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Using formative research to develop a counselor training program for newborn screening in Ghana.

ABSTRACT: Sickle cell disease (SCD), sickle cell trait (SCT) and related conditions are highly prevalent in sub-Saharan Africa. Despite the public health implications, there is limited understanding of the unique needs regarding establishing and implementing extensive screening for newborns and appropriate family counseling. We sought to gain understanding of community attitudes and beliefs about SCD/SCT from counselors and potential counselors in Ghana; obtain their input about goals for counseling following newborn screening; and obtain guidance about developing effective counselor education. Five focus groups with 32 health care providers and health educators from 9 of 10 regions in Ghana were conducted by trained facilitators according to a structured protocol. Qualitative data were coded and categorized to reflect common themes. Saturation was achieved in themes related to genetics/inheritance; common complications of SCD; potential for stigmatization; marital strain; and emotional stress. Misconceptions about SCT as a form of SCD were prevalent as were cultural and spiritual beliefs about the causes of SCD/SCT. Potential positive aspects included affected children's academic achievement as compensation for physical limitations, and family cohesion. This data informed recommendations for content and structure of a counselor training program that was provided to the Ministry of Health in Ghana.

SUBMITTER: Treadwell MJ

PROVIDER: S-EPMC4501216 | biostudies-literature | 2015 Apr

REPOSITORIES: biostudies-literature

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Using formative research to develop a counselor training program for newborn screening in Ghana.

Treadwell Marsha J MJ Anie Kofi A KA Grant Althea M AM Ofori-Acquah Solomon F SF Ohene-Frempong Kwaku K

Journal of genetic counseling 20140907 2

Sickle cell disease (SCD), sickle cell trait (SCT) and related conditions are highly prevalent in sub-Saharan Africa. Despite the public health implications, there is limited understanding of the unique needs regarding establishing and implementing extensive screening for newborns and appropriate family counseling. We sought to gain understanding of community attitudes and beliefs about SCD/SCT from counselors and potential counselors in Ghana; obtain their input about goals for counseling follo ...[more]

PMID: 25193810

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Project description:Low childhood physical activity levels are currently one of the most pressing public health concerns. Numerous school-based physical activity interventions have been conducted with varied success. Identifying effective child-based physical activity interventions are warranted. The purpose of this formative study was to elicit subjective views of children, their parents, and teachers about physical activity to inform the design of the CHANGE! (Children's Health, Activity, and Nutrition: Get Educated!) intervention programme.Semi-structured mixed-gender interviews (group and individual) were conducted in 11 primary schools, stratified by socioeconomic status, with 60 children aged 9-10 years (24 boys, 36 girls), 33 parents (4 male, 29 female) and 10 teachers (4 male, 6 female). Questions for interviews were structured around the PRECEDE stage of the PRECEDE-PROCEDE model and addressed knowledge, attitudes and beliefs towards physical activity, as well as views on barriers to participation. All data were transcribed verbatim. Pen profiles were constructed from the transcripts in a deductive manner using the Youth Physical Activity Promotion Model framework. The profiles represented analysis outcomes via a diagram of key emergent themes.Analyses revealed an understanding of the relationship between physical activity and health, although some children had limited understanding of what constitutes physical activity. Views elicited by children and parents were generally consistent. Fun, enjoyment and social support were important predictors of physical activity participation, though several barriers such as lack of parental support were identified across all group interviews. The perception of family invested time was positively linked to physical activity engagement.Families have a powerful and important role in promoting health-enhancing behaviours. Involvement of parents and the whole family is a strategy that could be significant to increase children's physical activity levels. Addressing various perceived barriers to such behaviours therefore, remains imperative.ISRCTN: ISRCTN03863885.

