Comprehensive Caregiver Supports and Ascertainment and Treatment of Veteran Pain.

Disabled Veterans commonly experience pain. The Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides training, a stipend, and services to family caregivers of eligible Veterans to support their caregiving role. We compared ascertainment of veteran pain and pain treatment through health care encounters and medications (pain indicators) of participants (treated group) and non-participants (comparison group) using inverse probability treatment weights. Modeled results show that the proportion of Veterans with a pain indicator in the first year post-application was higher than that pre-application for both groups. However, the proportion of Veterans with a pain indicator was substantially higher in the treatment group: 76.1% versus 63.9% in the comparison group (p < .001). Over time, the proportion of Veterans with any pain indicator fell and group differences lessened. However, differences persisted through 8 years post-application (p < .001). PCAFC caregivers appear to help Veterans engage in pain treatment at higher rates than caregivers not in PCAFC.

Predictors of discharge from the VA Caregiver Support Program.

OBJECTIVES: The Department of Veterans Affairs (VA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) is a clinical program providing training, a monthly stipend, and other services to caregivers of qualifying post-9/11 veterans with service-related injuries. Veteran-caregiver discharge from the program occurs when veteran recovery is achieved, participation is no longer in the veteran's best interest, or caregiving ceases. Public scrutiny about potentially inappropriate discharges resulted in a nationwide freeze on all discharges. PCAFC expanded to pre-9/11 veterans in October 2020; thus, lessons learned can continue to inform the expanded program. We pursued 3 objectives: (1) describe the discharge rate, reasons for discharge, and veteran and caregiver characteristics by discharge status; (2) identify factors associated with discharge from PCAFC nationally; and (3) characterize network variation in discharge predictors. STUDY DESIGN: Retrospective observational study using VA administrative data from fiscal year (FY) 2011 to FY 2017. METHODS: Using multivariable Cox proportional hazards regression, we examined factors associated with PCAFC discharge among veterans and caregivers enrolled in PCAFC during FY 2011 to FY 2016. RESULTS: A total of 40.5% of all participants were discharged. Nonspouse caregivers and those applying in later years had the highest rates of discharge; spouse caregivers and those applying in earlier years had the lowest rates of discharge. In 4 of 18 networks, caregivers of Black veterans faced higher rates of discharge compared with caregivers of White veterans, and in 1 network, they faced lower rates of discharge. Substantial variability in rates of discharge was also observed across Veterans Integrated Service Networks. CONCLUSIONS: Training on clinically appropriate discharge criteria could improve practice and increase equity.

Improving Uptake of a National Web-Based Psychoeducational Workshop for Informal Caregivers of Veterans: Mixed Methods Implementation Evaluation.

BACKGROUND: Although web-based psychoeducational programs may be an efficient, accessible, and scalable option for improving participant well-being, they seldom are sustained beyond trial publication. Implementation evaluations may help optimize program uptake, but few are performed. When the US Department of Veterans Affairs (VA) launched the web-based psychoeducational workshop Building Better Caregivers (BBC) for informal caregivers of veterans nationwide in 2013, the workshop did not enroll as many caregivers as anticipated. OBJECTIVE: This study aims to identify the strengths and weaknesses of initial implementation, strategies likely to improve workshop uptake, whether the VA adopted these strategies, and whether workshop enrollment changed. METHODS: We used mixed methods and the Promoting Action on Research Implementation in Health Services (PARIHS) implementation evaluation framework. In stage 1, we conducted semistructured interviews with caregivers, local staff, and regional and national VA leaders and surveys with caregivers and staff. We collected and analyzed survey and interview data concurrently and integrated the results to identify implementation strengths and weaknesses, and strategies likely to improve workshop uptake. In stage 2, we reinterviewed national leaders to determine whether the VA adopted recommended strategies and used national data to determine whether workshop enrollment changed over time. RESULTS: A total of 54 caregivers (n=32, 59%), staff (n=13, 24%), and regional (n=5, 9%) and national (n=4, 7%) leaders were interviewed. We received survey responses from 72% (23/32) of caregivers and 77% (10/13) of local staff. In stage 1, survey and interview results were consistent across multiple PARIHS constructs. Although participants from low-enrollment centers reported fewer implementation strengths and more weaknesses, qualitative themes were consistent across high- and low-enrollment centers, and across caregiver, staff, and leadership respondent groups. Identified strengths included belief in a positive workshop impact and the use of some successful outreach approaches. Implementation weaknesses included missed opportunities to improve outreach and to better support local staff. From these, we identified and recommended new and enhanced implementation strategies-increased investment in outreach and marketing capabilities; tailoring outreach strategies to multiple stakeholder groups; use of campaigns that are personal, repeated, and detailed, and have diverse delivery options; recurrent training and mentoring for new staff; and comprehensive data management and reporting capabilities. In stage 2, we determined that the VA had adopted several of these strategies in 2016. In the 3 years before and after adoption, cumulative BBC enrollment increased from 2139 (2013-2015) to 4030 (2016-2018) caregivers. CONCLUSIONS: This study expands the limited implementation science literature on best practices to use when implementing web-based psychoeducational programs. We found that robust outreach and marketing strategies and support for local staff were critical to the implementation success of the BBC workshop. Other health systems may want to deploy these strategies when implementing their web-based programs.

