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PURPOSE: Patient-reported outcome measures (PROMs), which are generic or condition-specific, are used for a number of reasons, including clinical care, clinical trials, and in national-level efforts to monitor the quality of health care delivery. Creating PROMs that meet different purposes without overburdening patients, healthcare systems, providers, and data systems is paramount. The objective of this study was to test a generalizable method to incorporate condition-specific issues into generic PROM measures as a first step to producing PROMs that efficiently provide a standardized score. This paper outlines the method and preliminary findings focused on a PROM for osteoarthritis of the knee (OA-K). METHODS: We used a mixed-methods approach and PROMIS® measures to test development of a combined generic and OA-K-specific PROM. Qualitative methods included patient focus groups and provider interviews to identify impacts of OA-K important to patients. We then conducted a thematic analysis and an item gap analysis: identified areas covered by existing generic PROMIS measures, identified "gap" areas not covered, compared gap areas to legacy instruments to verify relevance, and developed new items to address gaps. We then performed cognitive testing on new items and drafted an OA-K-specific instrument based on findings. RESULTS: We identified 52 existing PROMIS items and developed 24 new items across 14 domains. CONCLUSIONS: We developed a process for creating condition-specific instruments that bridge gaps in existing generic measures. If successful, the methodology will create instruments that efficiently gather the patient's perspective while allowing health systems, researchers, and other interested parties to monitor and compare outcomes over time, conditions, and populations.
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Atenção à Saúde/normas , Assistência ao Paciente/normas , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia , Idoso , HumanosRESUMO
Studies examining associations between weight status and neighborhood built environment (BE) have shown inconsistent results and have generally focused on urban settings. However, many Americans do not live in metropolitan areas and BE impacts may be different outside of metropolitan areas. We sought to examine whether the relationship between body mass index (BMI) and neighborhood BE exists and varies by geographic region across small towns in the United States. We conducted telephone surveys with 2156 adults and geographic information systems data in nine towns located within three geographic regions (Northeast, Texas, Washington) in 2011 and 2012. Multiple regression models examined the relationship between individual BMI and BE measures. Most physical activity variables were significantly associated with lower BMI in all geographic regions. We saw variation across geographic region in the relationship between characteristics of the BE variables and BMI. Some perceived and objectively-measured characteristics of the BE were significantly associated with adult BMI, but significant relationships varied by geographic region. For example, in the Northeast, perceived attractiveness of the neighborhood as a reason for why they chose to live there was associated with lower BMI; in Texas, the perceived presence of a fast food restaurant was negatively associated with BMI; in Washington, perceived presence of trees along the streets was associated with lower BMI. Our findings suggest that regional variation plays a role in the relationship between adult BMI and BE characteristics in small towns. Regardless of geographic location, interventions should encourage utilitarian walking and other forms of physical activity.
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Índice de Massa Corporal , Planejamento Ambiental/estatística & dados numéricos , Sistemas de Informação Geográfica/estatística & dados numéricos , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , New England , Fatores Socioeconômicos , Inquéritos e Questionários , Texas , WashingtonRESUMO
UNLABELLED: Action Learning Collaboratives (ALCs), whereby teams apply quality improvement (QI) tools and methods, have successfully improved patient care delivery and outcomes. We adapted and tested the ALC model as a community-based obesity prevention intervention focused on physical activity and healthy eating. METHOD: The intervention used QI tools (e.g., progress monitoring) and team-based activities and was implemented in three communities through nine monthly meetings. To assess process and outcomes, we used a longitudinal repeated-measures and mixed-methods triangulation approach with a quasi-experimental design including objective measures at three time points. RESULTS: Most of the 97 participants were female (85.4%), White (93.8%), and non-Hispanic/Latino (95.9%). Average age was 52 years; 28.0% had annual household income of $20,000 or less; and mean body mass index was 35. Through mixed-effects models, we found some physical activity outcomes improved. Other outcomes did not significantly change. Although participants favorably viewed the QI tools, components of the QI process such as sharing goals and data on progress in teams and during meetings were limited. Participants' requests for more education or activities around physical activity and healthy eating, rather than progress monitoring and data sharing required for QI activities, challenged ALC model implementation. CONCLUSIONS: An ALC model for community-based obesity prevention may be more effective when applied to preexisting teams in community-based organizations.
