Engaging Veterans, caregivers, and system stakeholders to improve VA home and community‐based services

Abstract

Objective

To understand Veterans', caregivers', and stakeholders' perceptions of home‐based and caregiver support services and their suggestions for improvement to better align services with needs.

Data Sources

We identified Veterans and caregivers at four EDCoE sites using the VA high‐need, high‐risk list, representing Veterans who qualify for home‐based primary care. We randomly selected Veterans and their caregivers, stratifying by age. We also identified leaders and clinicians involved in clinical service delivery.

Study Design

Between February and November 2019, we conducted in‐person and telephone interviews and focus groups using semi‐structured questions tailored to each group, analyzing them through a rapid qualitative analysis approach and providing real‐time feedback to operational partners.

Data Collection

Thirty‐four Veterans, 24 caregivers, and 39 leaders and clinicians participated.

Principal Findings

Respondents identified key categories of experience that could be monitored and improved, including navigating an increasingly complex system, coordinating and communicating across services, and unmet household and financial needs. Veterans and caregivers described quality in terms of reliability, timeliness, standardization, and accountability. Summaries were created to contextualize results and to highlight gaps and opportunities for new measures and policy development.

Conclusions

Collaborating with Veterans, caregivers, and stakeholders enables us to understand their daily experiences and to develop meaningful approaches to evaluating services that incorporate their perspectives. Providing regular, actionable feedback to operational partners informs policy and operational initiatives, such as the scope of services and infrastructure for system navigation.

What is known on this topic

• Enabling Veterans to remain safely in their homes is a VA priority.

• Veterans and caregivers rely on home and community‐based services to obtain necessary supports.

• Understanding the experiences of Veterans, caregivers, and VA personnel (clinicians, staff, and administrators) allows us to identify opportunities for improvement.

What this study adds

• Veterans, caregivers, and VA personnel report on challenges in navigating an increasingly complex system of care.

• Caregivers report significant difficulties managing daily life, particularly unexpected changes in routine.

• The scope and quality of home‐ and community‐based care services are unclear to Veterans, caregivers, and clinicians, hindering decision‐making and service utilization.

1. INTRODUCTION

Keeping persons at risk of institutionalization safely in their homes for as long as possible has received attention and priority from the Departments of Health and Human Services ¹ and Veterans Affairs (VA). ² Success in delaying institutionalization requires much more than disease management. It is predicated on creating home contexts that can adequately support each person's health needs. For creating these supportive contexts, healthcare delivery systems must partner with patients and caregivers (including family members and other informal caregivers) to understand their needs and provide an expanded range of home and community‐based services (HCBS) to meet those needs. Within VA, persons at risk include not only older, frail Veterans but younger Veterans who had survived catastrophic injuries.

The VA Choose Home initiative sought to “develop an integrated care model for noninstitutional care and services.” ² This included an expanded set of home‐based services and greater partnerships with community and governmental service agencies. As part of this initiative, the Elizabeth Dole Center of Excellence for Veteran and Caregiver Research ³ (EDCoE) was created to expand VA capacity to deliver integrated, Veteran and stakeholder‐partnered, data‐driven approaches to care. The EDCoE is undertaking a set of integrated studies to accomplish this goal.

Stakeholder engagement is increasingly recognized for its value in achieving impactful healthcare research and practice improvement as part of learning healthcare systems. ⁴ While stakeholder engagement has become more common in developing specific research projects, tools, or measures, ⁵ including stakeholders in identifying priority outcomes for research and performance monitoring (e.g., for defining research agendas or developing health system report cards), is notably less common. ⁶ , ⁷ In addition, in the context of comparative effectiveness and patient‐centered outcomes research, a recent systematic review found that engaging providers or including stakeholders across the healthcare system was relatively infrequent. ⁸

The EDCoE research agenda was developed to overcome limitations of prior research by partnering with multilevel stakeholders, including Veterans, caregivers, and VA providers, staff, and leadership, to assess experiences with and perspectives on HCBS, including unmet needs. These data would then be used by operational and policy partners to improve HCBS and adapt and expand VA services and community connections. A key component of this partnership was a series of focus groups and interviews with Veterans, caregivers, clinicians, staff, and administrators about their experiences with HCBS, to identify potential service gaps and strategies to close them. We report on the findings from this multilevel stakeholder‐engaged process to identify priority areas to strengthen HCBS within VA and the subsequent dissemination strategies to share results with partners to illustrate the impact of these collaborations on VA HCBS. ⁹

