family/friends for personal tasks (“Do you have friends or family that help you with your daily activities, such as running errands or helping you with things around the house?”; yes/no).

Analysis

We applied population sampling weights to our analysis and conducted chi-squared tests to examine how independent variables varied by sex and race and ethnicity. Due to underrepresentation of non-White and/or Hispanic respondents in the dataset (Table 1) our analysis included two categories for race and ethnicity (White, non-Hispanic vs. non-White and/or Hispanic). We also conducted unadjusted and adjusted logistic regression models to estimate factors associated with respite service use. Due to the limited sample size, we estimated each predictor individually in adjusted logistic regressions, controlling for race, sex, and age. We provided an adjusted odds ratio stratified by race and sex by fitting individual models to each subgroup. The alpha level was set to 0.05, and STATA 15 was used for our analyses.

Table 1.

Weighted Socio-Demographic and Caregiving Variables (n = 2652).

Variables	Percentage (%), MSD
Self-reported sex
Male	36.13
Female	63.87
Age (yrs)	60.13 0.46
Race and ethnicity
White, non-Hispanic	75.22
Black, non-Hispanic	13.19
Hispanic	8.90
Asian American	0.80
American Indian/Alaska Native	1.21
Native Hawaiian/Pacific Islander	0.69
Education level
High school or less	34.42
More than high school (some college or associate degree)	35.09
Bachelor’s and higher	30.49
Household income (USD$)
Less than or equal to $50,000	54.59
More than $50,000	45.41
Respite care utilization
Yes	89.64
No	10.36
Financial difficulty
Yes	13.97
No	86.03
Physical difficulty
Yes	17.23
No	82.77
Emotional difficulty
Yes	37.87
No	62.13
Families/Friends support to care for care recipient (FSCR)
Yes	68.75
No	31.25
Caregiving training (CT)
Yes	7.68
No	92.32
Support group (SG)
Yes	3.22
No	96.78
Families/Friends’ support (FFS)
Yes	54.76
No	45.24
The Care Recipient is getting on the Caregiver Nerve (CRCN)
Most time	63.69
Not at all	36.31

Results

Of the final sample (n = 2652), 63.87% were female and the average age was 60 years. Over three-quarters (75.22%) were White, non-Hispanic and 30.49% have a bachelor’s degree. More than half (54.59%) were in households earning less than $50,000 per year (Table 1).

Respite care use was consistent with previous estimates (10.36%). Over one-third of respondents reported emotional difficulties (37.87%), 13.97% reported financial difficulties, and 17.23% reported physical difficulties. Over half (63.69%) reported that their care recipients got on their nerves. Just over two-thirds of caregivers (68.75%) received support for caregiving responsibilities from family and friends, while only 7.68% reported receiving any caregiving training. Only 3.2% of caregivers attended a support group; however, over half (54.76%) received help with personal tasks from friends and family.

Bivariate Analyses: Disparities by Self-Reported Sex

There were no statistically significant differences in the relationship between self-reported sex and financial difficulties, families/friends’ support in caregiving, caregiving training, support group membership, families/friends’ support for caregivers, or care recipients getting on to the caregiver’s nerves. However, female caregivers were significantly more likely to report physical (X² (1.56) = 12.52, p < .05) and/or emotional difficulties related to caregiving (X² (1.56) = 8.14, p < .05)) (Supplemental Table).

Bivariate Analyses: Disparities by Race

There were no significant differences between White, non-Hispanic and non-White and/or Hispanic respondents in terms of physical difficulty, caregiving training, or support group membership. However, White, non-Hispanic caregivers were more likely to experience greater emotional difficulty than non-White and/or Hispanic caregivers (X² (1.56) = 8.905, p < .05) and non-White and/or Hispanic caregivers were more likely to experience financial difficulty (X² (1.56) = 8.629, p < .05). Non-White and/or Hispanic caregivers were more likely to receive families’/friends’ support to care for their care recipient than their White, non-Hispanic counterparts (X² (1.56) = 7.968, p < .05). Similarly, non-White and/or Hispanic caregivers were more likely to receive support from families/friends’ support to care for their care recipients’ than White, non-Hispanic caregivers (X² (1.56) = 7.968, p < .01). Non-White and/or Hispanic caregivers were also less likely to report experiencing their care recipient getting on their nerves compared to White, non-Hispanic caregivers (X² (1.56) = 30.338, p < .05) (Supplemental Table).

