Morten Skovdal

Young carers as social actors: coping strategies of children caring for ailing or ageing guardians in Western Kenya

There is a vast body of research on the impact of HIV/AIDS on children, but little which acknowledges the role of children in providing care and support for ailing parents or ageing guardians. There has been a tendency to downplay the active role and agency of young carers, with young carers often represented as victims of damaging circumstances that compromise their psychosocial well-being. To counter-balance this tendency, and to develop the critical trend that views children as social actors, we explore how young carers cope with challenging circumstances, often with skill and ingenuity, drawing on data collected in Western Kenya in 2007. Forty-eight young carers (aged 11-17) used photography and drawing to provide accounts of their coping strategies. They described 240 of the resulting photographs and drawings in writing. In addition, 34 individual interviews and 2 group discussions were conducted with children to explore the findings further and 10 individual interviews with local adults were conducted to elucidate the dynamics between adults and children. Our data revealed that young carers cope by mobilising social support, engaging in income generating activities and constructing positive social identities around their caring roles. We conclude that childrens ability to cope is determined by the extent to which they are able to participate in their community and negotiate support from it.

Social capital and HIV Competent Communities: The role of community groups in managing HIV/AIDS in rural Zimbabwe

Community involvement is increasingly identified as a “critical enabler” of an effective HIV/AIDS response. We explore pathways between community participation and HIV prevention, treatment and impact mitigation in Zimbabwe, reviewing six qualitative studies in Manicaland. These find that community group membership is often (not always) associated with decreased HIV incidence, reduced stigma and improved access to some services, particularly amongst women. Participation in formal community groups (e.g., church or womens groups) and informal local networks (e.g., neighbours, families) provides opportunities for critical dialogue about HIV/AIDS, often facilitating renegotiation of harmful social norms, sharing of previously hidden personal experiences of HIV/AIDS, formulation of positive action plans and solidarity to action them. However, implementation of new plans and insights is constrained by poverty, social uncertainty and poor service delivery. Furthermore, dialogue may have negative effects, spreading false information and entrenching negative norms. The extent that formal groups and informal networks facilitate externally imposed HIV/AIDS interventions varies. They potentially provide vital practical and emotional support, facilitating service access, treatment adherence and AIDS care. However, they may sometimes play a negative role in prevention activities, challenging stereotypes about sexuality or gender. There is an urgent need for greater recognition of the role of indigenous community groups and networks, and the inclusion of “strengthening local responses” as a key element of interventions and policy. Such efforts require great sensitivity. Heavy-handed external interference in complex indigenous relationships risks undermining the localism and bottom–up initiative and activism that might be central to their effectiveness. Cautious efforts might seek to enhance the potentially beneficial effects of groups, especially for women, and limit potentially damaging ones, especially for men. Efforts should be made to facilitate contexts that enable groups to have beneficial effects, through nesting them within wider comprehensive responses, and supporting them through strong partnerships with service providers.

Exploring children's stigmatisation of AIDS-affected children in Zimbabwe through drawings and stories

AIDS-related stigma is a major contributor to the health and psychosocial well-being of children affected by AIDS. Whilst it is often suggested that AIDS-affected children may be stigmatised by other children, to date no research focuses specifically on child-on-child stigma. Using social representations theory, we explore how Zimbabwean children represent AIDS-affected peers, examining (i) whether or not they stigmatise, (ii) the forms stigma takes, and (iii) the existence of non-stigmatising representations that might serve as resources for stigma-reduction interventions. Our interest in identifying both stigmatising and non-stigmatising representations is informed by a theory of change which accords a central role to community-level debate and dialogue in challenging and reframing stigmatising representations. In late 2008, 50 children (aged 10–12) were asked to “draw a picture of a child whose family has been affected by AIDS in any way”, and to write short stories about their drawings. Thematic analysis of stories and drawings revealed frequent references to stigmatisation of AIDS-affected children – with other children refusing to play with them, generally keeping their distance and bullying them. However children also frequently showed a degree of empathy and respect for AIDS-affected children’s caring roles and for their love and concern for their AIDS-infected parents. We argue that a key strategy for stigma-reduction interventions is to open up social spaces in which group members (in this case children) can identify the diverse and contradictory ways they view a stigmatised out-group, providing opportunities for them to exercise agency in collectively challenging and renegotiating negative representations. Contrary to the common view that drawings enable children to achieve greater emotional expression than written stories, our children’s drawings tended to be comparatively stereotypical and normative. It was in written stories that children most eloquently expressed meanings and emotions, and an awareness of the complexity of the scenarios they portrayed.

