Perceived helpfulness of caregiver support resources: Results from a state-wide poll

Abstract

Objective

Our goal was to identify specific types of services desired by caregivers and determine subgroups most interested in each service type.

Methods

Caregiving questions were added to a state-wide poll conducted in a majority-rural state. Those who identified as caregivers (n = 428) were asked to report on the helpfulness of 6 domains of services. Descriptive analysis and logistic regressions were conducted.

Results

Top resources caregivers identified as potentially helpful included hands-on services (33.9%), help coordinating care from multiple providers (21.5%), help with finances (18.9%), and help managing emotional stress (17.8%). Only 15% indicated no caregiver resources would be helpful. Younger caregivers endorsed several service domains as more helpful than older caregivers; caregivers reporting higher stress were more likely to endorse most domains as helpful.

Conclusion

Data reinforces the overwhelming need to offer caregiver services. Navigation and integrated and tailored service models may be beneficial to help caregivers identify and access appropriate services within healthcare systems.

Innovation

This study uses an innovative approach to identifying needs of caregivers, who are often invisible within the healthcare system. Our findings suggest a paradigm shift is needed to broaden the scope and depth of services offered to caregivers.

Highlights

• •Caregivers report interest in services, but desired services vary widely.
• •Integrated and tailored services may be most beneficial for caregivers.
• •Younger caregivers may have particular support service needs.

1. Introduction

Family members and friends serve an important role as caregivers for those with serious illness, and often report high burden. Research suggests that caregivers who take advantage of support services have lower levels of burden and higher levels of confidence [1] and that strong caregiver support services may decrease patient health care utilization and cost [2]. However, a recent review of reviews [3] suggests that caregivers report unmet needs across several domains of services.

In the US, health care systems do not have routine assessment of caregiver needs, nor systematic referral of caregivers to support services [4]. While person-level factors, such as awareness of services or time available to participate can create barriers to resource use, system-level factors, including a lack of relevancy or lack of tailoring to the caregivers' situation, can also prevent caregiver engagement [5,6]. Increasing attention has focused on the need to develop programs and services to support caregivers [7].

Specifically, supporting caregivers living in rural areas can be challenging. Rural areas often have fewer services; geographic distance and limited transportation can make access to those services more difficult. Rural residents are also more likely to be older, have more of their own health challenges, have fewer financial resources, and limited health literacy [[8], [9], [10], [11]]. These factors can create increased need for caregiving support, yet also present barriers to accessing services [5].

Our goal was to identify specific types of services desired by caregivers using a state-wide representative sample in a majority rural state and determine subgroups most interested in each type of service.

2. Methods

Data was gathered from the 2023 Vermonter Poll, a yearly phone-based survey in which households are randomly selected to represent areas from across the state from commercial consumer lists for contact. The study was determined to be exempt from IRB review. Research was conducted following all human subjects protection regulations. In addition to demographic information, the survey included up to 4 additional questions about caregiving. First, respondents were asked, based on the Caregiving in the US national poll wording [12], whether they were a caregiver, either currently or in the past year, defined as providing unpaid care to a relative or friend 18 years or older to help them take care of themselves.

Participants who indicated they were or had been a caregiver were then asked about hours of care and caregiving stress, and the helpfulness of 6 domains of services (information, financial, hands-on, care coordination, emotional stress, family stress) drawn from previous research [5,7,13] and interviews with caregivers. Survey wording is listed in Table 2.

Table 2.

Caregiver responses to helpfulness of resource domains.

Various organizations are thinking about ways to help people who provide care for others. Which of the following do you think would be helpful to you?	Frequency (Percent)
Better information, including training for care tasks or help making decisions about care	68 (15.9)
Help with finances, including insurance/leave	81 (18.9)
Hands-on services (in-home help, transportation, meals)	145 (33.9)
Help coordinating care from multiple providers	92 (21.5)
Help managing emotional stress	76 (17.8)
Help managing family stress	65 (15.2)
Don't know/unsure	80 (18.7)
None of the above	66 (15.4)
Missing/No Response	6 (1.5)

Deidentified data was provided to authors; descriptive analysis and logistic regressions to identify demographic predictors of identifying resource domains as helpful were conducted using R software.

