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BACKGROUND: There has been increased attention to the need for, and the positive impact of, engaged or participatory science in recent years. Implementation scientists have an opportunity to leverage and contribute to engagement science (ES) through the systematic integration of engagement into implementation science (IS). The purpose of this study was to gather information from researchers and others to develop a prioritized list of research needs and opportunities at the intersection of IS and ES. METHODS: We conducted three Zoom-based focus groups with 20 researchers to generate a list of unmet needs, barriers, and to describe normative themes about use of ES and IS. Then a panel of nine experts in IS and/or engagement ranked the needs and barriers using a survey and met via a Zoom meeting to discuss and generate research opportunities and questions, with reference to the focus group outputs. RESULTS: Respondents and experts concurred on the importance of engagement in IS. Focus group participants reported 28 needs and barriers under the themes of 1) need for best practice guidance related to engagement processes and outcomes and 2) structural barriers to integrating ES in IS. The expert panel prioritized six structural barriers and four barriers related to generating best practice guidance, with corresponding recommendations on research opportunities. Example research opportunities related to engagement processes included: define "successful" engagement in IS contexts; adapt engagement tools and best practices from other disciplines into IS. Example research opportunities related to outcomes included: assess the impact of engagement on IS outcomes; examine engagement practices that lead to optimal engaged research. Example research opportunities related to structural barriers included: leverage research evidence to create structural changes needed to expand support for engaged IS; examine factors that influence institutional buy-in of engagement in IS. CONCLUSIONS: Research needs exist that relate to engagement processes, outcomes, and structural barriers, even for scientists who value engaged research. Expert panelists recommended sequential and reinforcing research opportunities that implementation and engagement scientists can tackle together to advance both fields and health equity. Future work should assess insights from broader invested parties, particularly patients and community members.
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Antiretroviral therapy has dramatically increased the lifespan of people living with HIV (PLWH), but advance care planning (ACP) and hospice services are underutilized in this population. The purpose of this study was to understand barriers and facilitators to ACP among this group. PLWH (n = 25) were recruited from an HIV Clinic at a Veterans Affairs (VA) Medical Center in Atlanta, GA to represent a range of sociodemographic characteristics and experiences. Semi-structured interviews were analyzed using thematic analysis. More than half of participants (64%) indicated not engaging in ACP. We identified four key barriers to ACP: (1) a self-image among PLWH as "survivors" (and a reluctance to think about ACP); (2) a history of mistrust and mistreatment; (3) weak social ties and a desire to avoid disclosure of HIV status; and (4) a value for self-reliance. Findings have important implications for interventions to overcome these barriers.
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Planejamento Antecipado de Cuidados , Infecções por HIV , Humanos , Masculino , Feminino , Infecções por HIV/psicologia , Infecções por HIV/terapia , Pessoa de Meia-Idade , Idoso , Entrevistas como Assunto , Pesquisa Qualitativa , Estados UnidosRESUMO
Comorbid dementia complicates cancer therapy decision-making in older adults. We aimed to synthesize the recent literature (<5 years) on the challenges associated with cancer therapy decision-making among older people living with dementia (PLWD) and their caregivers. Of the 20,763 references, 8767 had their title and abstract screened, and eight met the inclusion criteria. Six studies were qualitative, one study employed mixed methods, and one study was quasi-experimental. Most studies were conducted in the UK (89%) and reported homogeneity in race and geography. Breast (56%) and prostate (45%) were the most frequent reported cancers. Five studies (56%) reported multiple types of dementia, with two (22%) indicating stages. The studies indicated that communication between patients, caregivers, and clinical teams might alleviate stress caused by worsening health prospects and potential ethical concerns. Information from this review can lead to better-informed, patient-centered treatment decision processes among older PLWD and cancer, their caregivers, and clinicians.