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Comportamentos Relacionados com a Saúde , Educação em Saúde/métodos , Promoção da Saúde/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise de Variância , Índice de Massa Corporal , Criança , Pesquisa Participativa Baseada na Comunidade , Dieta , Feminino , Frutas , Inquéritos Epidemiológicos , Humanos , Aprendizagem , Masculino , Pessoa de Meia-Idade , Atividade Motora , Obesidade/prevenção & controle , Avaliação de Processos e Resultados em Cuidados de Saúde , Apoio Social , Verduras , Adulto JovemRESUMO
OBJECTIVES: The role of the built environment on walking in rural United States (U.S.) locations is not well characterized. We examined self-reported and measured built environment correlates of walking for utilitarian purposes among adult residents of small rural towns. METHODS: In 2011-12, we collected telephone survey and geographic data from 2152 adults in 9 small towns from three U.S. regions. We performed mixed-effects logistic regression modeling to examine relationships between built environment measures and utilitarian walking ("any" versus "none"; "high" [≥150min per week] versus "low" [<150min per week]) to retail, employment and public transit destinations. RESULTS: Walking levels were lower than those reported for populations living in larger metropolitan areas. Environmental factors significantly (p<0.05) associated with higher odds of utilitarian walking in both models included self-reported presence of crosswalks and pedestrian signals and availability of park/natural recreational areas in the neighborhood, and also objectively measured manufacturing land use. CONCLUSIONS: Environmental factors associated with utilitarian walking in cities and suburbs were important in small rural towns. Moreover, manufacturing land use was associated with utilitarian walking. Modifying the built environment of small towns could lead to increased walking in a sizeable segment of the U.S. population.
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Planejamento Ambiental , População Rural , Caminhada/estatística & dados numéricos , Adulto , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Modelos Logísticos , Masculino , Características de Residência , Autorrelato , Estados UnidosRESUMO
INTRODUCTION: There is great disparity in tobacco outlet density (TOD), with density highest in low-income areas and areas with greater proportions of minority residents, and this disparity may affect cancer incidence. We sought to better understand the nature of this disparity by assessing how these socio-demographic factors relate to TOD at the national level. METHODS: Using mixture regression analysis and all of the nearly 65,000 census tracts in the contiguous United States, we aimed to determine the number of latent disparity classes by modeling the relations of proportions of Blacks, Hispanics, and families living in poverty with TOD, controlling for urban/rural status. RESULTS: We identified six disparity classes. There was considerable heterogeneity in relation to TOD for Hispanics in rural settings. For Blacks, there was no relation to TOD in an urban moderate disparity class, and for rural census tracts, the relation was highest in a moderate disparity class. CONCLUSIONS: We demonstrated the utility of classifying census tracts on heterogeneity of tobacco risk exposure. This approach provides a better understanding of the complexity of socio-demographic influences of tobacco retailing and creates opportunities for policy makers to more efficiently target areas in greatest need.
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Comércio/estatística & dados numéricos , Disparidades nos Níveis de Saúde , Indústria do Tabaco/estatística & dados numéricos , Produtos do Tabaco/economia , Negro ou Afro-Americano/estatística & dados numéricos , Mapeamento Geográfico , Hispânico ou Latino/estatística & dados numéricos , Humanos , Pobreza/estatística & dados numéricos , Áreas de Pobreza , Análise de Regressão , Características de Residência , População Rural/estatística & dados numéricos , Fatores Socioeconômicos , Produtos do Tabaco/estatística & dados numéricos , Estados Unidos , População Urbana/estatística & dados numéricosRESUMO
The purpose of this study was to determine if mobile phones interfere with adolescent sleep. We conducted a pilot test in a pediatric primary care practice of 454 patients, half female (51.2%), 12 to 20 years old (mean = 15) attending a well-child visit. Adolescents completed paper-and-pencil surveys in the waiting room. More than half took their mobile phone to bed (62.9%) and kept it turned on while sleeping (56.8%). Almost half used their phone as their alarm (45.7%). More than one-third texted after going to bed (36.7%). Two or more times per week, 7.9% were awakened by a text after going to sleep.