Project description:Background:The Mississippi Community Research Fellows Training Program (MSCRFTP) is a 15-week program conducted in Jackson, MS, USA consisting of training in the areas of evidence-based public health, research methods, research ethics, and cultural competency. The purpose of the program was to increase community knowledge and understanding of public health research, develop community-based projects that addressed health disparity in the participants' community, increase individual and community capacity, and to engage community members as equal partners in the research process. Methods:A comprehensive evaluation of the MSCRFTP was conducted that included both quantitative and qualitative methods. All participants were asked to complete a baseline, midterm, and final assessment as part of their program requirements. Knowledge gained was assessed by comparing baseline assessment responses to final assessment responses related to 27 key content areas addressed in the training sessions. Assessments also collected participants' attitudes toward participating in research within their communities, their perceived influence over community decisions, and their perceptions of community members' involvement in research, satisfaction with the program, and the program's impact on the participants' daily practice and community work. Results:Twenty-one participants, the majority of which were female and African-American, completed the MSCRFTP. Knowledge of concepts addressed in 15 weekly training sessions improved significantly on 85.2% of 27 key areas evaluated (p?<?0.05). Two mini-grant community based participatory research projects proposed by participants were funded through competitive application. Most participants agreed that by working together, the people in their community could influence decisions that affected the community. All participants rated their satisfaction with the overall program as "very high" (76.2%, n?=?16) or "high" (23.8%, n?=?5). Conclusion:The evaluation of the MSCRFTP demonstrates that participants have the necessary knowledge to engage as research partners, and the pilot projects provided an opportunity for application of this objective to be realized. Overall, the MSCRFTP was an intervention that assisted community members in identifying their communities' strengths and weaknesses, interpret knowledge in a meaningful way, and create a self-reflective community of inquiry for change.

Project description:BACKGROUND:Mobile messaging is often used in behavioral weight loss interventions, yet little is known as to the extent to which they contribute to weight loss when part of a multicomponent treatment package. The multiphase optimization strategy (MOST) is a framework that researchers can use to systematically investigate interventions that achieve desirable outcomes given specified constraints. OBJECTIVE:This study describes the use of MOST to develop a messaging intervention as a component to test as part of a weight loss treatment package in a subsequent optimization trial. METHODS:On the basis of our conceptual model, a text message intervention was created to support self-regulation of weight-related behaviors. We tested the messages in the ENLIGHTEN feasibility pilot study. Adults with overweight and obesity were recruited to participate in an 8-week weight loss program. Participants received a commercially available self-monitoring smartphone app, coaching calls, and text messages. The number and frequency of text messages sent were determined by individual preferences, and weight was assessed at 8 weeks. RESULTS:Participants (n=9) in the feasibility pilot study lost 3.2% of their initial body weight over the 8-week intervention and preferred to receive 1.8 texts per day for 4.3 days per week. Researcher burden in manually sending messages was high, and the cost of receiving text messages was a concern. Therefore, a fully automated push notification system was developed to facilitate sending tailored daily messages to participants to support weight loss. CONCLUSIONS:Following the completion of specifying the conceptual model and the feasibility pilot study, the message intervention went through a final iteration. Theory and feasibility pilot study results during the preparation phase informed critical decisions about automation, frequency, triggers, and content before inclusion as a treatment component in a factorial optimization trial. TRIAL REGISTRATION:ClinicalTrials.gov NCT01814072; https://clinicaltrials.gov/ct2/show/NCT01814072.

Project description:The increasing availability of novel therapies highlights the importance of screening newborns for rare genetic disorders so that they may benefit from early therapy, when it is most likely to be effective. Pilot newborn screening (NBS) studies are a way to gather objective evidence about the feasibility and utility of screening, the accuracy of screening assays, and the incidence of disease. They are also an optimal way to evaluate the complex ethical, legal and social implications (ELSI) that accompany NBS expansion for disorders. ScreenPlus is a consented pilot NBS program that aims to enroll over 100,000 infants across New York City. The initial ScreenPlus panel includes 14 disorders and uses an analyte-based, multi-tiered screening platform in an effort to enhance screening accuracy. Infants who receive an abnormal result are referred to a ScreenPlus provider for confirmatory testing, management, and therapy as needed, along with longitudinal capture of outcome data. Participation in ScreenPlus requires parental consent, which is obtained in active and passive manners. Patient-facing documents are translated into the ten most common languages spoken at our nine pilot hospitals, all of which serve diverse communities. At the time of consent, parents are invited to receive a series of online surveys to capture their opinions about specific ELSI-related topics, such as NBS policy, residual dried blood spot retention, and the types of disorders that should be on NBS panels. ScreenPlus has developed a stakeholder-based, collective funding model that includes federal support in addition to funding from 14 advocacy and industry sponsors, all of which have a particular interest in NBS for at least one of the ScreenPlus disorders. Taken together, ScreenPlus is a model, multi-sponsored pilot NBS program that will provide critical data about NBS for a broad panel of disorders, while gathering key stakeholder opinions to help guide ethically sensitive decision-making about NBS expansion.

