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1.
Int J Equity Health ; 23(1): 83, 2024 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-38678232

RESUMO

BACKGROUND: People living with HIV (PLWH) are at increased risk of cardiometabolic disorders (CMD). Adequate access to care for both HIV and CMD is crucial to improving health outcomes; however, there is limited research that have examined couples' experiences accessing such care in resource-constrained settings. We aimed to identify barriers to accessing CMD care among PLWH in Malawi and the role of partners in mitigating these barriers. METHODS: We conducted a qualitative investigation of barriers to CMD care among 25 couples in Malawi. Couples were eligible if at least one partner was living with HIV and had hypertension or diabetes (i.e., the index patient). Index patients were recruited from HIV care clinics in the Zomba district, and their partners were enrolled thereafter. Interviews were conducted separately with both partners to determine barriers to CMD care access and how partners were involved in care. RESULTS: Participants framed their experiences with CMD care by making comparisons to HIV treatment, which was free and consistently available. The main barriers to accessing CMD care included shortage of medications, cost of tests and treatments, high cost of transportation to health facilities, lengthy wait times at health facilities, faulty or unavailable medical equipment and supplies, inadequate monitoring of patients' health conditions, some cultural beliefs about causes of illness, use of herbal therapies as an alternative to prescribed medicine, and inadequate knowledge about CMD treatments. Partners provided support through decision-making on accessing medical care, assisting partners in navigating the healthcare system, and providing financial assistance with transportation and treatment expenses. Partners also helped manage care for CMD, including communicating health information to their partners, providing appointment reminders, supporting medication adherence, and supporting recommended lifestyle behaviors. CONCLUSIONS: Couples identified many barriers to CMD care access, which were perceived as greater challenges than HIV care. Partners provided critical forms of support in navigating these barriers. With the rise of CMD among PLWH, improving access to CMD care should be prioritized, using lessons learned from HIV and integrated care approaches. Partner involvement in CMD care may help mitigate most barriers to CMD care.


Assuntos
Infecções por HIV , Acessibilidade aos Serviços de Saúde , Pesquisa Qualitativa , Humanos , Malaui , Infecções por HIV/psicologia , Infecções por HIV/terapia , Infecções por HIV/complicações , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Resiliência Psicológica , Doenças Cardiovasculares/terapia , Hipertensão/terapia , Hipertensão/psicologia
2.
Soc Sci Med ; 342: 116540, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38199009

RESUMO

RATIONALE: HIV and cardiometabolic disorders including hypertension and diabetes pose a serious double threat in Malawi. Supportive couple relationships may be an important resource for managing these conditions. According to the theory of communal coping, couples will more effectively manage illness if they view the illness as "our problem" (shared illness appraisal) and are united in shared behavioral efforts. METHODS: This study qualitatively investigated communal coping of 25 couples living with HIV and hypertension or diabetes in Zomba, Malawi. Partners were interviewed separately regarding relationship quality, shared illness appraisal, communal coping, and dyadic management of illness. RESULTS: Most participants (80%) were living with HIV, and more than half were also living with hypertension. Most participants expressed high levels of unity and the view that illness was "our problem." In some couples, partners expected but did not extend help and support and reported little collaboration. Communal coping and dyadic management were strongly gendered. Some women reported a one-sided support relationship in which they gave but did not receive support. Women were also more likely to initiate support interactions and offered more varied support than men. In couples with poor relationship quality and weak communal coping, dyadic management of illness was also weak. Partner support was particularly crucial for dietary changes, as women typically prepared meals for the entire family. Other lifestyle changes that could be supported or hindered by a partner included exercise, stress reduction, and medication adherence. CONCLUSION: We conclude that gendered power imbalances may influence the extent to which couple-level ideals translate into actual communal coping and health behaviors. Given that spouses and families of patients are also at risk due to shared environments, we call for a shift from an illness management paradigm to a paradigm of optimizing health for spouses and families regardless of diabetes or hypertension diagnosis.