Estimating Respite Care Utilization

Caregivers experiencing financial difficulties were significantly more likely to utilize respite care than those with no financial constraints in both unadjusted and adjusted models (unadjusted OR = 2.496, 95% CI = 1.602–3.891, p < .01); AOR = 2.311, 95% CI = 1.432–3.732, p < .01). Caregivers experiencing physical difficulties were more likely to use respite care than those with no physical difficulties [(OR = 2.351, 95% CI = 1.608–3.439, p < .01); (AOR = 2.363, 95% CI = 1.607–3.476, p < .01)]. This trend was consistent for caregivers confronting emotional difficulty compared to those experiencing no emotional difficulty [(OR = 2.722, 95% CI = 1.953–3.793, p < .01); (AOR = 2.823, 95% CI = 2.012–3.962, p < .01)]. Caregivers receiving support from family/friends to care for the care recipient were more likely to use respite care than those with no such support [(OR = 1.675, 95% CI = 1.086–2.585, p < .05); (AOR = 1.968, 95% CI = 1.210–3.200, p < .01)]. After adjusting for race, sex, and age, belonging to a support group (AOR = 1.937, 95% CI = 0.932–4.025, p = .075) and receiving caregiving training (AOR = 1.352, 95% CI = 0.826–2.213, p = .225) were both associated with an increased likelihood of using respite care, but these relationships were not significant. Caregivers who also received support from family/friends (for personal tasks unrelated to supporting the care recipient) were more likely to use respite care (AOR = 1.468, 95% CI = 1.013–2.126, p < .05). However, caregivers reporting that care recipients often get on their nerves were more likely to use respite care than those with no such incidence [(OR = 1.516, 95% CI = 1.143–2.001, p < .01); AOR = 1.467, 95% CI = 1.073–1.988, p < .05)] (Table 2).

Table 2.

Adjusted (*Race and Ethnicity, Self-Reported Sex, Age) and Unadjusted Odds Ratios Estimating Respite Care Utilization (n = 2652).

Variables	OR, 95%CI	p-value	AOR*, 95%CI	p-value
Financial difficulty
No	Ref		Ref
Yes	2.496(1.602–3.891)	0.001**	2.311 (1.432–3.732)	0.001**
Physical difficulty
No	Ref	0.001**	Ref	0.001**
Yes	2.351(1.608–3.439)		2.363 (1.607–3.476)
Emotional difficulty
No	Ref	0.001**	Ref	0.001**
Yes	2.722(1.953–3.793)		2.823 (2.012–3.962)
Families/Friends support to care for care recipient
No	Ref	0.021*	Ref	0.007*
Yes	1.675(1.086–2.585)		1.968 (1.210–3.200)
Caregiving training
No	Ref	0.428	Ref	0.225
Yes	1.216 (0.744–1.985)		1.352 (0.826–2.213)
Support group
No	Ref	0.143	Ref	0.075
Yes	1.692 (0.832–3.442)		1.937 (0.932–4.025)
Families/Friends’ support
No	Ref	0.073	Ref	0.043*
Yes	1.367 (0.969–1.925)		1.468(1.013–2.126)
The care recipient is getting on the caregiver nerve
Not at all	Ref		Ref
Most time	1.516(1.143–2.001)	0.001^**	1.461(1.073–1.988)	0.017*

*p < .05; **p < .01, ***p < .001.

Female caregivers reporting financial difficulty were more likely to use respite care (AOR = 2.448, 95% CI = 1.490–4.015, p < .01); while male caregivers reporting financial difficulty were also more likely to use respite care, this difference was not statistically significant (AOR = 2.155, 95% CI = 0.939–4.941, p = .069. Female caregivers reporting physical difficulty were also more likely to use respite care (AOR = 3.000, 95% CI = 2.024–4.459, p < .01), while physical difficulty in caregiving was not significantly associated with the use of respite care among male caregivers (AOR = 1.211, 95% CI = 0.635–2.310, p = .554) (Table 3). Both male (AOR = 1.889, 95% CI = 1.111–3.212, p < .05) and female (AOR = 3.665, 95% CI = 2.312–5.808, p < .01) caregivers experiencing emotional difficulties during caregiving were significantly more likely to use respite care. However, the impact of receiving support from families or friends to care for the recipient on respite care usage was significant only for female caregivers (AOR = 1.881, 95% CI = 1.226–2.888, p < .01). Male caregivers reporting that care recipients often get on their nerves did not have a significant effect on the use of respite care (AOR = 1.260, 95% CI = 0.625–2.541, p = .511); however, among female caregivers, those reporting that care recipients often got on their nerves were more likely to use respite care than those who did not (AOR = 1.581, 95% CI = 1.093–2.286, p < .01).

Table 3.