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Comportamento do Adolescente , Telefone Celular/estatística & dados numéricos , Privação do Sono/etiologia , Adolescente , Criança , Coleta de Dados , Feminino , Humanos , Masculino , New Hampshire , Obesidade/etiologia , Projetos Piloto , Fatores de Risco , Distribuição por Sexo , Privação do Sono/complicações , Envio de Mensagens de Texto/estatística & dados numéricos , Adulto JovemRESUMO
Photo-elicitation is a qualitative interviewing technique that has gained popularity in recent years. It is the foundation for photovoice projects and is a tool well-suited for community-based participatory research. Photo-elicitation yields rich data, and interview participants say these interviews encourage community awareness and engagement. This article draws on 9 studies, conducted by researchers at 3 institutions (the University of Pennsylvania, the Philadelphia Veterans Affairs Medical Center, and the Geisel School of Medicine at Dartmouth) in partnership with community-based organizations and students, in which 303 participants completed photo-elicitation interviews. We offer 8 practical suggestions for overcoming challenges encountered during photo-elicitation research and for managing ethical concerns about the use of visual data in public health research. Our guidelines can inform study design, protocol development, and institutional review board approval.
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Entrevistas como Assunto/métodos , Fotografação , Projetos de Pesquisa/normas , HumanosRESUMO
OBJECTIVE: To elucidate how demographics of US Census tracts are related to tobacco outlet density (TOD). METHOD: The authors conducted a nationwide assessment of the association between socio-demographic US Census indicators and the density of tobacco outlets across all 64,909 census tracts in the continental USA. Retail tobacco outlet addresses were determined through North American Industry Classification System codes, and density per 1000 population was estimated for each census tract. Independent variables included urban/rural; proportion of the population that was black, Hispanic and women with low levels of education; proportion of families living in poverty and median household size. RESULTS: In a multivariate analysis, there was a higher TOD per 1000 population in urban than in rural locations. Furthermore, higher TOD was associated with larger proportions of blacks, Hispanics, women with low levels of education and with smaller household size. Urban-rural differences in the relation between demographics and TOD were found in all socio-demographic categories, with the exception of poverty, but were particularly striking for Hispanics, for whom the relation with TOD was 10 times larger in urban compared with rural census tracts. CONCLUSIONS: The findings suggest that tobacco outlets are more concentrated in areas where people with higher risk for negative health outcomes reside. Future studies should examine the relation between TOD and smoking, smoking cessation, as well as disease rates.
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Marketing , Fumar , Produtos do Tabaco , Negro ou Afro-Americano , Censos , Escolaridade , Características da Família , Mapeamento Geográfico , Hispânico ou Latino , Humanos , Análise Multivariada , Pobreza , População Rural , Fatores Sexuais , Fatores Socioeconômicos , Nicotiana , Estados Unidos , População UrbanaRESUMO
BACKGROUND: Marketing on television showcases less-healthful options, with emerging research suggesting movies promote similar products. Given the obesity epidemic, understanding advertising to youth should be a public health imperative. The objective of this study was to estimate youth impressions to food and beverages delivered through movies. METHODS: Impressions were calculated by dividing US receipts annually into average movie ticket prices, then multiplying this by the number of brand appearances. Examination by ratings, product types and ages were conducted by Spearman rank correlation coefficient tests. RESULTS: Youth in the USA saw over 3 billion food, beverage or food-retail establishment (FRE) impressions on average, annually from 1996 to 2005. Those aged 12-18 viewed over half of all impressions, with PG-13-rated movies containing 61.5% of impressions. There were no significant trends in brand appearances by food, beverage or FRE impressions over the decade, although there was a decreasing trend in R-rated impressions for both foods (P< 0.01) and beverages (P< 0.01), but not FREs (P= 0.08). CONCLUSIONS: Movies promote billions of food and beverage impressions annually to youth. Given the public health crisis of obesity, future research should further investigate these trends, as well as the potential association of these unhealthy exposures in youth.