Assuntos
Doenças Cardiovasculares , Diabetes Mellitus , Infecções por HIV , Hipertensão , Masculino , Humanos , Feminino , Relações Interpessoais , Capacidades de Enfrentamento , Estilo de Vida , Infecções por HIV/complicações , Infecções por HIV/tratamento farmacológico , Hipertensão/complicações , Adaptação Psicológica , Cônjuges
3.
BMJ Open ; 14(1): e083390, 2024 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-38296300

RESUMO

INTRODUCTION: Heavy alcohol use among people living with HIV in sub-Saharan Africa can hinder the success of HIV treatment programmes, impacting progress towards United Nations Programme on HIV/AIDS goals. Primary partners can provide critical forms of social support to reduce heavy drinking and could be included in motivational interviewing (MI) interventions to address heavy drinking; however, few studies have evaluated MI interventions for couples living with HIV in sub-Saharan Africa. We aim to evaluate the feasibility and acceptability of a couple-based MI intervention with mobile breathalyser technology to reduce heavy alcohol use and improve HIV treatment outcomes among HIV-affected couples in South Africa. METHODS AND ANALYSIS: We will employ a three-arm randomised controlled trial to assess the efficacy of couple-based MI (MI-only arm) and in conjunction with mobile breathalysers (MI-plus arm) to address alcohol use and HIV outcomes, as compared with enhanced usual care (control arm). We will enrol heterosexual couples aged 18-49 in a primary relationship for at least 6 months who have at least one partner reporting hazardous alcohol use and on antiretroviral therapy for 6 months. Participants in both MI arms will attend three manualised counselling sessions and those in the MI-plus arm will receive real-time feedback on blood alcohol concentration levels using a mobile breathalyser. Couples randomised in the control arm will receive enhanced usual care based on the South African ART Clinical Guidelines. Feasibility and acceptability indicators will be analysed descriptively, and exploratory hypotheses will be examined through regression models considering time points and treatment arms. ETHICS AND DISSEMINATION: The study was approved by the University of California, San Francisco (HRPP; protocol number 21-35034) and Human Sciences Research Council Research Ethics Committee (REC: protocol number 1/27/20/21). We will disseminate the results at local community meetings, community-level health gatherings and conferences focused on HIV and alcohol use. TRIAL REGISTRATION NUMBER: NCT05756790.


Assuntos
Infecções por HIV , Entrevista Motivacional , Humanos , Entrevista Motivacional/métodos , África do Sul , Concentração Alcoólica no Sangue , Projetos Piloto , Infecções por HIV/tratamento farmacológico
4.
PLoS One ; 18(12): e0296473, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38153924

RESUMO

Cardiometabolic disorders (CMD) such as hypertension and diabetes are increasingly prevalent in sub-Saharan Africa, placing people living with HIV at risk for cardiovascular disease and threatening the success of HIV care. Spouses are often the primary caregivers for people living with CMD, and understanding patients' and partners' conceptions of CMD could inform care. We conducted semi-structured interviews with 25 couples having a partner living with HIV and either hypertension or diabetes. Couples were recruited from HIV clinics in Malawi and were interviewed on beliefs around symptoms, causation, prevention, and treatment for CMD. Data were analyzed at the individual and dyadic levels using framework analysis and Kleinman's theory of explanatory models as a lens. On average, participants were 51 years old and married for 21 years. Approximately 57%, 14%, and 80% had hypertension, diabetes, and HIV. Couples endorsed a combination of biomedical explanatory models (beliefs around physical and mental health) and traditional explanatory models (beliefs around religion and natural remedies), although tended to emphasize the biomedical model. Half of couples believed stress was the main cause of hypertension. For diabetes, diet was believed to be a common cause. In terms of prevention, dietary changes and physical activity were most frequently mentioned. For disease management, medication adherence and diet modifications were emphasized, with some couples also supporting herbal remedies, stress reduction, and faith in God as strategies. Participants were generally more concerned about CMD than HIV due to poor access to CMD medications and beliefs that CMD could lead to sudden death. Within couples, partners often held many of the same beliefs but diverged around which etiological or preventive factors were most important (e.g., stress versus diet) and the best diet for CMD. Health education programs should involve primary partners to build knowledge of CMD and address overlap with HIV, and reinforce accurate information on lifestyle factors for the prevention and treatment of CMD.


