Page 404 - HIVMED_v21_i1.indb

Page 4 of 13 Original Research

encouraged parental engagement with health services to be re-contacted at a later date and for the purpose of this
through a series of parent-led activities undertaken in a Amagugu study, they were physically traced and invited to
25
primary healthcare setting. A central part of the Amagugu participate. Inclusion criteria were that the mothers were
10
approach involved training parents in health literacy and HIV-positive, and their children were HIV-uninfected and
encouraging change in parental behaviour towards health between the ages of 6–10 years. In addition, the mother–child
promotion and communication. As such, counsellors did pair needed to be in reasonable physical and mental health
not interact directly with children, but rather the mothers and reside in the study area. In cases where the mother
were trained on the use of the materials so that they could migrated for work, to be eligible for enrolment, she needed to
lead the activities with their child without the involvement be staying with her child for a minimum of two nights per
10
of the counsellor. This aimed to ensure the transfer of week. The consort diagram is shown in Figure 2. Out of a
learning, encourage behaviour change and increase parental total available pool of 525 mothers who consented to be
confidence. contacted at the end of the VTS, 375 women were approached,
of whom 291 were enrolled and 281 completed follow-up.
Each mother–child pair received one intervention package
consisting of 17 materials. The health literacy materials Data collection
included a variety of activity cards, educational games and Data in the Amagugu evaluation were collected by
storybooks, such as the ‘Family Treasures Story Book’, an questionnaires at 4 time-points: a baseline and post-
illustrated 14-page English-isiZulu storybook designed to intervention assessment to collect outcome data. A further
foster closeness between the mother and child; the `Disclosure two process evaluation semi-structured interviews were
Safety Hand’, which served as a tool to create a confidante
circle for the child that helped discourage the child’s completed: the first immediately after disclosure (a post-
disclosure of maternal HIV status to others beyond her disclosure interview) and the second conducted 1 week after
11,25
confidante circle, in a way easily understood by the child. a health clinic promotion visit (post-clinic visit). This
The tool also encouraged the child to feel safe to disclose any study reports on data from the baseline questionnaires and
risks at home or school to `safety hand’ adults in the process evaluation interviews.
household; an ‘HIV Body Map’, a tool for sex and health
education including how to explain HIV to a child; and a During the baseline assessment, data were collected using
culturally appropriate doll which facilitated play and parent– questionnaires (collected in an interview format) covering
child communication. Non-index children in a household information on maternal and child characteristics, including
were also given a doll. The families were able to keep the socio-economic, demographic and health information. This
intervention materials after the intervention had ended. 11 included treatment status and CD4 count; partner HIV status
and previous HIV disclosure to the index child and family.
Amagugu has been implemented successfully in a pilot Process evaluation data included disclosure outcome and
study with 24 mothers ; in a large-scale evaluation with 281 type (‘partial’; ‘full’); and post-disclosure questions and
11
mothers 25,26 and in a randomised controlled trial with 464 reactions of the children. Informational needs of the mothers
24
mothers. This analysis used data from the large-scale were derived from the open question of ‘Would you like
evaluation; specifically, the process evaluation data collected more storybooks for you and your family? If so, what topics
during the exit interviews with the 281 mothers. would you like to be covered?’ which was asked in the
context of the ‘Family Treasures Story Book’.
Study setting and population
At the end-line assessment, questionnaires (collected in an
This study was conducted between 2010 and 2012 at the interview format) also collected data on intervention material
Africa Health Research Institute, previously known as the usefulness including a pre–post evaluation question on
Africa Centre for Population Health (‘Africa Centre’), situated whether the ‘Disclosure Safety Hand’ had helped the mothers
in a rural community in northern KwaZulu-Natal with a to talk to their children about the risk of bullying from
high HIV prevalence rate. A Prevention of Mother-to-Child friends, teacher–child problems, or physical and sexual
28
Transmission (PMTCT) programme was implemented in
2001, 29,30 followed by a decentralised HIV treatment and abuse; whether the participant thought that the ‘HIV Body
prevention programme in 2004. 30,31,32 Map’ could be used to teach about health or sex education.
Lastly, information was gathered about whether there were
The sample for the Amagugu evaluation was purposively any dolls in the household before the intervention; if the
recruited from an existing cohort in the Vertical Transmission child played with the doll provided by Amagugu; and
Study (VTS; 2001–2006), a non-randomised intervention whether the doll helped the mother to spend more time with
study which supported exclusive breastfeeding for the first 6 her child, listen to her child more and know when her child
33
months post-birth. Prior participation in the VTS study was worried, happy or excited.
meant that the mothers’ HIV status during the perinatal
period, and hence the child’s HIV exposure status, was Other data collected in this Amagugu evaluation are detailed
known. At the time of VTS, these mothers had given consent and published elsewhere. 25,26,34

http://www.sajhivmed.org.za 396 Open Access