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Cuidadores , Tomada de Decisões , Demência , Neoplasias , Humanos , Demência/terapia , Demência/epidemiologia , Neoplasias/terapia , Idoso , Comorbidade , Masculino , FemininoRESUMO
OBJECTIVE: To determine in what ways, if any, do patients, caregivers, and nurses make videos relevant during in-person education. METHODS: We applied conversation analysis to analyze interaction in 12 nurse-led education visits (1011 min of audio) in which speakers referred to a supplemental education video. RESULTS: Patients initiated talk about the video in about half of the clinic visits analyzed, while nurses initiated talk about the video across all clinic visits analyzed. Interactions showed that patients demonstrated knowledge of video content and clarified information concerning their treatment plans by asking questions of nurses. Nurses referenced the video prior to repeating information that they recognized patients had viewed. In all instances analyzed, nurses made references to the videos in ways that re-oriented conversations back toward the content of the informal scripts that they used to deliver patient education. CONCLUSION: Patients referenced the video in ways that demonstrated that they had viewed it and had gained knowledge concerning treatment plans, and to ask specific questions about these. Nurses referred to the videos by acknowledging patients' prior knowledge of upcoming information. PRACTICE IMPLICATIONS: Understanding how pre-delivered supplemental videos impact patient involvement in in-person education contributes understanding to how video-based instruction supports patient-centered care.
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Comunicação , Educação Médica , Cuidadores , Humanos , Participação do Paciente , Assistência Centrada no Paciente , Gravação em VídeoRESUMO
BACKGROUND: African-Americans rank last among all racial groups for age-adjusted colorectal cancer mortality, 5-year survival rates, and rates of screening. Access to care does not fully explain racial disparities in rates of CRC and mortality. Sociocultural attitudes can predict probabilities of CRC screening. AIMS: The objective of this study is to identify factors that influence colorectal cancer screening behavior in African-American men. METHODS: Semi-structured interviews were conducted among 32 African-American men. Transcripts were analyzed using MAXQDA software. We then conducted a cross-sectional survey of 103 African-American men, using previously validated scales related to colorectal cancer screening and determinants. Data were analyzed with SPSS. RESULTS: In the interview phase, beliefs relating to masculinity emerged as factors that hindered participation in screening. Overwhelmingly, participants felt that having an in-depth discussion about colorectal cancer with their provider was critical to enabling them to get screened. The survey phase demonstrated that most participants had poor colorectal cancer knowledge, as only 16% passed the knowledge test. Forty-eight percentage agreed that their provider did not recommend getting screened. Those who had been previously screened for colorectal cancer scored higher in total and on all subsets of the masculinity index than those who had not (p < .01). The most persuasive messages were those related to themes of masculinity. CONCLUSION: This study provides a novel sociocultural perspective about colorectal cancer screening in African-American men. Our findings highlight the importance of family, masculinity, and community when promoting colorectal cancer screening to this population.
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Negro ou Afro-Americano/psicologia , Neoplasias Colorretais/etnologia , Neoplasias Colorretais/psicologia , Acessibilidade aos Serviços de Saúde , Masculinidade , Programas de Rastreamento/estatística & dados numéricos , Idoso , Atitude Frente a Saúde , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/mortalidade , Estudos Transversais , Detecção Precoce de Câncer/estatística & dados numéricos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricosRESUMO
Multiple myeloma (MM) is an incurable cancer characterized by abnormal plasma cells in the bone marrow, resulting in increased risk of infection. Autologous stem cell transplant (ASCT) is the most effective treatment for MM, but successful transplant requires the patient and caregiver to learn and independently implement medical tasks. The Ready for Transplant (R4T) ethnographic-based formative evaluation includes evaluation of ongoing patient education and the addition of novel supplemental educational videos that patients can review before in-person transplant education. To evaluate R4T, a formative evaluation informed by utilization-orientated evaluation theories, including over 150 hours of ethnographic observation of nurse/patient education (N = 70), plus retrospective and prospective patient (N = 35) and clinician interviews (N = 7) was conducted over 18 months. Through thematic analysis, barriers and facilitators of the patient's ability to process education surrounding ASCT were identified. Barriers included anxiety surrounding what to expect in ASCT, anxiety surrounding what to expect at the education visit, overwhelming volume of information, lack of medical expertise, and disengaged patients, while facilitators included large social networks willing to help and clinician adjusting script to meet unique needs of the patient. This manuscript represents an iterative method for improving on education that people with MM receive surrounding ASCT. Ultimately, the supplemental video-based education was created to address modifiable social and psychological factors by providing generalized information that could then be tailored during in-person meetings to meet each patients' individual needs.
