Building Trust and Partnership: Findings from A Needs Assessment of Military and Veteran Caregiving Families in Utah

doi:10.21203/rs.3.rs-3342940/v1

Identifying caregivers and their needs is a growing concern as overall, populations are aging and more care is provided at home rather than in clinical settings. Youth caregivers are underrecognized generally in the U.S. yet have become a priority to identify in Veteran caregiving families. However, little is known about this group and military and Veteran families may not readily self-identify due to stigma or fear of repercussions. A group of researchers affiliated with the Department of Veteran Affairs teamed with a community partner to conduct a needs assessment and town hall to better understand the caregiving needs of military and Veteran families in Utah, using a community-based research partnership approach. The largest area of need reported was special needs care for a child with disabilities younger than 18 (40%), followed by special needs care for a family member with disabilities 18 years or older (30%) and caregiver support for an older/senior family member (30%). A third of families indicated children aged 11 or younger and children aged 12–18 supporting caregiving activities at home. Many families reported multiple, overlapping needs In the town hall, families discussed the needs assessment and provided more detail on needs and family contexts. The results of the study are being used to design a caregiving support program hosted by the community partner and are informing a research strategy to better understand military and Veteran caregiving needs nationally.

Family caregiving

Veterans

Military

Community based research partnership

The term “caregiving” – providing support or assistance to people with disabilities or health needs – encompasses a variety of relationships and tasks as well as settings. A common association for the term “caregiver” is of a mother caring for a child, especially at home. In recent years with an aging population, a “caregiver” may also often be thought of as an adult caring for another aging adult, often a daughter for a parent. In a clinical setting, a “caregiver” may be a nurse providing care in a nursing home or day care facility. Yet these common definitions mask the fact that a “caregiver” can be of any age and relationship to the person for whom they provide care. In fact, the complexities of various relationships of caregivers to care recipients can render caregiving in multiple, varied contexts invisible [1 2]. Caregivers that are under-recognized include children, elder adults caring for younger adults or children, and unmarried or non-traditional partners [1–3]. It has recently been estimated that 2.3 million grandparents in the United States are responsible for the basic needs of one or more grandchildren under age 18 living with them, and approximately 3.4 million child caregivers under age 18 are serving as secondary caregivers for an adult [1]. Caregivers in situations that are not widely recognized are not only isolated by the nature of their invisibility, but they also remain unsupported by policy and systems (e.g. healthcare, education, respite services) that otherwise could help them [2].

1.1 Military and Veteran Caregiving Youth

Within the military and Veteran community, identifying youth caregivers has become a national priority. In 2017, a panel review of caregiving within military families recognized children as “forgotten secondary caregivers”, especially in military families where a culture of service is embedded within family dynamics and children may be supporting parents in their efforts to return to duty [4]. Subsequent reports on military readiness recognized the role caregiving can play in a military member’s decision to enlist and remain enlisted, for both men and women service members [5]. By 2021, efforts were underway nationally to identify youth caregivers in military and Veteran homes through work initiated by the Elizabeth Dole Foundation (EDF) [6], and the Veteran Affairs Elizabeth Dole Center of Excellence for Veteran and Caregiving Research (VA Dole COE) [7]. In November of 2021, the White House issued a directive pledging support for children in military and Veteran caregiving families [8], providing critical funding for research in this area.

The initial research on youth in military and Veteran caregiving homes highlighted key challenges with developing research to better understand these families’ caregiving contexts, including fears of stigma or potential reprisals for involving youth in caregiving activities, which can keep families from reaching out for services or identifying youth as caregivers in the home [6]. As such, our team theorized that a community-based approach might help to alleviate concerns and develop military and Veteran caregiving youth research aligned to family desires and needs.

Community-based participatory research (CBPR) approaches place the researcher as a co-learner alongside community members [9], and has been especially helpful in youth research where establishing access to youth requires trust of parents as well as minors in the researcher as well as the research process [10]. Overall, in health research, there has been a historical lack of involvement of community members in the research development process, especially from underrepresented groups, leaving vital knowledge excluded [11 12]. CBPR methods provide a promising approach to reduce these disparities as collaborating with members of communities with lived experience of a phenomenon (e.g. caregiving for a person with disabilities) can produce health research and results that are more relevant to people living through these experiences [13–16].

