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Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. population-based study
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Patient Education and Counseling xxx (2019) xxx–xxx
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. population-based study Michelle A. Mollicaa,* , Ashley Wilder Smitha , Erin E. Kentb a b
National Cancer Institute, Division of Cancer Control and Population Sciences, Healthcare Delivery Research Program, USA Department of Health Policy and Management, Gillings School of Global Public Health University of North Carolina, Chapel Hill, USA
A R T I C L E I N F O
A B S T R A C T
Article history: Received 7 June 2019 Received in revised form 8 October 2019 Accepted 18 October 2019
Objective: To describe the type of care provided by a nationally-representative sample of informal caregivers, the frequency of unmet supportive care needs, and examine characteristics associated with unmet needs. Methods: Using data from the Health Information National Trends Survey, we identified caregivers of an adult care recipient. Descriptive statistics examined support provided by caregivers for activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and caregiver perceptions of their needs in five areas: medical/nursing tasks, accessing services, respite care, support groups, and counseling for caregivers. Bivariate statistics examined sociodemographic and caregiver characteristics associated with each need. Results: Among 316 caregivers, 30.9% reported at least one unmet supportive care need. Caregivers most often provided support for 0–2 ADLs and 5–7 IADLs. Younger age and longer duration of time caregiving were associated with unmet supportive care needs for medical/nursing training (p = 0.02 and 0.04, respectively). Caregivers providing assistance with more ADLs reported needs for respite care support (p=0.03). Conclusion: Subgroups of caregivers that may be most vulnerable with greater unmet supportive care needs are those that are younger, have provided care for longer, and those assisting with more ADLs. Future research should explore these factors to inform intervention development. Published by Elsevier B.V.
Keywords: Caregiving Health education Unmet needs HINTS
1. Introduction Informal caregivers are individuals who provide unpaid care and support for patients with a medical, behavioral, disability, or other condition(s). Approximately 39.8 million adults provide care for an adult with a chronic health condition [1]. Informal caregivers, many of whom are older adults themselves [2], provide essential support to their care recipients, including psychosocial support, direct provision of medical/nursing tasks, communication with healthcare professionals, and assistance with activities of daily living (ADLs). As treatment settings continue to shift from inpatient hospital stays to outpatient and home care, increased demands are often placed on caregivers to provide essential care and support [3–9]. Research demonstrates that higher burden
* Corresponding author at: National Cancer Institute, Division of Cancer Control and Population Sciences, Healthcare Delivery Research Program, Outcomes Research Branch, 9609 Medical Center Drive, MSC 9712, Room 3E436, Bethesda, MD, 20892-9762, USA. E-mail address: [email protected] (M.A. Mollica).
placed on caregivers results in worse caregiver well-being [10,11], which can in turn affect the capacity of the caregiver to provide quality support and negatively impact patient outcomes [12]. One way to help reduce burden for caregivers may be through appropriate training, education, and support. While it is possible that many caregivers are not receiving needed training, there is limited information on the tasks caregivers perform and their own supportive needs in specific areas, including medical/nursing skills training, accessing supportive care services, and receiving counseling. Most studies conducted on unmet supportive care needs of caregivers are conducted in caregivers of patients with only one condition (e.g., cancer, dementia) or studies that use convenience samples [13–15]. Two recent studies have shown that caregivers often don’t receive the training that they need [14,16], particularly for medical/nursing tasks such as managing symptoms, administering medication and changing bandages. Few studies provide nationally representative estimates that characterize the caregiving tasks and supportive care needs of family caregivers to drive future health system and policy change. While many caregivers may not experience stress from providing care [2], there is a need to identify the most vulnerable
https://doi.org/10.1016/j.pec.2019.10.015 0738-3991/Published by Elsevier B.V.
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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caregivers to inform future training, education, and supportive interventions, including identifying those with the greatest unmet supportive care needs. Therefore, the goal of this study was to understand the national landscape of unmet needs for caregivers to provide an evidence base for future hypothesis-driven studies and interventions. The objective of this study was to (1) describe the type of care and support provided by a nationally representative sample of informal caregivers of adults in the U.S.; (2) describe caregiver perceptions of unmet supportive care needs for training and support (e.g., medical/nursing tasks, help accessing services, respite care, support groups, and caregiver counseling); and (3) examine sociodemographic and caregiver characteristics associated with needs in each area. 2. Methods 2.1. Data source This study utilized data from the Health Information National Trends Survey (HINTS) 5, Cycle 2, a nationally representative crosssectional survey of non-institutionalized adults (18+) in the United States [17]. HINTS collects information from the general public on topics including perceptions and use of health-related information and information technology. HINTS 5 Cycle 2 survey administration occurred between January and May 2018 via mail based on a random sample of U.S. households. The survey included multiple non-response follow-ups, a pre-paid incentive at first mailing and express delivery to maximize the response rate. This study was deemed exempt by the National Cancer Institute Institutional Review Board; completion of the survey was considered implied consent. This cycle of HINTS yielded a total sample of 3504 respondents, with a response rate of 32.9%. Survey weights allow researchers to generalize results to the national population and compensate for non-response error. Additional information about data collection, including sampling frames and weighting methodologies, can be found elsewhere [18,19]. 2.2. HINTS caregiving module In addition to standard HINTS content, HINTS 5 Cycle 2 included an extended module focused on the experience and perceptions of respondents who act as caregivers. Questions include the time and duration spent providing care, care recipient condition, activities supported (ADLs and IADLs), extent of caregiver needs, and learning preferences. Caregiving questions were adapted versions of questions from the National Alliance for Caregiving Survey [2] and the Behavioral Risk Factor Surveillance System (BRFSS) Caregiver Module [20]. HINTS caregiver questions were tested with caregiver participants using cognitive interviewing prior to survey administration. Survey questions can be found on the HINTS website [21]. 2.3. Study population The purpose of this study was to examine care provided by and training and unmet supportive care needs of unpaid caregivers of adults in the U.S. As caregivers of pediatric patients could have markedly different supportive needs, we focused on caregivers of adults. Survey respondents were included in this study if they responded yes to a question asking, Are you currently caring for or making health care decisions for someone with a medical, behavioral, disability, or other conditions? We excluded those caring for a pediatric care recipient only (n = 127) [but did include those caring for more than one individual and at least one person was an adult] and excluded those that reported providing care professionally as part of a job (n = 41).
2.4. Key variables 2.4.1. Type of care and support provided by informal caregivers Caregivers were asked to select specific tasks that they provide support for as part of care they provided to the care recipient. These tasks were categorized into ADLs, IADLs, and other activities based on previously designated categories from the National Alliance for Caregiving [1]. ADLs included: getting in and out of beds and chairs, getting dressed, getting to and from the toilet, dealing with incontinence/diapers, bathing/ personal care, and feeding the care recipient. IADLs included preparing meals, managing finances, grocery or other shopping, housework, transportation, performing medical/nursing tasks (e.g., administering medications, pills, injections; wound care), and arranging for outside services. Additional activities included communicating with healthcare professionals, spending time with the care recipient, and providing companionship or emotional support. 