2. METHODS

We recruited three groups of stakeholders for focus groups and interviews: Veterans, caregivers, and VA front‐line clinicians, staff, and administrators, who were eligible for or who provide, coordinate, or refer to HCBS at four geographically diverse VA Medical Centers (VAMCs) affiliated with the EDCoE. Potentially eligible Veterans were identified from the VA's high need, high risk (HNHR) list. This national risk‐stratified categorization represents Veterans who would qualify for Medicare's demonstration of home‐based primary care (i.e., Independence at Home). ¹⁰ The HNHR categorization is based on several factors, including service utilization and the Jen Frailty Index (JFI), which accounts for categories of illness linked to the need for long‐term care services. For each VAMC, we randomly selected 120 HNHR Veterans stratified by age (60 who were 65 years of age or older and 60 who were under 65 years of age). We included Veterans who had at least one primary care visit at a VAMC that is an EDCoE site in the prior year (indicating recent ability to attend in‐person appointments). We mailed these Veterans and followed up with phone calls to invite them to participate. We also asked if they had caregivers and if we could contact those caregivers to participate in separate focus groups, which were also stratified by Veteran (or care recipient) age. Our goal was to recruit 8–10 participants per group and to hold four focus groups (one of each stratum) at each VAMC. Mixed focus groups, including Veterans and caregivers, were not conducted. Given difficulties that some caregivers reported in attending groups at prespecified times, we allowed these stakeholders to participate in individual in‐person or phone interviews at their convenience. Veteran and caregiver participants were compensated $50 for their time and effort.

We used purposive sampling to identify the third group of stakeholders, which included VA front‐line clinicians, staff, and administrators from the same four VAMCs. We identified roles that were involved in the delivery, coordination, and oversight of HBCS, including Chiefs of Social Work, Care Managers, Transition & Care Management Program Managers, Polytrauma Case Managers, and physicians, social workers, nurses, occupational and physical therapists. Because VA facilities differ in the number and types of HCBS that are provided and how they are organized, ¹¹ coinvestigators at each site identified the specific individuals involved in the delivery, coordination, or referral to HCBS at each local facility. We emailed these individuals inviting them to participate in interviews and asking for their assistance in identifying clinicians and/or front‐line staff within their programs. If requested or preferred, we conducted joint interviews with some respondents for convenience (e.g., during regularly scheduled team meetings). Interviews were conducted from February to November 2019.

For each stakeholder group, we created parallel interview guides that included questions on VA's strengths and challenges providing HCBS, priorities for assessing service quality (or need for improvement), support needs for caregivers, and community organizations or groups helpful in providing HCBS. In addition, we included an initial question that was tailored to each group (i.e., Veteran experiences with received HCBS; caregiver experiences providing care to Veterans in the home; staff/provider or leadership role at VA and how that role intersected with HCBS). We treated focus groups like group interviews, attempting to get each person to respond to all questions. We did not ask questions or prompt responses regarding specific HCBS but instead invited respondents to speak regarding the services that were relevant to them. Interview guides are shown in Appendix S1.

We also collected descriptive data to characterize the Veteran, caregiver, and stakeholder participants. From Veterans, these data included demographic information, source of caregiver support (e.g., from a family member, friend, paid healthcare worker), and marital status. Caregiver data included demographic information, relationship to Veteran (e.g., spouse or partner, child), Veterans' medical conditions, and types of support provided (e.g., Activities of Daily Living and Instrumental Activities of Daily Living). The JFI score was captured for all participants. A JFI score ≥6 indicates functional impairment. For stakeholders, we noted their service line or program (e.g., Primary Care, Geriatrics and Extended Care, Caregiver Support Program) and their role (e.g., Service Chief, inpatient physician, service coordinator).

The stakeholder engagement component was determined to be nonregulated research by the Institutional Review Board of the University of Texas Health San Antonio and was also approved by the Research and Development Committee of the South Texas Veterans Health Care System. All focus groups and the majority of interviews were conducted in person at the participating facility. Each participant was provided with an information sheet about the project. Focus groups and interviews were digitally recorded with participants' permission. If anyone expressed discomfort with recordings, we offered to take detailed notes instead.

