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1.
J Behav Med ; 44(3): 310-319, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33528744

RESUMEN

Our study examined how misinformation and other elements of social media messages affect antecedents to human papillomavirus (HPV) vaccination of adolescents. In 2017-2018, we randomly assigned a national sample of 1206 U.S. parents of adolescents to view one tweet using a 2 × 2 × 2 × 2 between-subjects factorial experiment. The 16 experimental tweets varied four messaging elements: misinformation (misinformation or not), source (person or organization), narrative style (storytelling or scientific data), and topic (effectiveness or safety). Parents reported their motivation to vaccinate (primary outcome), trust in social media content, and perceived risk about HPV-related diseases. Tweets without misinformation elicited higher HPV vaccine motivation than tweets with misinformation (25% vs. 5%, OR = 6.60, 95% CI:4.05, 10.75). Motivation was higher for tweets from organizations versus persons (20% vs. 10%, OR = 2.47, 95% CI:1.52, 4.03) and about effectiveness versus safety (20% vs. 10%, OR = 2.03, 95% CI:1.24, 3.30). Tweets with misinformation produced lower trust and higher perceived risk (both p < .01), with impact varying depending on source and topic. In conclusion, misinformation was the most potent social media messaging element. It may undermine progress in HPV vaccination.


Asunto(s)
Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Medios de Comunicación Sociales , Adolescente , Comunicación , Humanos , Infecciones por Papillomavirus/prevención & control , Vacunación
2.
Prev Med ; 118: 251-256, 2019 01.
Artículo en Inglés | MEDLINE | ID: mdl-30414396

RESUMEN

How stories from media and social interactions shape parents' HPV vaccination decisions is poorly understood. We sought to characterize parents' exposure to such stories, as well as associations between story exposure and vaccination behavior. Study participants were 1263 parents of U.S. adolescents who had not yet completed the HPV vaccine series. In 2017, these parents completed an online survey about whether they had heard stories of people who were harmed by HPV vaccine or who got diseases HPV vaccine could have prevented. Almost half of parents had heard HPV vaccine stories, which were about vaccine harms only (19%), vaccine preventable diseases only (11%), or both (15%). Stories of harms more often came from social and traditional media; stories of preventable diseases more often came from conversations (all p < 0.01). Parents who heard only stories about harms were less likely than those who heard no stories to have initiated HPV vaccination (23% vs. 33%, aOR:0.48; 95% CI:0.33:0.69). They were more likely to have delayed (79% vs. 66%, aOR:2.00; 95% CI:1.09:3.71) or refused (72% vs. 24%, aOR:8.87; 95% CI:4.09:19.25) HPV vaccination. Exposure to both stories about harms and preventable diseases was similarly associated with initiation, delay and refusal. Exposure to only stories about preventable diseases was not associated with initiation, delay or refusal. In conclusion, stories of HPV vaccine harms may be associated more strongly with vaccination behavior than stories of HPV vaccine preventable diseases. Communication campaigns should consider strategies to elevate stories of preventable diseases in social and traditional media.


Asunto(s)
Comunicación en Salud/tendencias , Medios de Comunicación de Masas/estadística & datos numéricos , Infecciones por Papillomavirus/prevención & control , Vacunas contra Papillomavirus/administración & dosificación , Medios de Comunicación Sociales/estadística & datos numéricos , Adolescente , Femenino , Humanos , Masculino , Padres/psicología , Encuestas y Cuestionarios , Vacunación/estadística & datos numéricos , Negativa a la Vacunación/estadística & datos numéricos
3.
AIDS Behav ; 23(4): 883-892, 2019 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-30661215

RESUMEN

Annual HIV testing is recommended for individuals at high risk of infection, specifically incarcerated populations. Incarcerated men carry a higher lifetime risk of acquiring HIV than the general population, yet little is known about their HIV testing behaviors. We collected Audio Computer Assisted Self Interview data for 819 men entering a state prison in North Carolina. We assessed correlates of previous HIV testing, including stigmatizing attitudes and beliefs, and explored two outcomes: (1) ever HIV tested before current incarceration, and (2) recency of last HIV test. Eighty percent had been HIV tested before; of those, 36% reported testing within the last year. Being African American, having education beyond high school, prior incarceration, and higher HIV knowledge increased odds of ever having tested. Results of this study highlight the need to expand HIV testing and education specific to incarcerated populations. Additionally, efforts should be made to monitor and encourage repeat screening.


