The Long and Winding Road: Archiving and Re-Using Qualitative Data from 12 Research Projects Spanning 16 Years

We describe a pilot project designed to assess the feasibility of re-use across 12 diverse qualitative datasets related to Human Immunodeficiency Virus (HIV) in the UK, from research projects undertaken between 1997 and 2013 – an approach which is chronically underused. First, we consider the sweeping biomedical changes and imperatives relating to HIV in this time frame, offering a rationale for data re-use at this point in the epidemic. We then reflexively situate the processes and procedures we devised for this study with reference to relevant methodological literature. Hammersley’s and Leonelli’s contributions have been particularly instructive through this process, and following their lead, we conclude with further considerations for those undertaking qualitative data re-use, reflecting on the extent to which qualitative data re-use as a practice requires attention to both the given and the constructed aspects of data when assembled as evidence

Keeping Confidence: Responsibility and public health

Keeping Confidence: HIV and the criminal law from service provider perspectives Duration: June 2012 - March 2013 The Monument Trust generously funded Sigma Research at London School of Hygiene and Tropical Medicine and Birkbeck College to undertake a qualitative study on perceptions of criminal prosecutions for HIV transmission among HIV service providers. Five short reports outlining the key findings of the study focus on the main themes arising from our analysis of the focus group discussions. The findings and associated policy and practice recommendations will be of interest to: those who provide HIV health and social care and their professional bodies (for instance NHIVNA, CHIVA, BHIVA, BASHH, SSHA, BPS), police and others who play a role in criminal investigations and trials, and people with diagnosed HIV

Keeping Confidence: Understanding the Law

Keeping Confidence: HIV and the criminal law from service provider perspectives Duration: June 2012 - March 2013 The Monument Trust generously funded Sigma Research at London School of Hygiene and Tropical Medicine and Birkbeck College to undertake a qualitative study on perceptions of criminal prosecutions for HIV transmission among HIV service providers. Five short reports outlining the key findings of the study focus on the main themes arising from our analysis of the focus group discussions. The findings and associated policy and practice recommendations will be of interest to: those who provide HIV health and social care and their professional bodies (for instance NHIVNA, CHIVA, BHIVA, BASHH, SSHA, BPS), police and others who play a role in criminal investigations and trials, and people with diagnosed HIV

Keeping Confidence: Practice and procedure

Keeping Confidence: HIV and the criminal law from service provider perspectives Duration: June 2012 - March 2013 The Monument Trust generously funded Sigma Research at London School of Hygiene and Tropical Medicine and Birkbeck College to undertake a qualitative study on perceptions of criminal prosecutions for HIV transmission among HIV service providers. Five short reports outlining the key findings of the study focus on the main themes arising from our analysis of the focus group discussions. The findings and associated policy and practice recommendations will be of interest to: those who provide HIV health and social care and their professional bodies (for instance NHIVNA, CHIVA, BHIVA, BASHH, SSHA, BPS), police and others who play a role in criminal investigations and trials, and people with diagnosed HIV

Keeping Confidence: Identifying resources

Keeping Confidence: HIV and the criminal law from service provider perspectives Duration: June 2012 - March 2013 The Monument Trust generously funded Sigma Research at London School of Hygiene and Tropical Medicine and Birkbeck College to undertake a qualitative study on perceptions of criminal prosecutions for HIV transmission among HIV service providers. Five short reports outlining the key findings of the study focus on the main themes arising from our analysis of the focus group discussions. The findings and associated policy and practice recommendations will be of interest to: those who provide HIV health and social care and their professional bodies (for instance NHIVNA, CHIVA, BHIVA, BASHH, SSHA, BPS), police and others who play a role in criminal investigations and trials, and people with diagnosed HIV. Catherine Dodds, Matthew Weait, Adam Bourne, Siri Egede, Kathie Jessup and Peter Weatherburn

What do you need? 2007-08 findings from a national survey of people with diagnosed HIV

Over the past twenty-five years, both the needs of people with diagnosed HIV and our understanding of them have changed dramatically. During this time there have been many assessments of need, usually within specific geographic boundaries (such as Primary Care Trusts) but no consistent approach to describing needs has been adopted. Most needs assessments have been shaped by a variety of local factors, including the profile of existing services. This study provides an insight into the needs of people with diagnosed HIV living in the UK, based on a final sample of 1777 people. The approach taken to measuring and describing need is the same as our previous national survey (Weatherburn et al. 2002). This approach was shaped by our earlier qualitative studies exploring the experience of people with diagnosed HIV in the early days of anti-HIV treatments (Anderson et al. 2000, Anderson & Weatherburn 1999, Anderson & Weatherburn 1998). While this study uses the same methods as our 2001-2002 survey we do not draw direct comparisons with our previous data or discuss change over time. The limitations of self-completion surveys using convenience samples make change comparisons hazardous. However, it is worth noting that in any comparison with our prior data (Weatherburn et al. 2002) current levels of need very rarely seem lower than we have previously reported. The range and extent of medical and social care, support and information needs we present here reveal significant challenges for service commissioners and providers. The first challenge is to avoid drawing quick conclusions about what the patterns of need mean for service commissioning and delivery. Needs have deliberately been separated from service use because the question of what services are ‘needed’ cannot be answered simply by identifying the extent of personal needs. The overall pattern of need is a useful starting point, but this pattern is complex

Keeping Confidence: HIV and the criminal law from service provider perspectives. Executive Summary

Keeping Confidence is a qualitative research study that explores the perceptions of criminal prosecutions for HIV transmission among those providing support, health and social care services for people with HIV. The main findings of the study are described in detail in four focussed reports, listed in the box above. This executive summary gives information about the background and methods of the project, and provides an overview of key themes and findings, concluding with recommendations relevant to those planning and delivering services for people with diagnosed HIV. Catherine Dodds, Matthew Weait, Adam Bourne, Siri Egede, Kathie Jessup and Peter Weatherburn. Five short reports outlining the key findings of the study focus on the main themes arising from our analysis of the focus group discussions. The findings and associated policy and practice recommendations will be of interest to: those who provide HIV health and social care and their professional bodies (for instance NHIVNA, CHIVA, BHIVA, BASHH, SSHA, BPS), police and others who play a role in criminal investigations and trials, and people with diagnosed HIV

Plus One: HIV diagnosis and disclosure

Plus One: HIV sero-discordant relationships among black African people in England (NAHIP) Duration: September 2010 - November 2011 Plus One involved in-depth, face-to-face interviews with black African people living in England who were in relationships where one person had diagnosed HIV and the other did not (ie. HIV serodiscordant)

Plus One: Managing the relationship

Plus One: HIV sero-discordant relationships among black African people in England (NAHIP) Duration: September 2010 - November 2011 Plus One involved in-depth, face-to-face interviews with black African people living in England who were in relationships where one person had diagnosed HIV and the other did not (ie. HIV serodiscordant)