We utilized rapid qualitative analysis for our key informant data. ¹² The unit of analysis was the individual. We transcribed the digital recordings and summarized each transcript (or set of detailed notes) using structured templates organized by domains (e.g., challenges, areas for improvement) aligned with the interview guides. ¹³ Structured summaries were prepared by four team members (JPJ, LP, PN, EF). Team member summaries were compared in early meetings to ensure consistency in completing the templates; once initial consistency was established, quality was further verified in review and discussion during weekly team meetings. We then displayed this summarized content by domain in a matrix for each stakeholder group to note similarities, differences, and trends in responses, which were summarized in stakeholder group profiles and reviewed by all members of the analytic team (JPJ, PN, LP, EF) to ensure trustworthiness. For the purpose of the current analysis, we then examined domain content across groups to identify overarching patterns and group‐level variation in areas of particular challenge and priority for improvement.

We used a participatory approach to this work, partnering with operational partners through the design and analytic process. ¹⁴ , ¹⁵ Operational partners include offices with oversight of clinical programs. Our primary operational partner was the Chief Veterans Experience Officer (CVEO) during the time of this work. The CVEO is a political appointee who oversees the national Veteran Experience Office (VEO). The VEO collects data and feedback from Veterans, collaborating with other VA offices and programs to improve Veterans' experiences of care and trust in the VA healthcare system. The CVEO included other partners as needed, including additional members of the VEO; VA Caregiver Support Program, which oversees and administers all caregiver support programs within VA; Veteran Service Organizations, external organizations that support, assist, and advocate for Veterans; and members of the Veterans' Family, Caregiver, and Survivor Advisory Committee, an external Federal Advisory Committee convened to advise VA on matters related to family, caregivers, and survivors, and the organizations they represented. These partners provided feedback regarding our approach to identifying participants (e.g., which Veterans to target, which VA services to engage) and recruited stakeholder participants. As we analyzed data, we shared interim results with the CVEO, other members of the VEO, and other stakeholders as requested (e.g., the Caregiver Support Program and Veterans' Family, Caregiver, and Survivor Advisory Committee) to not only provide actionable information but also obtain to feedback to refine the focus of our subsequent analyses. For example, the CVEO was particularly interested in hearing stories of Veterans' and caregivers' lived experiences and details of respondents' suggestions for program improvements.

3. RESULTS

3.1. Participants

We spoke with 34 Veterans, 24 caregivers, and 39 clinicians, staff, and facility leaders across the four sites. We conducted 47 interviews, including focus groups and individual/small groups, to accommodate participants' schedules and preferences. Veterans had an average JFI score of 5.3 (medium). Table 1 summarizes the characteristics of Veterans and caregivers. Veterans of all ages reported chronic, significant medical illnesses, including cancer, diabetes, cirrhosis, and chronic obstructive pulmonary disease. Veterans reported an average of 2.2 chronic mental health conditions, such as post‐traumatic stress disorder. Twelve Veteran respondents self‐identified as White/non‐Hispanic; eight identified as African‐American, five as White/Hispanic, two as American Indian or Alaskan Native, one as Asian American, and six did not provide this information. Caregivers of all ages reported helping with daily activities and meeting health needs, as noted in Table 1. Caregivers of Veterans <65 also reported providing more care for mental health conditions and caregiving needs around housing and education. Ten caregivers self‐identified as White/Hispanic, 10 as White/non‐Hispanic, three as African American, and 1 did not self‐identify.

TABLE 1.

Characteristics of Veteran and caregiver respondents

	Veterans <65 (N = 15)	Veterans 65+ (N = 19)
Types of health issues	Medical illnesses Mental health issues Deployment‐related injuries	Medical illnesses Dementia
Caregiving needs	Assistance with activities of daily living Behavioral health needs Housing needs Educational needs	Assistance with activities of daily living Disease monitoring/management Skilled needs, notably physical therapy
Caregiver relationship to Veteran	Spouse Other family members No informal caregivers	Spouse (typically wife)