1.2 Community Context - Utah

As Utah has a large military base and the VA Salt Lake City Healthcare System provides services for a large catchment area, researchers affiliated with the Utah Family Caregiving Collaborative and the VA Dole COE sought to understand military and Veteran caregiving needs in Utah, especially where children might be in the home. In 2022, it was estimated that nearly one in five adults in Utah (~ 400,000) are providing care for a family member or friend with a serious condition or a disability [17]. Of these, it was estimated 12% are supporting children with disabilities, 16.5% partners/spouses, parents (35%), other relatives (22%), and non-family members (13%). While children were not included in this estimation, the report emphasized that the need for family caregivers is expected to grow faster than the population in Utah, which by default would require caregiving by younger citizens [17]. The Census data that was analyzed to produce the report could not provide clear statistical counts for Veterans living within the state, military members, or their children, desegregated from the general population.

Our team sought to establish a CBPR approach to build upon for future caregiving work. The short-term goal, reported in this manuscript, was to conduct a needs assessment of caregiving in military and Veteran families in Utah. The long-term goal is to develop better support systems for military and Veteran caregiving families through a community-academia research partnership.

2.1 Study Design

This study is based on a CBPR research-community partnership model in which conducting a needs assessment is the first step to understand and address community needs. This is followed by community review to provide feedback and establish collective goals to begin to address needs through research and/or other collaborative work. The research team developed a short online questionnaire, forged a strong community partnership with a leading organization for military and Veteran families in Utah to help design and recruit for the questionnaire, and then hosted a town hall with the partner to share the findings and discuss next steps for research and community collaboration. The study procedures were reviewed and determined to be non-human subjects research by the University of Utah Institutional Review Board.

2.1.1 Community Partnership

Prior to beginning this study, the lead investigator reached out to leadership of the Utah Chapter of Blue Star Families (BSF) to discuss the study and gather initial ideas for what to include in a needs assessment. BSF is the nation’s largest chapter-based military and veteran family support organization and has 13 chapters across the United States that tailor programs based on the community and its needs. BSF has developed a suite of welcome and peer to peer support programs to meet the unique needs of military and Veteran families to foster and create vibrant communities of support providing year-round opportunities to members to connect with each other and their civilian neighbors. One such program is the Caregivers Empowering Caregivers (CEC) Program designed to connect a community of military caregivers. This cohort model program invites caregivers to participate in 6–8 events in a year focused on the importance of self-care and building connections with others facing some of the same challenges. BSF Utah Chapter leadership were interested in supporting a community-academia partnership to better understand the needs of Utah military and Veteran caregiving families to inform developing a CEC program in Utah.

2.1.2 Needs Assessment Questionnaire

The needs assessment questionnaire was developed by the research team, based on concerns raised in Utah’s Invisible Workforce [17] and conversations with BSF Utah Chapter leadership. The first four items were designed as screener questions to ensure that the survey was completed by Utah residents over the age of 18 who were part of a military or Veteran household that included children younger than 18. Once participants passed this initial screening, they were invited to complete the remainder of the questionnaire. The full questionnaire, including screener, had 21 items and took approximately 10 minutes to complete.

Invitations to participate in the needs assessment questionnaire were posted in the VA Salt Lake City Hospital, on the BSF Utah Facebook page, and on the lead investigator’s LinkedIn page. BSF Utah Chapter emailed information about the questionnaire to individuals registered in their network. The needs assessment questionnaire was administered online using Qualtrics from October 1 to November 1, 2022. The survey included 21 questions and took approximately 10 minutes to complete. No responses were required for any questions except the screening items. A $10 Amazon gift card was offered as an incentive to participate. At the end of the survey, respondents were instructed to please email the lead investigator if they would like to attend the town hall to review results.

