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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.
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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.
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Background Caregivers play a key role in supporting patient health; however, they have largely been excluded from participating in health care teams. This paper describes development and evaluation of web-based training for health care professionals about including family caregivers, implemented within the Department of Veterans Affairs Veterans Health Administration. Systematically training health care professionals constitutes a critical step toward shifting to a culture of purposefully and effectively utilizing and supporting family caregivers for better patient and health system outcomes. Methods Module development included Department of Veterans Affairs health care stakeholders and consisted of preliminary research and a design approach to set the framework, followed by iterative, collaborative team processes to write the content. Evaluation included pre- and postassessments of knowledge, attitudes, and beliefs. Results Overall, 154 health professionals completed pretest questions and 63 additionally completed the posttest. There was no observable change in knowledge. However, participants indicated a perceived desire and need for practicing inclusive care as well as an increase in self-efficacy (belief in their ability to accomplish a task successfully under certain conditions). Conclusion This project demonstrates the feasibility of developing web-based training to improve the beliefs and attitudes of health care professionals about inclusive care. Training constitutes one step toward shifting to a culture of inclusive care, and research should identify longer-term effects and other evidence-based interventions.
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Cuidadores , Veteranos , Humanos , Pessoal de Saúde/educação , Atenção à Saúde , InternetRESUMO
BACKGROUND: Veterans with posttraumatic epilepsy (PTE), particularly those with comorbidities associated with epilepsy or traumatic brain injury (TBI), have poorer health status and higher symptom burden than their peers without PTE. One area that has been particularly poorly studied is that of the role of caregivers in the health of veterans with PTE and the impact caring for someone with PTE has on the caregivers themselves. OBJECTIVE: In this study, we aim to address the following: describe and compare the health and quality of life of veterans and caregivers of veterans with and without PTE; evaluate the change in available supports and unmet needs for services among caregivers of post-9/11 veterans with PTE over a 2-year period and to compare support and unmet needs with those without PTE; and identify veteran and caregiver characteristics associated with the 2-year health trajectories of caregivers and veterans with PTE compared with veterans without PTE. METHODS: We conducted a prospective cohort study of the health and quality of life among 4 groups of veterans and their caregivers: veterans with PTE, nontraumatic epilepsy, TBI only, and neither epilepsy nor TBI. We will recruit participants from previous related studies and collect information about both the veterans and their primary informal caregivers on health, quality of life, unmet needs for care, PTE and TBI symptoms and treatment, relationship, and caregiver experience. Data sources will include existing data supplemented with primary data, such as survey data collected at baseline, intermittent brief reporting using ecological momentary assessment, and qualitative interviews. We will make both cross-sectional and longitudinal comparisons, using veteran-caregiver dyads, along with qualitative findings to better understand risk and promotive factors for quality of life and health among veterans and caregivers, as well as the bidirectional impact of caregivers and care recipients on one another. RESULTS: This study was approved by the institutional review boards of the University of Utah and Salt Lake City Veterans Affairs and is under review by the Human Research Protection Office of the United States Army Medical Research and Development Command. The Service Member, Veteran, and Caregiver Community Stakeholders Group has been formed and the study questionnaire will be finalized once the panel reviews it. We anticipate the start of recruitment and primary data collection by January 2022. CONCLUSIONS: New national initiatives aim to incorporate the caregiver into the veteran's treatment plan; however, we know little about the impact of caregiving-both positive and negative-on the caregivers themselves and on the veterans for whom they provide care. We will identify specific needs in this understudied population, which will inform clinicians, patients, families, and policy makers about the specific impact and needs to equip caregivers in caring for veterans at home. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/30975.
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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.
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Cuidadores/psicologia , Militares , Estresse Psicológico/etiologia , Ideação Suicida , Veteranos , Adulto , Cuidadores/estatística & dados numéricos , Estudos Transversais , Escolaridade , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Militares/estatística & dados numéricos , Fenótipo , Qualidade de Vida , Fatores de Risco , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia , Inquéritos e Questionários , Veteranos/estatística & dados numéricosRESUMO
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.