	Caregivers for Veterans <65 (N = 9)	Caregivers for Veterans 65+ (N = 15)
Additional tasks reported by caregivers	Managing a broad range of mental health conditions	Managing a range of dementia symptoms Managing mental health symptoms
Types of home services utilized	Medication management Prosthetics Physical therapy Nurse visits/phone calls	Medication management Prosthetics Physical therapy Nurse visits/phone calls Mental health services

As detailed in Appendix S2 a variety of VA stakeholders participated in the site interviews, including Service Chiefs, Medical Directors, and Program Directors, as well as front‐line clinicians and staff from the Geriatrics and Extended Care, Medicine, Social Work, Nursing, Psychology, and PM&R Service Lines. These participants included representatives from inpatient medicine, GeriPACTs (geriatric primary care medical home), Home‐based Primary Care, Extended Community Care, including Home Health and Skilled Community Nursing, Medical Foster Homes, Polytrauma, Operation Enduring Freedom/Operation Iraqi Freedom Transitional Care, and the Caregiver Support Program. Two VA stakeholders (one program leader, one front‐line clinician) declined to be recorded, and detailed notes were taken and used for analyses.

3.2. Strengths of VA services

All respondents noted strengths to VA care, including access to a broad range of services, a nationwide organizational focus on family caregiver support, high VA care quality (compared to their experiences with non‐VA care), and in‐person communication with VA clinicians. The scope of services noted included not only home and community‐based care activities such as medication management, supplies and equipment, and therapy, but also the availability of services in healthcare settings, such as urgent care services and the ability to be referred to non‐VA care if needed. Veterans and caregivers perceived VA clinicians and staff to be a critical aspect of VA care quality and a key part of their perceptions of positive communication. Caregivers reported feeling valued by the VA, specifically by front‐line clinicians. In terms of strengths in service quality, Veterans <65 and their caregivers reported having positive experiences with pain management and addiction treatment, while those over 65 commented on in‐home services. Clinicians, staff, and leadership commented in detail on the organizational focus on caregiving and the broad scope of services available (e.g., respite, adult daycare).

We're always monitoring the different programs and we're always communicating on when things come down from Central Office, how best to implement things, how is everyone doing … we're very receptive and open to share things. You know, we're always looking to see how we can improve. (Leadership)

3.3. Challenges with VA services

Respondents also noted a number of challenges with VA care, summarized in Table 2. Some of these challenges are related to strengths—for example, the expanded scope of services as VA introduces more service offerings requires greater coordination and navigation, which can be challenging for Veterans and caregivers:

TABLE 2.

Veteran and caregiver perceptions of challenges with VA care

Challenge	Veterans	Caregivers	Provider/staff/local program leadership
Navigating system and benefits	All age groups Obtaining benefits, co‐payments, stipends Lack of knowledge of available VA/non‐VA services and how to access	All age groups Lack of knowledge of VA/non‐VA services and how to access Caregivers <65 Lack of navigators/case workers Lack of coordination between insurance and VA Caregivers 65+ Refill processes Uncovered costs of in‐home care
Communication gaps	All age groups Regarding follow‐up care With providers Veterans <65 Lack of a “go‐to” person to aid in navigation Veterans 65+ Between VA and home health Between providers and caregivers	All age groups Reaching providers by phone Caregivers <65 With non‐VA care teams Rotating VA providers Provider/caregiver communication Caregivers 65+ Urgent need to communicate Understanding providers	Communication between caregivers and clinicians
Working with formal caregivers	All age groups Working around formal caregivers Accountability when problems arise	All caregivers Fit with perceived needs Caregivers 65+ Not clear what tasks are allowable Accountability when problems arise
Transportation	All age groups Transportation to VA	All age groups Transportation to VA, particularly for Veterans at a distance
Access	All age groups Wait times for VA care	All age groups Wait times for contracted care Access to urgent care Caregivers <65 Wait times for PTSD care Marital/family counseling Mental health support Substance abuse care Caregivers 65+ Access to specialty care Lack of in‐home care services	Caps on service quantity may limit access Difficult providing assistance to rural Veterans, particularly those without caregivers Difficulty accessing online programs in remote/rural areas with poor Internet
Gap between needs and services	Veterans <65 Chores Home repairs Economic: bills, housing, food Concern for Veterans without family caregivers Veterans 65+ Showering Cooking Equipment needs	Veterans <65 Difficulty Coordinating complex mental and physical needs Insufficient mental health support Economic stress (more general) Veterans 65+ Short‐term caregiver disability Caregiver respite Postacute care Equipment needs Exercise
Quality of care	Veterans 65+ Uncertainty regarding the quality of non‐VA care
Social needs		All caregivers Need for caregiver support Need for socializing programs for Veterans Caregivers <65 Managing PTSD/TBI/SUB Caregivers 65+ Managing dementia Balancing Veteran desire for independence and need for care
Dissatisfaction with inpatient care		All caregivers Dissatisfaction with care during hospitalization Caregivers <65 Insufficient posthospital instructions for caregivers
Adequacy of caregiver skills			Concern re: caregivers' ability to safely provide needed care Medication safety
Lack of standardized quality measures			Difficulty assessing VA/non‐VA home hospice Lack performance measures for contracted home health agencies Little data for frontline clinicians, particularly given multiple programs and options
Staffing/workload			Understaffing and administrative demands create workload burdens for caregiver support staff

