Telling their story: perspectives of young women, their caregivers and service providers regarding the experiences of growing up with perinatally-acquired HIV in Malawi

Background Globally, the number of adolescents living with perinatally-acquired HIV continues to rise including in Malawi. To date, this group has received relatively less attention in the field of HIV care; yet they are increasingly surviving into adulthood. There is a growing need for the development of appropriate care and support services for this group; however their sexual and reproductive health (SRH) needs remain poorly addressed. Research Aim This study aimed to explore perinatally-infected young women’s experiences of growing up with HIV in order to understand their SRH outcomes within their wider socio-cultural and structural context. Methods A qualitative case study design was adopted whereby each ‘case’ comprised a female adolescent (15-19 years), a nominated caregiver and a service provider. Data was collected for 14 cases through in-depth interviews. The interviews with adolescents were based on an innovative visual method known as ‘my story book’. Results The study found that young women endured multiple losses that negatively impacted upon their sense of self and belonging. Emotional, material and social support were essential in helping them to build a sense of identity, but their access to such resources was highly variable. Young women’s strategies to seek love, acceptance or support often led them to take sexual risks and left them with little control over their reproductive health. Both the service providers and caregivers often ‘turned a blind eye’ to young women’s sexual activities, leading to poor SRH outcomes. Lack of open discussion on SRH issues was related to cultural and religious norms hindering young women’s access to information and contraception. Conclusion Addressing the complex needs of the young women poses a key challenge for Malawi’s HIV services. One way forward is to explore ways in which services could develop integrated models of care, offering a ‘one-stop shop’ to this vulnerable group

Telling their story: perspectives of young women, their caregivers and service providers regarding the experiences of growing up with perinatally-acquired HIV in Malawi

Background Globally, the number of adolescents living with perinatally-acquired HIV continues to rise including in Malawi. To date, this group has received relatively less attention in the field of HIV care; yet they are increasingly surviving into adulthood. There is a growing need for the development of appropriate care and support services for this group; however their sexual and reproductive health (SRH) needs remain poorly addressed. Research Aim This study aimed to explore perinatally-infected young women’s experiences of growing up with HIV in order to understand their SRH outcomes within their wider socio-cultural and structural context. Methods A qualitative case study design was adopted whereby each ‘case’ comprised a female adolescent (15-19 years), a nominated caregiver and a service provider. Data was collected for 14 cases through in-depth interviews. The interviews with adolescents were based on an innovative visual method known as ‘my story book’. Results The study found that young women endured multiple losses that negatively impacted upon their sense of self and belonging. Emotional, material and social support were essential in helping them to build a sense of identity, but their access to such resources was highly variable. Young women’s strategies to seek love, acceptance or support often led them to take sexual risks and left them with little control over their reproductive health. Both the service providers and caregivers often ‘turned a blind eye’ to young women’s sexual activities, leading to poor SRH outcomes. Lack of open discussion on SRH issues was related to cultural and religious norms hindering young women’s access to information and contraception. Conclusion Addressing the complex needs of the young women poses a key challenge for Malawi’s HIV services. One way forward is to explore ways in which services could develop integrated models of care, offering a ‘one-stop shop’ to this vulnerable group

Factors influencing the experience of sexual and reproductive healthcare for female adolescents with perinatally-acquired HIV: a qualitative case study

Background: Young people living with perinatally-acquired HIV require age-appropriate support regarding sex and relationships as they progress towards adulthood. HIV affects both genders but evidence suggests that young women are particularly vulnerable to sexual abuse and more prone to engaging in sexual behaviours to meet their daily survival needs. This can result in poor sexual and reproductive health (SRH) outcomes. HIV services in Malawi provide support for young women’s HIV-related clinical needs, but it is unclear whether there is sufficient provision for their SRH needs as they become adults. This paper explores the sex and relationship experiences of young women growing up with perinatally-acquired HIV in order to understand how to improve SRH care and associated outcomes. Methods: A qualitative case study approach was adopted in which each ‘case’ comprised a young woman (15–19 years) with perinatally acquired HIV, a nominated caregiver and service provider. Participants were purposively selected from three multidisciplinary centres providing specialised paediatric/adolescent HIV care in Malawi. Data was collected for 14 cases through in-depth interviews (i.e. a total of 42 participants) and analysed using within-case and cross-case approaches. The interviews with adolescents were based on an innovative visual method known as ‘my story book’ which encouraged open discussion on sensitive topics. Results: Young women reported becoming sexually active at an early age for different reasons. Some sought a sense of intimacy, love, acceptance and belonging in these relationships, noting that they lacked this at home and/or within their peer groups. For others, their sexual activity was more functional – related to meeting survival needs. Young women reported having little control over negotiating safer sex or contraception. Their priority was preventing unwanted pregnancies yet several of the sample already had babies, and transfer to antenatal services created major disruptions in their HIV care. In contrast, caregivers and nurses regarded sexual activity from a clinical perspective, fearing onward transmission of HIV and advocating abstinence or condoms where possible. In addition, a cultural silence rooted in dominant religious and traditional norms closed down possibilities for discussion about sexual matters and prevented young women from accessing contraception. Conclusion: The study has shown how young women, caregivers and service providers have contrasting perspectives and priorities around SRH care. Illumination of these differences highlights a need for service improvement. It is suggested that young women themselves are involved in future service improvement initiatives to encourage the development of culturally and socially acceptable pathways of care

Additional file 3: of Factors influencing the experience of sexual and reproductive healthcare for female adolescents with perinatally-acquired HIV: a qualitative case study

Interview guide for the service providers. (DOCX 20 kb

Additional file 1: of Factors influencing the experience of sexual and reproductive healthcare for female adolescents with perinatally-acquired HIV: a qualitative case study

Interview guide for the young women. (DOCX 20 kb