3. Results

Of the 745 individuals who provided data, 428 (57%) identified as caregivers, either currently or in the past year. Demographic data for caregivers is presented in Table 1. Caregivers were more likely to be age 36–64 than in either older (B = -0.49, SE = 0.23, p = .03) or younger groups (B = -1.62, SE = 0.77, p = .03), female (vs. male, B = 0.37, SE = 0.12, p < .01), and not working full time (vs. full time work, B = 0.60, SE = 0.24, p = .01) than non-caregivers, but no differences were seen in education, income, or urban/rural designation (ps >0.49).

Table 1.

Caregiver demographics.

Variable	Frequency (%)	Variable	Frequency (%)
Age		Race
18 to 34 years	17 (3.9)	Asian	3 (0.7)
35 to 64 years	209 (44.1)	American Indian/Alaska Native	4 (0.9)
65 + years	202 (47.1)	White	376 (87.8)
Gender		Black	1 (0.2)
Man	156 (36.5)	Other	1 (0.2)
Woman	250 (58.4)	Missing/No Response	43 (10.0)
Trans, non-binary, other	9 (2.1)	Ethnicity
Missing/No Response	13 (3.0)	Not Hispanic, Latinx	357 (83.4)
Employment Status		Hispanic, Latinx	5 (1.4)
Working full-time (>35 h)	165 (38.6)	Missing/No Response	66 (15.4)
Not working full time (<35 h, unemployed, retired)	253 (59.1)	Rural/urban status
Missing/No Response	10 (2.3)	Rural (under 10 k population)	297 (69.4)
Household Income		Urban (over 10 k population)	131 (30.6)
Less than $25 k	15 (3.5)	Education Level
$25 k-$50 k	67 (15.6)	Less than High School	1 (0.2)
$50 k-$75 k	83 (19.4)	High school graduate	22 (5.1)
$75 k-$100 k	81 (18.9)	Some College, no degree	59 (13.8)
More than $100 k	132 (30.8)	College Degree or equivalent	340 (79.4)
Missing/No Response	50 (11.7)	Missing/No Response	6 (1.4)
Hours of care per week		Stress of Care
Less than an hour	110 (25.7)	Not at all stressful	107 (25.0)
1–8 h per week	204 (47.7)	A little stressful	169 (39.5)
9–20 h per week	57 (13.3)	Somewhat stressful	68 (15.9)
21–40 h per week	16 (3.7)	Moderately stressful	46 (10.7)
41 or more hrs per week	25 (5.8)	Very stressful	27 (6.3)
Missing/No Response	16 (3.7)	Missing/No Response	11 (2.6)

Caregivers provided data on perceived helpfulness of resources, shown in Table 2. The top resources identified as being potentially helpful included hands-on services (33.9%), help coordinating care from multiple providers (21.5%), and help with finances (18.9%). Only 15.4% indicated no caregiver resources would be helpful. The median number of resources selected as helpful was 1, but 37% of caregivers selected >1 resource. Overlap of resource selection is presented in Table 3.

Table 3.

Frequency of overlap of helpful resource domains.

	Info	Finances	Hands-on	Coordination	Emotions	Family
Info	68	33	37	34	29	25
Finances		81	46	34	31	29
Hands-on			145	54	35	30
Coordination				92	36	32
Emotions					76	45
Family						65

We saw no significant difference between subgroups in the helpfulness of information across age, employment, rurality, gender, or caregiver stress categories. Caregivers under 35 were more likely to report financial resources (B = 1.42, SE = 0.53, p < .01) and resources for managing family stress (B = 1.30, SE = 0.53, p = .01) would be helpful. Caregivers not working full time were less likely to report that assistance with finances would be helpful (B = -0.58, SE = 0.29, p = .04) than those working full time. Women were significantly more likely to report hands-on help would be beneficial than men (B = 0.31, SE = 0.14, p = .03). Compared to rural caregivers, urban caregivers were more likely to report support with emotional stress would be helpful (B = 0.59, SE = 0.29, p = .04). Hours of care did not significantly predict reporting of helpfulness for any category of resource, but caregivers reporting higher stress levels were more likely to report hands-on help (B = 0.24, SE = 0.10, p = .02), support with emotional stress (B = 0.42, SE = 0.13, p > .01) and support with family stress (B = 0.48, SE = 0.13, p < .01) would be helpful, compared to caregivers reporting lower stress levels.