Asunto(s)
Serodiagnóstico del SIDA/estadística & datos numéricos , Negro o Afroamericano/psicología , Infecciones por VIH/diagnóstico , Conocimientos, Actitudes y Práctica en Salud , Mal Uso de los Servicios de Salud/estadística & datos numéricos , Prisioneros/estadística & datos numéricos , Prisiones , Estereotipo , Serodiagnóstico del SIDA/métodos , Adolescente , Adulto , Estudios Transversales , Infecciones por VIH/epidemiología , Humanos , Masculino , Tamizaje Masivo , Persona de Mediana Edad , North Carolina/epidemiología , Asunción de Riesgos , Pruebas Serológicas , Adulto Joven
4.
Int J Behav Med ; 26(4): 391-400, 2019 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-31140146

RESUMEN

BACKGROUND: This study used the social support effectiveness framework to examine whether effective social support buffered the relationship between stressful life events and distress among hematopoietic stem cell transplant (HSCT) survivors and whether that buffering effect depended on the type of caregiver who provided it (partner versus non-partner caregivers). METHODS: A total of 275 HSCT survivors completed measures of the effectiveness of their caregiver's support-social support effectiveness (SSE)-distress, and stressful life events. Hierarchical linear regression was used to analyze a three-way interaction between stressful life events, caregiver SSE, and caregiver type on distress. RESULTS: After controlling for covariates, the three-way interaction of stressful life events, caregiver SSE, and caregiver type was significant (b = - 0.21, SE = 0.00, p < 0.001). Among partnered survivors, more stressful life events were associated with greater distress (B = 0.03, SE = 0.01, p = 0.045) when caregiver SSE was low. There was no association between stressful life events and distress when caregiver SSE was average (B = 0.01, SE = 0.01, p = 0.50) or high (B = - 0.01, SE = 0.02, p = 0.61). Among non-partnered survivors, there was a positive association between stressful life events and distress regardless of caregiver SSE. CONCLUSIONS: Average or highly effective caregiver support buffered effects of stressful life events on distress among partnered survivors. There was no evidence that support at any level of effectiveness buffered stressful life events among non-partnered survivors. Findings highlight the importance of measuring social support effectiveness and source of support among HSCT survivors.


Asunto(s)
Cuidadores/psicología , Trasplante de Células Madre Hematopoyéticas/psicología , Apoyo Social , Estrés Psicológico/psicología , Sobrevivientes/psicología , Adulto , Femenino , Humanos , Modelos Lineales , Masculino , Persona de Mediana Edad , Periodo Posoperatorio , Estrés Psicológico/etiología
6.
Vaccine ; 40(2): 344-350, 2022 01 21.
Artículo en Inglés | MEDLINE | ID: mdl-34887133

RESUMEN

OBJECTIVE: Parents often decline HPV vaccination, but little is known about how healthcare providers should promote vaccination at a later visit for secondary acceptance. We examined the associations of two factors, providers' response to declination during the visit and follow-up after the visit, with secondary acceptance. METHODS: We conducted a cross-sectional survey of US parents whose 9- to 17-year-old child had not yet completed the HPV vaccination series. Parents who declined HPV vaccination during an initial discussion with a provider (n = 447) reported whether their provider engaged in any active response during the visit (e.g., giving information, trying to change their mind) or any follow-up after the visit (e.g., scheduling another visit). We conducted multivariable logistic regression to determine whether an active response or follow-up was associated with secondary acceptance of HPV vaccination. RESULTS: Only about one-third of parents reported an active response during the visit (35%) or follow-up after the visit (39%) following HPV vaccination declination. Parents had higher odds of secondary acceptance of HPV vaccine if they received any provider follow-up after the visit (43% vs. 20%, aOR:3.19; 95% CI:2.00:5.07). Receipt of an active provider response was not associated with secondary acceptance. More parents thought a provider should actively respond and follow-up (61% and 68% respectively), compared with those who received such a response (both p < .01). CONCLUSIONS: Providers' follow-up after the visit may be important for promoting secondary acceptance of HPV vaccination. Parents who decline HPV vaccination often prefer to receive an active response or follow-up from a provider.


