Family Caregiver and Provider Perspectives on Inclusive Care: Aligning Needs and Expectations.

BACKGROUND: Home-based and community-based health care for individuals with complex medical conditions is often provided by family caregivers. Yet caregivers often are not meaningfully included in interactions with clinical health care teams. Inclusive care means inviting the caregiver to participate in shared decision-making and treatment planning. For aging or medically vulnerable adults, caregiver inclusion is an important facet of patient-centered care. METHODS: We apply a mixed-methods approach using a survey (n=50) and semistructured interview data (n=13) from a national sample of caregivers of veterans and semistructured interview data from (n=24) providers from 3 Veterans Affairs regional networks. We elicited data from caregivers about their experiences with inclusive care and how providers communicate with them and assess their capacity. We juxtaposed these data with provider perspectives to see where there was alignment. FINDINGS: We determined that caregivers play important roles in trust-building, communications management, implementation of care plans at home or in the community, and improving the care of care recipients-while maintaining a balance between competing tensions. CONCLUSIONS: Our findings suggest that expanding inclusive care could improve care quality and health outcomes of individuals with complex health care needs. Further, our findings bolster recent policy efforts at the federal and state levels to increase recognition of caregivers as key members of the health care team.

Traumatic Brain Injury Severity, Comorbidity, Social Support, Family Functioning, and Community Reintegration Among Veterans of the Afghanistan and Iraq Wars.

OBJECTIVE: To examine the association between traumatic brain injury (TBI) severity; social, family, and community reintegration outcomes; and return to work status among post-9/11 veterans in Department of Veterans Affairs (VA) care. DESIGN: Retrospective observational cohort study. SETTING: Mail/online survey fielded to a national sample of veterans. PARTICIPANTS: Sample of post-9/11 veterans with at least 3 years of VA care stratified according to TBI severity and comorbidities who completed and returned surveys (N=2023). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Deployment Risk and Resilience Inventory-2 family functioning and social support subscales; Military to Civilian Questionnaire; and employment status. RESULTS: Bivariate analyses revealed that veterans with every classification of TBI severity reported significantly more difficulty on social, family, and community reintegration outcomes than those with no TBI. In the fully adjusted model, veterans with unclassified and moderate/severe TBI reported significantly more difficulty with community reintegration and were less likely to be employed relative to those with no TBI; those with unclassified TBI also reported significantly more difficulty with family functioning. Veterans with mild TBI also reported significantly more difficulty with community reintegration. CONCLUSIONS: This study provides insight into long-term outcomes associated with TBI in post-9/11 veterans and suggests that exposure to TBI has a negative effect on social and family functioning, community reintegration, and return to work even after controlling for comorbidity, deployment experiences, and sociodemographic characteristics. Additional research is required to explicate what appears to be complex interactions among TBI severity, psychosocial well-being, combat exposures, and socioeconomic resources in this population.

A Scoping Review to Contribute to Knowledge About Culturally Adapting Interventions for Latino Family Caregivers of Persons Living With Dementia.

INTRODUCTION: Few interventions have focused on Latino family caregivers to persons with dementia, addressing their unique needs. This review aimed to identify best practices in cultural adaptation to make recommendations for adapting interventions for Latino family caregivers of persons living with dementia. METHOD: This scoping review was conducted following the Joanna Briggs Institute Scoping Review guidelines, with findings extracted and summarized from 17 studies addressing cultural adaptation. RESULTS: Frameworks guiding the adaptations were comprehensive, addressing cultural values and traditions and the social context faced by Latino family caregivers. Features of the adaptations included diverse teams of researchers and community members, including Latino family caregivers, to inform the integration of cultural values into the content, mode, and place of intervention delivery. DISCUSSION: Culturally adapting evidence-based interventions will increase the number of available interventions for Latino family caregivers to persons living with dementia, thus reducing inequities in caregiver support.

Caregiver-specific quality measures for home- and community-based services: Environmental scan and stakeholder priorities.

