All 24 mothers approached agreed to participate, and all completed the intervention. Most women required only one session of each of the visits, however two women repeated Visit 2 (where the mother relates her life and HIV stories) on the suggestion of the counsellor who felt they needed more counselling to work through personal issues before engaging in the intervention training. One mother repeated Visit 4 (where the mother practises the intervention tools she will use with her child), because she requested further opportunities to practise with the counsellor to build her confidence. Seventeen women were literate in both English and Zulu, six were literate in Zulu only and one participant was illiterate. The illiterate participant expressed no reservations about proceeding with the intervention and elicited assistance from a literate family member to assist with reading where required.
Data relating to self-reported health status of mothers is shown in Table . The mean age of mothers was 33.5 (median 32; range 24–46) years, most women were living healthily with CD4 counts above 300 (mean 339; median 361; range 1–747) while 9 women had initiated ART (current eligibility for ART in South Africa is a CD4 count of <350 cells/ml). Of the 24 women, 20 reported being unemployed; six received a regular remittance; 23 received a government child support grant; and 11 reported that the child’s father was financially contributing towards the study child's care. Most (19) women reported being unmarried but in a relationship with a long-term partner. In 18 cases the father of the study child was still alive, and eight of the mothers were still in a relationship and living with him. A further two were living with new partners while 14 were living on their own with their children and/or other family members. Fifteen of the 24 women had disclosed their HIV status to their current partner, 12 to a parent and a sibling and 10 to adult friends outside the household. Only three had not disclosed to any other adult, all three of whom were living with a new partner who was unaware of their HIV status. None of these three women had initiated ART and their last CD4 counts were 568, 380 and 200 cells/ml respectively.
The mean age of the 24 children was 6.8 (median 7; range 6–8) years, with a similar numbers of males (13) and females (11) (Table ). Three children were currently in Grade R (pre-school year); 11 in Grade 1 (first year primary school); seven in Grade 2 (second year primary school); two in Grade 3 (third year primary school); data were missing for one child.
Maternal disclosure to HIV-negative children
Five mothers indicated that they had either ‘partially or fully disclosed’ to their children prior to this intervention, mostly driven by pragmatic reasons following an illness and a need to ensure child care. In all five cases the mothers had fully disclosed (i.e. used the words “HIV”) to their older children (10–18 years), but had told their younger children (<10 years) that they had an illness which required them to go to hospital. While HIV was spoken about with older children and other family members, and it was possible the younger children were aware of, or had heard about HIV, in the family, in these five cases the mothers were unsure what the younger child knew and understood about HIV at baseline. As a result, all five of these mothers wished to participate in this intervention to disclose fully to the younger index child, as they felt their previous partial disclosures around illness and hospitalisations had been inadequate. These mothers were considered to have a clear intention to disclose at the start of the intervention. Of the remaining 19 women, three had disclosed fully to an older child but had made no disclosure to the younger index child while 16 had not disclosed to any of their children regardless of their age. None of these 19 mothers expressed any intention to disclose to the index child prior to enrolling in the study.
The most salient concerns about disclosure prior to the disclosure intervention were that the child was too young (22/24), might suffer emotionally afterwards (21/24), would disclose to others (21/24) or that the mother felt unable to answer difficult questions relating to the source of the HIV infection or death (19/24).