2.4.2. Caregiver perceptions of their own unmet supportive care needs Respondents were asked to respond to questions about the type of support that they perceived needing and receiving for themselves. The question asked, Have you ever needed and/or received any of the following care support services? Types of training/ support included: training on how to perform medical/nursing tasks such as administering medicine, changing bandages, managing side effects or symptoms; help in getting access to services such as nurses, home care aides or other community services; short-term or long-term breaks for caregivers (respite care); support groups for caregivers; and individual counseling to help cope with providing care. In order to distinguish caregivers who perceived needing training or support in a specific area, responses to these questions were: did not need, received, or needed and not received. Those who responded with needed and not received to a specific training or support were deemed to have an unmet supportive care need in that area. 2.4.3. Caregiver and care recipient characteristics Additional variables analyzed include caregiver sociodemographic (age, gender, race/ethnicity, marital status, education level, occupational status) and caregiving characteristics (relationship to care recipient, residence of care recipient, duration [hours per week and length of time] providing care, condition of care recipient). Though respondents could report caring for multiple individuals, for subsequent questions caregivers were asked to consider the individual for whom they are currently providing the most care. Respondents could report multiple care recipient conditions among the following categories: (1) Cancer, (2) Alzheimer’s, confusion, dementia, forgetfulness; (3) Orthopedic/ musculoskeletal issues; (4) Mental health/behavioral/substance abuse issues; (5) Chronic conditions (e.g., high blood pressure, diabetes, heart disease, heart attack, lung disease, emphysema); (6) Neurological/developmental issues; (7) Acute conditions; (8) Aging/aging-related health issues not listed in previous categories; and (9) other conditions. Categorizations of all variables are provided in Tables 1 and 3. 2.5. Statistical analyses As the purpose of this study was to describe the type of care and extent of unmet supportive care needs reported, we conducted descriptive analyses to examine care provided by and supportive needs perceived by caregivers. Survey procedures were conducted using SAS version 9.4 (SAS Institute, Cary, NC), which allows for the incorporation of the jackknife replicate weights to estimate accurate population estimates [19]. Weighted
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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Table 1 Sample Characteristics. Characteristic
Frequency
Overall
316; Population estimate: 23,967,763
Age 18-49 50-64 65+
Weighted %
95% CI for %
70 130 116
38.8% 37.9% 23.3%
(30.6, 47.0) (30.3, 45.5) (17.5, 29.1)
Gender Female Male Missing
214 99 3
65.0% 34.0% 1.1%
(25.5, 42.5) (56.7, 73.2) (0, 3.0)
Race/ethnicity NH White NH African American Asian/Othera Hispanic
199 47 27 43
65.5% 11.6% 8.3% 14.6%
(57.9, 73.2) (6.8, 16.3) (4.0, 12.7) (8.1, 21.0)
Marital Status Married/partnered Not Married
208 108
69.7% 30.3%
(63.1, 76.4) (23.6, 36.9)
Education Level High school graduate or less Some college College grad or more
63 106 147
24.2% 46.7% 29.2%
(17.4, 30.9) (38.4, 55.1) (22.1, 36.2)
Occupational Status Employed/Student/Homemaker Unemployed/Disabled/Other Retired
173 45 98
63.8% 13.6% 22.6%
(56.8, 70.8) (8.5, 18.7) (16.7, 28.5)
Relationship of care recipient Spouse or partner only Parent/parents only Another family member or friend only Multiple relationships selected
82 125 67 42
22.4% 42.6% 7.9% 14.0%
(17.0, 27.7) (34.3, 50.9) (1.7, 20.1) (7.8, 20.2)
Condition of care recipientb Multiple conditions selected Alzheimer's/Dementia only Chronic condition or cancer only Other single conditions Don’t know
200 27 27 51 7
65.7% 8.3% 8.1% 16.3% 1.24
(57.9, 73.6) (4.3, 12.3) (4.6, 11.5) (10.1, 22.5) (0.1, 2.4)
Hours per week providing care <20 hrs per week 21 hrs per week Missing
187 78 51
59.7% 26.6% 13.7%
(51.9, 67.5) (19.5, 33.7) (8.5, 18.9)
Length of time providing care 2 years >2 years Missing
113 186 17
36.9% 60.2% 2.8%
(29.9, 44.0) (53.1, 67.4) (1.0, 4.7)
Residence of care recipient Cohabitating with caregiver Not cohabitating with caregiver Missing
151 150 15
57.5% 40.4% 2.1%
(48.6, 66.3) (48.6, 66.3) (0.6, 3.7)
NH = Non-Hispanic. a Asian/Other group includes: Asian American, Pacific Islander, American Indian/Alaska Native, and multiple races. b Condition of care recipient categories: Alzheimer’s, confusion, dementia, forgetfulness only; Chronic condition (e.g., high blood pressure, diabetes, heart disease, heart attack, lung disease, emphysema) or cancer only; Other single conditions (orthopedic issues, mental health/substance abuse issues, neurological issues, acute conditions, aging issues).
descriptive analyses (Wald chi-square tests) [22] identified unadjusted associations between sociodemographic and caregiver characteristics and each unmet supportive care need (medical/ nursing training, help getting access to services, respite care, caregiver support groups, and counseling). We utilized listwise deletion to handle missing data.
3. Results 3.1. Participant characteristics Of the 3504 HINTS respondents, 484 individuals reported providing some type of care. After excluding respondents caring for
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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a child or children only (n = 127), and those providing care professionally as part of their job (n = 41), the final cohort included 316 caregivers of adult care recipients, representing a population estimate of 23,967,763 (Standard Error = 1,508,463). The weighted sample was predominately Non-Hispanic White (65.5%; 95% Confidence Interval [CI] 57.9, 73.2), but racial/ethnic minority caregivers who were Hispanic (14.6%; 95% CI: 8.1, 21.0) and NonHispanic African American (11.6%; 95% CI: 6.8, 16.3) were well represented in the final cohort. In addition, there were similar weight proportions of 18–49 year-old caregivers as those ages 50-64. Most caregivers were married or partnered [self-defined response of living as married] (69.7%; 95% CI: 63.1, 76.4), employed (54.2%; 95% CI: 45.5, 63.0), and had some college (46.7%; 95% CI: 38.4, 55.1). Table 1 details participant characteristics. 3.2. Caregiving characteristics and types of care provided Most caregiver respondents were providing care for a parent (42.6%; 95% CI: 34.3, 50.9), and 14% (95% CI: 7.8, 20.2) of caregivers care for more than one care recipient. Most care recipients had multiple conditions (65.7%; 95% CI: 57.9, 73.6), with 8.3% (95%CI: 4.3, 12.3) reporting that their care recipient had Alzheimer’s or Dementia and 8.1% (95% CI: 4.6, 11.5) with another chronic condition or cancer. Care recipients most often lived in the same household as the caregiver (57.5%; 95% CI: 48.6, 66.3). Most caregivers reported providing care for less than 20 h per week (59.7%; 95% CI: 51.9, 67.5) but the majority have provided this care for longer than 2 years (60.2%; 95% CI: 53.1, 67.4). Caregivers provided a variety of support for ADLs, and most provided support for between 0–2 ADLs (79.5%; 95% CI: 73.4, 85.6). Of the ADLs, caregivers most often helped care recipients get in and out of beds and chairs (24.4%; 95% CI: 17.3, 31.5), with bathing/personal care (24.2%; 95% CI: 18.0, 30.3), and with getting dressed (20.2%; 95% CI: 14.5, 25.9) (Fig. 1). Caregivers also most often provided support for 5–7 IADLs (47.8%; 95% CI: 38.1, 57.5), with more than half of respondents helping to prepare meals (58.1%; 95% CI: 50.3, 65.8), manage finances (65.7%; 95% CI: 59.3, 72.1), grocery shop (70.4%; 95% CI: 63.4, 77.4), do housework (55.2%; 95% CI: 45.3, 65.1), or provide transportation (74.1%; 95% CI: 66.2, 82.0). In addition, 44.6% (95% CI: 36.7, 52.6) reported performing medical/ nursing tasks for their care recipient. Finally, the majority of caregivers report communicating with healthcare professionals on
behalf of their care recipient (74.1%; 95% CI: 67.4, 80.7), and spending time or providing companionship/emotional support for their care recipient (87.5%; 95% CI: 82.2, 92.8). 3.3. Unmet supportive care needs Approximately one third of respondents reported at least one unmet supportive care need across all areas (30.9; 95% CI: 22.5, 39.4). Table 2 details frequencies of each supportive care area. Among the sample of caregivers, approximately 20% needed but did not receive help getting access to services (19.2%; 95%CI: 12.2, 26.2), respite care (20.4%; 95% CI: 13.9, 27.0), caregiver support groups (19.5%; 95% CI: 12.5, 26.5), or individual counseling to help cope with providing care (20.2%; 95% CI: 13.4, 27.1). Slightly less caregivers reported needing but not receiving training on how to perform medical/nursing tasks (13.2%; 95% CI: 6.8, 19.6). We examined unadjusted chi-squared associations between caregiver characteristics and reports on unmet needs in each supportive care area (medical/nursing training, accessing help, respite care, support groups, and counseling to cope with providing care). Results showed a significant difference for needs in medical/nursing training by caregiver characteristics including age (p = 0.04), race/ethnicity (p = 0.048), duration of caregiving (p = 0.02), and number of ADLs performed (p = 0.048) (Table 3). A greater proportion of caregivers ages 18–49 (15.7%; 95% CI: 3.8, 27.5) and 50–65 (14.5%; 95% CI: 5.7, 23.2) needed but did not receive medical/nursing training as compared with caregivers 65 years of age and older (8.5%; 95% CI: 1.1, 15.9). A greater proportion of those in the Asian/Other group reported needing and not receiving medical/nursing training (38.6%; 95% CI: 2.3, 74.9) than other race/ethnicities. In addition, those providing care for more than 2 years (17%; 95% CI: 6.5, 27.5) reported that they needed but did not receive medical/nursing training more than those providing care for less than 2 years (8.7%; 95% CI: 2.2, 15.2). Finally, a greater proportion of those providing support for 3–4 ADLs reported that they needed but did not receive medical/ nursing training (27.8%; 95% CI: 4.5, 51.0) than those providing support for 0–2 ADLs (11.2%; 95% CI: 4.6, 17.8) or 5–6 ADLs (10.4%; 95% CI: 0.1, 28.4). Results also indicated significant differences in caregivers reporting help in getting access to services such as nurses, home
Fig. 1. ADL and IADL tasks provided by caregivers (Weighted Proportion; 95% Confidence Interval [CI]).