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Publicidade/tendências , Bebidas , Indústria Alimentícia , Alimentos , Filmes Cinematográficos/tendências , Adolescente , Comportamento do Adolescente/psicologia , Criança , Humanos , Grupos Populacionais/psicologia , Fatores Sexuais , Estados UnidosRESUMO
Introduction: Walking has the potential to promote health across the life span, but age-specific features of the neighborhood environment (NE), especially in rural communities, linked with walking have not been adequately characterized. This study examines the relationships between NE and utilitarian walking among older vs. younger adults living in US rural towns. Methods: Data for this cross-sectional study came from telephone interviews in 2011-2012 with 2,140 randomly sampled younger (18-64 years, n = 1,398) and older (65+ years, n = 742) adults, collecting personal and NE perception variables. NE around each participant's home was also measured objectively using geographic information system techniques. Separate mixed-effects logistic regression models were estimated for the two age groups, predicting the odds of utilitarian walking at least once a week. Results: Perceived presence of crosswalks and pedestrian signals was significantly related to utilitarian walking in both age groups. Among older adults, unattended dogs, lighting at night, and religious institutions were positively while steep slope was negatively associated with their walking. For younger adults, traffic speed (negative, -), public transportation (positive, +), malls (-), cultural/recreational destinations (+), schools (+), and resource production land uses such as farms and mines (-) were significant correlates of utilitarian walking. Conclusion: Different characteristics of NE are associated with utilitarian walking among younger vs. older adults in US rural towns. Optimal modifications of NE to promote walking may need to reflect these age differences.
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Planejamento Ambiental , Caminhada , Idoso , Animais , Cidades , Estudos Transversais , Cães , Promoção da Saúde , Humanos , População RuralRESUMO
Educators, parents, practitioners, and mainstream media often raise concerns about the dangers of social media for teenagers. Frequent social media use and exposure to sites that emphasize anonymity may be risky for young adolescents (Charmaraman, Gladstone, & Richer, 2018). However, with healthy limits, social media can improve social connectivity, enhance a sense of belonging, and provide forums for self-disclosure and identity exploration (James et al., 2017).
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Many older adult cancer survivors reduce their activity level during and after cancer treatment. Occupational therapy interventions need to flexibly address various obstacles to occupational engagement that survivors may face. The aim of this analysis was to describe the content of a participant-directed occupational therapy intervention for older adults with cancer. Content analysis was used to describe the treatment session data from the experimental arm of a pilot randomized controlled trial in terms of activities addressed, obstacles reported, and treatment strategies utilized. Participants predominantly used the intervention to increase exercise engagement or address instrumental activities of daily living. The most common obstacles to occupational engagement included fatigue, finding time, weather, and pain. Regarding treatment strategies, 77% of participants chose to practice the activity with the occupational therapist, 42% requested a piece of equipment, and 11% modified the environment to increase activity engagement. Overall, the participant-directed intervention appears flexible enough to address various activities and obstacles to occupational engagement.