Questionnaire items. The questionnaire was organized into three main sections: household composition, caregiving needs, and caregiving research. In household composition, participants were asked to indicate how many adults, children aged 0–11, and children aged 12–17 live in the home, and whether any parents, grandparents, or older adults live with the respondent. In the section for caregiving needs, respondents were provided a list of potential caregiving needs including caring for children not in school, afterschool support needs, support in caring for children or adults with disabilities, caregiving support for older family members, and an option to write in items not included in the list. Participants were asked to identify other family members who help support caregiving activities and describe what activities these family members do. Participants were asked to identify other groups that help meet their caregiving needs, to describe support they need but currently don’t have, and how their caregiving needs will change over time. Participants were asked how concerned they were about meeting future caregiving needs, and how caregiving will affect their children. The last question in this section asked participants if they help support or care for another person that does not live with them, and if so, to describe the kind of activities they do to support these individuals. The last section of the questionnaire, caregiving research, asked participants to rate the importance of involving families in military and Veteran caregiving research. Participants were asked if they would be willing to participate in a caregiving study through the VA, and to explain why or why not. Finally, participants were asked to indicate their interest in how they would like to participate in a family caregiving research study: alone, with the care recipient, with other adults who help provide care, and with their children who help or do not help provide care. See Attachment for the full needs assessment questionnaire.

2.1.3 Town Hall

Following the questionnaire administration period, a town hall was hosted by BSF Utah Chapter to review and discuss the need assessment results. Allowing the community to review and discuss results is an important step in developing community-academia partnerships and ensuing work. BSF organized a registration page for the town hall through their secure event platform. Questionnaire completers who had provided contact information were emailed an invitation to register. In addition, notice of the event was posted on BSF Utah Chapter social media pages, and the lead investigator’s LinkedIn page. The town hall was hosted on November 12, 2022, as a hybrid (online and in person) event. BSF Utah Chapter hosted the webinar through their professional Zoom account to be able to set up online, closed registrations and record the event. The lead investigator arranged a private conference room at the Salt Lake City Public Library, Downtown location, and logged into the Zoom meeting yet was available for in-person attendees. One family, a mother and teenage daughter, attended in person. The remaining ten attendees joined on Zoom. The event opened with an introduction from BSF leadership and the lead investigator describing the study, and the researchers and BSF collective interest in better understanding the needs of the Utah military and Veteran caregiving community. Questionnaire results were presented on a PowerPoint presentation and town hall attendees were encouraged to comment and discuss any item of interest. The town hall lasted 1.5 hours. The town hall review provided context to many of the findings from the questionnaire. The lead investigator took notes of the feedback and discussions in the town hall as participants discussed topics. The town hall was recorded by BSF and provided to the lead investigator two weeks after the event.

2.1.4 Participants

Participants were at least 18 years old, lived in Utah, and were part of a military or Veteran caregiving family with at least one child under the age of 18 living at home. Ten individuals completed the needs assessment survey. Twelve individuals attended the community town hall to review results and provide feedback. Eight of these individuals had completed the survey.

2.2 Analyses

Scaled questionnaire items were summarized as descriptive statistics. Open-ended responses were used to provide context to summary statistics where available. One open-ended item asked participants to list the kinds of caregiving activities other family members supported. Eight respondents provided details of multiple types of caregiving activities. These responses were organized into different categories and frequencies for each type of caregiving category were calculated. Another open-ended item asked participants to provide detail on how they think their family's caregiving needs will change over time. These were first categorized as whether the participants identified an increase or decrease, and for increased needs, the general type of need.

Here we present the results of the needs assessment survey in combination with the feedback from town hall participants to contextualize findings.

3.1 Survey Respondent Characteristics

Survey completers included Veterans (50%), spouses of Veterans (30%), and active military members (20%). Respondents were primarily 26-45 years old (80%), and 100% had children under the age of 18 at home (consistent with inclusion criteria). Half of survey respondents reported living in a two-adult household, 20% lived in a single adult household, 20% lived in a household comprised of three adults, and one respondent lived in a household with more than five adults. One-third of respondents indicated parents or grandparents lived with them. In the town hall, individuals who completed the questionnaire confirmed that they did indeed have children at home, and most had a spouse, though in some cases this was one of the individuals needing care. A few town hall attendees indicated they had at least one other adult needing care. Two families cared for an older adult (a parent or grandparent) living with them, and one family reported caring for an adult family member (relationship and age not disclosed) with a disability.