Assuntos
Doenças Cardiovasculares , Diabetes Mellitus , Infecções por HIV , Hipertensão , Humanos , Pessoa de Meia-Idade , Infecções por HIV/tratamento farmacológico , Malaui/epidemiologia , Hipertensão/epidemiologia
5.
Soc Sci Med ; 271: 112037, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-30448267

RESUMO

Decision aids commonly include values clarification exercises to help people consider which aspects of a choice matter most to them, and to help them make decisions that are congruent with their personal values and preferences. Using a randomized online experiment, we examined the influence of values clarification on parental beliefs and intentions about having genomic sequencing for newborns. We recruited 1186 women and men ages 18-44 who were pregnant or whose partner was pregnant or planning to become pregnant in the next two years. Participants (N = 1000) completed one of two versions of an online decision aid developed as part of a larger project examining the technical, clinical, and social aspects of using exome sequencing to screen newborns for rare genetic conditions. The education-only version provided information about using genomic sequencing to screen newborns for medically treatable conditions. The education-plus-values-clarification version included the same information, along with a values clarification exercise in which participants classified as important or unimportant five reasons in support of having and five reasons against having their newborn undergo genomic sequencing. We conducted partial correlations, regression analysis, and MANCOVAs with sex, health literacy, and experience with genetic testing as covariates. Participants who completed the decision aid with the values clarification exercise agreed less strongly with four of the five statements against sequencing compared to participants who viewed the education-only decision aid. The groups did not differ on agreement with reasons in support of sequencing. Agreement with four of five reasons against genomic sequencing was negatively associated with intentions to have their newborn sequenced, whereas agreement with all five reasons in support of sequencing were positively associated with intentions.


Assuntos
Técnicas de Apoio para a Decisão , Intenção , Adolescente , Adulto , Tomada de Decisões , Feminino , Genômica , Humanos , Recém-Nascido , Masculino , Pais , Adulto Jovem
6.
JAAPA ; 34(1): 32-38, 2021 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-33332832

RESUMO

OBJECTIVE: This is the final article in a series that examines the role of onboarding programs for new physician assistants (PAs) and NPs. On-the-job learning is highly relevant for this workforce. Here we examine the strategies organizations use to impart information and skills in onboarding programs. METHODS: In 2018, we interviewed 13 administrators of onboarding programs. Interviews were transcribed and analyzed for themes by a team of researchers, with feedback from interviewees. RESULTS: Seven strategies were identified and are described in this article: Clinical mentoring, personal and professional mentoring, meeting with/shadowing other professionals, checking in by administrators, delivering didactic content, tailoring content or ramp-up, and assessing/ensuring competency. CONCLUSIONS: This article describes commonly used strategies in onboarding programs for PAs and NPs and can provide guidance to those designing their own onboarding programs. The programs we examined relied heavily on mentoring and other strategies appropriate for adult learners. Future work should evaluate the effectiveness of onboarding programs.


Assuntos
Capacitação em Serviço/métodos , Tutoria/métodos , Profissionais de Enfermagem/educação , Assistentes Médicos/educação , Atenção Primária à Saúde , Competência Clínica , Humanos , Profissionais de Enfermagem/psicologia , Assistentes Médicos/psicologia , Avaliação de Programas e Projetos de Saúde , Qualidade da Assistência à Saúde , Recursos Humanos
7.
Am J Hum Genet ; 107(4): 596-611, 2020 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-32853555

RESUMO

Newborn screening (NBS) was established as a public health program in the 1960s and is crucial for facilitating detection of certain medical conditions in which early intervention can prevent serious, life-threatening health problems. Genomic sequencing can potentially expand the screening for rare hereditary disorders, but many questions surround its possible use for this purpose. We examined the use of exome sequencing (ES) for NBS in the North Carolina Newborn Exome Sequencing for Universal Screening (NC NEXUS) project, comparing the yield from ES used in a screening versus a diagnostic context. We enrolled healthy newborns and children with metabolic diseases or hearing loss (106 participants total). ES confirmed the participant's underlying diagnosis in 15 out of 17 (88%) children with metabolic disorders and in 5 out of 28 (∼18%) children with hearing loss. We discovered actionable findings in four participants that would not have been detected by standard NBS. A subset of parents was eligible to receive additional information for their child about childhood-onset conditions with low or no clinical actionability, clinically actionable adult-onset conditions, and carrier status for autosomal-recessive conditions. We found pathogenic variants associated with hereditary breast and/or ovarian cancer in two children, a likely pathogenic variant in the gene associated with Lowe syndrome in one child, and an average of 1.8 reportable variants per child for carrier results. These results highlight the benefits and limitations of using genomic sequencing for NBS and the challenges of using such technology in future precision medicine approaches.