'The face of the programme': How local clinicians shape decisions about eligibility for a national caregiver support programme in the USA.

OBJECTIVE: To examine the causes of variation for determining clinical eligibility for a national caregiver programme in the US Veterans Health Administration (VHA) and so help inform standardization of clinical eligibility assessment for support and establish conditions for more consistent caregiver experiences across the USA. METHODS: We used mixed methods, including a national survey of caregiver support coordinators (CSCs) across VHA medical centres, semi-structured interviews with a purposive sample of 53 CSCs and interdisciplinary team members, and observations of four VHA medical centre sites. RESULTS: A majority (70%) of CSCs across VHA medical centres reported that they used interdisciplinary teams to conduct assessments. Interdisciplinary teams were seen to help mitigate potential harm to therapeutic relationships from eligibility decisions. Survey respondents reported using a range of assessment tools provided by the national VHA Caregiver Support Program office, but participants expressed concerns that the tools did not necessarily effectively assess clinical need. Some local sites had developed innovative person-centered approaches, in which the assessment process provided an opportunity to assess veterans' holistic clinical needs, in contrast to a programme-centered approach, which focused on assessing whether veterans/their caregivers meet eligibility criteria. CONCLUSION: Discretion by those involved in making decisions on programme eligiblity is important for implementing a national social services programme based on clinical need. Interdisciplinary teams can help mitigate potential harm to therapeutic relationships. Discretion allows for innovation. This work has implications for setting policy in other programme contexts in which applying eligibility criteria requires clinical judgement.

Supporting family caregivers of Veterans: Participant perceptions of a federally-mandated caregiver support program.

OBJECTIVES: To understand patients' and caregivers' experiences with and perceptions of a federally-mandated program within the Department of Veterans Affairs (VA) that provides educational and monetary support to family caregivers of post-9/11 Veterans. METHODS: Twenty-six Veterans and their family caregivers were recruited to participate in individual and dyadic interviews. Interviews lasted between 60 and 90 min and took place between August 2016 and July 2018 in Oregon and Louisiana. Interviews were recorded, transcribed and coded by multiple team members. Recurrent themes and categories were identified through close examination of coded text and comparison within and across transcripts. RESULTS: Three main themes emerged in the data: 1) appreciation of the caregiver program for validating and compensating family caregiver work; 2) perception that some caregiving activities are less visible, and thus go unrecognized and uncompensated; 3) concern about loss of benefits. CONCLUSIONS: Implications and policy recommendations for programs to support family caregivers, both within the VA and in the context of the broader national movement to support family caregivers, are discussed.

Comprehensive support of family caregivers: Are there health system cost offsets?

OBJECTIVES: To examine the effect of the Department of Veterans Affairs' (VA) Program of Comprehensive Assistance for Caregivers (PCAFC) on total VA health care costs for Veterans. DATA SOURCES: VA claims. STUDY DESIGN: Using a pre-post cohort design with nonequivalent control group, we estimated the effect of PCAFC on total VA costs up through 6 years. The treatment group included Veterans (n = 32 394) whose caregivers enrolled in PCAFC. The control group included an inverse probability of treatment weighted sample of Veterans whose caregivers were denied PCAFC enrollment (n = 38 402). DATA EXTRACTION: May 2009-September 2017. PRINCIPAL FINDINGS: Total VA costs pre-PCAFC application date were no different between groups. Veterans in PCAFC were estimated to have $13 227 in VA costs in the first 6 months post-PCAFC application, compared to $10 806 for controls. Estimated VA costs for both groups decreased in the first 3 years with a narrowing, but persistent and significant, difference, through 5.5 years. No significant difference in VA health care costs existed at 6 years, approximately $10 000 each, though confidence intervals reflect significant uncertainty in cost differences at 6 years. CONCLUSIONS: Increased costs arose from increased outpatient costs of participants. Sample composition changes may explain lack of significance in cost differences at 6 years because these costs comprise of early appliers to PCAFC. Examining 10-year costs could elucidate whether there are long-term cost offsets from increased engagement in outpatient care.