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Atividades Cotidianas , Sobreviventes de Câncer , Neoplasias , Qualidade de Vida , Idoso , Exercício Físico , Fadiga , Feminino , Humanos , Atividades de Lazer , Masculino , Terapia OcupacionalRESUMO
BACKGROUND: Smoking is one of the top preventable causes of mortality in people with psychotic disorders such as schizophrenia. Cessation treatment improves abstinence outcomes, but access is a barrier. Mobile phone apps are one way to increase access to cessation treatment; however, whether they are usable by people with psychotic disorders, who often have special learning needs, is not known. OBJECTIVE: Researchers reviewed 100 randomly selected apps for smoking cessation to rate them based on US guidelines for nicotine addiction treatment and to categorize them based on app functions. We aimed to test the usability and usefulness of the top-rated apps in 21 smokers with psychotic disorders. METHODS: We identified 766 smoking cessation apps and randomly selected 100 for review. Two independent reviewers rated each app with the Adherence Index to US Clinical Practice Guideline for Treating Tobacco Use and Dependence. Then, smokers with psychotic disorders evaluated the top 9 apps within a usability testing protocol. We analyzed quantitative results using descriptive statistics and t tests. Qualitative data were open-coded and analyzed for themes. RESULTS: Regarding adherence to practice guidelines, most of the randomly sampled smoking cessation apps scored poorly-66% rated lower than 10 out of 100 on the Adherence Index (Mean 11.47, SD 11.8). Regarding usability, three common usability problems emerged: text-dense content, abstract symbols on the homepage, and subtle directions to edit features. CONCLUSIONS: In order for apps to be effective and usable for this population, developers should utilize a balance of text and simple design that facilitate ease of navigation and content comprehension that will help people learn quit smoking skills.
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PURPOSE: Using the Academy of Nutrition and Dietetics benchmarks as a framework, this study examined childcare providers' (Head Start [HS], Child and Adult Care Food Program [CACFP] funded, and non-CACFP) perspectives regarding communicating with parents about nutrition to promote children's health. DESIGN: Qualitative. SETTING: State-licensed center-based childcare programs. PARTICIPANTS: Full-time childcare providers (n = 18) caring for children 2 to 5 years old from varying childcare contexts (HS, CACFP funded, and non-CACFP), race, education, and years of experience. METHODS: In-person interviews using semi-structured interview protocol until saturation were achieved. Thematic analysis was conducted. RESULTS: Two overarching themes were barriers and strategies to communicate with parents about children's nutrition. Barriers to communication included-(a) parents are too busy to talk with providers, (b) parents offer unhealthy foods, (c) parents prioritize talking about child food issues over nutrition, (d) providers are unsure of how to communicate about nutrition without offending parents, and (e) providers are concerned if parents are receptive to nutrition education materials. Strategies for communication included-(a) recognize the benefits of communicating with parents about nutrition to support child health, (b) build a partnership with parents through education, (c) leverage policy (federal and state) to communicate positively and avoid conflict, (d) implement center-level practices to reinforce policy, and (e) foster a respectful relationship between providers and parents. CONCLUSION: Policy and environmental changes were recommended for fostering a respectful relationship and building a bridge between providers and parents to improve communication about children's nutrition and health.
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Creches/organização & administração , Comunicação , Dieta , Pais , Pré-Escolar , Educação em Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Entrevistas como Assunto , Pesquisa Qualitativa , Fatores SocioeconômicosRESUMO
OBJECTIVES: To identify geriatric obesity interventions that can guide clinical recommendations. DESIGN: Systematic review using Medline (PubMed), Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, EMBASE (Ovid), and PsycINFO (Proquest) from January 1, 2005, to October 12, 2015, to identify English-language randomized controlled trials. PARTICIPANTS: Individuals aged 60 and older (mean age ≥65) and classified as having obesity (body mass index ≥30 kg/m2 ). INTERVENTIONS: Behavioral weight loss interventions not involving pharmacological or procedural therapies lasting 6 months or longer. MEASUREMENTS: Two investigators performed the systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria and achieved a high concordance rate (97.3%) in summarizing the primary outcomes. The three primary outcomes were weight loss, physical performance, and quality of life. RESULTS: Of 5,741 citations, 19 were included. (Six studies were unique, and the remaining 13 were based on the same study population.) Duration ranged from 6 to 18 months (n = 405 participants, age range 66.7-71.1). Weight loss in the intervention groups ranged from 0.5 to 10.7 kg (0.1-9.3%). Five studies had a resistance exercise program accompanying a dietary component. Greater weight loss was observed in groups with a dietary component than those with exercise alone. Exercise alone led to better physical function but no significant weight loss. Combined dietary and exercise components led to the greatest improvement in physical performance measures and quality of life and mitigated reductions in muscle and bone mass observed in diet-only study arms. Heterogeneous outcomes were observed, which limited the ability to synthesize the data quantitatively. CONCLUSIONS: The evidence supporting geriatric obesity interventions to improve physical function and quality of life is of low to moderate quality. Well-designed trials are needed in this population.