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Educação Médica , Transplante de Células-Tronco Hematopoéticas , Mieloma Múltiplo , Transplante de Células-Tronco Hematopoéticas/métodos , Humanos , Mieloma Múltiplo/etiologia , Mieloma Múltiplo/terapia , Estudos Prospectivos , Estudos RetrospectivosRESUMO
The conversation strategies patients and clinicians use are important in determining patient satisfaction and adherence, and health outcomes following patient education-yet most studies are rife with surveys and interviews which often fail to account for real-time interaction. Conversation analysis (CA) is a powerful but underused sociological and linguistic technique aimed at understanding how interaction is accomplished in real-time. In the current manuscript, we provide a primer to CA in an effort to make the technique accessible to patient education researchers including; The history of CA, identifying and collecting data, transcription conventions, data analysis, and presenting the findings. Ultimately, this article provides an easily digestible demonstration of this analytic technique.
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In the current study, we sought to examine whether patients incorporate the identity of a patient receiving autologous stem cell transplant (ASCT) for multiple myeloma (MM) into their daily lives. Multiple myeloma patients receive education before initiating the ASCT treatment process. In this ethnographic study using interpretative phenomenological analysis, we observed pretransplant education visits with 30 MM patients, followed by semistructured interviews in their hospital rooms during transplant. The experience of receiving ASCT for MM required effort by patients to not only maintain their past identity but also establish a new patient identity. Reconciling these 2 identities required deliberate and emotionally draining effort from the patient. Results were organized into 2 overarching themes of social relationships and aesthetics with subthemes for each. Understanding methods MM patients who are receiving ASCT use to negotiate normalcy during treatment may be helpful for developing interventions for alleviating distress during this difficult time.
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Despite the well-known health benefits of physical activity, older adults are more sedentary than any other age group. This issue is particularly true for assisted living (AL) residents, which also represents an important and often overlooked aspect of palliative care. Here, we analyze ethnographic and interview data from a longitudinal study aimed at identifying best practices for palliative care in one African American AL community. The aim was to identify the factors that facilitate and constrain resident participation in instructor-led group exercise. Thematic analysis identified several main themes including the quality and location of the exercise program, AL staffing limitations, residents' health and function, values about exercise, and residents' interest in recreation and social engagement. We identified facilitators and barriers that shaped residents' opportunity, desire, and commitment related to attending group exercise. Findings have implications for interventions aimed at increasing resident participation in group exercise, leading to multiple health benefits.
