Knowledge and Attitudes towards Sickle Cell Disease Screening: A Study of Members of the UK Sickle Cell Society

Over the past fifty years there has been an increase in the number of people in the UK who have a Sickle Cell Disorder (SCD) or are carriers. This increase has led to an expansion in research in this area; however one particular area that has not been researched rigorously is people’s knowledge, attitudes and behaviour towards SCD and genetic screening. Members of the Sickle Cell Society provided an ideal population for this exploratory study looking at people’s knowledge, attitudes and behaviours towards the SCD and genetic screening. This paper reports on the process and findings of this postal study

Systematic Review of Sexual Health Interventions with Young People from Black and Minority Ethnic Communities (REO44)

Executive Summary Background There is little data on sexual well-being of young people from BME in Scotland. The purpose of this systematic review of the literature covering sexual health interventions with young people from BME communities was to collate the ‘best evidence of effectiveness’ in the field and make recommendations for further practice. To do this, evidence was sought about such interventions in any industrialised country. Limited research has previously been conducted in this area and a broad definition of both sexual health and ethnic minorities was taken in order to maximise the number of studies that could be included in the review. Methods We searched a wide range of (electronic) data bases for studies aimed at young people from BME communities which included an sexual health-type intervention, an valuation, a control of comparison group, clearly defined outcomes and which were published in the English language. In addition we searched for sexual health studies of (a) parents and carers of young people in the BME communities; (b) professionals working with young BME people; and (c) access to sexual health services for young BME people. Results Our systematic review found 52 relevant papers (from nearly 5,000) reporting interventions in this area, but only one was based in the UK. The majority of studies were based in the US and involved interventions aimed at African Americans or Hispanics. Interventions were divided into nine categories according to targeted outcomes and/or group: (1) general sexual health and behaviour; (2) pregnancy avoidance; (3) Sexually Transmitted Infections (STIs) and HIV; (4) Sex and Relationship Education for young people from BME communities; (5) BME parents and carers; (6) professionals who work with young BME people; (7) access to sexual health services for BME youths; (8) peer education; and (9) BME communities targeted in order to improve sexual health in BME youths. The most common method used in included studies was a Randomised Controlled Trial (RCT), employed in just over half of the interventions. Key messages This review provides an overview of the interventions and identifies some common characteristics of effective interventions. Interventions with clearly defined aims and outcomes were more likely to demonstrate effectiveness. Skills-based programmes were more effective than information-based interventions. Having a theoretical basis seemed to contribute to the intervention’s effectiveness. Interventions aimed at improving sexual health in young people from BME communities have not been studied very well in the UK. There is a pressing need for good quality research to aid the development of intervention programmes to address this. Future research concentrating on demonstrating the effectiveness of different interventions will be vital in developing policies. The studies providing better quality research evidence are all US-based, their findings may or may not be transferable to a Scottish setting. Using the findings from such US-base studies in a Scottish context requires additional research to make the Scottish intervention culturally appropriate. It is important to note that the absence of evidence does not mean that there is evidence of the intervention is not being successful, often in this field it means that the relevant interventions have not been evaluated in an appropriate way that allows the effectiveness to be assessed