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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Table 2 . Training and support received by caregivers. Type of support
Received
Did not need
Needed but not received
Training on how to perform med/nursing tasks
N 80
Weighted % 26.9%
95% CI (20.0, 33.7)
N 185
Weighted % 56.8%
95% CI (49.2, 64.3)
N 34
Weighted % 13.2%
95% CI (6.8, 19.6)
Help getting access to services
82
23.2%
(16.8, 29.7)
161
54.7%
(46.3, 63.2)
55
19.2%
(12.2, 26.2)
Short-term or long-term breaks (respite care)
40
10.9%
(6.7, 15.2)
188
64.4%
(57.9, 70.9)
65
20.4%
(13.9, 27.0)
Support groups for caregivers
26
10.6%
(5.0, 16.2)
206
66.1%
(58.1, 74.1)
62
19.5%
(12.5, 26.5)
Individual counseling to help cope with giving care
32
10.9%
(5.7, 16.1)
199
65.3%
(57.8, 72.8)
64
20.2%
(13.4, 27.1)
care aides, Meals on Wheels or other community services by race/ ethnicity (p = 0.03), residence of the care recipient (p = 0.03), and number of ADLs performed (p = 0.0002). A greater proportion of respondents in the Asian/Other group (50%; 95% CI: 19.6, 82.1) reported needing but not receiving help accessing such services compared with other race/ethnicities, as did caregivers not cohabitating with their care recipient (21.5%; 95% CI: 11.3, 32.4). In addition, more caregivers who provided support for 3–4 ADLs reported needing and not receiving help accessing services (26.2%; 95% CI: 6.6, 45.8) compared with those who performed 0–2 and 5–6 ADLs. We found a significant association between number of ADLs supported and needing but not receiving respite care. A greater proportion of caregivers supporting 5–6 ADLs reported that they needed but did not receive respite care support (30.9%; 95% CI: 0.1, 61.8) than those providing support for a lower number of ADLs. We did not find significant differences between caregiving characteristics and reported unmet supportive care needs for support groups or counseling. Characteristics which were not significantly associated with any of the supportive care areas were gender, marital status, education, occupational status, relationship to care recipient, condition of care recipient, hours per week providing care, or number of IADLs supported. 4. Discussion and conclusion 4.1. Discussion This study describes the prevalence of tasks provided and unmet supportive care needs reported directly from caregivers of adults with serious chronic illnesses in a nationally-representative sample. Results support and extend previous findings on caregiver burden and unmet needs in single diseases and convenience samples [4,6,7,16,23]. It provides the foundation for identifying the most vulnerable caregivers in greatest need of support. We found that over sixty-five percent of caregivers were caring for recipients have more than one condition, and sixty percent had been providing care for more than 2 years. Caregivers often provide support for multiple ADLs, IADLs, and also communicate with healthcare providers and provide emotional support/companionship for their care recipient. These results parallel reports such as the National Alliance of Caregiving’s 2015 report, Caregiving in the U.S. [1], which found that many caregivers monitored health of the care recipient, communicated with healthcare professionals, and advocated with providers, services, and agencies. Although more than half of caregivers in this study reported that they did not need support in all five supportive care areas (medical/nursing training, help accessing services, respite care, support groups, and caregiver counseling), almost one third of caregivers in the current study did report an unmet supportive care
need in one of the five areas. It is critical to attend to the unmet needs of caregivers, as previous studies have demonstrated the impact of caregiver needs on care recipient well-being and outcomes. Studies of cancer caregivers with unmet needs demonstrate associations between support service needs and a greater number of mentally unhealthy days [24], as well as increased burden [14]. In addition, while a growing number of interventions have been developed to address the burden placed on caregivers [25–29], most are focused on providing psychosocial/ emotional support for caregivers and do not provide support for areas including ways to access help such as nurses, home care aides, Meals on Wheels or other community services. In addition, with almost 75% of respondents in our study reporting that they communicate with healthcare professionals on behalf of their care recipient, education to navigate the complex healthcare system and coordinate care is sorely needed. Caregivers reported unmet supportive care needs in several areas, with approximately 20% reporting not receiving support for help getting access to services, respite care, support groups, and individual counseling. Results did indicate that a lower proportion of caregivers reported needing but not receiving medical/nursing training, though 13.2% of caregivers did not receive such training. As previous research indicates that lack of receipt of medical/ nursing training is associated with greater levels of caregiver burden [14], our results present potential opportunities for intervention at multiple levels through patient-, provider-, and healthcare system-level efforts, as well as policy-level reimbursement for training. It was clear that unmet supportive care needs differed based on several caregiver characteristics, but that these associations varied by supportive care area. These results suggest that a “one-size fit all” approach may not be appropriate, and that there is a need to further investigate factors that might confound the relationship between level of support provided and unmet needs. We highlight notable findings below. Results indicated that not receiving medical/nursing training was associated with factors including younger age, race/ethnicity, and number of ADLs. A greater proportion of caregivers ages 18–49 and 50–65 reported needing but not receiving medical/nursing training as compared with older caregivers. It is possible that older adult caregivers interact with the healthcare system more often and therefore have greater opportunities for training, though this hypothesis warrants exploration. In addition, caregivers who assisted with 3–4 ADLs were more likely to report not receiving medical/nursing training and help accessing services than those assisting with a higher or lower number of ADLs. While it is likely that healthcare providers are more attuned to the needs of caregivers who provide greater support, there is a paucity of literature supporting this hypothesis. Regardless, these results warrant future exploration and suggest that a systematic
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
Caregiver-reported Unmet Needs Medical/Nursing Training
Accessing Help
Respite Care
Support Groups
Counseling
Row % 15.7 14.5 8.5
95% CI (3.8, 27.5) (5.7, 23.2) (1.1, 15.9)
p* 0.04
Row % 20.4 20.3 17.6
95% CI (8.4, 32.5) (10.2, 30.4) (7.7, 27.6)
p* 0.76
Row % 17.7 24 23.4
95% CI (6.4, 29.0) (13.2, 34.8) (8.3, 38.5)
p* 0.52
Row % 23.4 17.9 18.8
95% CI (9.8, 27.7) (8.3, 27.4) (8.0, 29.7)
p* 0.53
Row % 22.1 19.5 21.5
95% CI (8.7, 35.6) (9.9, 29.0) (11.1, 31.8)
p* 0.58
Gender Male Female
10.1 15.7
(2.6, 17.6) (6.3, 25.0)
0.61
13.7 21.8
(3.3, 24.1) (12.5, 31.1)
0.53
18.7 21.6
(6.0, 31.4) (12.0, 31.1)
0.9
14.1 22.4
(5.3, 22.9) (12.4, 32.3)
0.48
16.9 22
(7.8, 25.9) (11.9, 32.1)
0.69
Race/ethnicity NH White NH African American Asian/Other Hispanic/Latino
11.7 10.8 38.6 10.5
(4.0, 19.3) (0.1, 26.5) (2.3, 74.9) (0.6, 20.3)
0.048
17.1 16.6 50.9 16.6
(9.8, 24.3) (0.1, 33.8) (19.6, 82.1) (1.6, 31.5)
0.03
20.4 12.5 47.2 17.4
(12.7, 28.2) (0.1, 28.4) (15.1, 79.3) (2.1, 32.6)
0.66
18.1 16.9 40.9 21.1
(10.5, 25.7) (0.1, 34.9) (7.9, 73.9) (5.1, 37.1)
0.61
17.8 20.3 43.4 22.9
(10.7, 24.9) (1.6, 39.1) (7.7, 79.2) (6.9, 38.9)
0.44
Marital Status Married/partnered Other
12.2 17
(5.8, 18.6) (1.3, 32.6)
0.85
21.4 15.9
(12.8, 30.0) (3.6, 28.1)
0.71
23 17.5
(14.9, 31.1) (4.3, 30.7)
0.46
20.6 19.5
(12.2, 29.0) (6.1, 32.9)
0.96
20.2 22.7
(11.4, 29.0) (9.3, 36.2)
0.95
Education HS Grad or less Some college College grad
11.5 14.2 14.5
(0.1, 24.0) (2.3, 26.1) (5.2, 23.7)
0.74
11.4 23.8 20.1
(2.2, 20.6) (10.2, 37.4) (10.1, 30.1)
0.19
13.2 27 18.9
(0.3, 26.0) (14.6, 39.4) (9.1, 28.6)
0.52
8.4 24.2 23.8
(0.1, 18.5) (12.1, 36.3) (12.8, 34.8)
0.16
16.3 21.4 24.2
(1.6, 31.1) (10.4, 32.3) (11.3, 37.2)
0.84
Occupational Status Employed/Student/Homemaker Unemployed/Disabled/Other Retired
15.7 16.5 6
(6.2, 25.1) (3.8, 29.1) (0.4, 11.6)
0.13
17.4 38.3 15.9
(8.3, 26.4) (14.5, 62.2) (6.7, 25.1)
0.13
19.2 30.8 22.3
(10.6, 27.7) (7.1, 54.6) (8.2, 36.4)
0.79
21.3 24.6 14.9
(11.6, 30.9) (1.5, 47.7) (5.9, 23.9)
0.73
20 30.3 18.2
(10.0, 30.0) (8.8, 51.8) (8.8, 27.6)
0.29
Relationship to care recipient Spouse Other than spouse
13 13.9
(4.3, 21.7) (5.3, 22.4)
0.48
20.6 19.4
(9.7, 31.4) (9.8, 29.1)
0.06
30.6 17.7
(14.9, 46.4) (9.5, 25.9)
0.11
22.3 19.5
(10.1, 34.5) (10.2, 28.8)
0.94
27.4 18.5
(13.3, 41.5) (9.4, 27.5)
0.57
Condition of care recipient Multiple conditions Alzheimer's or Dementia only Chronic condition or cancer only Other single conditions
12.2 22.6 26.4 9.3
(4.3, 20.1) (0.1, 55.7) (0.1, 53.8) (0.1, 20.5)
0.15
19.8 15.6 38.3 13.7
(11.1, 28.6) (0.1, 35.9) (11.7, 64.9) (0.9, 26.4)
0.23
22.2 12.1 38.3 15.1
(14.8, 29.6) (0.1, 27.2) (11.7, 64.9) (1.1, 29.0)
0.35
21.5 12.2 31.2 11.4
(14.6, 28.4) (0.1, 28.6) (4.4, 58.0) (0.1, 23.3)
0.70
19.1 23.9 31.9 22.8
(13.0, 25.1) (0.1, 57.9) (5.2, 58.6) (6.2, 39.3)
0.60