Assuntos
Neoplasias da Mama/diagnóstico , Testes Genéticos/estatística & dados numéricos , Perda Auditiva/diagnóstico , Doenças Metabólicas/diagnóstico , Síndrome Oculocerebrorrenal/diagnóstico , Neoplasias Ovarianas/diagnóstico , Neoplasias da Mama/genética , Pré-Escolar , Feminino , Genoma Humano , Perda Auditiva/genética , Heterozigoto , Humanos , Lactente , Recém-Nascido , Masculino , Doenças Metabólicas/genética , Triagem Neonatal , North Carolina , Síndrome Oculocerebrorrenal/genética , Neoplasias Ovarianas/genética , Saúde Pública/métodos , Sequenciamento do Exoma
8.
JAAPA ; 33(9): 38-42, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32841977

RESUMO

OBJECTIVE: Healthcare organizations are interested in creating onboarding programs to assist new PA and NP employees as they transition to practice settings. There is a need for information on what the ideal content and topic areas are for clinics to include in their onboarding programs. METHODS: In 2018, we interviewed 13 administrators of onboarding programs. Interviews were transcribed and analyzed for themes by a team of researchers, with feedback from interviewees. RESULTS: Eight content areas were identified and described in this paper: culture and values; goals and strategies; task proficiency; rules and policies; structure; working relationships; wellness; and navigation and politics. CONCLUSIONS: These common content areas may provide a starting point for organizations designing onboarding programs for their unique organizations.


Assuntos
Educação Continuada/métodos , Tutoria/métodos , Profissionais de Enfermagem/educação , Assistência ao Paciente , Assistentes Médicos/educação , Avaliação de Programas e Projetos de Saúde , Local de Trabalho , Competência Clínica , Feminino , Humanos , Masculino , Recursos Humanos
9.
JAAPA ; 33(7): 38-43, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32590532

RESUMO

OBJECTIVES: The objective of this project was to evaluate demand for PAs by examination of job postings. We compared proportions of PAs in primary care with proportions of job postings in primary care in 2014 and 2016 and described job postings for PAs by specialty in 2014 and 2016. METHODS: Internet job postings for PAs supplied by Burning Glass Technologies were evaluated for practice specialty. Job postings were compared with existing filled positions by specialty as reported by the National Commission for the Certification of Physician Assistants. RESULTS: In both years, more than 25% of PAs in practice were in primary care and fewer than 20% of job openings were in primary care. More than half of postings were in medical and surgical subspecialties. CONCLUSIONS: Our findings provide insights into which specialties have emerging high demand for PAs. The demand for PAs appears to remain much stronger for specialty jobs than for primary care jobs.


Assuntos
Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Assistentes Médicos/provisão & distribuição , Assistentes Médicos/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Especialização/estatística & dados numéricos , Humanos , Fatores de Tempo , Estados Unidos
10.
Eur J Hum Genet ; 28(10): 1394-1402, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32457518

RESUMO

To realize the promise of population genomic screening for rare medically actionable conditions, critical challenges in the return of normal/negative results must be understood and overcome. Our study objective was to assess the functioning of a new 13-item measure (CoG-NR) of understanding of and knowledge about normal/negative genomic screening results for three highly actionable conditions: Lynch Syndrome, Hereditary Breast and Ovarian Cancer, and Familial Hypercholesterolemia. Based on our prior research and expert review, we developed CoG-NR and tested how well it functioned using hypothetical scenarios in three Qualtrics surveys. We report on its psychometric properties and performance across the three different conditions. The measure performed similarly for the three conditions. Examinations of item difficulty, internal reliability, and differential item functioning indicate that the items perform well, with statistically significant positive correlations with genomic knowledge, health literacy, and objective numeracy. CoG-NR assesses understanding of normal/negative results for each of the conditions. The next step is to examine its performance among individuals who have actually undergone such tests, and subsequent use in clinical or research situations. The CoG-NR measure holds great promise as a tool to enhance benefits of population genomic screening by bringing to light the prevalence of incorrect interpretation of negative results.


