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1.
Am J Hum Genet ; 109(12): 2141-2151, 2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-36417915

RESUMO

As genomic and personalized medicine becomes mainstream, assessing and understanding the public's genetic literacy is paramount. Because genetic research drives innovation and involves much of the public, it is equally important to assess its impact on genetic literacy. We designed a survey to assess genetic literacy in three ways (familiarity, knowledge, and skills) and distributed it to two distinct samples: 2,050 members of the general population and 2,023 individuals currently enrolled in a large-scale genetic research study. We compared these data to a similar survey implemented in 2013. The results indicate that familiarity with basic genetic terms in 2021 (M = 5.36 [range 1-7], p < 0.001) and knowledge of genetic concepts in 2021 (M = 9.06 [56.6% correct], p = 0.002) are significantly higher compared to 2013 (familiarity: M = 5.08 [range 1-7]; knowledge: M = 8.72 [54.5% correct]). Those currently enrolled in a genetic study were also significantly more familiar with genetic terms (M = 5.79 [range 1-7], p < 0.001) and more knowledgeable of genetic concepts (M = 10.57 [66.1% correct], p < 0.001), and they scored higher in skills (M = 3.57 [59.5% correct], p < 0.001) than the general population (M = 5.36 [range 1-7]; M = 9.06 [56.6% correct]; M = 2.65 [44.2% correct]). The results suggest that genetic literacy is improving over time, with room for improvement. We conclude that educational interventions are needed to ensure familiarity with and comprehension of basic genetic concepts and suggest further exploration of the impact of genetic research participation on genetic literacy to determine mechanisms for potential interventions.


Assuntos
Pesquisa em Genética , Alfabetização , Humanos , Genômica , Medicina de Precisão
2.
Front Neuroendocrinol ; 69: 101062, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36773674

RESUMO

Caregiving has been robustly linked to caregiver health through the dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis in the context of caregiving for an adult with a chronic illness. However, little research examines the physiological impact of caregiving for a child with a chronic illness despite high burden and unique stressors. In this review, we explore the links of caregiving for a child with a congenital, chromosomal, or genetic disorder to the regulation or dysregulation of the HPA axis. A search was conducted in PubMed, Embase, and the Web of Science and 15 studies met inclusion criteria. Overall, there were inconsistent links of caregiving to HPA axis functioning, perhaps due to the heterogeneity across disease contexts, study designs, and biomarker measurement. Future research should standardize measurement and study designs, increase participant diversity, and examine moderators of the links of caregiving to the HPA axis.


Assuntos
Sistema Hipotálamo-Hipofisário , Sistema Hipófise-Suprarrenal , Adulto , Humanos , Criança , Doença Crônica , Estresse Psicológico
3.
Support Care Cancer ; 32(9): 572, 2024 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-39105828

RESUMO

PURPOSE: Adolescent and young adult cancer survivors (AYACS) are patients diagnosed with cancer between 15 and 39 years of age. AYACS are often derailed from planned educational and occupational endeavors due to disruption from cancer treatment and its consequences. The study objective was to examine how a personal cancer diagnosis impacted AYACS' experiences related to these endeavors. METHODS: Semi-structured interviews were conducted as part of a larger study assessing psychosocial challenges among a younger AYACS subset aged 15-25 years old at the time of cancer diagnosis. Interviews were coded based on responses and were used to develop themes related to educational and occupational endeavors. RESULTS: Data were collected from 35 participants. Five themes emerged: (1) Pauses in educational attainment had a detrimental effect on educational goals for some participants, but further solidified and sculpted educational plans for others; (2) Although participants experienced challenges accomplishing educational goals, supportive school environments helped surmount these challenges; (3) Participants reflected on rethinking career aspirations, though some desired to pursue the same occupation planned before cancer diagnosis; (4) Participants experienced challenges, including physical and cognitive limitations, upon returning to work; and (5) Participants valued autonomy and normalcy through work and appreciated supportive and flexible work environments. CONCLUSIONS: AYACS prioritize professional achievement, yet encounter challenges in achieving professional goals. Our findings create a foundation for developing and testing prospective interventions to promote continuance of school and work during cancer treatment when feasible, and proactive reintegration strategies for those who paused professional goals due to cancer treatment.


