An event was held on 29th May 2019 to review the experiences of young adults growing up with perinatal HIV infection including the support needed in adult services. Five young people attended the meet up as some young people had pre-arranged plans and some cancelled on the morning.
The event started with ice breakers and getting to know you exercises. The CHIVA Life Growing Up film was shown. Young people reported relating to the issues raised in the film.
There was a group discussion to consider clinic experiences and some of the points that were made were:
Lunch was provided which allowed for the development of peer relationships and highlighted the significance of age appropriate peer support. Young people then designed a canvas for the clinic area to give some ownership to clinic. Canvas and acrylic paints were provided, and the design was led by the group. (see image at top of this page.)
The description of the design highlighted that HIV can be a small part of life, so an interest in life in general is needed. This was very important to the group.
The issues that the group highlighted that link to HIV are:
Fear, stigma, mental health, side effects, security, U=U, adherence, rights, friends, new family, acceptance, CHIVA.
U=U led to an interesting discussion of the recognised benefits but that this can be used as a pressured approach to take medicines sometimes which isn’t helpful. Growing up with HIV and then focusing on onward transmission isn’t always helpful. One young person stated that “it means nothing to me”, another person stated that “it makes you feel like a bad patient if you struggle with meds”. Young people all reported that they found the meet up beneficial and the power of peer support was clear.
Feedback provided to clinic team
Suggestions for improvement to be considered by clinic team
Art work provided to clinic to be displayed during young people’s clinics in the clinic room
Follow up peer support group will be arranged with ongoing meetings six monthly to introduce young people to the group at the point of transition to adult services.