Connecting Caregivers to Support: Lessons Learned From the VA Caregiver Support Program.

Development and evaluation of supportive caregiver interventions has become a national priority. This study's aim was to evaluate how caregivers participating in the Department of Veterans Affairs (VA) Caregiver Support Program (CSP) use and value supportive services. Qualitative semi-structured interviews (N = 50 caregivers) were the core of a mixed-methods design, and surveys (N = 160) were supplemental. Caregivers who had used CSP services valued emotional, functional, and health care navigational support, calling support groups and the program coordinator their "lifeline." However, many described a lack of connection with the program-not knowing about or successfully engaging in program services-and needed more information about available resources. Caregivers in rural areas or caring for individuals with specific diseases reported needing tailored services to meet their unique needs. Policy makers and practitioners should proactively promote supportive services for caregivers. Future research should explore strategies for reducing barriers to accessing tailored support to meet the needs of a diverse caregiver population.

Including Family Caregivers In Seriously Ill Veterans' Care: A Mixed-Methods Study.

Family caregivers often serve as unpaid members of the home and community-based care workforce for people with serious illness; as key partners in the home-clinic continuum, they should be included in health care teams. The Campaign for Inclusive Care is an initiative within the Veterans Affairs health care system to improve provider practices for including caregivers of military members in treatment planning and decisions. We defined inclusive care using a literature review, provider interviews, and a caregiver survey. We found that inclusive care involves clear definition of the caregiver role, system policies for inclusion, assessment of caregivers' capacity, explicit involvement of caregivers, and mutuality in caregiver-provider communication. We recommend solutions based on this definition that can inform development of a national caregiver strategy, required of the Department of Health and Human Services by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018.

Comprehensive Family Caregiver Support and Caregiver Well-Being: Preliminary Evidence From a Pre-post-survey Study With a Non-equivalent Control Group.

Introduction: In May 2010, the Caregivers and Veterans Omnibus Health Services Act of 2010, was signed into law in the United States, establishing the Program of Comprehensive Assistance for Family Caregivers (PCAFC) provided through the VA Caregiver Support Program (CSP). Prior to this program, over half of family caregivers reported being untrained for the tasks they needed to provide. The training through PCAFC represents the largest effort to train family caregivers in the U.S., and the features of the program, specifically a monthly stipend to caregivers and access to a Caregiver Support Coordinator at each VA medical center nationally, make it the most comprehensive caregiver support program ever enacted in the U.S. Methods: The purpose of this study is to examine the association between PCAFC participation and caregiver well-being following enrollment, comparing participating PCAFC caregivers to caregivers who applied to but were not approved for PCAFC participation (non-participants). Well-being is defined using three diverse but related outcomes: depressive symptoms, perceived financial strain, and perceived quality of the Veteran's health care. Additional well-being measures also examined include the Zarit Burden Inventory and positive aspects of caregiving. Results: The survey sample comprised of 92 caregivers approved for PCAFC and 66 caregivers not approved. The mean age of responding caregivers was 45; over 90% of caregivers were female; and over 80% of caregivers were married in both groups. We find promising trends in well-being associated with PCAFC participation. First, the perception of financial strain declined among participants compared to non-participants. Second, while depressive symptoms did not improve for the PCAFC caregivers, depressive symptoms increased among non-participants. Third, perceived quality of the Veteran's VA healthcare was no different between participants and non-participants. However, the 158 returned surveys reflect only a 5% response rate; hence this evidence is preliminary. Conclusion: Despite cautioning that results be interpreted as preliminary, this study provides unique descriptive information about young caregivers of U.S. post-9/11 Veterans, and offers a first step in filling the evidence gap about how comprehensive caregiver support in the U.S. may affect caregiver well-being. These preliminary findings should be explored and validated in a larger sample.

Invisible partners in care: Snapshot of well-being among caregivers receiving comprehensive support from Veterans Affairs.

BACKGROUND AND AIMS: Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes. METHODS: We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health. RESULTS: We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain. CONCLUSIONS: Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.