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Cuidadores , Veteranos , Comunicação , HumanosRESUMO
BACKGROUND: The present investigation tested the efficacy of the Tennant Biomodulator, a novel pain management intervention that uses biofeedback-modulated electrical stimulation, to reduce chronic pain and its psychosocial sequelae in a sample of current and former military service members. The Tennant Biomodulator used on its most basic setting was compared to two commonly used, non-pharmacological pain treatments-traditional Chinese acupuncture and transcutaneous electrical nerve stimulation (TENS)-in a comparative efficacy, randomized, open-label trial. METHODS: Participants included 100 active duty and retired service men and women with chronic pain undergoing treatment at the Brooke Army Medical Center in Texas, USA, randomly assigned to receive six, weekly sessions of either Tennant Biomodulator treatment, traditional Chinese acupuncture, or TENS, in addition to usual care. Recruitment was conducted between May 2010 to September 2013. Outcome measures were collected at intake, before and after each treatment session, and at a 1-month follow-up. Intent-to-treat analyses were used throughout, with mixed models used to investigate main effects of group, time, and group × time interactions with consideration given to quadratic effects. Outcomes measured included ratings of chronic pain, pain-related functional disability, and symptoms of post-traumatic stress disorder (PTSD) and depression. RESULTS: On average, regardless of their treatment group, participants exhibited a 16% reduction in pain measured by the Brooke Army Medical Center's Clinic Pain Log [F(1, 335) = 55.7, P < 0.0001] and an 11% reduction in pain-related disability measured by the Million Visual Analog Scale [MVAS: F(1, 84) = 28.3, P < 0.0001] from baseline to the end of treatment, but no one treatment performed better than the other, and the reductions in pain and pain-related disability were largely lost by 1-month follow-up. Symptoms of PTSD and depression did not change significantly as a function of time or group. CONCLUSIONS: Findings build on previous work suggesting that traditional Chinese acupuncture and TENS can reduce pain and its functional sequelae without risks associated with pharmacological pain management. The Tennant Biomodulator used on its most basic setting performs as well as these other interventions. Based on the present findings, large, randomized controlled trials on the Tennant Biomodulator are indicated. Future work should test this device using its full range of settings for pain-related psychological health. TRIAL REGISTRATION: Clincialtrials.gov (NCT01752010); registered December 14, 2012.
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Terapia por Acupuntura , Dor Crônica/reabilitação , Militares , Estimulação Elétrica Nervosa Transcutânea , Adulto , Dor Crônica/psicologia , Depressão/complicações , Feminino , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Manejo da Dor , Qualidade de Vida , Transtornos de Estresse Pós-Traumáticos/complicações , Texas , Resultado do Tratamento , Escala Visual AnalógicaRESUMO
OBJECTIVE: To assess whether a self-care toolkit (SCT) provided to breast cancer patients undergoing surgery could mitigate distress and lessen symptoms associated with surgery. DESIGN: One hundred women with breast cancer, planning to undergo initial surgery, were randomly assigned to either one of two groups: treatment as usual (TAU; n = 49) or TAU with the addition of an SCT (n = 51). The SCT contained an MP3 player with audio-files of guided mind-body techniques (breathing, progressive muscle relaxation, meditation, guided imagery, and self-hypnosis) and acupressure antinausea wristbands. Anxiety, pain, nausea, sleep, fatigue, global health, and quality of life (QOL) were assessed using validated outcome measures. Two inflammatory blood markers (erythrocyte sedimentation rate [ESR] and C-reactive protein [CRP]) were measured serially. Data were collected at baseline (T1), immediately before surgery (T2), within 10 h postoperatively (T3), and â¼2 weeks postsurgery (T4). SETTINGS: Numerous studies have shown that psychological distress associated with a cancer diagnosis can affect pain perception and QOL. RESULTS: Between T1 and T4, there were significant between-group differences in Patient-Reported Outcomes Measurement Information System (PROMIS)-57 scores of Pain Interference, Fatigue, and Satisfaction with Social Roles, favoring the SCT group compared with TAU (p = 0.005, p = 0.023, and p = 0.021, respectively). There was a significant mean change in Defense and Veterans Pain Rating Scale (DVPRS) scores from T2 to T3, with the SCT group having significantly smaller increases in postoperative pain (p = 0.008) and in postoperative ESR (p = 0.0197) compared with the TAU group. Clinically significant reductions in anxiety occurred in the SCT group during the main intervention period. CONCLUSION: These results suggest that using the SCT in the perioperative period decreased pain perceptions, fatigue, and inflammatory cytokine secretion.
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Ansiedade/terapia , Neoplasias da Mama/cirurgia , Terapias Mente-Corpo , Manejo da Dor/métodos , Autocuidado/métodos , Adulto , Feminino , Hospitais Militares , Humanos , Pessoa de Meia-Idade , Militares , Resultado do TratamentoRESUMO
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.