4. Discussion and conclusion

4.1. Discussion

There is an overwhelming need to offer caregiver services [3,5,6]. However, there was high variability in which services were seen as most helpful, and some types of support may be interdependent. For example, financial support may be needed to engage hands-on help, and emotional stress may be tied to family stress. This suggests a potential benefit of integrated or wrap-around services.

The variability in endorsed resources is likely due to the diversity in existing resources available to caregivers [14], including the ability to navigate and access the patchwork of existing services. This may also intersect with social determinants of health [5]. Although specific needs may vary by care recipient condition, not assessed in this study, some work suggests that many elements of the caregiving experience and broader categories of caregiver needs are similar [15]. However, caregivers exist within unique social contexts and may have differing personal resiliency or availability of support from their informal networks [5,16]. Tellingly, we found that reported caregiver stress was a better predictor of finding most services to be helpful than amount of time spent caregiving. This echoes previous research that suggests that subjective burden may be a better predictor of poor quality of life outcomes than objective burden, and that finding meaning can protect caregivers from the psychological consequences that often accompany caregiving [17,18].

Although in contrast with research showing that rural caregivers often have greater need for support across domains [11], for most services except emotional support, we saw no differences in reported helpfulness of by rurality. Despite equal interest, rural caregivers often have less access to formal services and may be more likely to rely on informal support networks [10,19]. While telehealth holds some promise for expanding support to rural areas, there are limits to its helpfulness based on infrastructure, caregiver familiarity with technology, and services that can be offered virtually [20]. For example, virtual support groups or counselling can relatively easily deliver emotional support, rural caregivers may be reluctant to engage, perhaps due to shame and stigma [21], lack of familiarity with technology, or more pressing needs for other types of support, such as in-home help. Additional efforts to facilitate access to in-person services may be needed to ensure service equity for rural caregivers.

A relatively high percentage of caregivers indicated they didn't know if resources would be helpful. This may indicate a lack of familiarity with services, or a hesitation about their helpfulness. Navigation, coaching, or direct referral may be beneficial to help caregivers identify appropriate services that do exist within healthcare systems [22,23]. There also may be a specific need to develop tailored services to a growing group of younger caregivers. This group may need more financial assistance due to less experience navigating insurance and less accumulated income or wealth [24]. Similarly, younger caregivers may also have young children and/or be caring for parents, which can create stressful role conflict [25].

There are some limitations to the current study. While the wording and methodology is similar to national polls, a higher percentage of individuals in our study endorsed being a caregiver (57%), compared to 20% nationally [12]. Additionally, this work focuses on one state and our sample has limited racial/ethnic and socio-economic diversity. In this poll we assess what services are seen as helpful but are not able to determine service use. Additionally, factors beyond basic demographics assessed in this study, such as care recipient medical condition and care preferences, culture, and health literacy, may impact the perceived utility of services for caregivers [5].

4.2. Innovation

The focus of this manuscript offers a broad, novel focus on services for family caregivers. Often new programs are developed based on requirements made by payers or credentialling agencies or when a particular patient need is recognized. However, caregivers as “invisible patients” may not necessarily interact directly with healthcare systems in a way that would highlight their needs; similarly, to date few caregiver services are reimbursable or required for accreditation. As such, assessing population-level reports provides an innovative insight into this often-forgotten group. Our data suggest that health systems may need a wider array of services than currently are often offered [26], and that multiple or integrated services may be needed to support caregiver needs. Paradigm shifts in service delivery approaches are needed to meet National Strategy to Support Family Caregiver guidelines [7] and ensure family-centered care.

4.3. Conclusion

There is a need to provide more comprehensive resources for family caregivers in the US. While services do exist, they are often fragmented and there are barriers to caregiver engagement. Systems should recognize caregivers' varied needs and offer support in navigating available, tailored, resources.

Funding

This work was made possible by a grant from the Victoria Buffum Foundation and the University of Vermont Auxiliary Fund. The sponsors had no role in data analysis or manuscript development.

CRediT authorship contribution statement

Maija Reblin: Writing – review & editing, Writing – original draft, Supervision, Funding acquisition, Formal analysis, Conceptualization. Natalie Ambrose: Writing – review & editing, Visualization. Nina Pastore: Writing – review & editing, Visualization. Sarah Nowak: Writing – review & editing, Methodology, Formal analysis.

Declaration of competing interest

The authors declare that they have no conflicts of interest.

Data availability

Data is available upon reasonable request from corresponding author.