Hours per week providing care <20 hrs per week > = 21 hrs per week
15.7 9.5
(5.6, 25.7) (0.1, 20.2)
0.73
22.9 12.1
(12.9, 32.8) (2.3, 21.9)
0.27
23.9 16.6
(15.3, 32.5) (6.8, 26.5)
0.22
26.4 10.9
(16.9, 36.0) (3.0, 18.8)
0.1
25.6 14
(16.0, 35.2) (1.8, 26.1)
0.14
Length of time providing care Less than 2 yrs More than 2 yrs
8.7 17
(2.2, 15.2) (6.5, 27.5)
0.02
15.6 21.7
(7.8, 40.7) (11.0, 32.5)
0.36
13.7 25.4
(6.2, 21.3) (15.0, 35.9)
0.10
15.7 23.5
(5.1, 26.4) (13.3, 33.6)
0.59
16.8 24
(6.6, 73.5) (14.8, 33.2)
0.45
Residence of care recipient Cohabitating with caregiver Not cohabitating with caregiver
12.4 15.7
(2.1, 22.7) (5.2, 26.2)
0.07
18.5 21.8
(8.0, 29.0) (11.3, 32.4)
0.01
22.1 20.7
(10.8, 33.3) (11.3, 30.1)
0.96
19 22.4
(8.3, 29.7) (12.7, 32.3)
0.74
17.2 26.4
(8.0, 26.3) (15.4, 37.5)
0.26
Number of ADLs performed 0–2 ADLs 3–4 ADLs
11.2 27.8
(4.6, 17.8) (4.5, 51.0)
0.048
18.6 26.2
(10.6, 26.5) (6.6, 45.8)
0.002
20.7 20.6
(13.5, 28.0) (0.8, 70.4)
0.03
20.2 24.6
(12.5, 27.9) (4.4, 44.9)
0.80
20.9 24.6
(13.3, 28.5) (1.3, 47.9)
0.28
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Age 18–49 50–64 65+
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Table 3 Weighted percentages of unmet need reported by caregivers and unadjusted bivariate associations between caregiving characteristics and specific unmet supportive care needs.a .
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(10.3, 43.7) (0.6, 24.9) (13.3, 29.6) 27 12.7 21.5 (6.1, 31.5) (1.5, 27.6) (13.9, 33.7) 18.8 14.6 23.8 NH = Non-Hispanic. DK = Don’t know. ADL = Activities of Daily Living. IADL = Instrumental Activities of Daily Living. a Unmet supportive care needs are those reported by caregivers as having needed but not received training in the specified areas. * p value corresponds to Wald chi-square test; Wald F test adjusted for sampling weights.
(7.6, 31.9) (2.0, 18.4) (17.3, 37.7) 19.8 10.2 27.5 0.69 (8.6, 32.0) (0.9, 27.0) (11.8, 32.6) 18 7.5 14 Number of IADLs performed 0–2 IADLs 3–4 IADLs 5–7 IADLs
(4.9, 31.2) (0.6, 14.4) (3.4, 24.6)
0.06
20.3 13.9 22.2
(0.1, 42.8) 20 (0.1, 28.4) 10.4 5–6 ADLs
Caregiver-reported Unmet Needs
30.9
(0.1, 61.8)
0.11
11.2
(0.1, 27.8)
0.82
13.6
(0.1, 30.3)
0.61
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assessment and tailoring of interventions may be needed for all caregivers. Caregiving characteristics associated with unmet supportive care needs for help accessing services included residence of the care recipient, race/ethnicity, and number of ADLs performed. Caregivers who did not cohabitate with their care recipients reported needing but not receiving help accessing services such as nurses, home care aides, Meals on Wheels, or other community services. This was the only unmet supportive care need that was associated with residence of the care recipient, which could be related to the nature of such services. Previous research indicates that living arrangements between caregivers and care recipients may be associated with quality of life, psychological distress, and caregiver burden [30,31]. As an increasing number of caregivers are providing support at a distance from their care recipient, there is a need for future research on their unique supportive care needs. Our study also indicates that those who are supporting a greater number of ADLs more often report needing but not receiving respite care than those assisting with less ADLs. Respite care provides an alternative care arrangement so that caregivers can have a break from their care responsibilities, which could be particularly of need for those providing greater support. Although there are many advantages of respite care, research on these services is difficult in community settings where caregivers provide their care [32]. As increasing demands are placed on caregivers to provide continuous care for the care recipient, respite care may be an effective strategy to prevent caregiver burnout. Prior to implementing interventions, however, further examination of the role of caregiving characteristics on receipt of respite care in diverse care settings is needed. Significant differences in caregiver unmet supportive care needs by race/ethnicity also warrant further exploration. Results indicated that a greater number of caregivers in the Asian/Other group reported needing but not receiving medical/nursing training and help accessing services, as compared with caregivers reporting other race/ethnicities. As this group includes those who report their race as Asian American, Pacific Islander, American Indian/ Alaska Native, and multiple races, there could be substantial variability among members of this ‘other’ group. Though potential reasons for greater unmet supportive care needs in this group could be due to differences in cultural norms related to asking for help and access to the healthcare system [33], future research should explore differences in unmet needs by these specific racial/ ethnic groups in an adequately powered study. Finally, although our study did not indicate differences in unmet needs by disease/condition of the care recipient, acuity and severity of disease may play a role in caregiver unmet needs. Previous studies of cancer caregivers report substantial unmet needs [14,16,24], particularly in areas including help accessing services and training with medical/nursing tasks, while caregivers of patients with strokes and dementia often report unmet informational support needs [34,35]. Our nationally-representative sample included a high proportion of caregivers supporting patients with multiple conditions. As previous work has focused on caregivers of patients with single conditions, an in-depth examination of the unique unmet needs for caregivers of patients with multiple diseases is needed. 4.2. Limitations The results of our study should be considered in light of certain caveats. First, although the HINTS survey is fielded in a nationallyrepresentative sample, the sample of caregivers in this study may not fully represent all U.S. caregivers, and the small sample size may have limited external validity with the larger population of caregivers, as those who completed this survey may be healthier, younger, and more
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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often caring for an individual rather than a spouse than those who did not. The moderate response rate for this cycle of the HINTS survey also could limit generalizability, but survey weights allow researchers greater ability to compensate for non-response error. In addition, the purpose of this study was to explore and identify salient factors that may be associated with unmet supportive care needs for caregivers. Our intention was to provide a description of the national landscape of the needs of caregivers, including identification of factors associated with unmet supportive care needs. As such, we limited our analyses to descriptive statistics to lay the groundwork for future studies powered to explore hypotheses related to the associations we found. In addition, the survey allowed respondents to select multiple unmet needs, and were not given the opportunity to prioritize. It is possible that differences in priorities may exist based on caregiver characteristics, and future research examine prioritization of unmet needs to support future tailoring of interventions. We were also unable to include additional questions related to the care recipient age and other characteristics due to lack of available questions on the HINTS survey. It is possible that these characteristics may also play a role in unmet supportive care needs for caregivers and are a potential area for future study. Finally, this study describes unmet supportive needs from the perspective of caregiver respondents, and caregivers may or may not be aware of services that could benefit them. Measurement of caregiver unmet needs and burden, however, has primarily focused on the identification of problems experienced by caregivers [36], and not the extent to which caregivers perceive that they require help with these issues. Asking caregivers directly about the issues with which they need assistance can help clinicians to focus on the needs of individual caregivers and achieve optimal well-being. It can also assist healthcare providers and researchers to identify caregivers who experience higher levels of unmet needs and require greater support. 4.3. Conclusions In summary, we found that caregivers are providing substantial care for care recipient, and one-third of respondents report at least one unmet need. Our findings are a first step to identifying vulnerable caregivers with the greatest unmet needs. The availability of caregiving items in HINTS 5 survey data allows for a unique opportunity to provide population-based estimates for caregivers across conditions. Researchers and clinicians should collaborate to incorporate the assessment and tailoring of training and supportive interventions to provide the necessary support for caregivers across the U.S. Disclaimers The article was prepared as part of the authors’ (MAM, AWS, EEK) official duties as employees of the US Federal Government. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute. This study has not been previously presented. I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story. CRediT authorship contribution statement Michelle A. Mollica: Conceptualization, Methodology, Formal analysis, Writing - original draft. Ashley Wilder Smith: Conceptualization, Writing - review & editing. Erin E. Kent: Conceptualization, Writing - review & editing.