Everything is discovery learning with the VA. There is no one—there's no case managers assigned to us. There's no one out there … (there are) advocates for me so we can get our money from the VA compensation part. However, we don't have a case manager to take it out there and walk us through what we need to do per person. And that's huge. (Veteran from 65 and under focus group)

Clinicians and staff reported difficulty keeping up with not only an increasing range of services inside and outside of VA but having limited information about the quality of those services, making it sometimes difficult to make recommendations to Veterans and caregivers.

We partner with a lot of services or agencies that—because the VA cannot do everything; so, we have referrals especially the skilled nursing agencies, home hospice agencies, and home health aid agencies, and it's a lot of agencies, and it's difficult. We have our own need to make sure that they are providing the services that we're asking them to do and … It is not easy to monitor that. (Staff)

We do have quality measures that they must meet, and the only way sometimes that we can monitor that is by interviewing the family members and asking them some questions about how the agency is doing. (Clinician)

In addition, clinicians, staff, and leaders noted challenges related to the adequacy of some caregivers' skills given the complexity of the Veterans for whom they provide care and concern about staffing and workload capacity given the increasing number of Veterans needing an expanding scope of services. Finally, clinicians noted challenges providing assistance to rural Veterans, particularly those without caregivers, who have poor Internet access, and/or live distant from community‐based services, making it difficult to access resources for those living farther from VA care sites.

You know, the rural things. If a Veteran needs assistance say with physical things, and they're in a pretty remote part, it's very challenging. If they don't have a caregiver that can do that, it's challenging to get an agency or somebody in there to assist with that. (Clinician)

Caregivers reported needing significant help managing daily life. Challenges included not only juggling the provision of Veteran care and support but also the management of the household within which the care is occurring.

He gets real tired doing things, so I have to do mainly everything as far as taking care of the household, cooking, cleaning, washing, taking out the garbage, checking the mail. As far as anything with our car, I have to do that. The driving‐ I have to take him to and from his appointment, going to the grocery store, and all those things that he's not really able to do with his (condition) right now. (Caregiver, 65 and older)

Relatedly, we heard that what seem to be small disruptions to daily life, like a school holiday or taking a child to an appointment, have an outsized impact on caregivers' ability to also effectively provide the needed Veteran support.

He really needs a person with him. So, if I got to work, which I have to do and I have to go get kids from school and help them. I can't be all those places. I do think that if he had a routine with somebody and I had the luxury of taking time off, which I don't because if I do, I'll lose my job … He could be all right. (Caregiver, 65 and under)

Additionally, our caregivers echoed clinician responses regarding difficulty understanding the scope and quality of offered services. This was particularly noted with regard to respite services, leading caregivers to have concerns that Veterans would not receive their usual individualized care and would return home in a worsened condition.

3.4. Recommendations for caregiver support

Veterans and caregivers provided a number of recommendations for caregiver support. These are detailed in Table 3. There was relatively little overlap between Veterans' and caregivers' recommendations. Veterans focused on economic support, communication, system navigation, skills, and transportation, and caregivers focused on a need for an expanded scope of services and more help with daily activities. Caregivers did note that anything that supported the Veterans for whom they care also supports them as caregivers. Clinicians, staff, and facility leaders' recommendations overlapped significantly with those of Veterans, focusing on pay and compensation, care and compensation for caregiver injuries sustained during caregiver activities, improved inclusion of caregivers, better orientation to VA, more training options, expanded access to respite care, and greater ability to provide services to rural caregivers. Appendix S3 shows the overlap between Veterans, caregivers, and VA medical center personnel responses.