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Dieta Redutora , Exercício Físico , Obesidade/terapia , Programas de Redução de Peso , Índice de Massa Corporal , Humanos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Redução de PesoRESUMO
BACKGROUND: Walking among Latinos in US Micropolitan towns may vary by language spoken. METHODS: In 2011-2012, we collected telephone survey and built environment (BE) data from adults in six towns located within micropolitan counties from two states with sizable Latino populations. We performed mixed-effects logistic regression modeling to examine relationships between ethnicity-language group [Spanish-speaking Latinos (SSLs); English-speaking Latinos (ESLs); and English-speaking non-Latinos (ENLs)] and utilitarian walking and recreational walking, accounting for socio-demographic, lifestyle and BE characteristics. RESULTS: Low-income SSLs reported higher amounts of utilitarian walking than ENLs (p = 0.007), but utilitarian walking in this group decreased as income increased. SSLs reported lower amounts of recreational walking than ENLs (p = 0.004). ESL-ENL differences were not significant. We identified no statistically significant interactions between ethnicity-language group and BE characteristics. DISCUSSION: Approaches to increase walking in micropolitan towns with sizable SSL populations may need to account for this group's differences in walking behaviors.
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Meio Ambiente , Hispânico ou Latino/estatística & dados numéricos , Idioma , Atividades de Lazer , Caminhada/estatística & dados numéricos , Adulto , Índice de Massa Corporal , Emigrantes e Imigrantes/estatística & dados numéricos , Feminino , Humanos , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Características de Residência , Fatores Socioeconômicos , Estados UnidosRESUMO
BACKGROUND: The aim of this study was to increase knowledge regarding the dangers associated with tobacco use, and decrease secondhand smoke exposure and tobacco use behaviors with an antitobacco messaging campaign among rural, medically underserved, blue-collar workers. METHODS: A quasiexperimental study was conducted with employees at two worksites. One worksite received the intervention, which consisted of nine different antitobacco messages. Baseline and follow-up surveys were conducted at each worksite to assess change in knowledge and behavior; the data were compared across the two worksites. RESULTS: Two hundred twenty-two and 243 participants completed baseline and follow-up surveys at the intervention and comparison sites, respectively. A statistically significant difference was seen over time between the worksites on knowledge of the dangers of tobacco (p < 0.0001); the mean knowledge score increased at the intervention site, but remained unchanged at the comparison site. In general, nonsmokers at both worksites appeared to try to decrease exposure to secondhand smoke over the follow-up period. Repeated measures analysis indicated that there were no differences in motivation to quit (p = 0.81), interest in quitting (p = 0.40), thinking about quitting (p = 0.53), or several tobacco-use behaviors over time among smokers at the intervention and comparison worksites. There were slight increases over time in the proportion of smokers who do not allow smoking in their homes/vehicles at the intervention worksite, although not statistically significant. CONCLUSION: Participants at the intervention worksite increased their knowledge regarding the dangers of tobacco use and secondhand smoke exposure. Among current tobacco users, the intervention appeared to increase family rules regarding secondhand smoke exposure in their homes and vehicles.
