HIV-infected African parents living in Stockholm, Sweden : social networks, disclosure, parenthood, and knowledge about HIV-transmission

Sammanfattning: Background: HIV-infected individuals born in Africa constitute about 30 percent of the about 5000 persons who are living with HIV in Sweden, and represent the largest group of those infected through heterosexual contact. Thus, most children of HIV-infected persons in Sweden have a parent of African origin. Aim: The overall aim of this thesis is to deepen our knowledge and understanding of the psychosocial situation of HIV-infected parents with African origin living in Stockholm/Sweden, as to identify and improve support strategies for these families. Methods: The studies were carried out at the units for HIV care at the Department of Infectious Diseases at Karolinska University Hospital in Stockholm. The first study was a quantitative cross-sectional study performed among 47 HIV-infected African parents who were guardians of children younger than 18 (paper I and II). The semistructured interviews centred around four main areas; demographic and medical issues, social network and disclosure, knowledge of HIV-transmission, and future planning for their children. Data were recorded in the SPSS, and the variables were tested with the chi-square test. The second study was an explorative qualitative study among 12 HIV-infected Ugandan parents (paper III and IV). In-depth interviews were performed and the interview guide included two content areas: the participants experience in relation to the disclosure of HIV status (Paper III), and their experience of being a parent, in Sweden as well as in Uganda (Paper IV). In the analysis process I used conventional content analysis. In this thesis, I have been inspired by and used several theoretical frameworks when discussing the study results. I used ecological system and social network theory as to discuss the results on the participants social networks (paper I), and coping theory to discuss the findings on disclosure about the HIVinfection (paper III). In paper IV I used some dimensions of a cultural variability model to discuss the study results related to differences in parenthood in Uganda and Sweden. Results: Most participants had small social networks consisting mainly of contacts with partners and children, and more than two-thirds of the participants had no relatives in Sweden informed about their HIV status. All had contact with at least one professional person who they regarded as important to them, and contact with social workers at the HIV clinic and at the social welfare office increased the probability of disclosure about HIV infection. Many had developed new friendships among members of churches and NGOs. The participants had basic knowledge of HIV transmission, although a third thought that HIV could transmit in non-scientifically verified ways, and there were uncertainties about whom to inform about the HIV infection (paper I). Only women had informed their children about their HIV status, and only to eight of 59 children older than six years. Half of the parents had talked tosomeone about future custody arrangements, and most parents wanted their children to be cared for by a relative in Sweden or by their HIV-negative partner (paper II). The thematic results in paper III revealed that the participants main reason to avoid being open about their HIV status was fear of being treated differently. Strategies they used were to omit the word HIV in conversations, and to pretend to have other illnesses when communicating with their children. A previously not described form of silent communication about HIV status when meeting other HIVinfected persons in voluntary organisations was described. They also reported about discrimination from medical personnel outside the HIV clinic. In paper IV thematic results revealed that Ugandan fathers in Sweden were expected to perform what they described as female tasks such as cooking and taking care of the children, and the Ugandan mothers were expected to share important family decisions with their husbands. All participants had access to ARV-treatment which seemed to function as a buffer as the parents continued to feel healthy. Other difficulties than HIV, such as how to manage being a parent and a husband or wife became more prominent. Parents also expressed fear of transmitting the HIV-virus to their children through daily contact. Conclusions: HIV-infected African parents in Stockholm had small social networks with few persons informed about their HIV status. Lack of closeness to relatives seemed to have been compensated for by psychosocial support received from staff at the HIV clinic but also by support from voluntary organisations for HIV-infected persons. The parents mainly chose cognitive and/or behavioural coping to avoid openness about HIV status to children, relatives and friends. An African-Swedish method was described where parents had integrated a more Swedish way of talking and being close to their children, but in relation to their HIV status they used what they described as the African style of not informing their children. As time passed and with the positive effects of ARV treatment parents tended to be less worried about leaving their children as orphans. Reported experiences of discrimination from medical personnel outside the HIV clinic, implies a need for education of health personnel at primary healthcare centres. Health care personnel need to pay attention to these HIV-infected African parents cultural dilemmas and adapt medical information accordingly and repeat information about how the virus is and is not transmitted.