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Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. population-based study Michelle A. Mollicaa,* , Ashley Wilder Smitha , Erin E. Kentb a b
National Cancer Institute, Division of Cancer Control and Population Sciences, Healthcare Delivery Research Program, USA Department of Health Policy and Management, Gillings School of Global Public Health University of North Carolina, Chapel Hill, USA
A R T I C L E I N F O
A B S T R A C T
Article history: Received 7 June 2019 Received in revised form 8 October 2019 Accepted 18 October 2019
Objective: To describe the type of care provided by a nationally-representative sample of informal caregivers, the frequency of unmet supportive care needs, and examine characteristics associated with unmet needs. Methods: Using data from the Health Information National Trends Survey, we identified caregivers of an adult care recipient. Descriptive statistics examined support provided by caregivers for activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and caregiver perceptions of their needs in five areas: medical/nursing tasks, accessing services, respite care, support groups, and counseling for caregivers. Bivariate statistics examined sociodemographic and caregiver characteristics associated with each need. Results: Among 316 caregivers, 30.9% reported at least one unmet supportive care need. Caregivers most often provided support for 0–2 ADLs and 5–7 IADLs. Younger age and longer duration of time caregiving were associated with unmet supportive care needs for medical/nursing training (p = 0.02 and 0.04, respectively). Caregivers providing assistance with more ADLs reported needs for respite care support (p=0.03). Conclusion: Subgroups of caregivers that may be most vulnerable with greater unmet supportive care needs are those that are younger, have provided care for longer, and those assisting with more ADLs. Future research should explore these factors to inform intervention development. Published by Elsevier B.V.
Keywords: Caregiving Health education Unmet needs HINTS
1. Introduction Informal caregivers are individuals who provide unpaid care and support for patients with a medical, behavioral, disability, or other condition(s). Approximately 39.8 million adults provide care for an adult with a chronic health condition [1]. Informal caregivers, many of whom are older adults themselves [2], provide essential support to their care recipients, including psychosocial support, direct provision of medical/nursing tasks, communication with healthcare professionals, and assistance with activities of daily living (ADLs). As treatment settings continue to shift from inpatient hospital stays to outpatient and home care, increased demands are often placed on caregivers to provide essential care and support [3–9]. Research demonstrates that higher burden
* Corresponding author at: National Cancer Institute, Division of Cancer Control and Population Sciences, Healthcare Delivery Research Program, Outcomes Research Branch, 9609 Medical Center Drive, MSC 9712, Room 3E436, Bethesda, MD, 20892-9762, USA. E-mail address: [email protected] (M.A. Mollica).
placed on caregivers results in worse caregiver well-being [10,11], which can in turn affect the capacity of the caregiver to provide quality support and negatively impact patient outcomes [12]. One way to help reduce burden for caregivers may be through appropriate training, education, and support. While it is possible that many caregivers are not receiving needed training, there is limited information on the tasks caregivers perform and their own supportive needs in specific areas, including medical/nursing skills training, accessing supportive care services, and receiving counseling. Most studies conducted on unmet supportive care needs of caregivers are conducted in caregivers of patients with only one condition (e.g., cancer, dementia) or studies that use convenience samples [13–15]. Two recent studies have shown that caregivers often don’t receive the training that they need [14,16], particularly for medical/nursing tasks such as managing symptoms, administering medication and changing bandages. Few studies provide nationally representative estimates that characterize the caregiving tasks and supportive care needs of family caregivers to drive future health system and policy change. While many caregivers may not experience stress from providing care [2], there is a need to identify the most vulnerable
https://doi.org/10.1016/j.pec.2019.10.015 0738-3991/Published by Elsevier B.V.
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caregivers to inform future training, education, and supportive interventions, including identifying those with the greatest unmet supportive care needs. Therefore, the goal of this study was to understand the national landscape of unmet needs for caregivers to provide an evidence base for future hypothesis-driven studies and interventions. The objective of this study was to (1) describe the type of care and support provided by a nationally representative sample of informal caregivers of adults in the U.S.; (2) describe caregiver perceptions of unmet supportive care needs for training and support (e.g., medical/nursing tasks, help accessing services, respite care, support groups, and caregiver counseling); and (3) examine sociodemographic and caregiver characteristics associated with needs in each area. 2. Methods 2.1. Data source This study utilized data from the Health Information National Trends Survey (HINTS) 5, Cycle 2, a nationally representative crosssectional survey of non-institutionalized adults (18+) in the United States [17]. HINTS collects information from the general public on topics including perceptions and use of health-related information and information technology. HINTS 5 Cycle 2 survey administration occurred between January and May 2018 via mail based on a random sample of U.S. households. The survey included multiple non-response follow-ups, a pre-paid incentive at first mailing and express delivery to maximize the response rate. This study was deemed exempt by the National Cancer Institute Institutional Review Board; completion of the survey was considered implied consent. This cycle of HINTS yielded a total sample of 3504 respondents, with a response rate of 32.9%. Survey weights allow researchers to generalize results to the national population and compensate for non-response error. Additional information about data collection, including sampling frames and weighting methodologies, can be found elsewhere [18,19]. 2.2. HINTS caregiving module In addition to standard HINTS content, HINTS 5 Cycle 2 included an extended module focused on the experience and perceptions of respondents who act as caregivers. Questions include the time and duration spent providing care, care recipient condition, activities supported (ADLs and IADLs), extent of caregiver needs, and learning preferences. Caregiving questions were adapted versions of questions from the National Alliance for Caregiving Survey [2] and the Behavioral Risk Factor Surveillance System (BRFSS) Caregiver Module [20]. HINTS caregiver questions were tested with caregiver participants using cognitive interviewing prior to survey administration. Survey questions can be found on the HINTS website [21]. 2.3. Study population The purpose of this study was to examine care provided by and training and unmet supportive care needs of unpaid caregivers of adults in the U.S. As caregivers of pediatric patients could have markedly different supportive needs, we focused on caregivers of adults. Survey respondents were included in this study if they responded yes to a question asking, Are you currently caring for or making health care decisions for someone with a medical, behavioral, disability, or other conditions? We excluded those caring for a pediatric care recipient only (n = 127) [but did include those caring for more than one individual and at least one person was an adult] and excluded those that reported providing care professionally as part of a job (n = 41).
2.4. Key variables 2.4.1. Type of care and support provided by informal caregivers Caregivers were asked to select specific tasks that they provide support for as part of care they provided to the care recipient. These tasks were categorized into ADLs, IADLs, and other activities based on previously designated categories from the National Alliance for Caregiving [1]. ADLs included: getting in and out of beds and chairs, getting dressed, getting to and from the toilet, dealing with incontinence/diapers, bathing/ personal care, and feeding the care recipient. IADLs included preparing meals, managing finances, grocery or other shopping, housework, transportation, performing medical/nursing tasks (e.g., administering medications, pills, injections; wound care), and arranging for outside services. Additional activities included communicating with healthcare professionals, spending time with the care recipient, and providing companionship or emotional support. 2.4.2. Caregiver perceptions of their own unmet supportive care needs Respondents were asked to respond to questions about the type of support that they perceived needing and receiving for themselves. The question asked, Have you ever needed and/or received any of the following care support services? Types of training/ support included: training on how to perform medical/nursing tasks such as administering medicine, changing bandages, managing side effects or symptoms; help in getting access to services such as nurses, home care aides or other community services; short-term or long-term breaks for caregivers (respite care); support groups for caregivers; and individual counseling to help cope with providing care. In order to distinguish caregivers who perceived needing training or support in a specific area, responses to these questions were: did not need, received, or needed and not received. Those who responded with needed and not received to a specific training or support were deemed to have an unmet supportive care need in that area. 2.4.3. Caregiver and care recipient characteristics Additional variables analyzed include caregiver sociodemographic (age, gender, race/ethnicity, marital status, education level, occupational status) and caregiving characteristics (relationship to care recipient, residence of care recipient, duration [hours per week and length of time] providing care, condition of care recipient). Though respondents could report caring for multiple individuals, for subsequent questions caregivers were asked to consider the individual for whom they are currently providing the most care. Respondents could report multiple care recipient conditions among the following categories: (1) Cancer, (2) Alzheimer’s, confusion, dementia, forgetfulness; (3) Orthopedic/ musculoskeletal issues; (4) Mental health/behavioral/substance abuse issues; (5) Chronic conditions (e.g., high blood pressure, diabetes, heart disease, heart attack, lung disease, emphysema); (6) Neurological/developmental issues; (7) Acute conditions; (8) Aging/aging-related health issues not listed in previous categories; and (9) other conditions. Categorizations of all variables are provided in Tables 1 and 3. 2.5. Statistical analyses As the purpose of this study was to describe the type of care and extent of unmet supportive care needs reported, we conducted descriptive analyses to examine care provided by and supportive needs perceived by caregivers. Survey procedures were conducted using SAS version 9.4 (SAS Institute, Cary, NC), which allows for the incorporation of the jackknife replicate weights to estimate accurate population estimates [19]. Weighted
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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Table 1 Sample Characteristics. Characteristic
Frequency
Overall
316; Population estimate: 23,967,763
Age 18-49 50-64 65+
Weighted %
95% CI for %
70 130 116
38.8% 37.9% 23.3%
(30.6, 47.0) (30.3, 45.5) (17.5, 29.1)
Gender Female Male Missing
214 99 3
65.0% 34.0% 1.1%
(25.5, 42.5) (56.7, 73.2) (0, 3.0)
Race/ethnicity NH White NH African American Asian/Othera Hispanic
199 47 27 43
65.5% 11.6% 8.3% 14.6%
(57.9, 73.2) (6.8, 16.3) (4.0, 12.7) (8.1, 21.0)
Marital Status Married/partnered Not Married
208 108
69.7% 30.3%
(63.1, 76.4) (23.6, 36.9)
Education Level High school graduate or less Some college College grad or more
63 106 147
24.2% 46.7% 29.2%
(17.4, 30.9) (38.4, 55.1) (22.1, 36.2)
Occupational Status Employed/Student/Homemaker Unemployed/Disabled/Other Retired
173 45 98
63.8% 13.6% 22.6%
(56.8, 70.8) (8.5, 18.7) (16.7, 28.5)
Relationship of care recipient Spouse or partner only Parent/parents only Another family member or friend only Multiple relationships selected
82 125 67 42
22.4% 42.6% 7.9% 14.0%
(17.0, 27.7) (34.3, 50.9) (1.7, 20.1) (7.8, 20.2)
Condition of care recipientb Multiple conditions selected Alzheimer's/Dementia only Chronic condition or cancer only Other single conditions Don’t know
200 27 27 51 7
65.7% 8.3% 8.1% 16.3% 1.24
(57.9, 73.6) (4.3, 12.3) (4.6, 11.5) (10.1, 22.5) (0.1, 2.4)
Hours per week providing care <20 hrs per week 21 hrs per week Missing
187 78 51
59.7% 26.6% 13.7%
(51.9, 67.5) (19.5, 33.7) (8.5, 18.9)
Length of time providing care 2 years >2 years Missing
113 186 17
36.9% 60.2% 2.8%
(29.9, 44.0) (53.1, 67.4) (1.0, 4.7)
Residence of care recipient Cohabitating with caregiver Not cohabitating with caregiver Missing
151 150 15
57.5% 40.4% 2.1%
(48.6, 66.3) (48.6, 66.3) (0.6, 3.7)
NH = Non-Hispanic. a Asian/Other group includes: Asian American, Pacific Islander, American Indian/Alaska Native, and multiple races. b Condition of care recipient categories: Alzheimer’s, confusion, dementia, forgetfulness only; Chronic condition (e.g., high blood pressure, diabetes, heart disease, heart attack, lung disease, emphysema) or cancer only; Other single conditions (orthopedic issues, mental health/substance abuse issues, neurological issues, acute conditions, aging issues).
