Prospective Cohort Study of Adolescents Living With HIV and Their Caregivers Attending a Psychosocial Programme in Botswana
Condition: Hiv
Study type: Observational

Summary: 
      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.
    

Detailed description: 
      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).
    

Intervention name(s): Sentebale Psychosocial Programme
Intervention type(s): Behavioral
Intervention description(s): Residential interventions (camps) for the young people, and community based support (clubs) for the young people and the caregivers.
Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        10-19 year olds living with HIV, new attenders to the Sentebale psychosocial programme

        Primary caregivers of 10-19 year olds living with HIV attending Sentebale, who are also
        attending Sentebale themselves
      
Keywords: HIV; perinatal; adolescent; camp; psychosocial