3.2 Current Caregiving Needs

Most survey respondents indicated current caregiving needs. The largest area of need reported was special needs care for a child with disabilities younger than 18 (40%), followed by special needs care for a family member with disabilities 18 years or older (30%) and caregiver support for an older/senior family member (30%). Twenty percent indicated they needed “other” support, identified in open-ended responses as “respite care”. Table 2 provides results from questions on current caregiving needs, caregiving support and activities, and caregiving gaps, which we discuss further below.

3.3 Caregiving Support and Activities

When asked who provides additional help at home to support caregiving needs, 40% indicated children younger than 18 helped, 30% indicated a spouse or partner helped, and 30% indicated another family member helped. Participants described ways in which these family members supported caregiving in seven categories: meal preparation, physical assistance, household chores, medical support, emotional support, and caring for children. Meal preparation included terms such as “meal prep”, “cooking”, or “preparing food.” Physical assistance included descriptions of helping feed, lift items for, or support the walking or movement of a care recipient. Household chores included any description involving cleaning, lawn care, or the words “household chores”. Medical support activities included “dispensing medication” and “healthcare support”. Emotional support was described by two respondents, and one respondent described another family member “caring for children when Veteran is unable.” When asked if other groups helped support caregiving activities 40% of respondents indicated they had no additional support, and only 10% indicated they received support from any of the sources listed including neighbors, friends, family who do not live with them, paid caregivers, church, or religious community.

In the town hall, caregiving support and activities were discussed, and many attendees described how their children or other family members provided “emotional support” more than they realized. One mother and teenager described how the teenager supported her Veteran father with his caregiving needs and, during difficult times, provided comfort to younger siblings who were not yet fully aware of their father’s condition or needs. A few families described helping other families they knew who “were in the same boat as them”, offering meals, respite, emotional support through phone calls, or trips to the store or pharmacy to help other caregiving families manage their day-to-day activities.

3.4. Caregiving Gaps

When asked to identify what kinds of support they need but do not have, comments (provided in Table 2) included childcare for children not in school, social support, emotional support, community support, training to be able to navigate VA services, a living/care situation for an adult family member with disabilities, and other support such as a “Help calm him down. Provide a safe place for him to go.”

Town hall participants discussed the current needs listed. They agreed that childcare needs for children not in school was a pressing need for a parent, especially if they were caregiving for another family member (adult or child) with special needs, an aging parent, and trying to balance caregiving duties with employment or other responsibilities. While only one respondent wrote they needed “training on how to navigate VA services” this sparked a lengthy conversation in the town hall on how challenging navigating VA services can be for those supporting Veterans. Supporting other, non-Veteran family members with disabilities (both children and adults) were discussed at length. Some families had children with special needs as well as adult care recipients with special needs. One family reported using day care facilities for an adult family member with disabilities, but that this service was limited. Finally, the town hall participants discussed the comment on needing to have a “safe place” for a family member to go and calm down. Town hall attendees agreed this is a critical need for member of a family who struggles with a disability that causes emotional dysregulation – a common side effect of many other physical or cognitive disabilities for both children and adults [18 19].

3.5 Future Caregiving Needs

In the needs assessment, respondents had the ability to describe anticipated caregiving needs. Of those who provided comments, 78% indicated they thought their needs would increase. Some described how the needs will increase for their current care recipients (44%) and some described needing more support for themselves in the future (33%). When asked if they were concerned about future caregiving needs, half were a little concerned (50%), and 40% were very concerned. Only 10% were not concerned. When asked if they were concerned about how caregiving needs will affect their children, 60% were very concerned and 40% were a little concerned; not a single respondent indicated they weren’t concerned. See Table 3.

Open-ended responses about future caregiving needs described uncertainty about what their needs would be in the future but also expected they may have additional caregiving responsibilities, including for their children, current care recipient, parents or grandchildren. One respondent who is a Veteran, described concern for his/her children’s conditions, and that his own care needs would continue to increase. Caregivers of Veterans expressed concern about supporting the increasing, long-term care needs that are already challenging. One participant wrote, “our needs will increase over time. My spouse is still relatively young, but we know his condition will worsen as he ages. We really don't know the full extent of what kinds of services or equipment we will need to take care of him.” Only one individual indicated their caregiving needs might decrease once their children became older and they would also have “fewer needs” for an adult family member with disabilities.