Asunto(s)
Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Adolescente , Niño , Estudios Transversales , Estudios de Seguimiento , Conocimientos, Actitudes y Práctica en Salud , Humanos , Infecciones por Papillomavirus/prevención & control , Padres , Aceptación de la Atención de Salud , Vacunación
7.
Hum Vaccin Immunother ; 17(10): 3577-3586, 2021 10 03.
Artículo en Inglés | MEDLINE | ID: mdl-34152924

RESUMEN

Human papillomavirus (HPV) vaccination could prevent most of the ~34,000 HPV-attributable cancers diagnosed annually in the US, but uptake remains suboptimal. Healthcare systems are key partners in implementing HPV vaccination quality improvement (QI) programs. To inform future system-level HPV vaccine initiatives, we sought to understand HPV vaccine QI from the perspective of QI program leaders in healthcare systems. We conducted telephone interviews with a multi-state sample of 17 QI leaders in 15 systems. We analyzed data qualitatively via thematic analysis to describe QI leaders' perspectives on prioritizing and implementing HPV vaccine QI. All QI leaders endorsed HPV vaccination as beneficial, and some had already prioritized increasing uptake to improve adolescent health and meet payor reimbursement standards. Those not prioritizing HPV vaccination cited concerns including the relatively small size of adolescent patient populations, lack of buy-in among providers, and the need to focus on health services perceived as more profitable or urgent. When implementing HPV vaccine QI programs, QI leaders reported key barriers to be the lack of robust data systems and acceptable QI metrics, limited time, and pressures of a fee-for-service clinical environment. Facilitators included automation and standardization in QI efforts and passionate vaccine champions. Almost all QI leaders reported future plans to implement HPV vaccine QI projects. Findings suggest that many healthcare systems are motivated to improve HPV vaccination. However, resistance to guideline-consistent quality metrics, the narrow target of one vaccine in the adolescent patient population, payment structures, and constrained time of providers are key barriers to practice improvements.


Asunto(s)
Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Adolescente , Atención a la Salud , Conocimientos, Actitudes y Práctica en Salud , Humanos , Infecciones por Papillomavirus/prevención & control , Mejoramiento de la Calidad , Vacunación
8.
Am J Prev Med ; 61(1): 88-95, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33975768

RESUMEN

INTRODUCTION: The Announcement Approach using presumptive announcements increases human papillomavirus vaccine uptake. This study seeks to understand the impact of the final Announcement Approach steps-easing parents' vaccine concerns and then encouraging them to get human papillomavirus vaccine for their children-on parents' human papillomavirus vaccine hesitancy and confidence in the vaccine's benefits. METHODS: In 2017-2018, investigators recruited an online national sample of 1,196 U.S. parents of children aged 9-17 years who had not yet completed the human papillomavirus vaccine series. Following the steps of the Announcement Approach, participants viewed brief videos of a pediatrician announcing that a child was due for human papillomavirus vaccine (shown to all the parents). In the 2 × 2 experiment, parents saw (1) a video of the pediatrician attempting to ease a concern that the parent had raised earlier in the survey (Ease video), (2) a video of the pediatrician encouraging the parent to get their child vaccinated (Encourage video), (3) both videos, or (4) neither of the videos. Data analysis was conducted in spring 2020. RESULTS: Seeing the Ease video message led to lower human papillomavirus vaccine hesitancy than not seeing it (mean=2.71, SD=1.29 vs mean=2.97, SD=1.33; p<0.001). The beneficial impact of easing concerns on lower vaccine hesitancy was explained by higher confidence (p<0.05). By contrast, the Encourage video had no impact on human papillomavirus vaccine hesitancy or confidence. CONCLUSIONS: Addressing parents' concerns can decrease human papillomavirus vaccine hesitancy and increase confidence. On the basis of these findings, the Announcement Approach retained its emphasis on announcing that children are due for vaccination and easing parent concerns.