All 24 mothers chose to disclose something about their illness to their children during the intervention, but levels of HIV disclosure differed. Almost half the mothers (11) disclosed fully using the words “HIV” and indicating to the child that they were infected with HIV, while the remaining 13 disclosed partially, explaining that they had a virus, and using the tools to explain what the virus did in their bodies and how it can be controlled, without specifically using the words “HIV”. Among the 19 mothers who had not disclosed previously, and had no intention to disclose at the start of the intervention, 8/19 fully disclosed using the words ‘HIV’ while 11/19 chose to undertake partial disclosure. In two cases indicated by *in Table (Family Study Numbers 20 and 21), the mother disclosed using the words "Virus" during the disclosure activity, but the child subsequently began asking questions about “AIDS” in the case of Family 20 and directly asked for the virus name in the case of Family 21. In Family 21 the mother did not name “HIV” while in Family 20 the mother shifted to discussing HIV openly. In both these cases the maternal disclosure is listed as partial as this most closely reflects the mothers’ intention and action during the intervention disclosure. However, in these two cases it is clear that for one child (Family 20) significant knowledge of HIV may have preceded the intervention, and for the other (Family 21) when the mother was presented with an option to disclose more fully she continued with partial disclosure. It is noteworthy that of the 5/11 mothers who stated they had disclosed fully to older children prior to the intervention and intended to disclose fully to younger children as part of the intervention, only 2/5 subsequently disclosed fully and reported their children were calm (Family 8 and 15); the remaining 3/5 chose to disclose partially. Unlike in Family 20, in Families 23 and 24 the children’s questions following partial disclosure did not indicate any knowledge of HIV or willingness to raise questions about HIV in response to the partial disclosure.
Most mothers described the reaction of their children to the disclosure intervention as calm, accepting and confident (14), eight reported that their child was initially confused and in need of further explanation, and only two reported fear or emotional distress as the initial reac-tion to disclosure. Table summarises children’s reactions, commonly asked questions after disclosure and mothers’ experiences of undertaking disclosure using the intervention materials. A few mothers (6/24) reported that there were aspects of disclosure that they did not enjoy, including: feeling frustrated that the child did not understand initially, feeling disappointed that the child had not asked more questions, feeling concerned that knowing about her HIV status was hurtful for the child and caused emotional distress, finding it difficult to talk openly about HIV, and feeling nervous about using the HIV Body Map and saying the words “HIV” out loud. Two mothers reported not enjoying the Family Life Line exercise (Session 4, Table ), the first because it brought up difficult issues around step-siblings in the household who were raised by the current partner, and the other because it raised difficult issues about bereavement and people who had died which she felt ill-prepared for. The most salient challenge raised by mothers in the post-disclosure interview was finding a quiet space in the home to undertake disclosure, with many mothers reporting having to deal with interruptions by younger children who wanted to play with the intervention materials.
While family members were encouraged to participate in the intervention, only a few (3/24) helped the mother with practice and preparation, two of whom subsequently participated in the disclosure event with the mother. However, more family members became involved in health promotion and custody planning activities following the disclosure being completed by the mother. Four mothers reported challenges in taking their children to clinic as they were employed: in two cases the father of the child completed the clinic component of the intervention, and in the remaining two an older sibling accompanied the child to the clinic.
Mothers perceptions of the intervention and materials
Prior to the intervention mothers expressed concerns about disclosure including fears that the child might raise issues about HIV and death:concerns that the child was too young to understand:worries that the disclosure would cause the child emotional damage:and fears that the child would tell others about her HIV status:
“They can be full of fear that I may die anytime soon”
“She is still too young and not clever enough to understand”
“I felt that they would not accept it, they would get frustrated and not do well at school”
“My child talks too much, she may tell other people”
However, the materials, illustrations and branding reinforced maternal confidence to disclose their HIV status, improving maternal self-efficacy:providing confidence around the quality of the materials:making the disclosure process seem more realistic and approachable:helping the mother to organise her thoughts in a structured way:and giving a structure for explaining health related issues:
“I was so nervous about the telling, saying the words, but now I see how the body map works, I can just show the child and take myself there easy”
I feel like this is going to be very useful in showing me how to do it well for my child
“The children will feel too excited because it looks like it came from the shops”
“These materials makes disclosure less scary for me”
“The steps are easy to understand, in the way that they are presented, I will enjoy to use it, I can’t easily get lost”
“I really like the materials, I have been struggling to explain to my children about clinic, why I take the pills, and they have not understood clearly, with these materials even I understand more clearly”
This body map makes a real contribution I can use it to explain so many things from HIV to even the flu
For most mothers in the intervention, the materials (see Table ) were the first of their kind in the household. Only seven households reported having any storybook in the household prior to the intervention and 22 reported that the story book helped them to spend more time with the child. All women expressed the desire for access to similar books covering topics including: Teaching children to be safe from child sexual abuse; Teaching young children about their bodies and sex education; Teaching morals and values and good behaviour. Similarly, only nine mothers reported that any of their children had a doll prior to the intervention, and most felt it was a useful ‘play and communication’ tool, reminding them to play with their child (18), helping them to listen to their child (19) and understand their child’s worries better (18), and recognising what makes their child feel happy and reassured (17).