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Negro ou Afro-Americano , Idoso Fragilizado , Idoso , Exercício Físico , Humanos , Estudos Longitudinais , Participação SocialRESUMO
OBJECTIVE: To demonstrate how formative research methods can be used to plan for implementation of evidence-based psychosocial screening in pediatric oncology. METHODS: Multidisciplinary pediatric oncology professionals participated in focus groups to adapt the distress thermometer for electronic administration and develop health systems processes to promote psychosocial screening in the pediatric oncology outpatient clinic setting. Seven 1-hour focus groups were conducted using a structured guide based on the reach, efficacy, adoption, implementation, and maintenance framework and transcribed verbatim. Two independent raters coded transcripts using a quasi-deductive approach with high inter-coder reliability (Cohen kappa >0.80). RESULTS: Participants' (N = 44) responses were used to identify overarching topics related to the adoption, implementation, and maintenance of electronic screening (e-screening) including: barriers to meeting families' psychosocial needs, identification of champions, suggestions to adapt the proposed e-screening program, perceived barriers to e-screening, and potential impact of carrying out e-screening. Following review of qualitative data, we employed specific implementation strategies to promote adoption, implementation, and maintenance of an e-screening program. CONCLUSIONS: Perceived barriers to the implementation of psychosocial screening remain substantial, yet enthusiasm for using electronic health records (EHRs) technology to help meet patient needs through regular assessment was evident among pediatric oncology professionals. Electronic administration of screening and integration of results into the EHR in real time were identified as critical needs to overcome barriers to e-screening. Formative research including qualitative data from stakeholders can be used to tailor implementation strategies to successfully support the adoption, implementation, and maintenance of e-screening programs in pediatric oncology.
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Registros Eletrônicos de Saúde , Prática Clínica Baseada em Evidências/organização & administração , Programas de Rastreamento/métodos , Neoplasias/psicologia , Adolescente , Adulto , Criança , Feminino , Grupos Focais , Humanos , Masculino , Oncologia , Pessoa de Meia-Idade , Neoplasias/terapia , PediatriaRESUMO
Decreased cognitive function is related to undesirable psychological outcomes such as greater emotional distress and lower quality of life, particularly among women living with HIV who experience cognitive impairment (WLWH-CI). Yet, few studies have examined the psychosocial resources that may attenuate these negative emotional outcomes. The current study sought to identify the interrelated contributions of social relationships and psychological resources in 399 WLWH-CI by applying Socio-Emotional Adaptation (SEA) theory using data from the Women's Interagency HIV Study (WIHS). Cognitive impairment (CI) was defined as impairment on two or more cognitive domains. Logistic regression models were used to estimate the odds of experiencing specific emotions due to a combination of four psychosocial resources. Emotions (i.e., depression, apathy, fear, anger, and acceptance) were related to a combination of binary (positive/negative) psychosocial resources including relationship with an informal support partner, relationship with a formal caregiver, coping, and perceived control. Understanding the conditions that may influence emotions in WLWH-CI is important for identifying and appropriately addressing the needs of this population. As CI increases, these individuals experience increasing challenges with articulating their care needs and having their needs met. As such, it becomes increasingly important to identify possible triggers for emotional responses to best address these underlying challenges.
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Disfunção Cognitiva/complicações , Disfunção Cognitiva/psicologia , Ajustamento Emocional , Emoções , Infecções por HIV/psicologia , Apoio Social , Estresse Psicológico/etiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: To evaluate real, as compared with sham, acupuncture in improving persistent sleep disturbance in veterans with mild traumatic brain injury (mTBI) and posttraumatic stress disorder (PTSD). METHODS: This sham-controlled randomized clinical trial at a US Department of Veterans Affairs Medical Center (2010-2015) included 60 veterans aged 24-55 years (mean of 40 years) with history of mTBI of at least 3 months and refractory sleep disturbance. Most of these participants (66.7%) carried a concurrent DSM-IV clinical diagnosis of PTSD. For the present study, they were randomized into 2 groups and stratified by PTSD status using the PTSD Checklist-Military Version. Each participant received up to 10 treatment sessions. The primary outcome measure was change in baseline-adjusted global Pittsburgh Sleep Quality Index (PSQI) score following intervention. Secondary outcomes were wrist-actigraphy-assessed objective sleep measurements. Comorbid PTSD was analyzed as a covariate. RESULTS: Mean (SD) preintervention global PSQI score was 14.3 (3.2). Those receiving real acupuncture had a global PSQI score improvement of 4.4 points (relative to 2.4 points in sham, P = .04) and actigraphically measured sleep efficiency (absolute) improvement of 2.7% (relative to a decrement of 5.3% in sham, P = .0016). Effective blinding for active treatment was maintained in the study. PTSD participants presented with more clinically significant sleep difficulties at baseline; acupuncture was effective for both those with and without PTSD. CONCLUSIONS: Real acupuncture, compared with a sham needling procedure, resulted in a significant improvement in sleep measures for veterans with mTBI and disturbed sleep, even in the presence of PTSD. These results indicate that an alternative-medicine treatment modality like acupuncture can provide clinically significant relief for a particularly recalcitrant problem affecting large segments of the veteran population. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01162317.
