Prospective Cohort Study of Adolescents Living With HIV and Their Caregivers Attending a Psychosocial Programme in Botswana

Adolescents/young adults with perinatally acquired HIV (PAH) face a number of antiretroviral (ART) adherence and well-being challenges. Two psychosocial interventions that have been developed to address a range of needs of this population (and their caregivers) are residential interventions (camps) and support groups (clubs). There has been little quantitative evaluation of the effects of attending camps for young people and clubs (for children or caregivers), globally. This study aims to investigate whether a package of psychosocial support (camps and clubs) offered to young people living with HIV and their caregivers in Botswana by the Sentebale organisation, is associated with improvements in psychological, behavioural and clinical outcomes from first attendance to one year follow-up. In addition, the study will explore how the psychosocial programme is experienced by young people and their caregivers, and what the perceived impact is. The project as a whole will take place over three years. There will be an initial six month preparatory phase that will include the adaptation of self-report measures for the study context. Subsequently, two studies will be undertaken. The main study will involve a single group within-participants prospective cohort design with two time points (baseline and one year follow-up) with young people and caregivers. The sub-study will involve a qualitative cross sectional design involving semi-structured interviews with young people and caregivers. Young people will be eligible to participate if they are aged 10 to 19 years at the time of study enrolment, are living with HIV and aware of HIV-positive status, have recently started attending the Sentebale programme, and are able to give informed assent/consent. We will aim to retain 175 young people (of 253 recruited) . We will also aim to retain 178 caregivers (of 263 recruited). The sample size for the sub-study will consist of ten young people and ten caregivers.

There are approximately two million young people between 10 and 19 years, living with HIV (UNAIDS, 2013). Many of this population have been living with HIV since birth. Adolescents/young adults with perinatally acquired HIV (PAH) face a number of antiretroviral (ART) adherence and well-being challenges. They often have long histories of ART use with suboptimal regimens (Sohn \& Hazra, 2013) and rates of viral suppression are variable, often associated with poor ART adherence (Kim, Gerver, Fidler, \& Ward, 2014). Challenges to positive well-being in young people with PAH include some experiencing multiple caretaking transitions, loss due to parental illness or death, and other stressors associated with living with a chronic and stigmatised illness (e.g., hospitalisations, missed school and social opportunities, HIV disclosure challenges and pain). There is evidence of lower levels of wellbeing in young people living with PAH compared to their HIV unaffected peers (Mellins \& Malee, 2013).

Offering psychosocial interventions for young people living with HIV has the potential for enhancing well-being, HIV adjustment, ART adherence, self-esteem and increasing HIV knowledge and HIV disclosure. There are a small number of quantitative studies evaluating interventions to enhance antiretroviral adherence in young people with HIV (Shaw \& Amico, 2016) but few robust quantitative evaluations of psychosocial interventions to enhance well-being in this population (King, De Silva, Stein, \& Patel, 2009). There are no interventions on enhancing onward HIV disclosure in adolescents living with HIV (Evangeli \& Foster, 2014).

Two psychosocial interventions that have been developed to address a range of needs of this population (and their caregivers) are residential interventions and support groups. Regarding residential interventions, there is quantitative evidence in other chronic conditions of increased youth self-esteem after attendance (Odar, Canter, \& Roberts, 2013). There is also some qualitative literature on evaluating residential interventions (support camps) for young people living with HIV in the US (Gillard \& Allsop, 2016; Gillard, Witt, \& Watts, 2011; Pearson, Johnson, Simpson, \& Gallagher, 1997). Interviews with Camp attendees have revealed that this intervention can elicit a sense of belonging, enjoyment, escape, personal growth, being oneself, and caring connections, as well as increasing HIV knowledge, attitudes and skills. A recent quantitative evaluation of a residential intervention in the UK showed evidence for increases in HIV knowledge and pro-HIV disclosure attitudes and cognitions that were maintained at six month follow-up (Evangeli, Lut, \& Ely, 2016).

There is also some global evidence of positive benefits of support groups for children living with HIV, who report that groups provide a sense of belonging, normality, confidence and safety; supportive relationships; and a place to learn about treatment adherence and living healthily (Brothers, Harper, Fernandez, Hosek, \& Adolescent Trials Network for, 2014; Funck-Brentano et al., 2005; Midtbo, Shirima, Skovdal, \& Daniel, 2012; Mupambireyi, Bernays, Bwakura-Dangarembizi, \& Cowan, 2014; Muskat, Salter, Shindler, Porter, \& Bitnum, 2016). There has been little quantitative evaluation of the effects of attending support groups (for children or caregivers), although one pilot study using non-random allocation, showed some evidence of decreased worry about illness, less negative perception about treatment and greater rates of viral suppression in adolescents living with HIV (Funck-Brentano et al., 2005).

Sentebale is an organisation that has been providing residential interventions (camps) to adolescents living with HIV, and follow up support groups (clubs) for these adolescents and their caregivers, amongst other psychosocial interventions, in Lesotho for a number of years. Sentebale is now offering a similar package of psychosocial services to young people and caregivers in Botswana, partnering with Serious Fun Children's Network. The aims of Sentebale are to provide support that will enable young people to living healthy and hopeful lives, increase confidence, improve educational and occupational functioning, increase care and support, enhance HIV communication, increase caregiver support, reduce onward transmission, and increase remembering to take medication. We will evaluate the above psychosocial programme, given the need to investigate the psychosocial, behavioural and clinical outcomes of this type of intervention in high HIV prevalence contexts. Botswana has an estimated HIV prevalence of 6.6% in 15-19 year olds, and an estimated adult prevalence rate of 18.5%, and despite high levels of ART adherence, psychological difficulties in this population are common (Gupta et al., 2010).

Aims and objectives

This three year study aims to answer the following questions in a population of adolescents living with HIV and their caregivers:

1. Is the package of support offered by Sentebale (camps for young people, clubs for young people and caregivers) associated with improvements in psychological, behavioural and clinical outcomes from first attendance to one year follow-up?
2. How is the package of support experienced by young people and their caregivers, and what is the perceived impact for young people and their caregivers?

Study Design

1. Main study - single group within-participants prospective cohort design with two time points (baseline and one year follow-up) with 175 young people and 178 caregivers retained in the study (Study Aim 1).
2. Sub-study - qualitative cross sectional design involving semi-structured interviews with 10 young people and 10 caregivers (Study Aim 2).

Eligibility Criteria:
YOUNG PEOPLE

Inclusion Criteria:

* Aged 10 to 19 years at the time of study enrolment
* Living with HIV and aware of HIV-positive status
* Able to give informed consent if 18 or 19 years
* Able to give informed assent if 10-17 years
* Presence of a caregiver to give caregiver consent if 10-17 years
* Attending Sentebale clubs with first attendance at club within previous month

Exclusion Criteria:

* Previous camp attendance
* Any attendance at a different club/organisation providing a similar function
* Planning to leave the area served by the club within the next year

CAREGIVERS

Inclusion Criteria:

* Primary caregiver for a young person attending Sentebale
* Able to give informed consent
* Attending Sentebale clubs with first attendance within previous month

Exclusion Criteria

* Any attendance at a different club/organisation providing a similar function
* Planning to leave the area served by the club within the next year