Healthcare professionals' and parents' experiences of the confirmatory testing period: a qualitative study of the UK expanded newborn screening pilot.

BACKGROUND: With further expansion of the number of conditions for which newborn screening can be undertaken, it is timely to consider the impact of positive screening results and the confirmatory testing period on the families involved. This study was undertaken as part of a larger programme of work to evaluate the Expanded Newborn Screening (ENBS) programme in the United Kingdom (UK). It was aimed to determine the views and experiences of healthcare professionals (HCPs) and parents on communication and interaction during the period of confirmatory testing following a positive screening result. METHODS: Semi-structured interviews were undertaken with parents of children who had received a positive ENBS result and HCPs who had been involved with the diagnosis and support of parents. Ten parents and 11 healthcare professionals took part in the in-depth interviews. Questions considered the journey from the positive screening result through confirmatory testing to a confirmed diagnosis and the communication and interaction between the parents and HCPs that they had been experienced. Key themes were identified through thematic analysis. RESULTS: The results point to a number of elements within the path through confirmatory testing that are difficult for parents and could be further developed to improve the experience. These include the way in which the results are communicated to parents, rapid turnaround of results, offering a consistent approach, exploring interventions to support family relationships and reviewing the workload and scheduling implications for healthcare professionals. CONCLUSIONS: As technology enables newborn screening of a larger number of conditions, there is an increasing need to consider and mediate the potentially negative effects on families. The findings from this study point to a number of elements within the path through confirmatory testing that are difficult for parents and could be further developed to benefit the family experience.

Development of an Intervention to Increase Sexual Health Service Uptake by Young People.

This study aimed to develop and implement an intervention, delivered via a website and Web app, to increase the uptake of sexual health services by young people. The intervention was co-designed with a group of 10 young people. Intervention mapping was used to guide development. To identify barriers and facilitators of access to sexual health services, three focus groups with 24 young people aged 13 to 19 years, and interviews with 12 professionals recruited from across a range of health and social services, were conducted. Data were analyzed using content analysis. Evidence was supplemented through a literature review. Barriers and facilitators were categorized as theoretical determinants and then suitable behavior change techniques (BCTs) for targeting them were selected. Targeted determinants were attitude, subjective norm, perceived behavioral control, and knowledge. Selected BCTs included "information about others' approval," "framing/reframing," and "credible source." The website/app enable users to search for services, access key information about them, watch videos about what to expect, and have key concerns removed/addressed. This is the first known digital evidence-based intervention to target this behavior described in the literature. A clear and full description of intervention development and content, including of theorized causal pathways, is provided to aid interpretation of future outcome evaluations.