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OBJECTIVE: To examine preschoolers' attitudes, expectations, and perceptions of tobacco and alcohol use. DESIGN: Structured observational study. Children used props and dolls to act out a social evening for adults. As part of the role play, each child selected items from a miniature grocery store stocked with 73 different products, including beer, wine, and cigarettes, for an evening with friends. SETTING: A behavioral laboratory at the Department of Psychological and Brain Sciences, Dartmouth College. PATIENTS: One hundred twenty children, 2 to 6 years old, participated individually in the role-playing. MAIN OUTCOME MEASURE: Whether or not a child purchased cigarettes or alcohol at the store. RESULTS: Children purchased a mean of 17 of the 73 products in the store. Thirty-four children (28.3%) bought cigarettes and 74 (61.7%) bought alcohol. Children were more likely to buy cigarettes if their parents smoked (adjusted odds ratio [OR], 3.90; 95% confidence interval [CI], 1.20-12.63). Children were more likely to buy beer or wine if their parents drank alcohol at least monthly (adjusted OR, 3.04; 95% CI, 1.02-9.10) or if they viewed PG-13- or R-rated movies (adjusted OR, 5.10; 95% CI, 1.14-22.90). Children's play behavior suggests that they are highly attentive to the use and enjoyment of alcohol and tobacco and have well-established expectations about how cigarettes and alcohol fit into social settings. CONCLUSIONS: The data suggest that observation of adult behavior, especially parental behavior, may influence preschool children to view smoking and drinking as appropriate or normative in social situations. These perceptions may relate to behaviors adopted later in life.
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Consumo de Bebidas Alcoólicas/psicologia , Atitude Frente a Saúde , Comportamento Infantil/psicologia , Assunção de Riscos , Desempenho de Papéis , Fumar/psicologia , Conformidade Social , Adulto , Fatores Etários , Criança , Pré-Escolar , Feminino , Humanos , Aprendizagem , Masculino , New Hampshire , Pais/psicologia , Jogos e Brinquedos , Meio Social , Percepção Social , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Persons with severe mental illness (SMI) often get extensive informal care from family members and friends as well as substantial amounts of formal treatment from paid professionals. Both sources of care are well documented, but very little is known about how one affects the other. AIMS OF THE STUDY: This analysis estimates the extent of substitution between direct care provided by family and friends and formal treatment for people with severe mental illness and substance use disorders. Separate estimates are generated for short-term and long-term effects. METHODS: Data are from a randomized clinical trial conducted at seven mental health centers in New Hampshire between 1989 and 1995. The study includes detailed data for 193 persons with dual disorders measured at study entry and every six months for three years. Hours of informal care were compared with total treatment costs within each six-month period to measure short-term effects. Average amount of informal care over three years represented long-term caregiving practices. Measures of informal care are from interviews with informal caregivers. Treatment costs are based on combined data from management information systems, Medicaid claims, hospital records, and self reports. We used mixed effects repeated measures regression to estimate longitudinal effects and a multiple imputation technique to test the sensitivity of results to missing data. RESULTS: In the short-term, persons with bipolar disorder used significantly more formal care as informal care increased (complementarity). The relationship between short-term informal and formal care was significantly weaker for persons with schizophrenia. For both diagnostic groups there was a long-term substitution effect; a 4-6% increase in informal care hours was associated with an approximate 1% decrease in formal care costs. DISCUSSION: Although they must be confirmed by further research, these findings suggest that there is a significant and strong relationship between care given by family and friends and that supplied by formal treatment providers. The analysis indicates that the short-term relationship between informal care and formal treatment tends to be complementary, but differs according to diagnosis. Long-term effects, which are possibly related to changing role perceptions, show substitution between the two forms of care. Missing data for family care hours in some time periods was a concern in this study. However, the consistency in results between the analyses that used imputed data and the model using only original data increase our confidence in the findings. Although there may be some endogeneity between formal and informal care in other treatment settings we believe the unique characteristics of the service-rich environment in which this study was conducted limit that concern here. IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: The amount of care provided by informal caregivers has a significant impact on formal treatment costs. Models of care that explicitly acknowledge the interplay between the two types of care are needed to ensure efficient combinations of formal and informal care. IMPLICATIONS FOR HEALTH POLICY FORMULATION: How to best to encourage informal support, without overburdening caregivers, is a key challenge facing policy makers and providers of mental health services. The merits of various approaches to reducing caregiver burden is a subject that needs more attention from researchers. In the interim, the demands on informal caregivers may mount as efforts to reduce health care spending continue. IMPLICATIONS FOR FURTHER RESEARCH: Informal care is not often included in economic evaluations of mental health treatment. Although additional research is needed to understand better the mechanisms by which informal care and formal treatment are related, we believe our results offer a strong argument for including measures of informal care in future economic evaluations.