The socio-material self-care practices of children living with hemophilia or juvenile idiopathic arthritis in Denmark.

Growing up with a chronic disease can take its toll on children and their families, and if poorly managed, be disruptive to children's long-term health and wellbeing. While parents and health service providers do play a central role in disease management, children's own self-care practices often go unnoticed. In existing literature, children's self-care practices only tend to emerge in research with adolescents who "transition" from pediatric to adult clinical care services. This study was conducted in December 2017 to May 2018 and explores ethnographically the self-care practices of children affected by hemophilia or juvenile idiopathic arthritis in Denmark, with a particular interest in how social relations and material context affect their pre-transition self-care practices. A total number of 16 children and adolescents aged 7-17 years and 39 family members participated in the study. We find that the children participate in three socio-material self-care practices. Firstly, the children actively engage in home treatment of their bodies by changing the setup of medical equipment and incorporating everyday materialities to make treatment more comfortable. Secondly, they play games imitating their own treatment, using medical equipment on dolls or teddy bears to seek out experience and learning. Thirdly, they seek a sense of normality by tactically hiding material signifiers of their disease in online and offline encounters with peers. Our findings suggest that children living with a chronic disease establish and participate in a range of different self-care practices, and actively mobilize people and things around them to achieve precisely this. We conclude that these socio-material self-care practices are central to helping children make sense of living with chronic disease, both to maintain health and wellbeing, but also to gain greater independence. We encourage others to recognize children's pre-transition self-care practices, and the implications of these agentic capabilities.

Vaccination status and needs of asylum-seeking children in Denmark: a retrospective data analysis.

OBJECTIVES: Asylum seekers to Europe may come from war-torn countries where health systems have broken down, and there is evidence that asylum-seeking children have low coverage of childhood vaccinations, as well as uptake of immunisations in host countries. Such gaps in immunisation have important implications for effective national vaccination programmes. How we approach vaccination in children and adults entering Western Europe, where as a group they face barriers to health services and screening, is a growing debate; however, there are limited data on the vaccination status of these hard-to-reach communities, and robust evidence is needed to inform immunisation strategies. The aim of this study was to explore the vaccination status and needs of asylum-seeking children and adolescents in Denmark. STUDY DESIGN: We conducted a retrospective data analysis of anonymised patient records for asylum-seeking children and adolescents extracted from the Danish Red Cross database. METHODS: We retrospectively searched the Danish Red Cross database for children and adolescents (aged 3 months-17 years) with active asylum applications in Denmark as of October 28, 2015. Data were extracted for demographic characteristics, vaccination status and vaccinations needed by asylum-seeking children presenting to Red Cross asylum centres for routine statutory health screening. RESULTS: We explored the vaccination status and needs of 2126 asylum-seeking children and adolescents. About 64% of the study population were male and 36% were female. Eight nationalities were represented, where 33% of the total of children and adolescents were not immunised in accordance with Danish national guidelines, while 7% were considered partly vaccinated, and 60% were considered adequately vaccinated. Afghan (57% not vaccinated/unknown) and Eritrean (54% not vaccinated/unknown) children were the least likely to be vaccinated of all nationalities represented, as were boys (37% not vaccinated/unknown) compared with girls (27% not vaccinated/unknown) and children and adolescents aged between 12 and 17 years (48% not vaccinated/unknown) compared with 6- to 11-year olds (26%) and 0- to 5-year olds (22%). The health screenings resulted in 1328 vaccinations. The most commonly needed vaccines were diphtheria, tetanus, pertussis, polio and Haemophilus influenzae type b, (DTaP/IPV/Hib) which comprised 49% of the vaccines distributed, followed by the pneumococcal vaccine (Prevnar) (28%) and measles, mumps and rubella (MMR) vaccine (23%). CONCLUSIONS: The finding that nearly one-third of asylum-seeking children and adolescents in Denmark were in need of further vaccinations highlights the gaps in immunisation coverage in these populations. These results point to the need to improve access to health services and promote national vaccine programmes targeted at these communities to facilitate vaccination uptake and increase immunisation coverage to reduce the risk of preventable infectious diseases among asylum-seeking children.

Changing forms of HIV-related stigma along the HIV care and treatment continuum in sub-Saharan Africa: a temporal analysis.

OBJECTIVES: Stigma remains pervasive for people living with HIV (PLHIV) in sub-Saharan Africa, undermining care engagement. Using everyday, biographical and epochal temporalities, we explored the manifestation of stigma at different stages of the HIV care continuum in seven health and demographic surveillance sites in Eastern and Southern Africa. METHODS: Between 2015 and 2016, we conducted qualitative in-depth interviews with 264 PLHIV, 54 health providers and 48 family members of people who had died from HIV. Topic guides explored experiences of HIV testing, care and treatment services. Data were analysed thematically, aided by NVivo 10. RESULTS: In everyday time across these communities, stigma was evident in the presence of gossiping and the relative absence of supportive interpersonal discourse, which fuelled judicious disclosure. This was especially disruptive at testing, counselling and early antiretroviral therapy adherence stages of care. Biographical time framed everyday stigma events, highlighting the dilemma of disclosure in relation to sexual relationship norms, as well as the interfacing of age and healthcare continuum points. Epochal patriarchal relations gave a structural context to everyday and biographical stigma dynamics. Historical shifts to social acceptance of PLHIV within these communities, while positive, were complicated by stigma in everyday life and in respect of biographical goals like having a family. Moreover, low community-level resistance to HIV-related stigma jeopardised stigma reduction strategies. CONCLUSIONS: Despite improvements to HIV care services, stigma remains pervasive across the HIV care continuum in these sites. Context-specific interventions are needed to address stigma and discrimination of PLHIV within the community and in health services, and greater reflection is required to ensure policies aiming to expand HIV treatment do not exacerbate stigma and result in negative HIV outcomes.