Adjusted Logistic Regression With Self-Reported Sex Stratification [*Adjusting for Age and Race and Ethnicity, (n = 2652)].

Variables	Male, AOR, 95%CI	p-value	Female AOR*, 95%CI	p-value
Financial difficulty
No	Ref		Ref
Yes	2.155 (0.939–4.941)	0.069	2.448(1.49–4.015)	0.001**
Physical difficulty
No	Ref		Ref
Yes	1.211 (0.635–2.310)	0.554	3.000 (2.024–4.459)	0.001**
Emotional difficulty
No	Ref		Ref
Yes	1.889 (1.111–3.212)	0.020*	3.665 (2.312–5.808)	0.001**
Families/Friends support to care for care recipient
No	Ref		Ref
Yes	2.264 (0.735 – 6.975)	0.151	1.881 (1.226–2.888)	0.005**
Caregiving training
No	Ref		Ref
Yes	1.208 (0.519–2.810)	0.657	1.389 (0.790–2.441)	0.248
Support group
No	Ref		Ref
Yes	1.682 (0.464–6.106)	0.422	2.020 (0.807–5.056)	0.130
Families/Friends’ support
No	Ref		Ref
Yes	1.899 (0.924–3.904)	0.080	1.304 (0.849–2.004)	0.221
Care recipient gets on caregiver’s nerve
Not at all	Ref		Ref
Most time	1.260 (0.625–2.541)	0.511	1.581(1.093–2.286)	0.001**

*p < .05; **p < .01, ***p < .001.

White, non-Hispanic caregivers (AOR = 2.044, 95%CI = 1.183–3.533, p < .05) and non-White and/or Hispanic caregivers (AOR = 2.909, 95% CI = 1.300–6.507, p < .05) experiencing financial difficulty were more likely to use respite care services than those reporting no financial difficulty. White, non-Hispanic caregivers encountering physical difficulties were also more likely to use respite care (AOR = 2.169, 95% CI = 1.356–3.470, p < .01), and this result was also observed among non-White and/or Hispanic caregivers (AOR = 2.971, 95% CI = 1.652–5.344, p < .01). White, non-Hispanic caregivers (AOR = 3.188, 95% CI = 2.121–4.793, p < .01) and non-White and/or Hispanic caregivers (AOR = 2.033, 95% CI = 1.116–3.702, p < .05) who faced emotional difficulties were more likely to use respite care services. White, non-Hispanic caregivers receiving support from family/friends to care for the care recipient were more inclined to use respite care services than those who did not receive such support (AOR = 2.230, 95% CI = 1.339–3.714, p < .01). However, for non-White and/or Hispanic racial groups, receiving caregiving support from family/friends did not have a significant impact on the use of respite care (AOR = 1.329, 95% CI = 0.444–3.980, p = .605). Non-White and/or Hispanic caregivers who attend support groups were more likely to use respite services (AOR = 3.019, 95% CI = 1.235–7.377, p < .05) (Table 4).

Table 4.

Adjusted Logistic Regression With Race and Ethnicity Stratification [*Adjusting for Age and Sex, (n = 2652)].

Variables	White, non-Hispanic, AOR, 95%CI	p-value	Non-White or Hispanic, AOR*, 95%CI	p-value
Financial difficulty
No	Ref		Ref
Yes	2.044(1.183–3.533)	0.011*	2.909(1.300–6.507)	0.010*
Physical difficulty
No	Ref		Ref
Yes	2.169(1.356–3.470)	0.002*	2.971(1.652–5.344)	0.001**
Emotional difficulty
No	Ref		Ref
Yes	3.188(2.121–4.793)	0.001**	2.033(1.116–3.702)	0.021*
Families/Friends support to care for care recipient
No	Ref		Ref
Yes	2.230(1.339–3.714)	0.003**	1.329 (0.444–3.980)	0.605
Caregiving training
No	Ref		Ref
Yes	1.276 (0.697–2.336)	0.422	1.732 (0.778–3.857)	0.175
Support group
No	Ref		Ref
Yes	1.641 (0.636–4.237)	0.299	3.019(1.235–7.377)	0.016*
Families/Friends’ support
No	Ref		Ref
Yes	1.356 (0.879–2.0925)	0.164	1.898 (0.836–4.310)	0.123
Care recipient gets on caregiver’s nerve
Not at all	Ref		Ref
Most time	1.275 (0.892–1.822)	0.178	1.941 (0.972–3.877)	0.060

*p < .05; **p < .01, ***p < .001.

