Caregiver Characteristics and Barriers to Resource Use: Findings From a Rural State Caregiver Survey

Abstract

Background: Despite the key role family caregivers play in the US healthcare system, they are not systematically identified and tracked, limiting our knowledge about this important group. Objective: Our objective was to identify caregiver characteristics and barriers to service delivery in a primarily rural state. Methods: As part of a quality improvement project, a cross-sectional online survey was fielded in clinical and community settings. Participants included 85 self-identified adult caregivers of another adult with an illness, condition, or disability from within a US state healthcare network. Descriptive analyses were conducted, and inferential statistics were used to compare urban versus rural respondents and older versus younger respondents. Results: Caregivers were responsible for a wide range of care activities and particularly older caregivers spent a significant amount of time providing care. Older caregivers also reported significantly lower levels of burden compared to younger caregivers, yet both groups had clinically high levels on average. Caregivers reported receiving helpful emotional support, but needed more tangible support and were limited by availability and cost. Conclusions: There is a need to fund comprehensive caregiver programing and address caregivers’ own social and physical health needs to reduce caregiver burden.

Key Points

• Caregivers often have their own health challenges and report low levels of self-care.

• Although caregivers report receiving emotional support, there is a need for paid time off and respite care.

• Conflict in family’s care strategies may result in barriers to accessing services.

As the American population ages and more care moves to outpatient settings, there has been increasing attention to family caregiving as an important public health issue in the US. Caregivers, many of whom are in mid or later life themselves, perform critical tasks that help patients remain at home, often with limited or no health care training. Although caregivers may benefit from their experience and being cared for at home can often improve patient outcomes, caregiving can be burdensome and adversely affect caregiver well-being and healthy aging.

Despite the importance of caregivers as the “hidden backbone” of the healthcare system, it is not often clear who caregivers are. Only recently has there been a push to systematically identify a caregiver in a patient’s medical record in most states. Most care settings do not offer comprehensive and proactive caregiver support programs (Odom et al., 2023). Instead, caregivers often are required to patch together their own support services. Often barriers exist within this process, limiting the ability of caregivers to take advantage of available support. These barriers can be exacerbated in rural areas, where the population tends to be older, have more health issues, have lower health literacy, and have fewer services available to them in the community (Crouch et al., 2017).

Because of the poor existing infrastructure around caregiving in the US, it can be difficult to assess the characteristics that define this population and identify the key barriers needed to overcome to receive important services. Our goal was to identify caregiver characteristics and barriers to service delivery in a primarily rural statewide catchment area.

Methods

Recruitment

Participants were adults recruited from state-wide clinical and community settings from April to November 2023. As part of a quality improvement project focused on improving services for caregivers, the Institutional Review Board determined that this study was exempt from review.

Advertisements and links for an online survey were posted in clinics specializing in oncology, primary care, and memory care, through clinic newsletters and listservs, and through community organizations and media. Survey respondents indicated that they identified as an adult caregiver, defined as providing “unpaid assistance to another adult with an illness, condition, or disability.”

Measures

In addition to demographic information, we asked caregivers to report on their own health and caregiving history, and basic information about care recipient (or the person for whom they care for the most). We assessed social determinants of health (e.g., food insecurity, ability to pay bills) and potential reasons why caregivers may not engage in services. We also included short, open-ended questions about caregivers’ most helpful sources of support, services, or resources they would find helpful, and barriers to accessing services.

Three brief psychological assessments were also administered, including the 4-item Zarit Burden Scale (ZBI) (Bédard et al., 2001), the 2 item Patient Health Questionnaire (PHQ-2) depression scale (Manea et al., 2016), and the 2 item Generalized Anxiety Disorder (GAD-2) anxiety scale (Plummer et al., 2016).

Analysis

Descriptive analyses were conducted to summarize caregiver data. Independent t tests and Chi-squared analyses were used to compare demographic and caregiving data between urban and rural respondents as well as respondents under 65 and those 65 and older. Open-ended responses were read by the first author and inductively categorized.

Results

Eighty-five caregivers responded to the survey; demographics are shown in Table 1. There were no differences in demographics between rural and urban respondents. Older caregivers reported significantly more of their own conditions than younger caregivers (M = 1.7 vs. M = 0.7; t = −3.07, df = 66.95, p = .003) and were more likely to be retired/not working full time compared to younger caregivers (Χ² = 44.15, df = 3, p < .001). Older caregivers were more likely to be caring for a spouse (Χ² = 21.85, df = 5, p < .001) and cohabitating with the care recipient (Χ² = 6.44, df = 1, p = .01) compared to younger caregivers.

Table 1.

Descriptive Data.