Assuntos
Sobreviventes de Câncer , Pesquisa Qualitativa , Humanos , Sobreviventes de Câncer/psicologia , Adolescente , Masculino , Feminino , Adulto Jovem , Adulto , Neoplasias/psicologia , Entrevistas como Assunto , Escolaridade , Escolha da Profissão
4.
Qual Health Res ; 34(1-2): 126-140, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37879105

RESUMO

Rare diseases constitute a group of conditions that are individually rare, but in aggregate impact between 3 and 6% of the world population. Many of these conditions present during infancy and involve substantial caregiving responsibilities, often assessed via quantitative measurements. However, few qualitative analyses examine lived experiences of parent-caregivers during the early period of their child's life. The purpose of this study was to examine the meaning that rare disease parent-caregivers apply to the postpartum year using data collected from a semi-structured interview exploring significant experiences over the course of their affected child's life. We utilized an interpretative phenomenological analysis (IPA) approach to analyze 22 interview transcripts from caregivers to children with several inherited metabolic and mitochondrial disorders, as well as an undiagnosed disease. Our analysis yielded three superordinate themes: Reckoning With the Parent-Caregiver Role, Familial Transition, and Adaptation and Adjustment. Subordinate themes expanded upon these concepts and included distinctions between the parent and caregiving identity, communal coping and shifting of family dynamics, as well as meaning applied to child milestones, anticipatory grief, and parental perception of a new normal. Exploration of these themes in relation to existing literature, as well as future research directions for qualitative research on rare disease caregivers, is discussed. Overall, this work contributes to a growing body of literature exploring the parental experience of rare disease across several condition contexts.


Assuntos
Cuidadores , Doenças Raras , Criança , Feminino , Humanos , Pais , Pesar , Pesquisa Qualitativa
5.
Soc Networks ; 74: 236-244, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37546366

RESUMO

Communal coping may benefit caregivers, but most communal coping research focuses on dyads. Using an egocentric network design, we examine caregivers' we-talk-a linguistic marker of shared responsibility-and caregiver reports of 1) network member involvement in collaborative care roles and 2) met/unmet expectations across typically developing and rare disease contexts. We-talk was linked to involvement in direct care and support, but links of we-talk to decision-making varied based on network member closeness; we-talk was linked to meeting expectations for decision-making only. There were no differences across context, suggesting shared responsibility is linked to collaborative roles across caregiving contexts.

6.
J Genet Couns ; 32(4): 916-925, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36994658

RESUMO

Disease-specific knowledge allows individuals with sickle cell disease, sickle cell trait, and unaffected family members alike to make informed decisions and support those affected by the condition. The current study assesses how sickle cell knowledge varies by disease status within families affected by sickle cell disease. One hundred seventy-nine participants from 84 families completed an online survey and telephone interview. Generalized linear models, with generalized estimating equations, were fitted to evaluate differences in both item-level responses and total scores on the Sickle Cell Knowledge Scale by sickle cell status. Those with negative or unknown sickle cell status scored significantly lower than those with sickle cell disease or trait, despite being related to someone with sickle cell disease (χ2 (2) = 9.72, p = 0.008). Overall, participants performed poorly on items related to sickle cell trait, with limited understanding of autosomal recessive inheritance patterns. The study's findings suggest a need to move beyond patient-centered approaches to family-centered education efforts that reach those with sickle cell traits and negative or unknown status. Findings point to knowledge gaps related to sickle cell trait and patterns of inheritance, representing key enhancement areas for future sickle cell education efforts.


