HIV at 40: reflections on and development of interdisciplinary working in HIV care.

This article reflects on 40 years of HIV and the growing need to work collaboratively to improve outcomes for people living with HIV. It reflects on the history of interdisciplinary working in HIV care in the UK and discusses the development of links between the professions of nursing and clinical psychology. Both professions had contributed to the development of the Standards for Psychological Support for Adults Living with HIV. One of the authors, who was chair of the National HIV Nurses Association, initiated an audit of the use of the standards within UK HIV clinics and invited local British Psychological Society members to participate in the development of the audit process. The audit results identified gaps in the provision of care that led to further close working relationships. In an era of highly effective antiretrovirals that address the medical aspects of HIV care, the focus of care has shifted to the management of psychosocial factors that contribute to poor outcomes in of HIV. Interdisciplinary work and cooperation is the most effective way to address those complex issues.

"I look forward. I feel insecure but I am ok with it". The experience of young HIV+ people attending transition preparation events: a qualitative investigation.

Transition programmes which prepare young people with HIV to manage the medical, social and psychological consequences of the condition can provide clinical benefits for both young people and their families. The London-based Looking Forward Project (LFP) is embedded within a National Health Service HIV family clinic. The project uses a group work approach and aims to equip HIV+ young people over the age of 12 years who know their status with the emotional, psychological and behavioural skills necessary to face the challenges of living with HIV. This small scale qualitative study investigated the experience of attendance, explored factors which facilitated participation in the groups and investigated the impact on their lives as a result of participation. Participants reported that the LFP events were educational but different to school-like activities, being with other young people reduced isolation and that receiving a voucher was an incentive to attend. Participation was facilitated through family support. Attendance at the LFP facilitated a positive attitude towards medication and hope for the future.

User involvement in the provision of HIV services: some lessons learned from a user group in an HIV treatment centre in London.

In recent years attention has been focused on the greater participation of health service users in the identification of health service need, service design and delivery and service evaluation. This approach attempts to improve communication between health professionals and the health communities they serve in order to deliver more effective services. The establishment of user groups in HIV services has been one approach by which clinicians have attempted to establish ways that service users could help in the improvement of clinical services. This research article describes the process in the involvement of a user group in an east London HIV service. It describes the challenges that faced both the service users and the clinical staff and it analyses the factors that led to the discontinuation of the user group. The article discusses factors and challenges that must be addressed before meaningful user involvement in HIV services can be established.

HIV+ children and their families in the UK: results from a family-clinic based 'look-back' exercise in London.

Advances in antiretroviral treatment have resulted in a growing number of HIV+ children surviving into adolescence and adulthood. However, HIV remains a chronic condition compounded by additional psychosocial stressors associated with living with HIV. The gold standard for treatment of HIV+ children and young people is within a family context. This 'look-back' exercise was conducted within an HIV family clinic context in London. HIV+ children's clinical notes were examined with the aim of describing the medical and social context of the families attending the clinic. Results showed that families are living with many psychosocial challenges that may have an impact on their ability to respond effectively to the challenge of living with HIV disease.

I wish I could tell you but I can't: adolescents with perinatally acquired HIV and their dilemmas around self-disclosure.

Many young people growing up with HIV are choosing not to disclose their status to others, yet are likely to face difficult decisions and conversations such as explaining school absence, taking medication, coping with physical changes and for many, parental bereavement. This study aims to describe and explore the attitudes and opinions of adolescents with perinatally acquired HIV towards disclosure. Semi-structured interviews were conducted with nine young people aged 13-19 and analysed using Interpretative Phenomenological Analysis. Four themes emerged to illuminate the young people's attitudes towards disclosure. These were 1) myths and assumptions, 2) the disclosure dilemma, 3) fear and 4) keeping HIV in its place. This study confirms that many young people with HIV are choosing not to disclose. However, it appears that it is a complex decision-making process that changes over time and is influenced by developmental factors and societal attitudes towards HIV. Recommendations are suggested for services to better support adolescents growing up with HIV.

An evaluation of performance-arts based HIV-prevention events in London with 13- 16-year-olds.

AIM: The London borough of Newham is ethnically diverse and is one of the poorest regions in the UK. Rates of teenage pregnancy, sexually transmitted infections (STIs) and HIV are high compared to the rest of the country. One strand of the local school-based HIV-prevention programme for young people utilizes performance arts as a tool for HIV education and prevention. This study evaluated HIV knowledge, confidence and intention to use a condom in two groups of 13- 16-year-olds who had participated in performance-based events. METHOD: Group 1 (n = 14) participated in a six-week programme of performance arts-based HIV education and prevention workshops, which culminated in a theatre-based performance. Group 2 (n = 65) were audience members who attended the performance. Participants completed a short questionnaire containing both qualitative and quantitative items. RESULTS: Qualitative data suggested that the participants had learned about condoms and their efficacy in preventing acquisition of HIV and sexually transmitted diseases. Quantitative results indicated that after participation in the events, respondents had more information about HIV and condom use; were more confident that they could insist on condom use with partners; and planned to use condoms in the future. There was a statistically significant difference between Groups 1 and 2 but because of the small numbers in Group 1 this result should be interpreted cautiously. CONCLUSIONS: Performance-based HIV-prevention activities may be a useful way to deliver HIV-prevention messages to young people. This evaluation will form the basis of a more systematic and robust evaluation of future events.

Factors that contribute to women declining antenatal HIV testing.

In this study we aimed to identify factors that contribute to women's decisions to decline an HIV test during their pregnancy in an antenatal clinic setting in Metropolitan London. Voluntary HIV testing ("opt-in") is recommended by the British Department of Health in areas of higher HIV prevalence. We developed a questionnaire that focused on attitudes toward testing, knowledge of transmission routes, a self-assessment of HIV risk, and reasons for declining the HIV test. All women attending the 16-week antenatal booking appointment were offered an HIV test. Of these 560 women, 124 (23%) had an HIV test and the 436 (77%) who declined the test were asked to complete a questionnaire that explored their reasons for declining. We based our findings on the 393 completed returned questionnaires. The major finding was that women declined testing because they did not think they had been at risk for HIV. However, they based this belief on patchy HIV knowledge. The women were making an important decision during their pregnancy on the basis of poor information. The antenatal setting may not be the most appropriate environment in which to give HIV information, however, this task must be performed also in other health environments.