Assuntos
Compreensão , Testes Genéticos , Letramento em Saúde , Neoplasias/psicologia , Inquéritos e Questionários/normas , Adolescente , Adulto , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/genética , Reprodutibilidade dos Testes
11.
JAAPA ; 33(3): 40-46, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32097215

RESUMO

OBJECTIVE: To describe administrative factors that should be considered when designing an onboarding program for physician assistants (PAs) and NPs. METHODS: Interview study of 13 administrators of onboarding programs. Interviews were transcribed and analyzed for themes by a team of researchers, with feedback from interviewees. RESULTS: Five administrative themes are summarized: goals of onboarding, critical organization factors, organizational fit, designing the program, and costs of onboarding. CONCLUSIONS: Careful planning and administration are essential to the success of onboarding programs. Although onboarding programs must be designed with unique institutional needs in mind, the considerations identified by our project might serve as a useful guide to PA and NP employers in the process of creating an onboarding program.


Assuntos
Educação Continuada/métodos , Educação , Tutoria/métodos , Profissionais de Enfermagem/educação , Assistentes Médicos/educação , Avaliação de Programas e Projetos de Saúde , Feminino , Humanos , Masculino , Recursos Humanos
12.
Health Psychol ; 39(4): 335-344, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31886693

RESUMO

OBJECTIVE: Using an online decision aid developed to support parental decision making about newborn genomic sequencing, we tested whether adding a values clarification exercise to educational content would improve decision making outcomes and influence intention to pursue genomic sequencing. We also examined whether the effect of values clarification varied depending on one's health literacy level. METHOD: In an online experiment, women and men aged 18 to 44 who were either pregnant or had a pregnant partner, were currently trying to get pregnant, or were preparing for a pregnancy within the next 2 years were randomly assigned to complete either a decision aid with educational information about newborn genomic sequencing or a decision aid with the same educational information and a values clarification exercise. RESULTS: Of the 1,000 participants who completed the decision aid, those who completed the values clarification exercise reported less decision regret, F(1, 995) = 6.19, p = .01, and were clearer about their personal values, F(1, 995) = 6.39, p = .01. Moderation analyses revealed that the benefit of values clarification on decisional conflict was particularly evident among participants with lower health literacy, B = -3.94, SE = 1.67, t = -2.36, p = .018. There was not a significant moderation effect of health literacy and decision aid condition on decision regret. CONCLUSIONS: Adding a values clarification exercise to decision aids for parents making decisions about genomic sequencing may improve the decision-making experience and provide some benefit to individuals with lower health literacy. (PsycINFO Database Record (c) 2020 APA, all rights reserved).


Assuntos
Tomada de Decisões/fisiologia , Genômica/métodos , Adulto , Feminino , Humanos , Recém-Nascido , Masculino , Pais
13.
Genet Med ; 21(2): 409-416, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-29875426

RESUMO

PURPOSE: In genomics, the return of negative screening results for rare, medically actionable conditions in large unselected populations with low prior risk of disease is novel and may involve important and nuanced concerns for communicating their meaning. Recruitment may result in self-selection because of participants' personal or family history, changing the characteristics of the screened population and interpretation of both positive and negative findings; prior motivations may also affect responses to results. METHODS: Using data from GeneScreen, an exploratory adult screening project that targets 17 genes related to 11 medically actionable conditions, we address four questions: (1) Do participants self-select based on actual or perceived risk for one of the conditions? (2) Do participants understand negative results? (3) What are their psychosocial responses? (4) Are negative results related to changes in reported health-related behaviors? RESULTS: We found disproportionate enrollment of individuals at elevated prior risk for conditions being screened, and a need to improve communication about the nature of screening and meaning of negative screening results. Participants expressed no decision regret and did not report intention to change health-related behaviors. CONCLUSION: This study illuminates critical challenges to overcome if genomic screening is to benefit the general population.