Assuntos
Anemia Falciforme , Traço Falciforme , Humanos , Traço Falciforme/genética , Conhecimentos, Atitudes e Prática em Saúde , Anemia Falciforme/genética , Inquéritos e Questionários , Escolaridade
7.
J Genet Couns ; 30(5): 1418-1427, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33847032

RESUMO

Sickle cell disease (SCD) can cause both physical and psychological complications, such as severe pain and depression. These effects often necessitate social and caregiving support. Few studies have assessed support networks within the adult SCD population. Here, we describe the support networks of adults with SCD and identify who in these networks (1) provides emotional support, (2) is dependable during crisis situations, including social and financial adversities, and (3) provides assistance in health crises. Forty-nine adults with SCD completed surveys and social network assessments through interview. Generalized mixed-effects linear regression models were fitted to investigate the composition of support provision within these personal networks. Our findings indicate that parents and 'other important people' (e.g., friends, spouses) play key roles in the support provided to those with SCD. Siblings with SCD appeared to be more emotionally supportive than unaffected siblings. With much research centered around the pediatric and adolescent SCD populations, focus needs to extend to adults and the individuals involved in their care and disease management. Understanding the flow of support within these networks can help genetic counselors and healthcare providers to better identify both social ties that serve as support resources and less supportive relationships for individuals living with SCD and other chronic genetic conditions that might be targeted for intervention.


Assuntos
Anemia Falciforme , Adolescente , Anemia Falciforme/terapia , Criança , Humanos , Dor , Pais , Apoio Social , Inquéritos e Questionários
8.
J Appl Res Intellect Disabil ; 33(6): 1188-1198, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32285593

RESUMO

BACKGROUND: For people with intellectual disabilities (ID), social networks play a key role in facilitating social inclusion, health, and quality of life. This study shows that a multi-informant approach to collecting social network data improves our understanding of the social worlds of people with Down Syndrome (DS). METHOD: A mixed methods egocentric network approach was employed to investigate 27 dyads comprised of people with DS and their family members as proxy reporters to examine variability in network characteristics across self- and proxy reports. RESULTS: The self-reported total network size of people with DS was significantly smaller than the network size based on proxy reports. Significant differences were found between self- and proxy-reported networks with respect to most relationship groups. Proxy informants reported more "paid staff". CONCLUSION: Our study showed that multiple perspectives on the social networks of people with DS are advantageous for researchers, policy makers, and practitioners.


Assuntos
Síndrome de Down , Deficiência Intelectual , Humanos , Qualidade de Vida , Autorrelato , Rede Social , Apoio Social
9.
J Ethn Subst Abuse ; 19(4): 521-536, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-30652524

RESUMO

Mexican American adolescents report high rates of alcohol consumption as well as media use. Viewing alcohol images in the media is associated with increased alcohol consumption; however, to date, this association has not been examined across different ethnic groups in the United States. To bridge this gap, we examined the association between viewing alcohol use images in PG-13-rated movies and alcohol initiation in Mexican-heritage adolescents. A cohort of 1,154 Mexican-heritage youth, average age 14 years, was followed for 2 years; in 2008-2009, participants reported alcohol use in the past 30 days and again in 2010-2011. Exposure to alcohol use images in PG-13-rated movies was estimated from 50 movies randomly selected from a pool of 250 of the top box office hits in the United States using previously validated methods. A series of generalized linear models, adjusting for age, gender, peer and family alcohol use, family functioning, anxiety, sensation-seeking tendency, and acculturation were completed. Multiple imputation was utilized to address missing data. Overall, N = 652 participants reported no alcohol use in 2008-2009; by 2010-2011, 33.6% (n = 219) had initiated alcohol use. Adjusted models indicated an independent association between exposure to alcohol use images in PG-13-rated movies and alcohol initiation (comparing quartiles 3 to 1: RR =1.53; 95% CI [1.11, 2.10]). The findings emphasize that the relationship between viewing alcohol use scenes in American films and alcohol initiation holds among Mexican-heritage adolescents and underscore the need to limit adolescents' exposure to such powerful images in PG-13-rated movies.