TABLE 3.

Recommendations for caregiver support

Support type	Veterans	Caregivers	Provider/staff/local program leadership
Economic support	All Veterans Increased payments for family caregivers Veterans <65 Educational opportunities Medical benefits Veterans 65+ Care/compensation for injuries related to caregiving	Caregivers <65 Grocery/food support	Pay for family caregivers Healthcare/compensation if injured while caregiving
Communication	All Veterans Improved communication between VA and caregivers		Improved inclusion of caregivers in conversations re: Veterans' needs and well‐being
System navigation	Veterans 65+ Orientation to VA and available services		Orientation to VA services and system
Skills to make life easier	Veterans <65 Educational opportunities Veterans 65+ Training		Training Increasing and improving respite care benefit
Transportation	Veterans 65+ More transportation assistance	Caregivers <65 Transportation to appointments
Information		All caregivers More information regarding non‐VA services
Help with daily activities		Caregivers <65 Child care Errands Caregivers 65+ Cooking Housework Home maintenance
Periodic check‐ins		Caregivers <65 Routine home visits Caregivers 65+ By advocate
Expanded support programs		All caregivers Groups Caregivers <65 Recreation Mentoring Mental health Caregivers 65+ Respite
Other	Veterans <65 Support for nonspouse caregivers Care for Veterans without family caregivers
Access			Meeting needs of rural caregivers

Clinicians, staff, and administrators also suggested that the VA put greater focus on four additional areas to ensure better support for caregivers. First, care coordination, to enhance and streamline coordination and communication among multiple clinicians and provide greater clarity regarding service availability. Second, quality measures for HCBS to help guide discussions with Veterans and families. Specifically, referral timeliness, Veteran feedback, Veteran satisfaction and experience, safety, and fulfillment of contracted services were all mentioned as important to monitor. Third, clinicians and staff voiced concerns for workload related to documentation, approval requirements for non‐VA services, and a need to coordinate care among an increasing number of services. Addressing these issues would enable clinicians and staff to have more time and greater ability to effectively support caregivers. Finally, they recommended strategic planning to anticipate service and personnel needs.

Many times, what happens is, without enough staffing, you put out the biggest fire in front of you, which is the referrals and the alerts that are coming through to establish new care or to renew established care that's already in place. But the quality assurance, the quality monitoring, sometimes falls to that second tier priority. (SW leadership)

3.5. Partnered activities

We used several strategies to collaborate and share our results with operational partners, policymakers, and stakeholders, detailed in Table 4. We have a regular, ongoing dialogue with a subset of partners and engage with others when we have relevant results or information. This communication has tended to be with leaders of various operational offices or stakeholder partners. These partners also provided feedback regarding the materials that would be most useful for their dissemination efforts and how to frame results to be most impactful across VA and with external partners. For example, the CVEO requested one‐page result summaries for dissemination to congressional aides.

TABLE 4.

Dissemination activities

Operational partners/stakeholders	Local/national	Activity	Level of engagement
Internal partners
VEO/Veterans Experience Office	National	Regular briefings One‐page summaries for dissemination In‐depth slide decks	Ongoing, two‐way discussion, including their asking questions and our providing results
Caregivers Support Program	Local and national	Written summaries	Periodic with their utilizing provided results
Office of Analytics and Performance Integration	National	Discussion Slide decks	Ongoing, two‐way discussion regarding how best to identify at‐risk Veterans and provide information to frontline clinicians
Geriatrics and Extended Care Dementia Initiatives Home‐based Primary Care Geriatrics, Research, and Education Centers	Local and national	Presentations Discussions	Ongoing, two‐way discussion, including their asking questions and our providing results with multiple offices within the Geriatrics and Extended Care group of services
External stakeholders
Veterans families, caregivers, and survivors advisory committee	National	Presentations Written 2‐page summaries provided 2×/year	Periodic with their utilizing results and posing new questions and research directions
Elizabeth Dole Foundation	National	Presentations Slide decks	Ongoing discussion to align and integrate work
Veteran Services Organizations	Local and national	Presentation	Periodic with our providing results and hearing feedback
Congressional staff	National	Research Day on the Hill Briefings	Periodic with our providing results and hearing feedback