In what ways do communities support optimal antiretroviral treatment in Zimbabwe?

Little research has been conducted on how pre-existing indigenous community resources, especially social networks, affect the success of externally imposed HIV interventions. Antiretroviral treatment (ART), an externally initiated biomedical intervention, is being rolled out across sub-Saharan Africa. Understanding the ways in which community networks are working to facilitate optimal ART access and adherence will enable policymakers to better engage with and bolster these pre-existing resources. We conducted 67 interviews and eight focus group discussions with 127 people from three key population groups in Manicaland, eastern Zimbabwe: healthcare workers, adults on ART and carers of children on ART. We also observed over 100 h of HIV treatment sites at local clinics and hospitals. Our research sought to determine how indigenous resources were enabling people to achieve optimal ART access and adherence. We analysed data transcripts using thematic network technique, coding references to supportive community networks that enable local people to achieve ART access and adherence. People on ART or carers of children on ART in Zimbabwe report drawing support from a variety of social networks that enable them to overcome many obstacles to adherence. Key support networks include: HIV groups; food and income support networks; home-based care, church and women's groups; family networks; and relationships with healthcare providers. More attention to the community context in which HIV initiatives occur will help ensure that interventions work with and benefit from pre-existing social capital.

Evidence for a contribution of the community response to HIV decline in eastern Zimbabwe?

Membership of indigenous local community groups was protective against HIV for women, but not for men, in eastern Zimbabwe during the period of greatest risk reduction (1999-2004). We use four rounds of data from a population cohort to investigate: (1) the effects of membership of multiple community groups during this period; (2) the effects of group membership in the following five years; and (3) the effects of characteristics of groups hypothesised to determine their effect on HIV risk. HIV incidence from 1998 to 2003 was 1.18% (95% CI: 0.78-1.79%), 0.48% (0.20-1.16%) and 1.13% (0.57-2.27%), in women participating in one, two and three or more community groups at baseline versus 2.19% (1.75-2.75%) in other women. In 2003-2005, 36.5% (versus 43% in 1998-2000) of women were members of community groups, 50% and 56% of which discussed HIV prevention and met with other groups, respectively; the corresponding figures for men were 24% (versus 28% in 1998-2000), 51% and 58%. From 2003 to 2008, prior membership of community groups was no longer protective against HIV for women (1.13% versus 1.29%, aIRR = 1.25; p = 0.23). However, membership of groups that provided social spaces for dialogue about HIV prevention (0.62% versus 1.01%, aIRR = 0.54; p = 0.28) and groups that interacted with other groups (0.65% versus 1.01%, aIRR = 0.51; p = 0.19) showed non-significant protective effects. For women, membership of a group with external sponsorship showed a non-significant increase in HIV risk compared to membership of unsponsored groups (adjusted odds ratio = 1.63, p = 0.48). Between 2003 and 2008, membership of community groups showed a non-significant tendency towards higher HIV risk for men (1.47% versus 0.94%, p = 0.23). Community responses contributed to HIV decline in eastern Zimbabwe. Sensitive engagement and support for local groups (including non-AIDS groups) to encourage dialogue on positive local responses to HIV and to challenge harmful social norms and incorrect information could enhance HIV prevention.

Can AIDS stigma be reduced to poverty stigma? Exploring Zimbabwean children's representations of poverty and AIDS.

OBJECTIVE: We use children's drawings to investigate social stigmatization of AIDS-affected and poverty-affected children by their peers, in the light of suggestions that the stigmatization of AIDS-affected children might derive more from the poverty experienced by these children than from their association with AIDS. METHODS: A qualitative study, in rural Zimbabwe, used draw-and-write techniques to elicit children's (10-12 years) representations of AIDS-affected children (n= 30) and poverty-affected children (n= 33) in 2009 and 2010 respectively. RESULTS: Representations of children affected by AIDS and by poverty differed significantly. The main problems facing AIDS-affected children were said to be the psychosocial humiliations of AIDS stigma and children's distress about sick relatives. Contrastingly, poverty-affected children were depicted as suffering from physical and material neglect and deprivation. Children affected by AIDS were described as caregivers of parents whom illness prevented from working. This translated into admiration and respect for children's active contribution to household survival. Poverty-affected children were often portrayed as more passive victims of their guardians' inability or unwillingness to work or to prioritize their children's needs, with these children having fewer opportunities to exercise agency in response to their plight. CONCLUSIONS: The nature of children's stigmatization of their AIDS-affected peers may often be quite distinct from poverty stigma, in relation to the nature of suffering (primarily psychosocial and material respectively), the opportunities for agency offered by each affliction, and the opportunities each condition offers for affected children to earn the respect of their peers and community. We conclude that the particular nature of AIDS stigma offers greater opportunities for stigma reduction than poverty stigma.

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

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 children's 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.

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.