Assuntos
Comportamento do Adolescente/psicologia , Consumo de Bebidas Alcoólicas/epidemiologia , Comportamento Imitativo , Americanos Mexicanos/psicologia , Filmes Cinematográficos/estatística & dados numéricos , Adolescente , Publicidade , Feminino , Humanos , Masculino , Grupo Associado , Probabilidade
10.
Ann Behav Med ; 53(2): 126-137, 2019 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-29697747

RESUMO

Background: Despite prevalent binge drinking and alcohol-dependent symptoms among Hispanics, few studies have examined how multidimensional factors influence Hispanic adolescents' binge drinking. Purpose This study examines the effects of genetic, psychological, and social network factors on binge drinking over time among Mexican heritage adolescents in the USA and whether there are correlations among genetic variants that are associated with binge drinking and psychological and network characteristics. Methods: Mexican heritage adolescents (n = 731) participated in a longitudinal study, which included genetic testing at baseline, alcohol use assessments at first and second follow-ups, and questionnaires on sensation seeking, impulsivity, and peer and family network characteristics at second follow-up. Logistic regression and Spearman correlation analyses were performed. Results: After adjusting for demographic characteristics, underlying genetic clustering, and binge drinking at first follow-up, two genetic variants on tryptophan hydroxylase 2 (TPH2; rs17110451, rs7963717), sensation seeking and impulsivity, and having a greater fraction of peers who drink or encourage drinking alcohol were associated with greater risk whereas another genetic variant on TPH2 (rs11178999) and having a greater fraction of close family relationships were associated with reduced risk for binge drinking at second follow-up. Genetic variants in TPH1 (rs591556) were associated with sensation seeking and impulsivity, while genetic variants in TPH2 (rs17110451) were associated with the fraction of drinkers in family. Conclusions: Results reveal that genetic variants in the serotonin pathway, behavioral disinhibition traits, and social networks exert joint influences on binge drinking in Mexican heritage adolescents in the USA.


Assuntos
Consumo Excessivo de Bebidas Alcoólicas/genética , Consumo Excessivo de Bebidas Alcoólicas/psicologia , Americanos Mexicanos/genética , Americanos Mexicanos/psicologia , Rede Social , Triptofano Hidroxilase/genética , Adolescente , Comportamento do Adolescente/psicologia , Consumo de Bebidas Alcoólicas/psicologia , Criança , Feminino , Humanos , Comportamento Impulsivo , Estudos Longitudinais , Masculino , Polimorfismo de Nucleotídeo Único/genética , Assunção de Riscos , Consumo de Álcool por Menores/psicologia
11.
BMC Med Res Methodol ; 19(1): 56, 2019 03 12.
Artigo em Inglês | MEDLINE | ID: mdl-30871571

RESUMO

BACKGROUND: Family health history (FHH) inherently involves collecting proxy reports of health statuses of related family members. Traditionally, such information has been collected from a single informant. More recently, research has suggested that a multiple informant approach to collecting FHH results in improved individual risk assessments. Likewise, recent work has emphasized the importance of incorporating health-related behaviors into FHH-based risk calculations. Integrating both multiple accounts of FHH with behavioral information on family members represents a significant methodological challenge as such FHH data is hierarchical in nature and arises from potentially error-prone processes. METHODS: In this paper, we introduce a statistical model that addresses these challenges using informative priors for background variation in disease prevalence and the effect of other, potentially correlated, variables while accounting for the nested structure of these data. Our empirical example is drawn from previously published data on families with a history of diabetes. RESULTS: The results of the comparative model assessment suggest that simply accounting for the structured nature of multiple informant FHH data improves classification accuracy over the baseline and that incorporating family member health-related behavioral information into the model is preferred over alternative specifications. CONCLUSIONS: The proposed modelling framework is a flexible solution to integrate multiple informant FHH for risk prediction purposes.


Assuntos
Algoritmos , Teorema de Bayes , Modelos Logísticos , Anamnese/estatística & dados numéricos , Modelos Teóricos , Análise por Conglomerados , Coleta de Dados/métodos , Coleta de Dados/estatística & dados numéricos , Diabetes Mellitus Tipo 2/classificação , Diabetes Mellitus Tipo 2/diagnóstico , Diabetes Mellitus Tipo 2/terapia , Família , Saúde da Família/estatística & dados numéricos , Feminino , Humanos , Masculino , Anamnese/métodos , Anamnese/normas , Medição de Risco/métodos , Medição de Risco/estatística & dados numéricos
12.
Fam Community Health ; 42(4): 245-253, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31403985

RESUMO

We investigate how interpersonal ties influence communication about type 2 diabetes risk and encouragement to maintain or adopt a healthy lifestyle between family members of Mexican heritage, after a family history-based risk assessment intervention. Results suggest that individuals are more likely to initiate risk communication with another family member if they are close to, already seek advice from, or discuss health with him or her. Risk communication precedes encouragement, which is initiated by the older generation of the family. Understanding the role of interpersonal relationships in Mexican-heritage families can help identify who best to target in future health behavior interventions.