This collaborative dialogue promotes bilateral communication with operational partners, policymakers, and stakeholders. For example, our findings regarding Veterans' and caregivers' perceived challenges in working across silos reinforced the implementation of facility‐based navigators as part of the Caregiver Support Program. Our findings were also relevant to the Military and Veteran Caregiver Experience Map (also referred to as “journey map”) created in partnership with the Dole Foundation, ¹⁶ and we participated in local training in San Antonio to provide detail regarding Veterans' and caregivers' perspectives to local program personnel. Finally, as part of our discussions with partners regarding our participants' experiences navigating HCBS, we received feedback regarding important future research directions, including the impact of COVID‐19 on caregivers and the impact of living in Veteran caregiving households on children and youth. Both of these were integrated into funded EDCoE follow‐up research projects.

4. DISCUSSION

Our work conducted in partnership with Veterans, caregivers, clinicians, staff, and other partners and stakeholders has underscored the importance of working directly with those groups and the relevance of the resulting data regarding gaps and strategies to close them. ⁶ First, understanding lived experiences of Veterans, caregivers, and front‐line clinicians and staff require direct dialogue. While VA and other partners use survey and standardized experience assessments regularly, these modalities may not offer the rich understanding afforded by interviews and focus groups. For example, operational data suggested that VA respite care was underutilized. Surveys of Veterans, caregivers, and survivors conducted by the Dole Foundation contemporaneously with our interviews and focus groups suggested that caregivers were aware of these services but were reluctant to use them. ¹⁷ An initial interpretation was that caregivers felt guilty about leaving the Veterans for whom they cared in the hands of others. However, as noted in our results, caregivers indicated that a lack of understanding of the services provided in respite care or their quality led caregivers to be reluctant to use those services. Second, direct communication between Veterans, caregivers, clinicians, staff, and VA researchers engenders trust with the larger VA system, allowing these groups to directly see VA commitment to understanding their needs. ¹⁸ These groups expressed appreciation for the opportunity to share their experiences with VA.

Our work is consistent with prior studies demonstrating the difficulties that caregivers experience understanding and navigating services. ¹⁹ , ²⁰ A notable, and surprising, difference between our work and that previously published relates to caregivers reporting feeling valued by the VA – a finding not noted in a prior study conducted by members of our group. ²¹ This difference may reflect the recent expansion of VA caregiver services and supports and the passage of the MISSION Act, ²² which occurred during the time of our data collection.

Our results yield several important new insights regarding caregivers' experiences and needs. First, caregivers reported the challenges they experience managing daily activities and responding to the small disruptions that frequently occur. The degree of challenge, and the outsize impact of small events, was unexpected. Providing services that enable caregivers to better manage their daily household activities would seem to have a potentially large positive impact on caregivers. Second, the VA healthcare system is complex and siloed from not only Veteran and caregiver perspectives but also clinician, staff, and local leadership perspectives. Keeping up to date regarding service availability and eligibility is challenging. The urgent need for navigation and coordination supports, including people who can keep up with frequently expanding VA and non‐VA offerings, was uniformly expressed by all respondent groups. Finally, stakeholders find it difficult to assess and communicate the quality of both VA and community‐based services. This is a significant barrier to Veteran and caregiver decision‐making and clinician and staff ability to engage in meaningful discussions and support shared decision making around service acceptance.

A vital aspect of our dissemination and collaboration efforts is the importance of contextualizing results for operational partners. This includes not only distilling results into key, actionable points but also putting results into the context of other data. This allows partners to understand where data is concordant with previous understandings and quickly identify any points of departure that might warrant further investigation. For example, we put our findings into the context of the Dole Foundation survey of Veterans, Caregivers, and Survivors. ¹⁷ While there were many similarities between the survey and focus group/interview results in terms of many of the reported challenges and improvement suggestions, we were able to provide more detail on the types of services and programs that would best support caregivers and to reinforce the importance of assessing service quality. Having clinician, staff, and leadership perspectives also reinforced key results, allowing us to “connect the dots” for operational partners, making patterns of results clearer. Using specific stories to contextualize findings to individuals' lived experiences was also helpful in communicating key points. Because our interactions with partners was ongoing and part of an iterative dialogue, our results were discussed in terms of insights and potential implications and with regard to relevance for policy. We did not present a formal set of recommendations but rather supported conversations about possibilities. These conversations encompassed strategies for helping Veterans and caregivers navigate across different services, effectively linking caregivers with community resources, and potential ways to expand support for caregivers with regard to finances and household tasks.