Asunto(s)
Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Niño , Comunicación , Conocimientos, Actitudes y Práctica en Salud , Humanos , Infecciones por Papillomavirus/prevención & control , Padres , Aceptación de la Atención de Salud , Vacunación
9.
Hum Vaccin Immunother ; 17(9): 3077-3080, 2021 09 02.
Artículo en Inglés | MEDLINE | ID: mdl-33961539

RESUMEN

HPV vaccination is recommended for U.S. adolescents at ages 11-12 and requires two versus three doses if the series is started before age 15. We evaluated how talking about recommended age or fewer doses motivates on-time HPV vaccination. Our national, online experiment randomized 1,263 parents of adolescents to view one of three messages about HPV vaccination recommendations or no message. Messages framed guidelines as recommending: vaccination at age 11-12; fewer doses for those who start vaccination at age 11-12; or, fewer doses for those who start vaccination before age 15. We then assessed parents' preferred age for HPV vaccination, categorizing preferences of ≤12 years as on-time. Parents who viewed "at age 11-12" versus no message more often preferred on-time HPV vaccination (63% vs. 43%, p < .05) and did not differ from those viewing "fewer doses at age 11-12" (63% vs. 64%, p > .05). Parents who viewed "fewer doses before age 15" less often preferred on-time HPV vaccination (39%, p < .05). Recommending HPV vaccination at age 11-12 encouraged on-time vaccination, while offering fewer doses had little impact. Providers should avoid framing HPV vaccination guidelines in reference to age 15 because doing so may discourage on-time vaccination by introducing confusion about the recommended age.


Asunto(s)
Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Adolescente , Niño , Conocimientos, Actitudes y Práctica en Salud , Humanos , Infecciones por Papillomavirus/prevención & control , Padres , Vacunación
10.
Cancer Epidemiol Biomarkers Prev ; 30(11): 1981-1992, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34426414

RESUMEN

Infrequent provider recommendations continue to be a key barrier to human papillomavirus (HPV) vaccination, including among adolescents at higher risk for future HPV cancers. To inform future interventions, we sought to characterize disparities in health care providers' HPV vaccine recommendation for U.S. adolescents. We systematically reviewed studies published in 2012-2019 that assessed provider HPV vaccine recommendations for adolescents aged 9-17. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we identified 52 eligible studies and used a standardized abstraction form to assess recommendation prevalence by adolescent demographic characteristics. Studies consistently found that fewer parents of boys than girls reported receiving HPV vaccine recommendations (14 studies, range of difference: -11 to -35 percentage points). Studies also found fewer recommendations for adolescents who were younger (2 studies, -3% to -12% points), non-White (3 studies, -5% to -7% points, females only), lower income (3 studies, -1% to -8% points), or uninsured (1 study, -21% points, males only). Studies identified geographic disparities in southern and rural areas. In conclusion, findings from this systematic review identify disparities in HPV vaccine recommendation that may contribute to suboptimal vaccine uptake. Efforts to improve providers' HPV vaccine communication should focus on increasing recommendation consistency, especially for lower-income, non-White, and rural adolescents.


Asunto(s)
Actitud del Personal de Salud , Infecciones por Papillomavirus/prevención & control , Vacunas contra Papillomavirus/inmunología , Pautas de la Práctica en Medicina/estadística & datos numéricos , Adolescente , Niño , Femenino , Disparidades en Atención de Salud/etnología , Humanos , Masculino , Infecciones por Papillomavirus/inmunología , Padres , Distribución por Sexo , Estados Unidos
11.
Pediatrics ; 144(1)2019 07.
Artículo en Inglés | MEDLINE | ID: mdl-31209158