Assuntos
Diabetes Mellitus Tipo 2/psicologia , Adaptação Psicológica , Adulto , Feminino , Humanos , Masculino , Americanos Mexicanos , Fatores de Risco
13.
Ann Behav Med ; 52(3): 262-271, 2018 02 17.
Artigo em Inglês | MEDLINE | ID: mdl-29538667

RESUMO

Background: Collecting complete and accurate family health history is critical to preventing type 2 diabetes. Purpose: We seek to identify the optimal risk feedback approach that facilitates risk communication between parents and their adult children and helps them develop shared appraisals of family history of type 2 diabetes. Methods: In a sample of parent-adult child dyads from 125 Mexican-heritage families residing in Houston, Texas, we examine change in parent-child dyadic (dis)agreement with respect to their shared family health history from baseline to 10 months after receipt of risk feedback generated by Family Healthware. A 2 × 2 factorial design is applied to test how the recipient (one parent or all family members) and the content (risk assessment with or without behavioral recommendations) of the feedback affect (dis)agreement through interpersonal ties, particularly dyadic risk communication. Results: Providing risk assessment without behavioral recommendations to the parent, but not the adult child, shifts the dyads toward agreement (relative risk ratio [RRR]= 1.78, 95% confidence interval [CI] [1.18-2.67]), by activating reciprocal risk communication between parents and children (RRR =2.70, 95% CI [1.81-4.03]). Dyads with close interpersonal ties are more likely to shift toward agreement (RRR = 3.09, 95% CI [1.89-5.07]). Conclusion: Programs aimed at improving family health history knowledge and accuracy of reports should tailor risk feedback strategically for better intervention effect and leverage a network approach in disease prevention among at-risk minority and/or immigrant populations. Trial Registration Number: NCT00469339.


Assuntos
Diabetes Mellitus Tipo 2 , Suscetibilidade a Doenças , Retroalimentação Psicológica , Anamnese , Relações Pais-Filho , Adulto , Filhos Adultos , Feminino , Humanos , Masculino , Americanos Mexicanos , Pessoa de Meia-Idade , Risco , Adulto Jovem
14.
J Behav Med ; 40(2): 229-238, 2017 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-27412775

RESUMO

Discoveries from the Human Genome Project have invigorated discussions of epigenetic effects-modifiable chemical processes that influence DNA's ability to give instructions to turn gene expression on or off-on health outcomes. We suggest three domains in which new understandings of epigenetics could inform innovations in health promotion research: (1) increase the motivational potency of health communications (e.g., explaining individual differences in health outcomes to interrupt optimistic biases about health exposures); (2) illuminate new approaches to targeted and tailored health promotion interventions (e.g., relapse prevention targeted to epigenetic responses to intervention participation); and (3) inform more sensitive measures of intervention impact, (e.g., replace or augment self-reported adherence). We suggest a three-step process for using epigenetics in health promotion research that emphasizes integrating epigenetic mechanisms into conceptual model development that then informs selection of intervention approaches and outcomes. Lastly, we pose examples of relevant scientific questions worth exploring.