The comments were reviewed in full in the town hall, which sparked conversations about how caregiving needs change and shift not just over time, but under specific conditions. Many were concerned that if not now, they would have a future need for a facility for a family member with disabilities. In the town hall, participants expressed concern that new injuries or illnesses might emerge within the family over time, and how a military move or deployment (and related injury) might change their current situation. They discussed how for a military family, frequent relocations can complicate caregiving as they must start the process of locating support services all over again. For children, many services such as childcare or afterschool programming, as well as support services for children with special needs, are provided on or through the military base, but for an adult dependent with disabilities, this is less often the case. Another concern expressed at the town hall was that in general, military families have to prepare to be future caregivers of a military service member who may sustain injuries or become otherwise disabled (e.g. experience conditions such as PTSD) during service.

3.5 Establishing Research Interest and Collaboration

A goal of CBPR is to align health research to the needs of the community to be able to effectively design support services, interventions, and policies that can directly and immediately improve community outcomes [13]. While the primary goal of this phase of the project was to conduct a caregiving needs assessment among military and Veteran caregiving families with children in Utah, a secondary goal was to begin establishing a community-academia research partnership. Questionnaire participants were asked if they would be interested in participating in a caregiving study at or through the VA. Three survey participants who indicated they would be interested provided rich context as to their motivations. These participants felt it was critical for VA to incorporate the voices of caregivers in program design and to focus on the health and well-being of caregivers directly. One wrote, “Yes. I think the VA will only be able to meet the needs of caregivers with caregiver input. Oftentimes the focus is on the Veteran and the caregivers and others in the home are not seen therefore their needs are not always being met.”

At the town hall, the group discussed what different kinds of caregiving research might be like. Caregiving studies are ongoing at the VA and the local university, but many of these families expressed how hearing about the study through BSF, an agency they trusted, helped them feel safer to express their opinions. One Veteran who participated met the lead investigator through another study being conducted onsite at the VA and so felt “safe enough” to participate and provide information about his family, especially since the survey and town hall would remain anonymous. The mother and teen who attended the town hall expressed how important it was to meet the researcher and gain trust in the process and expressed interest in working to develop a community advisory board for future caregiving research that could also involve military youth.

A major goal of this study was to begin to establish community relationships between military and Veteran caregiving families and researchers working to better understand the needs of the community, the role of caregiving youth, and the system of care. An important outcome of the project was developing a strong community partnership with the BSF Utah Chapter leadership, local members, and researchers with the VA Dole COE. The needs assessment and town hall discussion provided important information and context with which to build a community research partnership to address caregiving needs.

Concerns about how to handle current caregiving needs as well as anticipated, future needs was paramount. Understanding the role of youth in a caregiving home is an important emerging area in caregiving research, and these results also help provide insight into how researchers can help work with families of any background to better develop research that is aligned to their interests and needs. Caregivers described complex family dynamics in which children help in the home with caregiving tasks and might also need care themselves as part of the natural process of growing up, or because of their own disability in addition to those of the other care recipients in the home. This is consistent with the findings reported by the Elizabeth Dole Foundation’s first study on military and Veteran caregivers under the age of 18, which found these “Hidden Helpers” both provide care and have their own needs as developing children and adolescents. [6]

Participants described how the process of being invited to participate in the study through a trusted organization, and meeting the lead researcher, helped them to trust the process would be designed to protect their privacy and foster strong relationships to develop research aligned to community needs. This is consistent with the experiences of people participating in CBPR research projects in diverse communities where the researcher’s need to demonstrate cultural sensitivity to a unique group identity is an important consideration when building community partnerships [20]. While this needs assessment may not be representative of the larger military and Veteran population nationally and only represents a small sub-set of individual experiences in Utah, the insights gleaned from the study are being use develop the next stage of community programming and research.

Besides establishing the academia-community partnership, important developments have resulted from the study. The BSF Utah Chapter is using results to provide caregiving programming tailored to Utah families through their Caregivers Empowering Caregivers program, which is conducted through local chapters and designed to provide respite and support to military and Veteran caregivers. The research team is using the results of this study and the community-academia partnership with BSF to develop a research agenda to better understand the needs in military and Veteran caregiving families and how best to incorporate and account for youth caregivers. Building trust in the research process and recognition for caregivers who are often overlooked by society was an important outcome of this process for all involved. This work will form the foundation for future efforts to develop better support systems for military and Veteran caregiving families.