Although family caregivers are increasingly recognized for their essential role in helping vulnerable adults live in the community for as long as possible, their priorities and perspectives have not been well-integrated into quality assessments of home- and community-based services (HCBS). Our overall goal was to identify measurement gaps to guide monitoring and improve HCBS. Caregiver-specific measurement priorities were identified during a multi-level stakeholder engagement process that included 34 Veterans, 24 caregivers, and 39 facility leaders, clinicians, and staff across four VA healthcare systems. We mapped items from national quality measure sets for HCBS identified during an environmental scan onto the stakeholder-identified measurement priorities. Only 5 of 11 non-VA measure sets and three of four VA measure sets explicitly included caregiver-specific items that were aligned with or relevant to stakeholders' measurement priorities. Six of 14 stakeholder-identified priorities were not reflected in any measure sets, such as those that explicitly assess caregiver-reported experience with services that directly or indirectly support their role as caregivers within HCBS. Although family caregivers fulfill a critical role in helping adults with complex medical needs live independently for as long as possible, their priorities and perspectives have not been well-integrated into quality assessments of HCBS. Measures that acknowledge caregivers' roles and incorporate their priorities can help healthcare systems to better monitor and improve HCBS quality, thereby enabling Veterans to remain in the community as long as possible.

Phenotypes of caregiver distress in military and veteran caregivers: Suicidal ideation associations.

The United States (US) has been at war for almost two decades, resulting in a high prevalence of injuries and illnesses in service members and veterans. Family members and friends are frequently becoming the caregivers of service members and veterans who require long-term assistance for their medical conditions. There is a significant body of research regarding the physical, emotional, and social toll of caregiving and the associated adverse health-related outcomes. Despite strong evidence of the emotional toll and associated mental health conditions in family caregivers, the literature regarding suicidal ideation among family caregivers is scarce and even less is known about suicidal ideation in military caregivers. This study sought to identify clusters of characteristics and health factors (phenotypes) associated with suicidal ideation in a sample of military caregivers using a cross-sectional, web-based survey. Measures included the context of caregiving, physical, emotional, social health, and health history of caregivers. Military caregivers in this sample (n = 458) were mostly young adults (M = 39.8, SD = 9.9), caring for complex medical conditions for five or more years. They reported high symptomology on measures of pain, depression, and stress. Many (39%) experienced interruptions in their education and 23.6% reported suicidal ideation since becoming a caregiver. General latent variable analyses revealed three distinct classes or phenotypes (low, medium, high) associated with suicidality. Individuals in the high suicidality phenotype were significantly more likely to have interrupted their education due to caregiving and live closer (within 25 miles) to a VA medical center. This study indicates that interruption of life events, loss of self, and caring for a veteran with mental health conditions/suicidality are significant predictors of suicidality in military caregivers. Future research should examine caregiver life experiences in more detail to determine the feasibility of developing effective interventions to mitigate suicide-related risk for military caregivers.

Inclusion of Caregivers in Veterans' Care: A Critical Literature Review.

More direct inclusion of informal caregivers (i.e., family, friends) in patients' care will make care more patient- and family-centered and has the potential to improve overall quality of care for patients. We need to understand what potentially comprises "inclusive care" so that we can define what "inclusive care" is and develop targets for care quality metrics. We conducted a critical literature review to identify key components of "caregiver inclusion." Focusing on extant literature from 2005 to 2017, 35 papers met inclusion criteria. Directed content analysis with constant comparison was used to identify major themes related to a concept of "inclusive care." Our analysis indicates that "inclusive care" entails five components: clear definition of caregiver role, system level policies for inclusion, explicit involvement of caregiver, provider assessment of caregiver capability, and mutuality in caregiver-provider communication. We discuss the evidence behind these five components using the Donabedian health care quality conceptual model.

Cardiac arrests of hospital staff and visitors: experience from the national registry of cardiopulmonary resuscitation.