Assuntos
Testes Genéticos , Resultados Negativos , Relações Médico-Paciente , Adolescente , Adulto , Revelação , Feminino , Humanos , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Doenças Raras/diagnóstico , Doenças Raras/genética , Doenças Raras/psicologia , Adulto Jovem
14.
Trials ; 19(1): 344, 2018 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-29950170

RESUMO

BACKGROUND: Using next-generation sequencing (NGS) in newborn screening (NBS) could expand the number of genetic conditions detected pre-symptomatically, simultaneously challenging current precedents, raising ethical concerns, and extending the role of parental decision-making in NBS. The NC NEXUS (Newborn Exome Sequencing for Universal Screening) study seeks to assess the technical possibilities and limitations of NGS-NBS, devise and evaluate a framework to convey various types of genetic information, and develop best practices for incorporating NGS-NBS into clinical care. The study is enrolling both a healthy cohort and a cohort diagnosed with known disorders identified through recent routine NBS. It uses a novel age-based metric to categorize a priori the large amount of data generated by NGS-NBS and interactive online decision aids to guide parental decision-making. Primary outcomes include: (1) assessment of NGS-NBS sensitivity, (2) decision regret, and (3) parental decision-making about NGS-NBS, and, for parents randomized to have the option of requesting them, additional findings (diagnosed and healthy cohorts). Secondary outcomes assess parents' reactions to the study and to decision-making. METHODS/DESIGN: Participants are parents and children in a well-child cohort recruited from a prenatal clinic and a diagnosed cohort recruited from pediatric clinics that treat children with disorders diagnosed through traditional NBS (goal of 200 children in each cohort). In phase 1, all parent participants use an online decision aid to decide whether to accept NGS-NBS for their child and provide consent for NGS-NBS. In phase 2, parents who consent to NGS-NBS are randomized to a decision arm or control arm (2:1 allocation) and learn their child's NGS-NBS results, which include conditions from standard (non-NGS) NBS plus other highly actionable childhood-onset conditions. Parents in the decision arm use a second decision aid to make decisions about additional results from their child's sequencing. In phase 3, decision arm participants learn additional results they have requested. Online questionnaires are administered at up to five time points. DISCUSSION: NC NEXUS will use a rigorous interdisciplinary approach designed to collect rich data to inform policy, practice, and future research. TRIAL REGISTRATION: clinicaltrials.gov, NCT02826694 . Registered on 11 July, 2016.


Assuntos
Comportamento de Escolha , Técnicas de Apoio para a Decisão , Sequenciamento do Exoma , Doenças Genéticas Inatas/diagnóstico , Testes Genéticos/métodos , Sequenciamento de Nucleotídeos em Larga Escala , Consentimento Livre e Esclarecido , Triagem Neonatal/métodos , Pais/psicologia , Pré-Escolar , Feminino , Doenças Genéticas Inatas/genética , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Lactente , Recém-Nascido , Masculino , North Carolina , Valor Preditivo dos Testes , Ensaios Clínicos Controlados Aleatórios como Assunto , Reprodutibilidade dos Testes
15.
Public Health Genomics ; 20(4): 235-246, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29069655

RESUMO

BACKGROUND: Online study recruitment is increasingly popular, but we know little about the decision making that goes into joining studies in this manner. In GeneScreen, a genomic screening study that utilized online education and consent, we investigated participants' perceived ease when deciding to join and their understanding of key study features. METHODS: Individuals were recruited via mailings that directed them to a website where they could learn more about GeneScreen, consent to participate, and complete a survey. RESULTS: Participants found it easy to decide to join GeneScreen and had a good understanding of study features. Multiple regression analyses revealed that ease of deciding to join was related to confidence in one's genetic self-efficacy, limited concerns about genetic screening, trust in and lack of frustration using the website, and the ability to spend a limited time on the website. Understanding of study features was related to using the Internet more frequently and attaining more information about GeneScreen conditions. CONCLUSIONS: The ease of deciding to join a genomic screening study and comprehension of its key features should be treated as different phenomena in research and practice. There is a need for a more nuanced understanding of how individuals respond to web-based consent information.