RESUMEN

BACKGROUND: High-quality evidence indicates that intervening with health care providers improves human papillomavirus (HPV) vaccine delivery. However, scaling up evidence-based strategies in real-world clinical practice remains challenging. We sought to improve the reach and impact of strategies for HPV vaccination quality improvement (QI) through local adaptation and implementation in a large, not-for-profit health care system. METHODS: We conducted an HPV vaccination QI program using existing materials to support physician training coupled with assessment and feedback. Local physicians with high HPV vaccination rates facilitated training, which included didactic instruction and video vignettes modeling effective communication. We randomly assigned 25 clinics with 77 physicians to the QI arm or the wait-list control arm. We used hierarchical linear models to assess HPV vaccination coverage (≥1 dose) over 6 months among patients aged 12 to 14. RESULTS: Of 45 physicians in the QI arm, the program reached 43 (95%) with training plus assessment and feedback. In the overall sample, HPV vaccination coverage increased in both the QI and control arms (8.6 vs 6.4 percentage points, respectively), although the 2.2-percentage point difference did not reach statistical significance. Sensitivity analyses that excluded physicians with poor data quality indicated a statistically significant advantage of 3.3 percentage points for QI versus control (b = 0.034; SE = 0.015; P < .05). CONCLUSIONS: Our locally adapted QI program achieved excellent reach, with small improvements in HPV vaccination coverage. Future implementation research is needed to bolster program impact and support health systems in leveraging local resources to conduct these programs efficiently.


Asunto(s)
Servicios de Salud del Niño/organización & administración , Atención a la Salud/normas , Programas de Inmunización/organización & administración , Infecciones por Papillomavirus/prevención & control , Vacunas contra Papillomavirus , Adolescente , Niño , Servicios de Salud del Niño/normas , Práctica Clínica Basada en la Evidencia , Humanos , Programas de Inmunización/normas , Evaluación de Programas y Proyectos de Salud , Mejoramiento de la Calidad , Texas , Cobertura de Vacunación
12.
Pediatrics ; 143(2)2019 02.
Artículo en Inglés | MEDLINE | ID: mdl-30670584

RESUMEN

: media-1vid110.1542/5972295740001PEDS-VA_2018-1872Video Abstract OBJECTIVES: We sought to identify effective responses to parents' questions and concerns about human papillomavirus (HPV) vaccine. METHODS: In 2017-2018, we surveyed a national sample of 1196 US parents of children aged 9 to 17 years. We recorded brief videos of a pediatrician providing messages that addressed 7 HPV vaccination topics that commonly elicit questions or concerns (eg, recommended age). We randomly assigned parents to 1 of the message topics; parents then viewed 4 videos on that topic in random order and evaluated the messages. RESULTS: Parents were more confident in HPV vaccine when they were exposed to messages that addressed lack of knowledge about HPV vaccine (b = 0.13; P = .01), messages that included information about cancer prevention (b = 0.11; P < .001), messages that required a higher reading level (b = 0.02; P = .01), and messages that were longer (b = 0.03; P < .001). Parents were less confident in HPV vaccine when exposed to messages in which urgency was expressed (b = -0.06; P = .005). Analyses conducted by using HPV vaccine motivation as an outcome revealed the same pattern of findings. CONCLUSIONS: We provide research-tested messages that providers can use to address parents' HPV vaccination questions and concerns about 7 common topics. Important principles for increasing message effectiveness are to include information on the benefits of vaccination (including cancer prevention) and avoid expressing urgency to vaccinate when addressing parents' questions or concerns. Additionally, providers may need to be prepared to have longer conversations with parents who express concerns about HPV vaccine, especially regarding safety and side effects.


Asunto(s)
Comunicación , Conocimientos, Actitudes y Práctica en Salud , Vacunas contra Papillomavirus/uso terapéutico , Padres/psicología , Aceptación de la Atención de Salud/psicología , Adolescente , Niño , Femenino , Humanos , Masculino , Infecciones por Papillomavirus/epidemiología , Infecciones por Papillomavirus/prevención & control , Infecciones por Papillomavirus/psicología , Padres/educación , Encuestas y Cuestionarios
13.
JAMA Intern Med ; 178(10): 1311-1316, 2018 10 01.
Artículo en Inglés | MEDLINE | ID: mdl-30105393