Assuntos
Epigênese Genética , Epigenômica , Promoção da Saúde , Pesquisa , Humanos
15.
BMC Public Health ; 16: 965, 2016 09 13.
Artigo em Inglês | MEDLINE | ID: mdl-27618810

RESUMO

BACKGROUND: Common disease risk clusters in families due to shared genetics, exposure to environmental risk factors, and because many health behaviours are established and maintained in family environments. This randomised controlled trial will test whether the provision of a family health history (FHH) risk assessment tool increases intentions and engagement in health behaviors. Message distribution and collective behavior change within family networks will be mapped using social network analysis. The relative intervention impact will be compared between families from different ethnic backgrounds. METHODS: One hundred and fifty mothers (50 Anglo-Australian, 50 Italian-Australian, 50 Vietnamese-Australian) will be recruited, with four or more other family members across three generations, including a child (aged 10-18 years). Each family is randomly assigned to intervention or control. At baseline and 6-month follow-up, all participants complete surveys to assess dietary and physical activity intentions and behaviors, attitudes towards food, and perceived disease risk. Intervention families receive a visual pedigree detailing their FHH of diabetes, heart disease, breast and bowel cancer, a health education workbook to ascertain members' disease risk (i.e. average or above average risk), and screening and primary prevention recommendations. After completion of follow-up assessments, controls will receive their pedigree and workbook. The primary hypothesis is that attitudes and lifestyle behaviors will improve more within families exposed to FHH feedback, although the extent of this improvement may vary between families from different ethnic backgrounds. Additionally, the extent of improvement in the treatment group will be moderated by the level of family disease risk, with above-average risk leading to greater improvement. A secondary aim will explore different family members' roles in message distribution and collective responses to risk using social network approaches and to compare network functioning between families with different ethnic backgrounds. DISCUSSION: Results will guide future health promotion programs aimed at improving lifestyle factors. This research will assess whether FHH can motivate families to adopt family-level strategies to support health promoting behaviors. Secondary analyses aim to identify change agents within the family who are particularly effective in shifting normative behaviors. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12613001033730 . Retrospectively registered: 17 September, 2013.


Assuntos
Doença Crônica/prevenção & controle , Família/psicologia , Promoção da Saúde/métodos , Estilo de Vida Saudável , Anamnese , Adolescente , Adulto , Idoso , Austrália , Criança , Doença Crônica/psicologia , Protocolos Clínicos , Dieta/psicologia , Exercício Físico , Feminino , Educação em Saúde/métodos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Intenção , Masculino , Pessoa de Meia-Idade , Mães/psicologia , Motivação , Linhagem , Medição de Risco/métodos , Fatores de Risco , Inquéritos e Questionários , Adulto Jovem
16.
BMC Med Genet ; 16: 43, 2015 Jun 26.
Artigo em Inglês | MEDLINE | ID: mdl-26111525

RESUMO

BACKGROUND: Despite well-established negative health consequences of smokeless tobacco use (STU), the number and variety of alternative non-combustible tobacco products on the market have increased tremendously over the last 10 years, as has the market share of these products relative to cigarettes. While STU among non-Hispanic white youth has decreased over the last 10 years, the prevalence has remained constant among Hispanic youth. Here we examine demographic, psychosocial, and genetic risk associated with STU among Mexican heritage youth. METHODS: Participants (50.5 % girls) reported on psychosocial risk factors in 2008-09 (n = 1,087, mean age = 14.3 years), and smokeless tobacco use in 2010-11 (mean age = 16.7 years). Participants provided a saliva sample that was genotyped for genes in the dopamine, serotonin and opioid pathways. RESULTS: Overall 62 (5.7 %) participants reported lifetime STU. We identified five single nucleotide polymorphisms that increased the risk for lifetime use. Specifically, rs2023902 on SERGEF (OR = 1.93; 95 % CI: 1.05-3.53), rs16941667 on ALDH2 (OR = 3.14; 95 % CI: 1.65-5.94), and rs17721739 on TPH1 (OR = 1.71; 95 % CI: 1.00-2.91) in the dopamine pathway, rs514912 on TRH-DE (OR = 1.84; 95 % CI: 1.25-2.71) in the serotonin pathway, and rs42451417 on the serotonin transporter gene, SLC6A4 (OR = 3.53; 95 % CI: 1.56-7.97). After controlling for genetic risk, being male (OR = 1.86; 95 % CI: 1.02-3.41), obesity status (OR = 2.22; 95 % CI: 1.21-4.09), and both higher levels of anxiety (OR = 1.04; 95 % CI: 1.01-1.08) and social disinhibition (OR = 1.26; 95 % CI: 1.07-1.48) were associated with increased use. High subjective social status (OR = 0.78; 95 % CI: 0.64-0.93) was protective against use, while higher parental education (OR = 2.01; 95 % CI: 1.03-3.93) was associated with increased use. CONCLUSIONS: These data suggest that use of genetic risk, along with psychosocial, demographic, and behavioral risk factors may increase our ability to identify youth at increased risk for STU, which in turn may improve our ability to effectively target prevention messages to Mexican heritage youth.