Contextual and psychosocial influences on antiretroviral therapy adherence in rural Zimbabwe: towards a systematic framework for programme planners

Great progress has been made in achieving universal access to antiretroviral therapy (ART). However, for successful viral suppression, patients must adhere to rigid and complex treatment regimens. With three quarters of antiretroviral (ARV) users in Africa adhering successfully, African countries have achieved extraordinary levels of adherence given the levels of poverty in which many ARV users live. Nevertheless, one quarter of ARV users still struggle to adhere and run the risk of experiencing viral replication, clinical progression or even drug resistance. Much has been written about ART adherence, but little has been done to systematically categorise the spectrum of factors that influence ART. In this paper, we use a Zimbabwean case study to develop a framework for ART programme planners and implementers seeking to identify and tackle social obstacles to adherence. We draw on interviews and group discussions with 25 nurses and 53 adult ARV users, which we analysed through a three-tiered thematic approach, allowing us to categorise our findings into broader dimensions that can transcend our case study and be applied elsewhere. Our findings suggest that ART adherence is influenced by the material, symbolic, relational and institutional contexts in which ARV users live as well as the patients motivation, participation and psychosocial responses to ART. This framework allows us to examine both the social context in which ART programmes are located and the psychosocial factors that influence patient behaviours. We offer this framework as a resource for ART programme planners and implementers seeking to improve ART compliance in resource-poor settings. Copyright

Challenges faced by elderly guardians in sustaining the adherence to antiretroviral therapy in HIV-infected children in Zimbabwe.

Abstract Grandparents throughout sub-Saharan Africa have shown immense courage and fortitude in providing care and support for AIDS-affected children. However, growing old comes with a number of challenges which can compromise the quality of care and support they are able to provide, particularly for children infected by HIV and enrolled on antiretroviral therapy (ART) programmes. For ART to be effective, and for infected children not to develop drug-resistance, a complex treatment regimen must be followed. Drawing on the perspectives of 25 nurses and eight grandparents of HIV-infected children in Manicaland, eastern Zimbabwe, we explore some of the challenges faced by grandparents in sustaining childrens adherence to ART. These challenges, serving as barriers to paediatric ART, are poverty, immobility, deteriorating memory and poor comprehension of complex treatments. Although older HIV-infected children were found to play an active role in sustaining the adherence to their programme of treatment by contributing to income and food generating activities and reminding their guardians about check-ups and drug administration, such contribution was not available from younger children. There is therefore an urgent need to develop ART services that both take into consideration the needs of elderly guardians and acknowledge and enhance the agency of older children as active and responsible contributors to ART adherence.

Resilience through participation and coping-enabling social environments: the case of HIV-affected children in sub-Saharan Africa.

Many children and youths living in low-resource and high-HIV-prevalence communities in sub-Saharan Africa are presented with daily hardships that few of us can even imagine. It is therefore no surprise that most research reporting on the experiences of HIV-affected children in resource-poor settings focuses on their poor health and development outcomes, casting them as victims. However, there is a growing trend to draw on more strengths-based conceptualisations in the study and support of HIV-affected children and youths. In this introduction to a special issue of The African Journal of AIDS Research, we cement this trend by providing a theoretical exposition and critique of the ‘coping’ and ‘resilience’ concepts and draw on the 11 empirical studies that make up this special issue to develop a framework that appropriates the concepts for a particular context and area of study: HIV-affected children in sub-Saharan Africa. The articles included here show, albeit in different ways and to different degrees, that the resilience of HIV-affected children in the region is an outcome of their agency and interactions with their social environment. Policy actors and practitioners working to support HIV-affected children in Africa should take heed of the proposed framework and draw on the research presented here to build coping-enabling social environments — presenting children and youths in Africa with greater opportunity to actively deal with hardship and work towards a more promising future.