Caregiver information n = 85			Mean (Median)		SD
Age			61.76 (65)		12.38
			Frequency		Percent
Race/Ethnicity (choose all that apply)
American Indian			2		2.4
Asian			0		0
Native Hawaiian or other Pacific Islander			0		0
Black or African American			0		0
White			82		96.5
Hispanic/Latino			5		6.9
Other			1		1.2
Sex
Male			18		21.2
Female			66		77.6
Non-binary			1		1.2
Missing			1		1.9
Education
High school graduate/GED			2		2.3
Some college, associate or vocational degree			24		27.9
4-year college graduate, bachelors degree			20		23.3
Graduate or professional degree			40		46.5
Employment
Employed for pay, full-time			33		38.4
Employed for pay, part-time			6		7.0
Retired			43		50.0
None of the above			4		4.7
Financial situation
My financial situation is not very good			18		21.2
My financial situation is comfortable			58		68.2
My financial situation is more than adequate to meet my needs			9		10.6
Missing			1		1.2
Rurality
Rural			45		52.3
Urban			38		44.7
Other			2		2.3
Missing			1		1.2
			Mean		SD (Range)
Total number of caregiver conditions			1.22		1.64 (0–8)
Zarit burden score			13.52		3.03 (6–20)
Anxiety: PHQ-2 score			1.51		1.23 (0–5)
Depression: GAD-2 score			2.25		1.48 (1–5)
Frequency of. . .	Daily	A few days/week	Occasionally	Never	Missing
Exercise	9 (10.5)	24 (27.9)	25 (29.1)	2 (2.3)	26 (30.2)
Pain	26 (30.2)	12 (14.0)	18 (20.9)	4 (4.7)	26 (30.2)
Tobacco use	2 (2.3)	0 (0)	1 (1.2)	56 (65.1)	27 (31.4)
Alcohol use	3 (3.5)	10 (11.6)	24 (27.9)	22 (25.6)	27 (31.4)
Cannabis use	3 (3.5)	0 (0)	3 (3.5)	51 (59.3)	29 (33.7)
Loneliness	5 (5.8)	13 (15.1)	30 (34.9)	12 (14.0)	26 (30.2)
Time for self	5 (5.8)	5 (5.8)	44 (51.2)	5 (5.8)	27 (31.4)
What is your relationship to the person you care for? This person is your:			M		Percent
Spouse or partner			44		53.7
Parent (or parent in-law)			21		25.6
Brother or Sister (or brother in-law/sister in-law)			3		3.7
Child (or child in-law)			4		4.9
Friend or neighbor			6		7.3
Other			4		4.9
			Mean		Standard deviation (Range)
Total number of patient conditions			2.39		1.61 (1–6)
Length of care			Mean (Median)		SD (Range)
Years			8.70 (5)		12.29 (1–91)
Months			5.32 (6)		3.28 (0–11)
Hours per week of care			36.27 (20)		41.23 (2–168)
Which of the following activities do you help the person you provide care with because of their health status?			Frequency		Percent
Personal care activities			36		44.4
Managing medications			58		71.6
Providing emotional support			73		90.1
Helping find information about their medical care			62		76.5
Helping schedule appointments and/or helping to manage  paperwork related to their medical care			67		82.7
Attending appointments with them			75		92.6
Helping to make decisions about their medical care			61		75.3
Helping to monitor symptoms/side effects and reporting them to the medical team			62		76.5
Keeping other family members or friends informed about  what’s happening with their condition or their care			66		76.5
Other			27		33.3
None of the above			0		0
Missing			5		5.8
			Mean (Median)		Standard deviation
How supported by your family/friends are you in providing care and assistance for this person? (0 = not at all, 10 = extremely)			3.90 (4)		2.85
Reasons why you have NOT used a service			Frequency		Percent
Cost			18		36.0
Unable to find service in my area			24		48.0
Others don’t want the service			18		36.0
I didn’t know services were available			19		38.0
Availability is limited			19		38.0
I don’t like asking for help			13		26.0
Enrollment is too complicated			9		18.0
Poor quality of services			7		14
Prefer to get help from family/friends			6		12.0
Missing			36		41.9
Concerns about the availability or cost of. . .		Yes	No	Not sure	Missing
Food		15 (17.4)	45 (52.3)	1 (1.2)	25 (29.1)
Safe, steady housing		7 (8.1)	53 (61.6)	1 (1.2)	25 (29.1)
Utilities		6 (7)	54 (62.8)	0 (0)	26 (30.2)
Phone		7 (8.1)	53 (61.6)	0 (0)	26 (30.2)
Medicine or other health care service		23 (26.7)	35 (40.7)	0 (0)	28 (32.6)
Clothing		3 (3.5)	55 (64.0)	0 (0)	28 (32.6)
Child care or elder care		23 (26.7)	35 (40.7)	0 (0)	28 (32.6)
Transportation		16 (18.6)	45 (52.3)	0 (0)	25 (29.1)