Assuntos
Americanos Mexicanos , Tabagismo , Tabaco sem Fumaça , Adolescente , Ansiedade/epidemiologia , Ansiedade/genética , Estudos de Casos e Controles , Criança , Estudos de Coortes , Feminino , Predisposição Genética para Doença , Humanos , Masculino , Americanos Mexicanos/genética , Americanos Mexicanos/psicologia , Americanos Mexicanos/estatística & dados numéricos , Polimorfismo de Nucleotídeo Único , Prevalência , Psicologia , Fatores de Risco , Fatores Socioeconômicos , Tabagismo/epidemiologia , Tabagismo/genética , Tabagismo/psicologia , Tabaco sem Fumaça/estatística & dados numéricos
17.
BMC Public Health ; 15: 1120, 2015 Nov 13.
Artigo em Inglês | MEDLINE | ID: mdl-26566980

RESUMO

BACKGROUND: Common diseases such as heart disease, diabetes, and cancer are etiologically complex with multiple risk factors (e.g., environment, genetic, lifestyle). These risk factors tend to cluster in families, making families an important social context for intervention and lifestyle-focused disease prevention. The Families Sharing Health Assessment and Risk Evaluation (SHARE) workbook was designed as an educational tool outlining family health history based risk of heart disease, type 2 diabetes, breast cancer, and colorectal cancer. The current paper describes the steps taken to develop and evaluate the workbook employing a user-centered design approach. METHODS: The workbook was developed in four steps, culminating in an evaluation focusing on understanding and usability of the tool. The evaluation was based on two Phases of data collected from a sample of mothers of young children in the Washington, D.C., area. A baseline assessment and follow-up approximately two weeks after receipt of the workbook were conducted, as well as focus groups with participants. The design of the workbook was refined in response to participant feedback from the first evaluation Phase and subsequently re-evaluated with a new sample. RESULTS: After incorporating user-based feedback and revising the workbook, Phase 2 evaluation results indicated that understanding of the workbook components improved for all sections (from 6.26 to 6.81 on a 7-point scale). In addition, 100% of users were able to use the algorithm to assess their disease risk and over 60% used the algorithm to assess family members' disease risk. At follow-up, confidence to increase fruit, vegetable and fiber intake improved significantly, as well. CONCLUSIONS: The Families SHARE workbook was developed and evaluated resulting in a family health history tool that is both understandable and usable by key stakeholders. This educational tool will be used in intervention studies assessing the effectiveness of family genomics health educators who use the Families SHARE workbook to disseminate family risk information and encourage risk reducing behaviors. TRIAL REGISTRATION: ClinicalTrials.gov, NCT01498276 . Registered 21 December 2011.


Assuntos
Saúde da Família , Comportamentos Relacionados com a Saúde , Educação em Saúde/métodos , Estilo de Vida , Comportamento de Redução do Risco , Adulto , Neoplasias da Mama/prevenção & controle , Neoplasias Colorretais/prevenção & controle , Diabetes Mellitus Tipo 2/prevenção & controle , Feminino , Guias como Assunto , Cardiopatias/prevenção & controle , Humanos , Mães , Fatores de Risco , Fatores Socioeconômicos
18.
Psychooncology ; 23(11): 1292-9, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24872228