descriptive analyses (Wald chi-square tests) [22] identified unadjusted associations between sociodemographic and caregiver characteristics and each unmet supportive care need (medical/ nursing training, help getting access to services, respite care, caregiver support groups, and counseling). We utilized listwise deletion to handle missing data.
3. Results 3.1. Participant characteristics Of the 3504 HINTS respondents, 484 individuals reported providing some type of care. After excluding respondents caring for
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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a child or children only (n = 127), and those providing care professionally as part of their job (n = 41), the final cohort included 316 caregivers of adult care recipients, representing a population estimate of 23,967,763 (Standard Error = 1,508,463). The weighted sample was predominately Non-Hispanic White (65.5%; 95% Confidence Interval [CI] 57.9, 73.2), but racial/ethnic minority caregivers who were Hispanic (14.6%; 95% CI: 8.1, 21.0) and NonHispanic African American (11.6%; 95% CI: 6.8, 16.3) were well represented in the final cohort. In addition, there were similar weight proportions of 18–49 year-old caregivers as those ages 50-64. Most caregivers were married or partnered [self-defined response of living as married] (69.7%; 95% CI: 63.1, 76.4), employed (54.2%; 95% CI: 45.5, 63.0), and had some college (46.7%; 95% CI: 38.4, 55.1). Table 1 details participant characteristics. 3.2. Caregiving characteristics and types of care provided Most caregiver respondents were providing care for a parent (42.6%; 95% CI: 34.3, 50.9), and 14% (95% CI: 7.8, 20.2) of caregivers care for more than one care recipient. Most care recipients had multiple conditions (65.7%; 95% CI: 57.9, 73.6), with 8.3% (95%CI: 4.3, 12.3) reporting that their care recipient had Alzheimer’s or Dementia and 8.1% (95% CI: 4.6, 11.5) with another chronic condition or cancer. Care recipients most often lived in the same household as the caregiver (57.5%; 95% CI: 48.6, 66.3). Most caregivers reported providing care for less than 20 h per week (59.7%; 95% CI: 51.9, 67.5) but the majority have provided this care for longer than 2 years (60.2%; 95% CI: 53.1, 67.4). Caregivers provided a variety of support for ADLs, and most provided support for between 0–2 ADLs (79.5%; 95% CI: 73.4, 85.6). Of the ADLs, caregivers most often helped care recipients get in and out of beds and chairs (24.4%; 95% CI: 17.3, 31.5), with bathing/personal care (24.2%; 95% CI: 18.0, 30.3), and with getting dressed (20.2%; 95% CI: 14.5, 25.9) (Fig. 1). Caregivers also most often provided support for 5–7 IADLs (47.8%; 95% CI: 38.1, 57.5), with more than half of respondents helping to prepare meals (58.1%; 95% CI: 50.3, 65.8), manage finances (65.7%; 95% CI: 59.3, 72.1), grocery shop (70.4%; 95% CI: 63.4, 77.4), do housework (55.2%; 95% CI: 45.3, 65.1), or provide transportation (74.1%; 95% CI: 66.2, 82.0). In addition, 44.6% (95% CI: 36.7, 52.6) reported performing medical/ nursing tasks for their care recipient. Finally, the majority of caregivers report communicating with healthcare professionals on
behalf of their care recipient (74.1%; 95% CI: 67.4, 80.7), and spending time or providing companionship/emotional support for their care recipient (87.5%; 95% CI: 82.2, 92.8). 3.3. Unmet supportive care needs Approximately one third of respondents reported at least one unmet supportive care need across all areas (30.9; 95% CI: 22.5, 39.4). Table 2 details frequencies of each supportive care area. Among the sample of caregivers, approximately 20% needed but did not receive help getting access to services (19.2%; 95%CI: 12.2, 26.2), respite care (20.4%; 95% CI: 13.9, 27.0), caregiver support groups (19.5%; 95% CI: 12.5, 26.5), or individual counseling to help cope with providing care (20.2%; 95% CI: 13.4, 27.1). Slightly less caregivers reported needing but not receiving training on how to perform medical/nursing tasks (13.2%; 95% CI: 6.8, 19.6). We examined unadjusted chi-squared associations between caregiver characteristics and reports on unmet needs in each supportive care area (medical/nursing training, accessing help, respite care, support groups, and counseling to cope with providing care). Results showed a significant difference for needs in medical/nursing training by caregiver characteristics including age (p = 0.04), race/ethnicity (p = 0.048), duration of caregiving (p = 0.02), and number of ADLs performed (p = 0.048) (Table 3). A greater proportion of caregivers ages 18–49 (15.7%; 95% CI: 3.8, 27.5) and 50–65 (14.5%; 95% CI: 5.7, 23.2) needed but did not receive medical/nursing training as compared with caregivers 65 years of age and older (8.5%; 95% CI: 1.1, 15.9). A greater proportion of those in the Asian/Other group reported needing and not receiving medical/nursing training (38.6%; 95% CI: 2.3, 74.9) than other race/ethnicities. In addition, those providing care for more than 2 years (17%; 95% CI: 6.5, 27.5) reported that they needed but did not receive medical/nursing training more than those providing care for less than 2 years (8.7%; 95% CI: 2.2, 15.2). Finally, a greater proportion of those providing support for 3–4 ADLs reported that they needed but did not receive medical/ nursing training (27.8%; 95% CI: 4.5, 51.0) than those providing support for 0–2 ADLs (11.2%; 95% CI: 4.6, 17.8) or 5–6 ADLs (10.4%; 95% CI: 0.1, 28.4). Results also indicated significant differences in caregivers reporting help in getting access to services such as nurses, home
Fig. 1. ADL and IADL tasks provided by caregivers (Weighted Proportion; 95% Confidence Interval [CI]).