Assuntos
Tomada de Decisões , Educação a Distância , Testes Genéticos , Consentimento Livre e Esclarecido/psicologia , Internet , Inquéritos e Questionários , Adolescente , Adulto , Compreensão , Feminino , Genômica , Humanos , Masculino , Pessoa de Meia-Idade , Confiança , Adulto Jovem
16.
Cancer Causes Control ; 18(4): 423-30, 2007 May.
Artigo em Inglês | MEDLINE | ID: mdl-17297556

RESUMO

OBJECTIVE: To characterize the smoking-related services available to childhood cancer survivors and describe organizational characteristics that were related to institutions' capacity to provide smoking services. METHODS: Institutions affiliated with the Children's Oncology Group were surveyed from 2003 to 2004. RESULTS: Of the 132 responding institutions, 85% assessed the smoking status of their cancer survivors intermittingly, but only 3% assessed smoking status at every visit, as recommended by the PHS guidelines. A minority of sites offered either smoking prevention (39%) or cessation (25%) services; 58% of sites had a mechanism in place to refer survivors for cessation services. In multivariate analyses, the most parsimonious model predicting capacity for smoking service delivery included barriers, respondents' attitudes, complexity, and institutional stability. CONCLUSIONS: These data highlight an important need to improve the availability of smoking services for childhood cancer survivors. Additionally, these findings will inform the development of future interventions that are sensitive to barriers and facilitators to providing prevention services.


Assuntos
Neoplasias/prevenção & controle , Serviços Preventivos de Saúde/normas , Medicina Preventiva/normas , Abandono do Hábito de Fumar/estatística & dados numéricos , Prevenção do Hábito de Fumar , Sobreviventes , Adolescente , Atitude do Pessoal de Saúde , Institutos de Câncer , Criança , Continuidade da Assistência ao Paciente/organização & administração , Feminino , Prática de Grupo , Acessibilidade aos Serviços de Saúde , Hospitais Gerais , Hospitais Pediátricos , Humanos , Masculino , Massachusetts , Fumar/efeitos adversos , Estados Unidos
17.
Prev Med ; 42(6): 435-42, 2006 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-16626797

RESUMO

OBJECTIVE: We report on the process evaluation of an efficacious national smoking cessation intervention for adult survivors of childhood cancer. We examine associations between intervention implementation characteristics and study outcomes, as well as participant characteristics related to level of involvement in the intervention. METHODS: The study was conducted at the Dana-Farber Cancer Institute in Boston, Massachusetts, from 1999-2001. Participants (n = 398) were randomly assigned to receive a proactive telephone-based peer counseling intervention. They received up to 6 counseling calls, individually tailored and survivor-targeted materials, and nicotine replacement therapy (NRT) patches if they were prepared to quit smoking. RESULTS: Forty-two percent of survivors participated in the maximum number of calls (5-6), and 29% of participants requested and received NRT. Total counseling time was an average of 51 min. Quit status at follow-up was related to intervention dose, and participants who received NRT were significantly more likely to make a 24-h quit attempt. Demographic variables (females, White), higher daily smoking rate, poorer perceived health and moderate perceived risk of smoking were significantly related to greater intervention involvement. CONCLUSIONS: A brief peer-delivered, telephone counseling intervention is an effective way to intervene with adult survivors of childhood cancer who are smoking. Findings from the process evaluation data (call length and number, frequency, and spacing) will inform future telephone counseling cessation programs.


Assuntos
Aconselhamento , Neoplasias/psicologia , Abandono do Hábito de Fumar/métodos , Sobreviventes/psicologia , Telefone , Adulto , Demografia , Feminino , Humanos , Análise dos Mínimos Quadrados , Masculino , Nicotina/uso terapêutico , Agonistas Nicotínicos/uso terapêutico , Avaliação de Processos e Resultados em Cuidados de Saúde , Grupo Associado , Avaliação de Programas e Projetos de Saúde , Prevenção do Hábito de Fumar
18.
Soc Sci Med ; 62(6): 1369-80, 2006 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-16146666

RESUMO

Marriage is a ubiquitous social status that consistently is linked to health. Despite this, there has been very little theory development or related research on the extent to which couple members are jointly motivated to and actively engage in health-enhancing behaviors. In this paper we propose an integrative model, based on interdependence theory and communal coping perspectives, that explicitly considers dyadic processes as determinants of couple behavior. Our integrated model applies these constructs to consider how couple dynamics might influence adoption of risk-reducing health habits. Accordingly, we suggest that the couple's interdependence can transform motivation from doing what is in the best interest of the self (person-centered), to doing even selfless actions that are best for the continuation of the relationship (relationship-centered). In turn, this transformation can lead to enhanced motivation for the couple to cope communally or act cooperatively in adopting health-enhancing behavior change. Implications for research related to couples and health behavior change are also highlighted.


