AIDSImpact.com:: - Santa Fe, USA 2011

Abstract #170 - ‘Be interested in me, not just my HIV’: a consultation with HIV+ teenagers regarding their views and preferences for transition (London, UK)
Authors: Presenting Author: Dr Jayne Griffiths - National Health Service
Additional Authors: Dr. Tomas Campbell, Ms. Hannah Beer, Ms. Becki Wilkins,
Aim: Children who acquired HIV vertically are living longer and healthier lives into adulthood. HIV services have been facing the challenge of developing mechanisms for helping young people with the transition from paediatric or family services to adult-centred care. This is traditionally a time where young patients get lost to follow up, because: young people are unprepared for increased self-management of out-patient appointments; they are unfamiliar with adult services; puberty has begun and young people are exploring identity and sexuality and do not want to think about medical issues; services and families may be unprepared to allow the young person to grow up. In order to maximize engagement and minimize loss to follow up, a group of HIV+ young people were consulted about their preferences for transition as a part of developing a transition clinic in East London, UK.
Method / Issue: 20 adolescents (12 female, 8 male; age range 12-19; all Black African origin; all vertically infected) attended a focus group. Questions focused on: preferred ways of managing the transition from paediatric to adolescent services; physical/practical aspects of transition clinics; views on how to maximise clinic attendance rates. The session was transcribed verbatim and data were compared and analysed for inter-rater reliability, commonly recurring themes and subjected to a thematic analysis.
Results / Comments: The overarching theme was the importance of the quality of therapeutic relationship clinic staff developed with young people, with all participants identified this as key in both exiting from paediatric services and entering more adult focused services. A key theme in relation to managing transition was viewing transition as a process rather than an event, with attention paid to the process of ‘saying goodbye’ to trusted paediatric staff in a planned way over time (e.g. acknowledgement of the sadness of saying goodbye by both young person and staff; transitioning in small groups rather than as individuals). Key themes in relation to engaging young people included: the importance of practical factors (e.g. modernising communication methods, clinic spaces as young-person friendly); mixed views over the use of rewards and incentives (e.g. monetary rewards for attendance and/or adherence); the importance of a ‘good beginning’ with new clinic staff and of staff actively working to build positive relationships (e.g. friendly receptionists, doctors asking questions about all aspects of a young person’s life rather than focusing on HIV and adherence only); a desire to be supported to take more responsibility for managing their health condition in a staged manner (e.g. involving parents in consultations initially).
Discussion: The data suggest that young people have clear views about their preferences about the transition to more adult services and for transition clinics themselves, with a particular emphasis on the importance of the quality of relationship with individual clinic staff. More attention and planning may need to be paid to the relational and emotional aspects of transition, in particular the loss of valued relationships with paediatric staff and the anxiety of developing new relationships in more adult services. Individual transition plans developed in collaboration with young people may be an important way of supporting young people in this process and responding to their request to have a more active role in managing transition. Young people identified the importance of family remaining involved and clinic staff who may be more familiar with working with adults may need to be supported to develop competencies around working with parents/carers whilst working to foster independence. Clinics may need to consider adapting communication methods and clinic spaces to become more developmentally appropriate rather than replicating adult-focused approaches. In terms of supporting attendance/adherence, it may be helpful to pilot studies investigating the use of rewards/incentives.
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