Counsellors’ perceptions of the intervention and materials
An important aspect of the intervention development was ensuring that the structure of the materials assisted the counsellor to focus on the mothers' emotional issues. The counsellors reported finding the tools useful in containing emotions and organising narratives, and maintaining counsellor empathy with the mother:
“It was so simple now that we are doing it, the different steps you do, first it is listening and it’s even a surprise to the person them self…they think you just want to know about them being HIV-infected..then they are surprised you actually want to know their love stories, it’s a good surprise, everything about their face and body changes, because they see I am looking at them and that I see them and not the HIV positive label” [Counsellor 1]
“It helps that we talk and then do a timeline, it helps to bring the story together, to make sense of things, it becomes that you are looking at it together, so you start to feel you get a same view, like you are both looking out the same window” [Counsellor 2]
“Asking mothers to tell their love stories as part of their life stories, well it’s different to what I expected, you learn to be humble about yourself, we all make mistakes in love, you don’t have to make many or even big mistakes before you can get HIV, when you take people back in time they have a chance to explain, you are saying to them that you are there to help, you are a real person who knows the real world, and you want to deal with real life” [Counsellor 3]
Quality assurance (QA) visits were conducted by a masters level project coordinator with a randomly selected sample of 10% of visits and counsellors scored >80% on all QA visits for all sessions. Each session included a rating scale covering core concepts and step fidelity; raw scores were converted to percentages and averaged over sessions by counsellor. Failures on QA most commonly related to fidelity in the order, rather than omission, of steps in particular intervention sessions. On average, the individual and family preparation phase of the intervention required 1–2 counsellor hours (Session 1 and 2), disclosure training took 2–3 hours (Session 3 and 4), health promotion training 1–2 hours (Session 5). Mothers reported that on average the disclosure process took less than one hour with the child; all mothers completed the intervention within an 8 week period.
Community perceptions of the intervention and materials
Finally, ensuring cultural sensitivity in the development of the illustrations was important in the piloting of the materials:
“… to see those illustrations and the stories and stuff, I mean, you know, as a Zulu person out there in the world you just don’t see that happening, to have something that looks like you, not like a cartoon with black coloured skin or those stupid things you know, but that really looks like you, your culture, the colours, your hair; the way people dress, you just don’t see things like that, you don’t really even think that you haven’t seen them until you see them and then you say ‘hey look at this – this is really cool, why haven’t I seen this before now, I’m a Zulu person and this looks like me, this looks like my family, you know what I mean, it’s really cool and it counts for a lot, and it says something about who you are and how you want to help and respect people in this community.” [Member of the Africa Centre Community Liaison Office]
Children’s reactions to disclosure
After the disclosure, the questions children asked of their mothers were similar to those commonly cited in the literature, relating mainly to the nature of HIV, transmission and HIV medication (Table ). Several children sought reassurance that they were not infected themselves and that the mother was not going to die soon. An unusual finding related to the level of inadvertent disclosure of siblings' and other adults' HIV status that occurred as a result of maternal disclosure and discussion of HIV-related issues (see children’s questions in Table ).
The intervention impact on family relationships, health promotion and care planning
As shown in Table , mothers perceived that this intervention resulted in improvements in family relationships and understanding of roles and responsibilities towards child care, increased health promotion activities in the homestead and improved parent confidence around health promotion and sex education, increased discussion around child protection risks including bullying, teacher problems, physical and sexual abuse. At the post-intervention interview, 6 of the 24 mothers reported that, as a result of the intervention, they had disclosed to an adult family member whom they had not disclosed to previously, suggesting that the intervention may increase disclosure more generally in the family. While the intervention resulted in these changes within the home environment and family relationship, the same increases in confidence were not evidenced in maternal confidence to effect change in their broader community.
Intervention impact on family support, health promotion, maternal confidence and child protection (Questions asked to the mother)