Caregivers reported having provided care for a median of 5 years and spending 20 hr/week providing care, though there was wide variability. The most common care activities included attending appointments (92.6%), providing emotional support (90.1%), and helping schedule appointments or manage paperwork related to medical care (82.7%). On average, caregivers reported relatively high levels of burden (M = 13.52, SD = 3.03), but low levels of anxiety (M = 1.51, SD = 1.23) and depression (M = 2.25, SD = 1.48). Although 40% of caregivers report engaging in exercise at least a few days a week, 44% report experiencing pain at least a few days a week. Only 12% report taking time for themselves at least a few days a week and over 20% report feeling lonely at least a few days a week. There were no differences in caregiving characteristics between rural and urban caregivers, but older caregivers reported providing care for significantly more time per week (M = 49.7 vs. M = 24.7; t = −2.625, df = 58.03, p = .01) and reported significantly lower, but still meaningful, levels of burden (M = 12.5 vs. M = 14.8; t = 2.91, df = 54, p = .005).

Open-ended responses regarding the most helpful support received focused on support from family or friends, support groups, or counseling. Open ended responses regarding services they would find most helpful largely focused on paid time off, respite care, and help with decision-making and paperwork. The most common reasons for not using services included inability to find services in the area (48%), not knowing a service was available (38%), limited availability of services (38%), others not wanting the service (36%), or cost (36%). The most common social determinant of health concerns were about cost or availability of medicine or healthcare services (26.7%) and childcare or eldercare (26.7%). Open-ended responses around barriers to service use largely focused on time and money to find and enroll in services and uncertainty about the quality of services available. There were no significant differences between urban and rural or older and younger caregivers.

Discussion

Caregivers are a critical and growing part of the US healthcare system, but because they are not often systematically integrated in care, it can be a challenge to understand who they are or capture their needs. Caregivers are responsible for a wide variety of care activities, and most reported their care recipients had issues related to mobility issues, dementia, or old age/frailty. These conditions often go underdiagnosed, intersect with each other, and are often difficult to treat (Rahman et al., 2022). Many care activities involve monitoring, coordinating, anticipating, or being present, all of which require levels of attention that can be time-consuming and exhausting (Reich-Stiebert et al., 2023). Reporting more caregiving hours per week was more common in older caregivers, who were also more likely to be caring for a cohabitating spouse. Older caregivers also reported significantly less burden, which may reflect that younger caregivers are also balancing other responsibilities, such as work or childcare (Lei et al., 2023). However, even the average burden for older caregivers exceeds the scale’s threshold for high burden. These findings have implications for the type of personnel or infrastructure of support needed; rather than additional home-based medical/nursing staff, support with care coordination or respite may be key to reducing caregiver burden.

While caregivers report finding emotional support helpful, this can only go so far in supporting caregivers. Caregivers in our study most commonly reported a desire for pay for their own time and increased availability of respite care. Combined with the finding that caregivers rarely take time for themselves and often experience loneliness, this finding may suggest that caregivers are unable to engage in restorative activities, which can help build resilience and improve caregiver quality of life (Abshire Saylor et al., 2022; Stahl & Schulz, 2018). Similarly, caregivers in our study often reported their own health challenges, particularly older caregivers. This suggests that the person identified as “caregiver” may change depending on the situation; in fact, caregiving is likely to be a shared or interdependent role (Ketcher et al., 2021). Failing to address caregiver health needs can create downstream health crises, particularly given that many caregivers often prioritize the care recipient’s health over their own, and skip preventative and health-promoting care activities (Tay et al., 2023).

Barriers to formal service use identified in our sample were similar to national data, such that caregivers were unable to find available services or were unaware of services, or had concerns about cost. Interestingly, a common barrier in our study was that others did not want services; additionally, caregivers reported relatively low levels of support from family or friends in providing care. This suggests that there may be conflict among families around the strategy for care, which can augment caregiver burden (Dieker et al., 2024).

Limitations

Participants opted in from community postings, which may have biased our sample toward those with particular distress. Additionally, the urban area captured is still quite small and isolated, which may have obscured rural/urban differences. Although commensurate with the area demographics, there was relatively low racial and ethnic diversity. A larger, more diverse sample would allow subgroup analyses and the ability to determine profiles of caregivers and their unique needs.

Implications and Conclusions

There is a need to fund comprehensive caregiver programing and navigation services to help caregivers identify and enroll in needed services. Better care coordination could help reduce the mental load for caregivers. Better support for caregivers means improved patient care as well as improved population health.