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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Table 2 . Training and support received by caregivers. Type of support
Received
Did not need
Needed but not received
Training on how to perform med/nursing tasks
N 80
Weighted % 26.9%
95% CI (20.0, 33.7)
N 185
Weighted % 56.8%
95% CI (49.2, 64.3)
N 34
Weighted % 13.2%
95% CI (6.8, 19.6)
Help getting access to services
82
23.2%
(16.8, 29.7)
161
54.7%
(46.3, 63.2)
55
19.2%
(12.2, 26.2)
Short-term or long-term breaks (respite care)
40
10.9%
(6.7, 15.2)
188
64.4%
(57.9, 70.9)
65
20.4%
(13.9, 27.0)
Support groups for caregivers
26
10.6%
(5.0, 16.2)
206
66.1%
(58.1, 74.1)
62
19.5%
(12.5, 26.5)
Individual counseling to help cope with giving care
32
10.9%
(5.7, 16.1)
199
65.3%
(57.8, 72.8)
64
20.2%
(13.4, 27.1)
care aides, Meals on Wheels or other community services by race/ ethnicity (p = 0.03), residence of the care recipient (p = 0.03), and number of ADLs performed (p = 0.0002). A greater proportion of respondents in the Asian/Other group (50%; 95% CI: 19.6, 82.1) reported needing but not receiving help accessing such services compared with other race/ethnicities, as did caregivers not cohabitating with their care recipient (21.5%; 95% CI: 11.3, 32.4). In addition, more caregivers who provided support for 3–4 ADLs reported needing and not receiving help accessing services (26.2%; 95% CI: 6.6, 45.8) compared with those who performed 0–2 and 5–6 ADLs. We found a significant association between number of ADLs supported and needing but not receiving respite care. A greater proportion of caregivers supporting 5–6 ADLs reported that they needed but did not receive respite care support (30.9%; 95% CI: 0.1, 61.8) than those providing support for a lower number of ADLs. We did not find significant differences between caregiving characteristics and reported unmet supportive care needs for support groups or counseling. Characteristics which were not significantly associated with any of the supportive care areas were gender, marital status, education, occupational status, relationship to care recipient, condition of care recipient, hours per week providing care, or number of IADLs supported. 4. Discussion and conclusion 4.1. Discussion This study describes the prevalence of tasks provided and unmet supportive care needs reported directly from caregivers of adults with serious chronic illnesses in a nationally-representative sample. Results support and extend previous findings on caregiver burden and unmet needs in single diseases and convenience samples [4,6,7,16,23]. It provides the foundation for identifying the most vulnerable caregivers in greatest need of support. We found that over sixty-five percent of caregivers were caring for recipients have more than one condition, and sixty percent had been providing care for more than 2 years. Caregivers often provide support for multiple ADLs, IADLs, and also communicate with healthcare providers and provide emotional support/companionship for their care recipient. These results parallel reports such as the National Alliance of Caregiving’s 2015 report, Caregiving in the U.S. [1], which found that many caregivers monitored health of the care recipient, communicated with healthcare professionals, and advocated with providers, services, and agencies. Although more than half of caregivers in this study reported that they did not need support in all five supportive care areas (medical/nursing training, help accessing services, respite care, support groups, and caregiver counseling), almost one third of caregivers in the current study did report an unmet supportive care
need in one of the five areas. It is critical to attend to the unmet needs of caregivers, as previous studies have demonstrated the impact of caregiver needs on care recipient well-being and outcomes. Studies of cancer caregivers with unmet needs demonstrate associations between support service needs and a greater number of mentally unhealthy days [24], as well as increased burden [14]. In addition, while a growing number of interventions have been developed to address the burden placed on caregivers [25–29], most are focused on providing psychosocial/ emotional support for caregivers and do not provide support for areas including ways to access help such as nurses, home care aides, Meals on Wheels or other community services. In addition, with almost 75% of respondents in our study reporting that they communicate with healthcare professionals on behalf of their care recipient, education to navigate the complex healthcare system and coordinate care is sorely needed. Caregivers reported unmet supportive care needs in several areas, with approximately 20% reporting not receiving support for help getting access to services, respite care, support groups, and individual counseling. Results did indicate that a lower proportion of caregivers reported needing but not receiving medical/nursing training, though 13.2% of caregivers did not receive such training. As previous research indicates that lack of receipt of medical/ nursing training is associated with greater levels of caregiver burden [14], our results present potential opportunities for intervention at multiple levels through patient-, provider-, and healthcare system-level efforts, as well as policy-level reimbursement for training. It was clear that unmet supportive care needs differed based on several caregiver characteristics, but that these associations varied by supportive care area. These results suggest that a “one-size fit all” approach may not be appropriate, and that there is a need to further investigate factors that might confound the relationship between level of support provided and unmet needs. We highlight notable findings below. Results indicated that not receiving medical/nursing training was associated with factors including younger age, race/ethnicity, and number of ADLs. A greater proportion of caregivers ages 18–49 and 50–65 reported needing but not receiving medical/nursing training as compared with older caregivers. It is possible that older adult caregivers interact with the healthcare system more often and therefore have greater opportunities for training, though this hypothesis warrants exploration. In addition, caregivers who assisted with 3–4 ADLs were more likely to report not receiving medical/nursing training and help accessing services than those assisting with a higher or lower number of ADLs. While it is likely that healthcare providers are more attuned to the needs of caregivers who provide greater support, there is a paucity of literature supporting this hypothesis. Regardless, these results warrant future exploration and suggest that a systematic
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
Caregiver-reported Unmet Needs Medical/Nursing Training
Accessing Help
Respite Care
Support Groups
Counseling
Row % 15.7 14.5 8.5
95% CI (3.8, 27.5) (5.7, 23.2) (1.1, 15.9)
p* 0.04
Row % 20.4 20.3 17.6
95% CI (8.4, 32.5) (10.2, 30.4) (7.7, 27.6)
p* 0.76
Row % 17.7 24 23.4
95% CI (6.4, 29.0) (13.2, 34.8) (8.3, 38.5)
p* 0.52
Row % 23.4 17.9 18.8
95% CI (9.8, 27.7) (8.3, 27.4) (8.0, 29.7)
p* 0.53
Row % 22.1 19.5 21.5
95% CI (8.7, 35.6) (9.9, 29.0) (11.1, 31.8)
p* 0.58
Gender Male Female
10.1 15.7
(2.6, 17.6) (6.3, 25.0)
0.61
13.7 21.8
(3.3, 24.1) (12.5, 31.1)
0.53
18.7 21.6
(6.0, 31.4) (12.0, 31.1)
0.9
14.1 22.4
(5.3, 22.9) (12.4, 32.3)
0.48
16.9 22
(7.8, 25.9) (11.9, 32.1)
0.69
Race/ethnicity NH White NH African American Asian/Other Hispanic/Latino
11.7 10.8 38.6 10.5
(4.0, 19.3) (0.1, 26.5) (2.3, 74.9) (0.6, 20.3)
0.048
17.1 16.6 50.9 16.6
(9.8, 24.3) (0.1, 33.8) (19.6, 82.1) (1.6, 31.5)
0.03
20.4 12.5 47.2 17.4
(12.7, 28.2) (0.1, 28.4) (15.1, 79.3) (2.1, 32.6)
0.66
18.1 16.9 40.9 21.1
(10.5, 25.7) (0.1, 34.9) (7.9, 73.9) (5.1, 37.1)
0.61
17.8 20.3 43.4 22.9
(10.7, 24.9) (1.6, 39.1) (7.7, 79.2) (6.9, 38.9)
0.44
Marital Status Married/partnered Other
12.2 17
(5.8, 18.6) (1.3, 32.6)
0.85
21.4 15.9
(12.8, 30.0) (3.6, 28.1)
0.71
23 17.5
(14.9, 31.1) (4.3, 30.7)
0.46
20.6 19.5
(12.2, 29.0) (6.1, 32.9)
0.96
20.2 22.7
(11.4, 29.0) (9.3, 36.2)
0.95
Education HS Grad or less Some college College grad
11.5 14.2 14.5
(0.1, 24.0) (2.3, 26.1) (5.2, 23.7)
0.74
11.4 23.8 20.1
(2.2, 20.6) (10.2, 37.4) (10.1, 30.1)
0.19
13.2 27 18.9
(0.3, 26.0) (14.6, 39.4) (9.1, 28.6)
0.52
8.4 24.2 23.8
(0.1, 18.5) (12.1, 36.3) (12.8, 34.8)
0.16
16.3 21.4 24.2
(1.6, 31.1) (10.4, 32.3) (11.3, 37.2)
0.84
Occupational Status Employed/Student/Homemaker Unemployed/Disabled/Other Retired
15.7 16.5 6
(6.2, 25.1) (3.8, 29.1) (0.4, 11.6)
0.13
17.4 38.3 15.9
(8.3, 26.4) (14.5, 62.2) (6.7, 25.1)
0.13
19.2 30.8 22.3
(10.6, 27.7) (7.1, 54.6) (8.2, 36.4)
0.79
21.3 24.6 14.9
(11.6, 30.9) (1.5, 47.7) (5.9, 23.9)
0.73
20 30.3 18.2
(10.0, 30.0) (8.8, 51.8) (8.8, 27.6)
0.29
Relationship to care recipient Spouse Other than spouse
13 13.9
(4.3, 21.7) (5.3, 22.4)
0.48
20.6 19.4
(9.7, 31.4) (9.8, 29.1)
0.06
30.6 17.7
(14.9, 46.4) (9.5, 25.9)
0.11
22.3 19.5
(10.1, 34.5) (10.2, 28.8)
0.94
27.4 18.5
(13.3, 41.5) (9.4, 27.5)
0.57
Condition of care recipient Multiple conditions Alzheimer's or Dementia only Chronic condition or cancer only Other single conditions
12.2 22.6 26.4 9.3
(4.3, 20.1) (0.1, 55.7) (0.1, 53.8) (0.1, 20.5)
0.15
19.8 15.6 38.3 13.7
(11.1, 28.6) (0.1, 35.9) (11.7, 64.9) (0.9, 26.4)
0.23
22.2 12.1 38.3 15.1
(14.8, 29.6) (0.1, 27.2) (11.7, 64.9) (1.1, 29.0)
0.35
21.5 12.2 31.2 11.4
(14.6, 28.4) (0.1, 28.6) (4.4, 58.0) (0.1, 23.3)
0.70
19.1 23.9 31.9 22.8
(13.0, 25.1) (0.1, 57.9) (5.2, 58.6) (6.2, 39.3)
0.60
Hours per week providing care <20 hrs per week > = 21 hrs per week
15.7 9.5
(5.6, 25.7) (0.1, 20.2)
0.73
22.9 12.1
(12.9, 32.8) (2.3, 21.9)
0.27
23.9 16.6
(15.3, 32.5) (6.8, 26.5)
0.22
26.4 10.9
(16.9, 36.0) (3.0, 18.8)
0.1
25.6 14
(16.0, 35.2) (1.8, 26.1)
0.14
Length of time providing care Less than 2 yrs More than 2 yrs
8.7 17
(2.2, 15.2) (6.5, 27.5)
0.02
15.6 21.7
(7.8, 40.7) (11.0, 32.5)
0.36
13.7 25.4
(6.2, 21.3) (15.0, 35.9)
0.10
15.7 23.5
(5.1, 26.4) (13.3, 33.6)
0.59
16.8 24
(6.6, 73.5) (14.8, 33.2)
0.45
Residence of care recipient Cohabitating with caregiver Not cohabitating with caregiver
12.4 15.7
(2.1, 22.7) (5.2, 26.2)
0.07
18.5 21.8
(8.0, 29.0) (11.3, 32.4)
0.01
22.1 20.7
(10.8, 33.3) (11.3, 30.1)
0.96
19 22.4
(8.3, 29.7) (12.7, 32.3)
0.74
17.2 26.4
(8.0, 26.3) (15.4, 37.5)
0.26
Number of ADLs performed 0–2 ADLs 3–4 ADLs
11.2 27.8
(4.6, 17.8) (4.5, 51.0)
0.048
18.6 26.2
(10.6, 26.5) (6.6, 45.8)
0.002
20.7 20.6
(13.5, 28.0) (0.8, 70.4)
0.03
20.2 24.6
(12.5, 27.9) (4.4, 44.9)
0.80
20.9 24.6
(13.3, 28.5) (1.3, 47.9)
0.28
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Age 18–49 50–64 65+
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Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
Table 3 Weighted percentages of unmet need reported by caregivers and unadjusted bivariate associations between caregiving characteristics and specific unmet supportive care needs.a .