Assuntos
Adaptação Psicológica , Comportamentos Relacionados com a Saúde , Casamento/psicologia , Modelos Psicológicos , Cônjuges/psicologia , Comunicação , Feminino , Identidade de Gênero , Humanos , Masculino , Motivação , Comportamento de Redução do Risco
19.
J Clin Oncol ; 23(27): 6516-23, 2005 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-16116148

RESUMO

PURPOSE: Cancer survivors smoke at rates that are only slightly lower than the general population. This article reports on the final outcomes of Partnership for Health, a smoking cessation intervention for smokers in the Childhood Cancer Survivors Study (CCSS). METHODS: This study is a randomized control trial with follow-up at 8 and 12 months that involved smokers (n = 796) enrolled onto the CCSS cohort. Participants were randomly assigned to either a self-help or a peer-counseling program that included up to six telephone calls from a trained childhood cancer survivor, tailored and targeted materials, and free nicotine replacement therapy. The intervention was delivered by telephone and postal service mail. RESULTS: The quit rate was significantly higher in the counseling group compared with the self-help group at both the 8-month (16.8% v 8.5%; P < .01) and 12-month follow-ups (15% v 9%; P < or = .01). Controlling for baseline self-efficacy and readiness to change, the intervention group was twice as likely to quit smoking, compared with the self-help group. Smoking cessation rate increased with an increase in the number of counseling calls. The cost of delivering the intervention was approximately 300 dollars per participant. The incremental cost-effectiveness of the intervention compared with controls was 5,371 dollars per additional quit. CONCLUSION: Interventions to prevent future illnesses are of critical importance to childhood cancer survivors. The Partnership for Health intervention resulted in a doubling of smoking cessation quit rates. Because of the seriousness of smoking among childhood cancer survivors, this intervention model may be appropriate as a multicomponent treatment program for survivors who smoke.


Assuntos
Aconselhamento , Nicotina/antagonistas & inibidores , Abandono do Hábito de Fumar/estatística & dados numéricos , Prevenção do Hábito de Fumar , Fumar/epidemiologia , Adolescente , Adulto , Distribuição por Idade , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Masculino , Neoplasias/diagnóstico , Neoplasias/mortalidade , Neoplasias/terapia , Educação de Pacientes como Assunto/métodos , Valor Preditivo dos Testes , Prevalência , Probabilidade , Valores de Referência , Fatores de Risco , Grupos de Autoajuda , Distribuição por Sexo , Abandono do Hábito de Fumar/métodos , Sobreviventes , Estados Unidos
20.
Health Educ Behav ; 32(2): 151-71, 2005 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-15856614

RESUMO

This study examined the association between different types of integration in the gay community and HIV risk among gay male couples. Previous research linking gay community integration and involvement among couples to HIV risk has been equivocal. Each partner in 59 gay couples completed a separate anonymous questionnaire that assessed two types of social involvement in the gay community, assimilation into the gay community, and sexual HIV risk behaviors. We used the actor-partner interdependence analysis approach, which maintains the couple as the unit of analysis while allowing for tests of within-couple, between-couple, actor, and partner effects. Analyses revealed that, controlling for symptoms of alcohol problems, going to gay bars and clubs independently predicted more HIV risk.


Assuntos
Aculturação , Homossexualidade Masculina/psicologia , Assunção de Riscos , Parceiros Sexuais/psicologia , Comportamento Social , Sexo sem Proteção/psicologia , Adulto , Consumo de Bebidas Alcoólicas/psicologia , Estudos Transversais , Análise Fatorial , Características da Família , Infecções por HIV/diagnóstico , Infecções por HIV/epidemiologia , Infecções por HIV/psicologia , Homossexualidade Masculina/estatística & dados numéricos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Modelos Psicológicos , Análise de Regressão , Fatores de Risco , Identificação Social , Apoio Social , Inquéritos e Questionários , Estados Unidos , Sexo sem Proteção/estatística & dados numéricos , População Urbana
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