Discussion

This study examined the circumstances under which caregivers use respite care services and how these circumstances may be differentially associated with respite care use according to the sex or race and ethnicity of caregivers. Our results are consistent with previous studies in terms of associations between specific covariates and use of respite services. However, most of these previous studies examined the relationship between a smaller set of predictors (e.g., physical challenges) and use of respite services in combination with, or compared to, other types of services. Our analysis, in contrast, presents an analysis of how various demographic, social, and caregiving circumstances may be related to the use of respite services specifically. We also examine how other types of services for caregivers (e.g., support groups) could be related to use of respite services. These findings can support the development of resources and approaches for clinicians and community organizations to facilitate use of respite services among caregivers that leverage and supplement existing services.

Implications for Practice, Policy, and Future Research

Caregiving training, support groups, and family/friend support for personal tasks may be leveraged to raise awareness of and access to respite services. For instance, a training program related to managing emotionally intensive situations with a care recipient, could also involve education about respite services (Leocadie et al., 2018). Technology (e.g., Zoom) could connect family and friends residing in other locations with care recipients to provide caregivers with a break. Online support groups for caregivers could additionally offer simultaneous virtual services (e.g., adult day care) for care recipients (Utz, 2022). Online groups could also provide caregivers with the opportunity to form social connections related to interests outside of caregiving (Mois et al., 2023). Additionally, and especially for caregivers without local support from family or friends, community health workers could be trained to provide respite services; this might be especially relevant for reducing sociocultural barriers to respite services for culturally diverse caregivers and/or care recipients (Hodges et al., 2023). Some resources (e.g., family/friend caregiving support) may be more motivational towards respite care use, particularly for female caregivers, than other resources (e.g., training and support groups). However, the efficacy of these resources, including access to and awareness of resources (e.g., training), requires further study (Mollica et al., 2020).

Clinicians and community organizations can play a vital role in supporting caregivers by promoting respite services. Caregiving has been well-established as a risk factor for adverse health outcomes (Schulz & Beach, 1999). Family-centered approaches to clinical care that account for caregiving experiences may be critical for clinicians to better contextualize their patients’ health and healthcare needs related to caregiving demands and experiences. By collecting information about whether a patient is also a caregiver, clinicians may be better equipped to provide caregivers with relevant resources or recommendations for respite services. For instance, clinicians identifying patients as female caregivers could prioritize mental health screenings and/or refer them to respite services. Healthcare organizations (e.g., hospitals and primary care clinics) may be ideal information hubs for resources on local respite services; these organizations could use prenatal education as a model for providing recommendations to caregivers of adults. Including information in different languages may be important for ensuring accessibility of information and subsequently, accessibility of respite services. Healthcare organizations could train and engage with community health workers to provide respite services for individuals within their local and cultural community to meet the needs of culturally diverse caregivers. Organizations that provide respite services in conjunction with other services such as counseling or physical therapy may be especially important for female caregivers who we find are more likely to use respite services when facing emotional, physical, or financial difficulties as well as for caregivers regardless of race or ethnic background (Goetzinger et al., 2011).

Policymakers and healthcare providers should consider the physical, emotional, and financial challenges caregivers face when developing respite care policies and programs. Ensuring that respite services are accessible, affordable, and tailored to the specific challenges of caregivers can promote their use and support their well-being. Through the Lifespan Respite Care Program, part of the Public Health Service Act, competitive grants of up to $200,000 were awarded to eligible agencies in 37 states and the District of Columbia in 2017. This initiative helped develop or improve respite systems in the awarded states, allowing better access to and receipt of respite services. However, more community-based organizations with direct access to caregivers should be able to access this fund, and training of volunteer and paid respite providers should be increased to further expand eligibility access and availability of respite services (Administration for Community Living, 2023). Caregiver programs that include interventions addressing the emotional challenges of caregiving, such as stress management, coping skills, and mental health support, may be particularly effective and may feel more productive to caregivers perceiving a time burden associated with self-care that could be directed towards caregiving responsibilities (Sabo & Chin, 2021). For instance, studies find that feelings of guilt present a barrier to caregivers’ use of respite services as they may feel they are abandoning or betraying their relative (Leocadie et al., 2018). Ensuring that existing programs and resources—such as mental health professionals working with caregivers—address these underlying barriers could also be important for encouraging respite service use. Moreover, there is a need for future research to examine deficiencies in these resources such as education and support groups that may reduce their effectiveness in encouraging respite service use among subpopulations of caregivers such as female caregivers. Studies could use qualitative approaches to learn caregivers’ experiences with respite services and/or other resources to better understand facilitators and barriers to respite service use. These studies could align with research examining reasons for lower utilization of other formal supports and services to identify common barriers to using respite services (Alexander et al., 2022; Lu et al., 2021).