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Terapia por Acupuntura/métodos , Avaliação de Resultados em Cuidados de Saúde/métodos , Transtornos do Sono-Vigília/terapia , Adulto , Concussão Encefálica/complicações , Humanos , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Método Simples-Cego , Transtornos do Sono-Vigília/complicações , Transtornos de Estresse Pós-Traumáticos/complicações , Estados Unidos , United States Department of Veterans Affairs , Veteranos/psicologia , Adulto JovemRESUMO
In the original publication of the article, the given and family name of the fourth author was not correct. The name has been corrected with this erratum.
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Complementary and alternative medicine (CAM), often pursued independent of prescribing clinicians, may interact with traditional treatments, yet CAM use has not been well characterized among people living with HIV (PLWH) in the combined antiretroviral therapy (ART) era. We analyzed data from the Veterans Aging Cohort Study (October 2012-April 2015) to characterize CAM use in PLWH on ART. CAM users were more likely to have lived longer with HIV, report more bothersome symptoms, be prescribed more benzodiazepines and opioids, and consume less nicotine and alcohol. Given its high prevalence, clinicians should routinely assess for CAM use and its impact among PLWH.
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Fármacos Anti-HIV/uso terapêutico , Antirretrovirais/uso terapêutico , Terapias Complementares/estatística & dados numéricos , Infecções por HIV/tratamento farmacológico , Veteranos/estatística & dados numéricos , Adulto , Idoso , Estudos de Coortes , Terapia Combinada , Feminino , Infecções por HIV/diagnóstico , Infecções por HIV/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Fatores Socioeconômicos , Estados Unidos/epidemiologiaRESUMO
Senior Mentor Programs (SMPs) pair community-dwelling older adults with health professions students to facilitate knowledge, improve communication skills, and promote positive attitudes regarding the aging process. Although evidence exists that SMPs meet these goals, the programs' psychosocial impact on the senior mentors remains unexplored. The current study assessed 101 mostly female (64.4%) senior mentors (M age = 77.6) pre- and postprogram. Although mentors had no change in the amount of perceived ageism experienced or expectation of experiencing ageism, their concern/anxiety over ageism significantly decreased from pre- (M = 21.58) to posttest (M = 20.19). Qualitative thematic analysis indicated meaningfulness of program and scheduling difficulties as prevalent themes. Mentors who reported less concern about ageism following the program were more likely to have experienced ageism in the year prior to the program and to attend religious services more often, another potential intergenerational contact. These results highlight possible benefits of mentor service for older adults.