AIM OF THE STUDY: Approximately 750,000 in-hospital cardiac arrests occur annually in the United States. Many will occur to visitors or staff members within the hospital's public areas. We sought to provide a descriptive analysis of visitor cardiac arrests in hospitals and to compare survival outcomes to matching inpatient arrests. METHODS: We queried the National Registry of Cardiopulmonary Resuscitation (NRCPR)) for all adult cardiac arrests from January 2000 to May 2006 that occurred to visitors or employees anywhere within the hospital. Visitors were matched to inpatient cardiac arrests from within the same NRCPR database for age, gender, race, prior residence and functional status, and presenting rhythms. The compared outcomes were return of spontaneous circulation (ROSC), survival to 24h (S24), and survival to discharge (SHD). RESULTS: 147 visitors suffered a cardiac arrest during the study period. S24 (48% vs. 37%, p=0.011) and SHD (42% vs. 24%, p<0.0001) were both higher in the visitor cohort. However, ROSC did not significantly differ between visitors and controls (57% vs. 51%). Visitor cardiac arrests occurred in a wide variety of locations. CONCLUSION: Cardiac arrest among hospital visitors is a relatively common event. The survival outcomes of hospital visitors compared unfavorably to that of recently published experience with out-of-hospital cardiac arrest victims.

A Family's Affair: Caring for Veterans with Penetrating Traumatic Brain Injury.

Approximately 1.1 million family members are primary caregivers to post 9/11 veterans. These military caregivers assume a role that requires a long-term commitment that may affect their own health status; however, the impact on health among military caregivers is underestimated and underrepresented. As part of a larger retrospective cohort study that aimed to assess the health-related outcomes of post 9/11 veterans with penetrating traumatic brain injury (pTBI), we examined the health impact of caregiving on caregivers. Caregivers (n = 66) of veterans with pTBI completed a survey that captured the veterans' and their own health-related outcomes. Surveys included veteran and caregiver sociodemographics, caregiver role, tasks, burden, and caregiver-reported measures of veterans' health and quality of life. The participants were spouses (58%) and parents (32%) providing full-time assistance for more than 5 yr (74%). In their caregiver role, they provided assistance with activities of daily living and emotional/social support. Forty-eight percent of these caregivers met the definition of experiencing clinically significant burden. Veterans with pTBI had other comorbidities (e.g., depression, cognitive dysfunction, and anger), which were associated with caregiver burden. The findings further confirm the impact of caregiving on health status of caregivers, specifically when assisting veterans with pTBI.

Integrative Medicine Experience in the U.S. Department of Defense.

Background: Over the past 15 years, the use of complementary and alternative medicine (CAM) services, currently described as integrative medicine (IM) when used together with conventional medicine , has continued to rise in the United States. The trends seen in the civilian population are mirrored within the U.S. Military. Objective: A survey was conducted to show the change in the prevalence of integrative medicine services, budgeting of those services, and ongoing research in IM within Department of Defense (DoD) medical treatment facilities (MTFs) from 2005 through 2009. Materials and Methods:Design: The Deputy Chief of Clinical Services or Service equivalent was contacted at fourteen selected DoD MTFs. Comprehensive structured telephone interviews were conducted using a formatted 20-item questionnaire. The questionnaire design was of a mixed model with open and closed formats as well as dichotomous yes/no questions. The questions covered the subject areas of available services, budgeting, and research. The initial survey was conducted in 2005 with a follow-up survey conducted in 2009. Setting: This survey involved DoD MTFs. Main Outcome Measures: The surveys were conducted to determine the prevalence of IM services within selected DoD facilities. Results: There was a steady increase in the number of IM services available in the DoD MTFs from 2005 through 2009. Acupuncture, biofeedback, nutritional counseling, and spiritual healing were the most prevalent IM services in 2009. Funding sources changed from central funding (Offices of the Surgeon General) to Congressional and local funding. Conclusions: It is essential that the DoD medical community provides safe and effective treatments by providing oversight of IM services, collaboration for research, credentialing of practitioners, and establishing educational programs.