RESUMEN

Importance: The US Preventive Services Task Force recommends that shared decision making (SDM) involving a thorough discussion of benefits and harms should occur between clinicians and patients before initiating lung cancer screening (LCS) with low-dose computed tomography. The Centers for Medicare & Medicaid Services require an SDM visit using a decision aid as a prerequisite for LCS coverage. However, little is known about how SDM about LCS occurs in practice. Objective: To assess the quality of SDM about the initiation of LCS in clinical practice. Design, Setting, and Participants: A qualitative content analysis was performed of transcribed conversations between primary care or pulmonary care physicians and 14 patients presumed to be eligible for LCS, recorded between April 1, 2014, and March 1, 2018, that were identified within a large database. Main Outcomes and Measures: Independent observer ratings of communication behaviors of physicians using the OPTION (Observing Patient Involvement in Decision Making) scale, a validated 12-item measure of SDM (total score, 0-100 points, where 0 indicates no evidence of SDM and 100 indicates evidence of SDM at the highest skill level); time spent discussing LCS during visits; and evidence of decision aid use. Results: A total of 14 conversations about initiating LCS were identified; 9 patients were women, and 5 patients were men; the mean (SD) patient age was 63.9 (5.1) years; 7 patients had Medicare, and 8 patients were current smokers. Half the conversations were conducted by primary care physicians. The mean total OPTION score for the 14 LCS conversations was 6 on a scale of 0 to 100 (range, 0-17). None of the conversations met the minimum skill criteria for 8 of the 12 SDM behaviors. Physicians universally recommended LCS. Discussion of harms (such as false positives and their sequelae or overdiagnosis) was virtually absent. The mean total visit length of a discussion was 13:07 minutes (range, 3:48-27:09 minutes). The mean time spent discussing LCS was 0:59 minute (range, 0:16-2:19 minutes), or 8% of the total visit time (range, 1%-18%). There was no evidence that decision aids or other patient education materials for LCS were used. Conclusions and Relevance: In this small sample of recorded encounters about initiating LCS, the observed quality of SDM was poor and explanation of potential harms of screening was virtually nonexistent. Time spent discussing LCS was minimal, and there was no evidence that decision aids were used. Although these findings are preliminary, they raise concerns that SDM for LCS in practice may be far from what is intended by guidelines.


Asunto(s)
Toma de Decisiones , Detección Precoz del Cáncer , Neoplasias Pulmonares/diagnóstico , Participación del Paciente , Anciano , Técnicas de Apoyo para la Decisión , Femenino , Humanos , Masculino , Medicare , Persona de Mediana Edad , Estados Unidos
14.
Am J Health Promot ; 29(4): 255-8, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-24575726

RESUMEN

PURPOSE: This article describes lessons from a Centers for Disease Control and Prevention initiative encompassing sodium reduction interventions in six communities. DESIGN: A multiple case study design was used. SETTING: This evaluation examined data from programs implemented in six communities located in New York (Broome County, Schenectady County, and New York City); California (Los Angeles County and Shasta County); and Kansas (Shawnee County). SUBJECTS: Participants (n = 80) included program staff, program directors, state-level staff, and partners. MEASURES: Measures for this evaluation included challenges, facilitators, and lessons learned from implementing sodium reduction strategies. ANALYSIS: The project team conducted a document review of program materials and semistructured interviews 12 to 14 months after implementation. The team coded and analyzed data deductively and inductively. RESULTS: Five lessons for implementing community-based sodium reduction approaches emerged: (1) build relationships with partners to understand their concerns, (2) involve individuals knowledgeable about specific venues early, (3) incorporate sodium reduction efforts and messaging into broader nutrition efforts, (4) design the program to reduce sodium gradually to take into account consumer preferences and taste transitions, and (5) identify ways to address the cost of lower-sodium products. CONCLUSION: The experiences of the six communities may assist practitioners in planning community-based sodium reduction interventions. Addressing sodium reduction using a community-based approach can foster meaningful change in dietary sodium consumption.