RESUMO

OBJECTIVE: Genetic testing for hereditary cancer susceptibility syndromes is a family-centered process. Nonetheless, little research has explored how the family context affects psychological responses to genetic testing. We examine how personal test results and the test results of immediate and extended family members shape responses to genetic testing. METHODS: Individuals at risk of carrying a mutation associated with an inherited cancer susceptibility syndrome (Lynch syndrome) received genetic testing. Six months after receiving their results, participants reported on cancer distress, cancer worry, and depressive symptoms. RESULTS: Among mutation carriers for Lynch syndrome, the higher the proportion of carriers in their immediate family, the less cancer worry and distress they reported. In contrast, mutation carriers and non-carriers with a high proportion of carriers in their immediate family and mutation carriers with a high proportion of carriers in their extended family were at elevated risk for clinically significant levels of depressive symptoms. CONCLUSION: Personal test results alone are not highly predictive of psychological outcomes. Instead, the interaction between personal and family test results, or in some cases, family test results alone, predict key psychological outcomes. The current research has important implications for genetic counseling and intervention efforts. Published 2014. This article is a U.S. Government work and is in the public domain in the USA.


Assuntos
Ansiedade/psicologia , Neoplasias Colorretais Hereditárias sem Polipose/psicologia , Depressão/psicologia , Família/psicologia , Predisposição Genética para Doença/psicologia , Testes Genéticos , Estresse Psicológico/psicologia , Adolescente , Adulto , Idoso , Neoplasias Colorretais Hereditárias sem Polipose/genética , Feminino , Heterozigoto , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
19.
J Behav Med ; 37(2): 234-44, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-23203139

RESUMO

Family-based physical activity (PA) interventions would benefit from research that identifies how to build support for PA among family members. This study examined the extent to which relationships of encouragement to do PA, and co-engagement in PA, exist among Mexican-American parents and children, and sought to identify individual, relational, and household factors associated with these dimensions of support. Participants were 224 Mexican-origin adults, with at least one child aged 5-20 years, participating in a larger study conducted between 2008 and 2010. In baseline surveys, adult participants enumerated the names and attributes of their family and kin; this study focuses on 455 parent-child dyads, nested in 118 households. Parental encouragement of PA in their children was found in about half of dyads, and in 20 % of dyads children encouraged parents. Encouragement relationships were highly reciprocal. Reciprocal parent-child encouragement was also positively associated with co-participation in PA; the latter found in just 17 % of dyads. Results indicated that relational, individual, and socio-cultural attributes were associated with PA support among parents and children, and provide insights into how these relationships might be fostered within Mexican-American families.


Assuntos
Americanos Mexicanos/psicologia , Atividade Motora , Relações Pais-Filho , Adolescente , Adulto , Criança , Pré-Escolar , Características da Família , Feminino , Humanos , Masculino , Adulto Jovem
20.
Health Educ Res ; 29(2): 222-34, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24463396

RESUMO

Little is known about the effect of personalized risk information on risk perceptions over time, particularly among ethnically diverse subpopulations. The present study examines Mexican American's (MAs) risk perceptions for heart disease and diabetes at baseline and following receipt of risk feedback based on family health history. Participants comprising 162 households received a pedigree or personalized risk feedback, with or without behavioral risk reduction recommendations. Multiple logistic regression analyses were used to assess lifetime perceived risk (LPR) at baseline, 3 months and 10 months following the receipt of risk feedback. Having an elevated familial risk of heart disease or diabetes increased the odds of an elevated LPR for both diseases at baseline. At 3 months, compared with receipt of a pedigree only, MAs receiving elevated risk feedback for both diseases were more likely to have an elevated LPR for both diseases. At 10 months, participants receiving weak risk feedback for both diseases indicated an adjustment to a lower LPR for heart disease only. Results suggest that communicating risk for multiple diseases may be more effective than a single disease, with responses to increased risk feedback more immediate than to weak risk feedback.


Assuntos
Diabetes Mellitus/etnologia , Retroalimentação Psicológica , Educação em Saúde/métodos , Cardiopatias/etnologia , Americanos Mexicanos/psicologia , Adolescente , Adulto , Idoso , Diabetes Mellitus/etiologia , Diabetes Mellitus/psicologia , Família , Feminino , Cardiopatias/etiologia , Cardiopatias/psicologia , Humanos , Masculino , Americanos Mexicanos/estatística & dados numéricos , Pessoa de Meia-Idade , Medição de Risco/métodos , Fatores de Risco , Comportamento de Redução do Risco , Adulto Jovem
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