Project description:BackgroundExtremism continues to raise concerns about conflict and violent attacks that can lead to deaths, injuries, trauma, and stress. Adolescents are especially vulnerable to radicalization by extremists. Given its location in a region that often experiences extremism, Bahrain developed 4 peaceful coexistence lessons and 4 antiextremism lessons to be implemented as part of their Drug Abuse Resistance Education (D.A.R.E.) program.ObjectiveThe aim of this study is to report the results of the preparation phase of the multiphase optimization strategy (MOST) to develop a peaceful coexistence program and an antiextremism program implemented by D.A.R.E. officers in Bahrain.MethodsWe developed conceptual models for the peaceful coexistence and antiextremism programs, indicating which mediators each lesson should target, the proximal outcomes that should be shaped by these mediators, and the distal and ultimate outcomes that the intervention should change. We recruited 20 middle schools to pilot test our research protocol, survey measures, and the existing intervention lessons. A total of 854 seventh and ninth grade students completed a pretest survey, 4 peaceful coexistence intervention lessons, and an immediate posttest survey; and a total of 495 ninth grade students completed the pretest survey, 4 antiextremism lessons, and an immediate posttest survey. A series of 3-level models, nesting students within classrooms within schools, tested mean differences from pretest to posttest.ResultsPilot test results indicated that most measures had adequate reliability and provided promising evidence that the existing lessons could change some of the targeted mediators and proximal outcomes. Specifically, students who completed the peaceful coexistence lessons reported significant changes in 5 targeted mediating variables (eg, injunctive norms about intolerance, P<.001) and 3 proximal outcomes [eg, social skills empathy (P=.008); tolerance beliefs (P=.041)]. Students who completed the antiextremism lessons reported significant changes in 3 targeted mediators [eg, self-efficacy to use resistance skills themselves (P<.001)], and 1 proximal outcome (ie, social skills empathy, P<.001).ConclusionsAn effective antiextremism program has the potential to protect youth from radicalization and increase peaceful coexistence. We used the preparation phase of MOST to (1) develop a conceptual model, (2) identify the 4 lessons in each program as the components we will evaluate in the optimization phase of MOST, (3) pilot test the existing lessons, our newly developed measures, and research protocol, and (4) determine that our optimization objective will be all effective components. We will use these results to revise the existing lessons and conduct optimization trials to evaluate the efficacy of the individual lessons.

Project description:BackgroundMany research studies fail to enroll enough research participants. Patient-facing electronic health record applications, known as patient portals, may be used to send research invitations to eligible patients.ObjectiveThe first aim was to determine if receipt of a patient portal research recruitment invitation was associated with enrollment in a large ongoing study of newborns (Early Check). The second aim was to determine if there were differences in opening the patient portal research recruitment invitation and study enrollment by race and ethnicity, age, or rural/urban home address.MethodsWe used a computable phenotype and queried the health care system's clinical data warehouse to identify women whose newborns would likely be eligible. Research recruitment invitations were sent through the women's patient portals. We conducted logistic regressions to test whether women enrolled their newborns after receipt of a patient portal invitation and whether there were differences by race and ethnicity, age, and rural/urban home address.ResultsResearch recruitment invitations were sent to 4510 women not yet enrolled through their patient portals between November 22, 2019, through March 5, 2020. Among women who received a patient portal invitation, 3.6% (161/4510) enrolled their newborns within 27 days. The odds of enrolling among women who opened the invitation was nearly 9 times the odds of enrolling among women who did not open their invitation (SE 3.24, OR 8.86, 95% CI 4.33-18.13; P<.001). On average, it took 3.92 days for women to enroll their newborn in the study, with 64% (97/161) enrolling their newborn within 1 day of opening the invitation. There were disparities by race and urbanicity in enrollment in the study after receipt of a patient portal research invitation but not by age. Black women were less likely to enroll their newborns than White women (SE 0.09, OR 0.29, 95% CI 0.16-0.55; P<.001), and women in urban zip codes were more likely to enroll their newborns than women in rural zip codes (SE 0.97, OR 3.03, 95% CI 1.62-5.67; P=.001). Black women (SE 0.05, OR 0.67, 95% CI 0.57-0.78; P<.001) and Hispanic women (SE 0.07, OR 0.73, 95% CI 0.60-0.89; P=.002) were less likely to open the research invitation compared to White women.ConclusionsPatient portals are an effective way to recruit participants for research studies, but there are substantial racial and ethnic disparities and disparities by urban/rural status in the use of patient portals, the opening of a patient portal invitation, and enrollment in the study.Trial registrationClinicalTrials.gov NCT03655223; https://clinicaltrials.gov/ct2/show/NCT03655223.

Dataset Information

Using formative research to develop a counselor training program for newborn screening in Ghana.

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Using formative research to develop a counselor training program for newborn screening in Ghana.

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