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Etarismo , Envelhecimento/psicologia , Currículo , Geriatria/educação , Relação entre Gerações , Resiliência Psicológica , Adulto , Idoso , Etarismo/prevenção & controle , Etarismo/psicologia , Educação , Feminino , Humanos , Masculino , Mentores/psicologia , Relações Profissional-Paciente , Avaliação de Programas e Projetos de Saúde , Estudantes de Ciências da Saúde/psicologiaRESUMO
Purpose of the Study: The emotional reactions to the progression of Mild Cognitive Impairment and Alzheimer's disease (MCI/AD) oftentimes present as cognitive or behavioral changes, leading to misguided interventions by Formal Support (paid health care providers). Despite a rich body of literature identifying cognitive and behavioral staging of MCI/AD, the emotional changes that accompany these diagnoses have been largely ignored. The objective of this study was to develop a model of the emotional aspects of MCI/AD. Design and Methods: One hour, semistructured interviews, with 14 patient-Informal Support Partner dyads (N = 28) interviewed concurrently; patients were in various stages of MCI/AD. An interdisciplinary team employed a grounded theory coding process to detect emotional characteristics of the participants with MCI/AD. Results: Emotional reactions were categorized into depression/sadness, apathy, concern/fear, anger/frustration, and acceptance. The emotions did not present linearly along the course of the disease and were instead entwined within a set of complex (positive/negative) interactions including: relationship with the Informal Support Partner (i.e., teamwork vs infantilization), relationship with the Formal Support (i.e., patient vs disengaged), coping (i.e., adaptive vs nonadaptive), and perceived control (i.e., internal vs external locus-of-control). For example, a person with poor formal and informal support and external locus-of-control may become depressed, a condition that is known to negatively affect cognitive status. Implications: Understanding the emotional reactions of individuals diagnosed with MCI/AD will provide clinicians with information needed to develop treatments suited to current needs of the patient and provide Informal Support Partners insight into cognitive and physical changes associated with MCI/AD.
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Adaptação Psicológica , Doença de Alzheimer/psicologia , Emoções , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Disfunção Cognitiva/psicologia , Progressão da Doença , Feminino , Humanos , Relações Interpessoais , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Teoria Psicológica , Apoio SocialRESUMO
OBJECTIVE: To compare patients' acupuncture use with physician's attitudes toward and history of referral for acupuncture. METHODS: A questionnaire was administered to patients of the Atlanta Veterans Affairs Medical Center and the physicians whom they identified as most influencing their healthcare decisions. A total of 114 patients were matched with 33 physicians. RESULTS: Physicians' history of referral was not significantly related to patients' acupuncture use. Physicians' belief that acupuncture would increase patient satisfaction, however, was associated with higher rates of patient acupuncture use (p=0.01). Qualitative analysis of an open-ended question that probed further into physicians' attitudes regarding acupuncture revealed three key themes: lack of knowledge about the treatment; misperceptions regarding availability of acupuncture at VA; and lack of VA providers to meet demand. CONCLUSION: These results indicate that physicians' referral patterns are not associated with patients' acupuncture use. However, some evidence shows a link between patients' acupuncture use and physicians' beliefs that the treatment will increase patient satisfaction, showing that physician attitudes may have some influence on patients' acupuncture use. PRACTICE IMPLICATIONS: In order to cultivate shared-decision making between patients and their physicians it will be important to address gaps in provider knowledge about acupuncture and its availability.
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Acupuntura , Comunicação , Tomada de Decisões , Relações Médico-Paciente , Padrões de Prática Médica/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Veteranos/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Georgia , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente , Papel do Médico , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To explore whether factors related to attitudes toward acupuncture use in a population of older veterans is similar to previously identified motivators for nonveterans. METHODS: A sample of veterans was asked to complete a questionnaire, which included questions on sociodemographic traits, history of acupuncture, chronic diseases, and the Health Belief Model (HBM). Data reduction was performed by using principal components analysis to identify major factors among the HBM responses. Linear regression was performed to evaluate variables that may contribute to attitudes toward acupuncture. RESULTS: There were 402 completed questionnaires. Principal components analysis yielded three significant factors. Linear regression resulted in a model that explained 35% of the variance for positive attitudes toward acupuncture: Age, race, religion, access to acupuncture, self-efficacy for nonpharmacologic treatments, and the presence of one or more physical and mental chronic health condition were significantly related to positive attitudes toward acupuncture. CONCLUSIONS: Factors related to attitudes toward acupuncture were very similar to factors identified in other literature for nonveterans, with the exception of income and education. The findings suggest that availability of treatment influences attitudes toward acupuncture.