Policymakers must also consider Medicaid waivers, which vary tremendously across states in terms of definitions of respite care and eligible forms of respite care (Rose et al., 2015). While respite care can also be delivered through Medicare in an approved facility such as through hospice or a nursing home for a maximum of five days (Bhatnagar & Lagnese, 2023), only 35 U.S. states offer Medicaid waivers for in-home respite care and 32 states offer out-of-home respite care; waivers supporting caregiver training are even less accessible, with only 15 states offering waivers (Swartzell et al., 2022). Achieving standardization, consistency, and comprehensiveness in Medicaid waivers may be a pivotal step towards increasing accessibility to respite services as well as other resources that can support caregivers and function as a form of respite (e.g., support groups and training). Financial supports (e.g., through paid family leave) that may enable caregivers to take time for respite in order to maintain their caregiving responsibilities, also vary in scope and eligibility (Miller et al., 2022). Policy modifications to increase offering of both in-home and out-of-home respite care services will be critical to ensuring robust support for caregivers. Some promising emergent strategies for improving access to respite services for caregivers include structuring respite services based on the care recipient and caregiver’s need (e.g., based on complexity of care required or flexibility based on caregiver’s service needs), integrating other family members or friends into the direct care workforce so they can provide respite care, and increasing reimbursement rates to incentivize providers to offer respite care (Hodges et al., 2023). Developing strategies and mechanisms for establishing rapport between caregivers and respite service providers may be essential to facilitating consistent and continued use of respite services (Tell et al., 2021).

Developing effective policies to support caregivers from diverse backgrounds and circumstances requires engaging with caregivers directly and identifying the scope of policies (e.g., Medicaid, family leave, and healthcare system) that may be relevant to caregivers. Defining services (e.g., support versus respite versus training) in a standardized manner is also critical to ensuring that the distinct circumstances of caregivers (e.g., having family support in multigenerational households) are accounted for in policy development and implementation. Understanding the needs of diverse caregivers (across sex, gender, age, caregiving relationship, and race, ethnicity, and culture) is also required to ensure that definitions and scope of respite services are appropriate and relevant to the needs and circumstances of all caregivers. For instance, understanding the role of filial responsibility in respite service use is critical to understanding how respite care is defined for policy purposes, and to evaluate the cultural relevance of respite programs to caregivers from cultures where taking time for one’s own wellbeing may be viewed as compromising caregiving responsibilities (Miyawaki, 2016). The Latino Age Wave Colorado (LAWC) is one example of a program that responded to caregiver reports of difficulties in utilizing overnight and facility-based respite care, finding available care in rural areas, and encountering cultural barriers with providers by training and financially supporting caregivers (Colorado Health Institute, 2020). Future research should examine the use of respite services among diverse caregivers using approaches that consider the intersection of race, sex, age, and other social identities that may explain variation in respite service use. For instance, while our analysis suggests the potential for support groups in encouraging respite service use among minoritized caregivers, it is possible that these support groups are more likely to encourage respite service use among male caregivers from these communities as compared to female caregivers.

Our study has some limitations. First, as this is a cross-sectional study, we cannot make causal inferences about the relationships between our predictors and respite care use. Even though our study analyzes a nationally representative sample of caregivers, due to limitations of the data itself, our analyses were not performed on a sufficient sample of caregivers from racially and ethnically diverse participants. Our classification of caregivers as White, non-Hispanic versus non-White and/or Hispanic limits our interpretation of nuances in the caregiving experience and use of respite services among distinct, disaggregated racial communities (e.g., Asian American versus American Indian). Additionally, our analysis does not account for caregivers’ state of residence and related access to respite resources through Medicaid waivers; this could be examined in future studies. Despite these limitations, our study is one of the first to provide insight into the role of several factors at multiple levels that may influence respite service use, and further, to obtain preliminary insights into the relationship between these enabling and need factors and respite service use among caregivers of various circumstances (sex, race) that should inform future studies.

Supplemental Material

Supplemental Material - Factors Influencing Caregivers’ Use of Respite Care Services: Secondary Analysis of the National Study of Caregiving

Supplemental Material for Factors Influencing Caregivers’ Use of Respite Care Services: Secondary Analysis of the National Study of Caregiving by Babatope Ogunjes, Xiaotian Gao, and Minakshi Raj in Journal of Applied Gerontology.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Babatope Ogunjesa

Minakshi Raj

Supplemental Material

Supplemental material for this article is available online.

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