Asunto(s)
Redes Comunitarias , Promoción de la Salud/organización & administración , Sodio en la Dieta/administración & dosificación , Estudios de Evaluación como Asunto , Humanos , Entrevistas como Asunto , Evaluación de Programas y Proyectos de Salud , Estados Unidos
15.
Neurology ; 84(10): 1034-42, 2015 Mar 10.
Artículo en Inglés | MEDLINE | ID: mdl-25663223

RESUMEN

OBJECTIVES: The objectives of this study were to develop a conceptual model of quality of life (QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD population. METHODS: Our model for QOL among individuals with MD was developed based on a modified Delphi process, literature review, and input from patients and patient advocacy organizations. Scales that have been used to measure QOL among patients with MD were identified through a literature review and evaluated using the COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) checklist. RESULTS: The Comprehensive Model of QOL in MD (CMQM) captures 3 broad domains of QOL (physical, psychological, and social), includes factors influencing self-reported QOL (disease-related factors, support/resources, and expectations/aspirations), and places these concepts within the context of the life course. The literature review identified 15 QOL scales (9 adult and 6 pediatric) that have been applied to patients with MD. Very few studies reported reliability data, and none included data on responsiveness of the measures to change in disease progression, a necessary psychometric property for measures included in treatment and intervention studies. No scales captured all QOL domains identified in the CMQM model. CONCLUSIONS: Additional scale development research is needed to enhance assessment of QOL for individuals with MD. Item banking and computerized adaptive assessment would be particularly beneficial by allowing the scale to be tailored to each individual, thereby minimizing respondent burden.


Asunto(s)
Distrofias Musculares/psicología , Psicometría/instrumentación , Calidad de Vida/psicología , Encuestas y Cuestionarios/normas , Humanos
16.
Am J Health Educ ; 44(4): 177-190, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-28261370

RESUMEN

BACKGROUND: Women continue to drink alcohol during pregnancy despite Surgeon Generals' Advisory statements and educational efforts about the dangers. PURPOSE: This focus group research study examined women's knowledge and beliefs about alcohol consumption and its risks during pregnancy along with related perceptions of social influences and information sources in order to inform future messaging. METHODS: The study included 20 focus groups of 149 reproductive-age women segmented by age, pregnancy status, and race/ethnicity. RESULTS AND DISCUSSION: Women acknowledged the risks and consequences of drinking alcohol during pregnancy, but many held common misconceptions. Some women continued to drink during pregnancy or expressed intent to continue drinking until pregnancy confirmation. Findings indicated that women's partners, families, and friends influence women's decisions to drink or abstain from alcohol. In addition, health care providers and the Internet act as important sources of health information for women but sometimes do not adequately educate them about the risks of alcohol use and pregnancy. TRANSLATION TO HEALTH EDUCATION PRACTICE: Considerations for messaging and educational materials related to alcohol use and pregnancy include providing clear and consistent messaging (especially from health professionals), focusing on social support strategies, and utilizing electronic media. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

17.
Am J Health Promot ; 27(3 Suppl): S10-9, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23286658

RESUMEN

PURPOSE: To inform the development of a preconception health (PCH) social marketing plan, we conducted qualitative research with prospective consumers. APPROACH: We present formative findings based on the four Ps of social marketing: product, price, promotion, and place. SETTING: We conducted focus groups with 10 groups of women in Atlanta, Georgia, in fall 2010. PARTICIPANTS: We classified women aged 18 to 44 into five groups based on their pregnancy plans, and then further segmented the groups based on socioeconomic status for a total of 10 groups. METHOD: The focus group guide was designed to elicit participants' responses about the product, price, promotion, and placement of PCH. We used NVivo 9 software to analyze focus group data. RESULTS: Women planning a pregnancy in the future had different perspectives on PCH as a product than women not planning a pregnancy. Barriers to PCH included lack of social support, addiction, and lack of awareness about PCH. Participants preferred to think of PCH behaviors as "promoting" a healthy baby rather than preventing an unhealthy birth outcome. Many women in the focus groups preferred to hear PCH messages from a health care provider, among other channels. CONCLUSION: The results from this research will inform the development of a social marketing plan for PCH and the development of concepts that will be tested with consumers to determine their viability for use in a national campaign.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Atención Preconceptiva , Adolescente , Adulto , Femenino , Grupos Focales , Georgia , Promoción de la Salud , Humanos , Investigación Cualitativa , Conducta de Reducción del Riesgo , Mercadeo Social , Adulto Joven
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