I washed and fed my mother before going to school: Understanding the psychosocial well-being of children providing chronic care for adults affected by HIV/AIDS in Western Kenya

With improved accessibility to life-prolonging antiretroviral therapy, the treatment and care requirements of people living with HIV and AIDS resembles that of more established chronic diseases. As an increasing number of people living with HIV and AIDS in Kenya have access to ART, the primary caregivers of poor resource settings, often children, face the challenge of meeting the requirements of rigid ART adherence schedules and frequent relapses. This, and the long-term duty of care, has an impact on the primary caregivers experience of this highly stigmatised illness – an impact that is often described in relation to psychological deprivation. Reflecting the meanings attached to caregiving by 48 children in Western Kenya, articulated in writing, through photography and drawing, individual and group interviews, this paper presents three case studies of young caregiving. Although all the children involved in the study coped with their circumstances, some better than others, we found that the meanings they attach to their circumstances impact on how well they cope. Our findings suggest that only a minority of young caregivers attach either positive or negative meanings to their circumstances, whilst the majority attaches a mix of positive and negative meanings depending on the context they are referring to. Through a continuum of psychosocial coping, we conclude that to provide appropriate care for young carers, health professionals must align their understanding and responses to the psychosocial cost of chronic care, to a more nuanced and contextual understanding of childrens social agency and the social and symbolic resources evident in many African communities.

Children caring for their "caregivers": exploring the caring arrangements in households affected by AIDS in Western Kenya.

Abstract Reflecting dominant understandings of childhood, many researchers describe orphans as an emotional and financial cost to the households in which they live. This has created a representation of orphans as a burden, not only to their fostering household, but also to society. This article seeks to challenge this representation by exploring childrens contributions to their fostering households. Drawing on research from Bondo District in Kenya, this article brings together the views of 36 guardians and 69 orphaned children between the ages of 11 and 17, who articulated their circumstances through photography and drawing. Nearly 300 photos and drawings were selected by the children and subsequently described in writing. An additional 44 in-depth interviews and three focus group discussions were conducted to explore findings further. The data suggest that many fostering households benefit tremendously from absorbing orphaned children. All orphans were found to contribute to their fostering households income and provide valuable care or support to ageing, ailing or young members of their households. The article concludes that caution should be exercised in using the term “caregiver” to describe foster parents due to the reciprocity, and indeed at times a reversal, of caring responsibilities.

How disclosure and antiretroviral therapy help HIV-infected adolescents in sub-Saharan Africa cope with stigma.

HIV-related stigma has a major impact on the health and psychosocial wellbeing of HIV-infected children and youths. While there is some debate about the extent to which improved access to antiretroviral therapy (ART) contributes to a reduction in HIV stigma, we know little about how adolescents who know their HIV status and who are enrolled in ART experience and cope with stigma. The aim of the research was to understand and identify the pathways between HIV-status disclosure, ART, and childrens psychosocial wellbeing, including from the perspective of adolescents themselves. Two qualitative studies were carried out, in Botswana and Tanzania, in 2011: 16 adolescents and three healthcare workers were enrolled in Botswana, and 12 adolescents and two healthcare workers were enrolled in Tanzania. The data were collected through individual and group interviews as well as participant observation. The recorded interviews were transcribed and analysed using thematic network analysis. The findings indicate that HIV-status disclosure enabled adolescents to engage effectively with their ART treatment and support groups, which in turn provided them with a sense of confidence and control over their lives. Although the adolescents in the two studies were still experiencing stigma from peers and community members, most did not internalise these experiences in a negative way, but retained hope for the future and felt pity for those untested and uninformed of their own HIV status. We conclude that disclosure and good HIV-related services provide an important platform for HIV-infected adolescents to resist and cope with HIV stigma.

Creating Social Spaces to Tackle AIDS-Related Stigma: Reviewing the Role of Church Groups in Sub-Saharan Africa

An expanding body of literature explores the role of African church groups in facilitating or hindering the support of people living with AIDS and challenging or contributing to HIV/AIDS-related stigma. Treating church groups as social spaces in which HIV/AIDS-related stigma may potentially be challenged, we systematically review this literature, identifying five themes that highlight the complex and contradictory role of the church as a potential agent of health-enhancing social change. In many ways the church perpetuates HIV/AIDS-related stigma through (i) moralistic attitudes and (ii) its reinforcement of conservative gender ideologies. However some churches have managed move towards action that makes a more positive contribution to HIV/AIDS management through (iii) promoting various forms of social control for HIV prevention, (iv) contributing to the care and support of the AIDS-affected and (v) providing social spaces for challenging stigmatising ideas and practices. We conclude that church groups, including church leadership, can play a key role in facilitating or hindering the creation of supportive social spaces to challenge stigma. Much work remains to be done in developing deeper understandings of the multi-layered factors that enable some churches, but not others, to respond effectively to HIV/AIDS.