Competing interests: None

Acknowledgements: We would like to acknowledge support from the University of Utah Family Caregiving Collaborative. This material is the result of work supported with resources and the use of facilities at VA Salt Lake City Health Care System.

Institutional Review Board (Exempt): The study procedures were reviewed by the University of Utah IRB and were determined to be non-human subjects research.

Data Availability Statement: As this study is a needs assessment with a small number of participants, it may be possible to identify individuals even within a de-identified dataset. A requirement for publishing findings from this study from the IRB is that no participant may be identified in published results. Qualitative data in the original survey dataset were modified to remove identifying information. It is not possible to remove identifying information from the Town Hall data collection. The data collected during the BSF Town Hall are not available as participants would be identifiable. The deidentified, modified survey data set used for generating tables 1-3 are available upon request as necessary from the corresponding author.

Disclaimer: The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.

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Table 1. Hidden Heroes Utah Needs Assessment Survey Family Characteristics

	Respondent characteristics
	Age	%
26 - 45 years		80%
46 - 65 years		20%
	Military status
	Veteran	50%
	Family member/spouse	30%
	Active-duty military	20%
	Household composition
	Adults in home (age 18+)	%
	1 adult	20%
	2 adults	50%
	3 adults	20%
	More than 5	10%
	Living with parents, grandparents, or older adults	30%
	Children in home (age 0 – 17)
	Children age 0 – 11
	None	20%
	One	30%
	Two	20%
	Three	10%
	Four	20%
	Children age 12 - 17
	None	20%
	One	50%
	Two	20%
	Three	10%
	Four	0

Table 2. Current Caregiving Needs, Supports, and Activities

What are your current caregiving needs?
	Special needs care for a child with disabilities younger than 18 (including school support)	40%
	Special needs care for a family member with disabilities 18 years or older	30%
	Caregiver support for an older/senior family member	30%
	Child/daycare for children not enrolled in school	10%
	Afterschool programs	10%
	Other: Respite	20%
	Our family currently has no caregiving needs	10%
In your household, which family members contribute to support caregiving?
	Myself	40%
	My spouse/partner	40%
	My child/children age 11 or younger	30%
	My child/children age 12-17	30%
	Another family member	20%
	Other	20%
Caregiving activities family members support
	Meal prep	75%
	Physical assistance	38%
	Household chores	38%
	Running errands/shopping	25%
	Medical support	25%
	Emotional assistance	25%
	Caring for children	13%
Do any of the following groups help you meet your current caregiving needs?
	We have no additional help	40%
	Neighbors	10%
	Family members who don’t live with us	10%
	Paid caregivers	10%
	Friends	10%
	Church or religious community	10%
	Other: day programming for adult family member with disabilities	10%
What kind of support do you need that you currently don't have?
	Childcare for children not in school.
	Social support.
	Emotional support. Community support.
	Training on how to navigate VA Services.
	A living/care situation for a disabled adult family member.
	Help calm him down. Provide a safe space for him to go.

Abbreviations: VA: Veteran Affairs

Table 3. Future Caregiving Needs And Concerns

How do you think your family's caregiving needs will change over time?
	Increase	78%
	My care recipient(s) needs will increase	44%
	My own care needs will increase	33%
How concerned are you about meeting your future family caregiving needs?
	I am a little concerned	50%
	I am very concerned	40%
	I am not concerned	10%
Are you concerned about how caregiving needs will affect your child/children?
	I am a little concerned	40%
	I am very concerned	60%
	I am not concerned	0

No competing interests reported.

APPENDIX.docx

Building Trust and Partnership: Findings from A Needs Assessment of Military and Veteran Caregiving Families in Utah

Status:

Version 1

Abstract

1. INTRODUCTION

1.1 Military and Veteran Caregiving Youth

1.2 Community Context - Utah

2. METHODS

2.1 Study Design

2.1.1 Community Partnership

2.1.2 Needs Assessment Questionnaire

2.1.3 Town Hall

2.1.4 Participants

2.2 Analyses

3. RESULTS

4. DISCUSSION

Declarations

References

Tables

Additional Declarations

Supplementary Files

Status:

Version 1