Integrating Nurse Champion Model for Group Reproductive Genetic Counseling for Sickle Cell Hemoglobinopathies into Primary Care: A Pilot Implementation Science Study

将镰状细胞血红蛋白病团体生殖遗传咨询的护士冠军模型纳入初级保健：一项试点实施科学研究

• 批准号: 10292492
• 负责人: Cheedy Jaja
• 金额: --
• 依托单位: UNIVERSITY OF SOUTH CAROLINA AT COLUMBIA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-21 至 2021-09-22
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10292492
• 关键词: Address; Adopted; Africa; Africa South of the Sahara; Alternative Health; Attitude to Health; Awareness; Birth; Birth Records; Categories; Child; Child Health; Childbirth; Client; Climate; Clinical; Clinical Nursing; Clinical Pathways; Communication; Communities; Complement; Consolidated Framework for Implementation Research; Cost Analysis; Counseling; Country; Couples; Decision Making; Diagnosis; Early Diagnosis; Educational Curriculum; Educational Intervention; Endemic Diseases; Ensure; Evaluation; Family; Feasibility Studies; Fostering; Foundations; General Population; Genetic Carriers; Genetic Counseling; Genetic Diseases; Genetic Screening; Genetic Services; Genomics; Goals; Health; Health Personnel; Health Services; Health education; Health system; Healthcare; Healthcare Systems; Hemoglobinopathies; High Prevalence; Hospitals; Immigrant; Incidence; Income; Individual; Infant; Intervention; Interview; Knowledge; Location; Marriage Ages; Methods; Minority; Modeling; Morbidity - disease rate; Neonatal Screening; Nurses; Nursing Protocols; Nursing Research; Outcome; Outcome Study; Patients; Performance; Population; Primary Health Care; Process; Professional Organizations; Provider; Public Health; Readiness; Recommendation; Research; Resources; Risk; Rural Hospitals; Self Efficacy; Sickle Cell; Sickle Cell Anemia; Sickle Cell Trait; Sierra Leone; Site; Solid; Testing; Therapeutic Intervention; Training; Training Programs; Underserved Population; Urban Hospitals; acceptability and feasibility; base; carrier testing; cost; design; effectiveness implementation study; effectiveness testing; evidence base; feasibility testing; formative assessment; gene therapy; genetic counselor; genetic testing; group counseling; group intervention; health belief; health care availability; health literacy; health seeking behavior; implementation barriers; implementation cost; implementation facilitators; implementation framework; implementation outcomes; implementation process; implementation protocol; implementation science; improved; innovation; interest; mortality; nursing intervention; organizational readiness; preference; programs; recessive genetic trait; reproductive; research study; satisfaction; service delivery; service uptake; underserved area; uptake

ABSTRACT: Sickle cell disease (SCD) is a significant contributor to child morbidity and mortality. In sub-Saharan Africa (SSA), 90% of the children born annually with SCD will die before their fifth birthday, often undiagnosed. To decrease the high birth incidence of SCD requires identifying at-risk individuals through carrier screening, genetic counseling, and informed reproductive decision-making. The professional genetic counseling workforce capacity is severely limited in SSA. Nurses, however, comprise the single largest category of available health workers in SSA. Therefore, upskilling of nurses to provide genetic counseling offers a logical alternative workforce solution. Our primary objective in this three-year R21 proposal is to assess the acceptability and feasibility of a multi- faceted, integrated Nurse Champion model to deliver genetic counseling and carrier screening for SCD. Our strategy is to use a type-2 hybrid implementation-effectiveness design to evaluate patient uptake of services and satisfaction, organizational readiness, provider acceptance, workflows, and resource use. Sierra Leone, a SCD endemic country and location of our current SCD research and clinical programs, presents an ideal study site. In this feasibility study, the aims include developing and assisting local hospitals in implementing the model, evaluating processes/determinants of model’s implementation, and evaluating the model’s acceptability and effects on provider and client outcomes. Using implementation science frameworks, our research team will iteratively engage key stakeholders to inform an intervention plan. The evidence-informed Nurse Champion platform will frame the implementation model and include pre-test counseling and nurse-administered genetic screening. Nurses will complete a comprehensive provider training program before implementing the model. Three specific aims undergird our study: (1) Assess barriers and facilitators to primary health center provision of genetic counseling with a nurse champion model; (2) Finalize an implementation plan for the intervention using Implementation Mapping and stakeholder input; and (3) pilot the nurse champion model in two primary health centers and evaluate determinants and implementation costs. We will describe developing and implementing the model using implementation science frameworks, field observations, qualitative interviews, and implementation mapping to identify barriers/enablers. The intervention will be evaluated qualitatively and quantitatively. A preliminary costing assessment will consider the nurses and research study financial outlays. This research's main outcome is expected to be a replicable and scalable implementation model that will foster genetic counseling and carrier screening for SCD. At the conclusion of this project, we expect to have a tested, scalable model for implementing and maintain genomic health service intervention for nurses in SSA that could be readily adapted to low-resource settings in the US, where there is a profound need for such approaches.

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