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(10.3, 43.7) (0.6, 24.9) (13.3, 29.6) 27 12.7 21.5 (6.1, 31.5) (1.5, 27.6) (13.9, 33.7) 18.8 14.6 23.8 NH = Non-Hispanic. DK = Don’t know. ADL = Activities of Daily Living. IADL = Instrumental Activities of Daily Living. a Unmet supportive care needs are those reported by caregivers as having needed but not received training in the specified areas. * p value corresponds to Wald chi-square test; Wald F test adjusted for sampling weights.
(7.6, 31.9) (2.0, 18.4) (17.3, 37.7) 19.8 10.2 27.5 0.69 (8.6, 32.0) (0.9, 27.0) (11.8, 32.6) 18 7.5 14 Number of IADLs performed 0–2 IADLs 3–4 IADLs 5–7 IADLs
(4.9, 31.2) (0.6, 14.4) (3.4, 24.6)
0.06
20.3 13.9 22.2
(0.1, 42.8) 20 (0.1, 28.4) 10.4 5–6 ADLs
Caregiver-reported Unmet Needs
30.9
(0.1, 61.8)
0.11
11.2
(0.1, 27.8)
0.82
13.6
(0.1, 30.3)
0.61
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assessment and tailoring of interventions may be needed for all caregivers. Caregiving characteristics associated with unmet supportive care needs for help accessing services included residence of the care recipient, race/ethnicity, and number of ADLs performed. Caregivers who did not cohabitate with their care recipients reported needing but not receiving help accessing services such as nurses, home care aides, Meals on Wheels, or other community services. This was the only unmet supportive care need that was associated with residence of the care recipient, which could be related to the nature of such services. Previous research indicates that living arrangements between caregivers and care recipients may be associated with quality of life, psychological distress, and caregiver burden [30,31]. As an increasing number of caregivers are providing support at a distance from their care recipient, there is a need for future research on their unique supportive care needs. Our study also indicates that those who are supporting a greater number of ADLs more often report needing but not receiving respite care than those assisting with less ADLs. Respite care provides an alternative care arrangement so that caregivers can have a break from their care responsibilities, which could be particularly of need for those providing greater support. Although there are many advantages of respite care, research on these services is difficult in community settings where caregivers provide their care [32]. As increasing demands are placed on caregivers to provide continuous care for the care recipient, respite care may be an effective strategy to prevent caregiver burnout. Prior to implementing interventions, however, further examination of the role of caregiving characteristics on receipt of respite care in diverse care settings is needed. Significant differences in caregiver unmet supportive care needs by race/ethnicity also warrant further exploration. Results indicated that a greater number of caregivers in the Asian/Other group reported needing but not receiving medical/nursing training and help accessing services, as compared with caregivers reporting other race/ethnicities. As this group includes those who report their race as Asian American, Pacific Islander, American Indian/ Alaska Native, and multiple races, there could be substantial variability among members of this ‘other’ group. Though potential reasons for greater unmet supportive care needs in this group could be due to differences in cultural norms related to asking for help and access to the healthcare system [33], future research should explore differences in unmet needs by these specific racial/ ethnic groups in an adequately powered study. Finally, although our study did not indicate differences in unmet needs by disease/condition of the care recipient, acuity and severity of disease may play a role in caregiver unmet needs. Previous studies of cancer caregivers report substantial unmet needs [14,16,24], particularly in areas including help accessing services and training with medical/nursing tasks, while caregivers of patients with strokes and dementia often report unmet informational support needs [34,35]. Our nationally-representative sample included a high proportion of caregivers supporting patients with multiple conditions. As previous work has focused on caregivers of patients with single conditions, an in-depth examination of the unique unmet needs for caregivers of patients with multiple diseases is needed. 4.2. Limitations The results of our study should be considered in light of certain caveats. First, although the HINTS survey is fielded in a nationallyrepresentative sample, the sample of caregivers in this study may not fully represent all U.S. caregivers, and the small sample size may have limited external validity with the larger population of caregivers, as those who completed this survey may be healthier, younger, and more
Please cite this article in press as: M.A. Mollica, et al., Caregiving tasks and unmet supportive care needs of family caregivers: A U.S. populationbased study, Patient Educ Couns (2019), https://doi.org/10.1016/j.pec.2019.10.015
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often caring for an individual rather than a spouse than those who did not. The moderate response rate for this cycle of the HINTS survey also could limit generalizability, but survey weights allow researchers greater ability to compensate for non-response error. In addition, the purpose of this study was to explore and identify salient factors that may be associated with unmet supportive care needs for caregivers. Our intention was to provide a description of the national landscape of the needs of caregivers, including identification of factors associated with unmet supportive care needs. As such, we limited our analyses to descriptive statistics to lay the groundwork for future studies powered to explore hypotheses related to the associations we found. In addition, the survey allowed respondents to select multiple unmet needs, and were not given the opportunity to prioritize. It is possible that differences in priorities may exist based on caregiver characteristics, and future research examine prioritization of unmet needs to support future tailoring of interventions. We were also unable to include additional questions related to the care recipient age and other characteristics due to lack of available questions on the HINTS survey. It is possible that these characteristics may also play a role in unmet supportive care needs for caregivers and are a potential area for future study. Finally, this study describes unmet supportive needs from the perspective of caregiver respondents, and caregivers may or may not be aware of services that could benefit them. Measurement of caregiver unmet needs and burden, however, has primarily focused on the identification of problems experienced by caregivers [36], and not the extent to which caregivers perceive that they require help with these issues. Asking caregivers directly about the issues with which they need assistance can help clinicians to focus on the needs of individual caregivers and achieve optimal well-being. It can also assist healthcare providers and researchers to identify caregivers who experience higher levels of unmet needs and require greater support. 4.3. Conclusions In summary, we found that caregivers are providing substantial care for care recipient, and one-third of respondents report at least one unmet need. Our findings are a first step to identifying vulnerable caregivers with the greatest unmet needs. The availability of caregiving items in HINTS 5 survey data allows for a unique opportunity to provide population-based estimates for caregivers across conditions. Researchers and clinicians should collaborate to incorporate the assessment and tailoring of training and supportive interventions to provide the necessary support for caregivers across the U.S. Disclaimers The article was prepared as part of the authors’ (MAM, AWS, EEK) official duties as employees of the US Federal Government. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute. This study has not been previously presented. I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story. CRediT authorship contribution statement Michelle A. Mollica: Conceptualization, Methodology, Formal analysis, Writing - original draft. Ashley Wilder Smith: Conceptualization, Writing - review & editing. Erin E. Kent: Conceptualization, Writing - review & editing.
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