We sought to understand the perspectives of Veterans, caregivers, and clinicians, staff, and local leadership on HCBS. Because we focused on Veterans at high risk for institutional care and their caregivers, our results may not be as relevant to Veterans with fewer comorbidities and their caregivers. Similarly, we included respondents from four diverse sites, but they may not be representative of all Veterans, caregivers, and VA Medical Centers. Finally, we do not know if Veteran participants moved into institutional care after our data collection.

Despite these limitations, our in‐depth assessment of a broad sample of the experiences of Veterans with a significant burden of illness, their caregivers, and the VA personnel who care for them provides new insights regarding their needs and actionable approaches to meeting those needs. Our collaborations with the Veterans, caregivers, frontline clinicians, and local program staff and leaders enable us to understand their daily experiences of care. Our ongoing communication and partnership with policymakers and operational leaders inside and outside of the VA allow an ongoing dialogue that maximizes both the relevance and impact of our work. Contextualizing results enables partners to integrate our results into policy and operational initiatives.

Supporting information

Appendix S1. Supporting Information.

APPENDIX A.

Erin Bouldin, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Salt Lake City Health Care System and Geriatrics Research, Education, and Clinical Center; University of Utah School of Medicine); Benjamin Brintz, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Salt Lake City Health Care System and Geriatrics Research, Education, and Clinical Center; University of Utah School of Medicine); Jorie M. Butler, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Salt Lake City Health Care System and Geriatrics Research, Education, and Clinical Center; University of Utah School of Medicine); Stuti Dang, MD, MPH (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; Miami VA Healthcare System and Geriatrics Research, Education, and Clinical Center; University of Miami School of Medicine); Roxana E. Delgado, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; South Texas Veterans Health Care System; Long School of Medicine, University of Texas Health Science Center at San Antonio); Nytasia Hicks, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; South Texas Veterans Health Care System); Marika Humber, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Palo Alto Health Care System; Stanford University School of Medicine); Orna Intrator, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; Canandiagua VA Medical Center; University of Rochester); Andrea Kalvesmaki, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Salt Lake City Health Care System and Geriatrics Research, Education, and Clinical Center; University of Utah School of Medicine); Bruce Kinosian, MD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; Philadelphia VA Medical Center; The University of Pennsylvania); Victoria Ngo, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Palo Alto Health Care System; Stanford University School of Medicine); Kimberly S. Peacock, EdD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; South Texas Veterans Health Care System; Long School of Medicine, University of Texas Health Science Center at San Antonio); Mary Jo Pugh, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Salt Lake City Health Care System and Geriatrics Research, Education, and Clinical Center; University of Utah School of Medicine); Rashmi Risbud, MS (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Palo Alto Health Care System; Stanford University School of Medicine); Ronna Robbins, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; South Texas Veterans Health Care System); Diana Ruiz, RN (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; Miami VA Healthcare System and Geriatrics Research, Education, and Clinical Center); Rand Rupper, MD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Salt Lake City Health Care System and Geriatrics Research, Education, and Clinical Center; University of Utah School of Medicine); Megan E. Shepherd‐Banigan, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; Duke University School of Medicine, Center of Innovation to Accelerate Discovery and Practice Transformation, Durham VAMC); Ranak Trivedi, PhD (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Palo Alto Health Care System; Stanford University School of Medicine); Mikayla Viny, BS (Department of Veterans Affairs, Elizabeth Dole Center of Excellence for Veterans and Caregiver Research; VA Salt Lake City Health Care System and Geriatrics Research, Education, and Clinical Center; University of Utah School of Medicine).

Leykum LK, Finley EP, Penney LS, et al. Engaging Veterans, caregivers, and system stakeholders to improve VA home and community‐based services. Health Serv Res. 2022;57(Suppl. 1):66‐76. doi: 10.1111/1475-6773.13926