Development and Initial Validation of the Caregiver Perceptions About Communication With Clinical Team Members (CAPACITY) Measure.

Despite the important role that family caregivers play managing the care of persons with complex health needs, little is known about how caregivers perceive themselves to be recognized and valued by health care professionals. Our objective was to develop and validate a novel measure, the CAregiver Perceptions About CommunIcation with Clinical Team members (CAPACITY) instrument. Questions focus on perceived quality of communication with the health care team and the extent to which caregivers believe that the health care team considers their capacity and preferences in decision making. A confirmatory factor analysis supported a two-factor solution addressing communication and capacity. Internal consistency reliability was .90 for the communication domain and .93 for the capacity domain. Correlations between these two subscales and individual difference measures provided evidence of convergent and discriminant validity. The CAPACITY instrument may be a useful performance measure that quantifies the extent to which caregivers' experience person- and family-centered health care.

Comprehensive Support for Family Caregivers: Impact on Veteran Health Care Utilization and Costs.

This study aimed to examine the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) on Veteran health care utilization and costs. A pre-post cohort design including a nonequivalent control group was used to understand how Veterans' use of Veteran Affairs health care and total health care costs changed in 6-month intervals up to 3 years after PCAFC enrollment. The control group was an inverse probability of treatment weighted sample of Veterans whose caregivers applied for, but were not accepted into, PCAFC. Veterans in PCAFC had similar acute care utilization postenrollment when compared with those in the control group, but significantly greater primary, specialty, and mental health outpatient care use at least 30, and up to 36, months postenrollment. Estimated total health care costs for PCAFC Veterans were $1,500 to $3,400 higher per 6-month interval than for control group Veterans. PCAFC may have increased Veterans' access to care.

Comprehensive Support for Family Caregivers of Post-9/11 Veterans Increases Veteran Utilization of Long-term Services and Supports: A Propensity Score Analysis.

Family caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions.

The Effect of Support and Training for Family Members on Access to Outpatient Services for Veterans with Posttraumatic Stress Disorder (PTSD).

The VA Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides landmark support for family caregivers of post-9/11 veterans. This study examines PCAFC support for veterans with and without PTSD and assesses whether program effect differs by PTSD status using a pre-post, non-equivalent, propensity score weighted comparison group design (n = 24,280). Veterans with and without PTSD in PCAFC accessed more mental health, primary, and specialty care services than weighted comparisons. PCAFC participation had stronger effects on access to primary care for veterans with PTSD than for veterans without PTSD. For veterans with PTSD, PCAFC support might enhance health service use.

U.S. Veteran Health Care Utilization Increases after Caregivers' Use of National Caregiver Telephone Support Line.

The U.S. Department of Veterans Affairs (VA) established the national Caregiver Support Line (CSL) in February 2011. The CSL is operated by licensed master's degree social workers who provide caregivers of veterans with information about caregiver benefits and services, counseling, and referrals to a caregiver support coordinator at the nearest VA medical center. The authors compared differences in veteran health care utilization patterns in the six months before and after a caregiver call to the CSL, hypothesizing that veterans with caregivers using the CSL had improved access to health care services and improved access increased utilization of health care. A pre- and posttest design was used. CSL calls that resulted in referrals to VA health care services or to local VA caregiver support coordinators were included in the sample. Data were extracted from the CSL database and matched to veteran care utilization data using veteran medical record data. Veteran inpatient stays for general medicine, hospice, respite, and long-term care significantly increased after the CSL call, but other inpatient stays (surgery, neurology) did not. Outpatient services for home health, respite, and mental health all significantly increased. Caregivers' use of the national CSL may help facilitate access for veterans to needed care services.

Engaging, Supporting, and Sustaining the Invisible Partners in Care: Young Caregivers of Veterans From the Post-9/11 Era.

Few studies have explored the health effects of caregiving for post-9/11 veterans who have been traumatically injured, have traumatic brain injuries, or have post-traumatic stress disorder. Post-9/11 veterans and their caregivers tend to be younger than veterans who served exclusively prior to 9/11. In response to the needs of caregivers, Public Law 111-163, the Caregivers and Veterans Omnibus Health Services Act of 2010, was passed, providing unprecedented support for informal caregivers of veterans. This support includes a monthly stipend and health insurance for caregivers who meet eligibility criteria. The uptake in these support services, and the resulting cost of services, has far surpassed expectations. As the Department of Veterans Affairs continues to provide caregiver support services, it is essential to determine the value and direct impact of the services provided to caregivers and veterans.