Process evaluation of an intervention to improve HIV treatment outcomes among children and adolescents.

SETTING: Children and adolescents with HIV encounter challenges in initiation and adherence to antiretroviral therapy (ART). A community-based support intervention of structured home visits, aimed at improving initiation, adherence and treatment, was delivered by community health workers (CHWs) to children and adolescents newly diagnosed with HIV. OBJECTIVES: To 1) describe intervention delivery, 2) explore CHW, caregiver and adolescents' perceptions of the intervention, 3) identify barriers and facilitators to implementation, and 4) ascertain treatment outcomes at 12 months' post-HIV diagnosis. DESIGN: We drew upon: 1) semi-structured interviews (n = 22) with 5 adolescents, 11 caregivers and 6 CHWs, 2) 28 CHW field manuals, and 3) quantitative data for study participants (demographic information and HIV clinical outcomes). RESULTS: Forty-one children received at least a part of the intervention. Of those whose viral load was tested, 26 (n = 32, 81.3%) were virally suppressed. Interviewees felt that the intervention supported ART adherence and strengthened mental health. Facilitators to intervention delivery were convenience and rapport between CHWs and families. Stigma, challenges in locating participants and inadequate resources for CHWs were barriers. CONCLUSION: This intervention was helpful in supporting HIV treatment adherence among adolescents and children. Facilitators and barriers may be useful in developing future interventions.

CONTEXTE: Les enfants et les adolescents séropositifs rencontrent des difficultés dans l'initiation et l'adhésion à la thérapie antirétrovirale (TAR). Des agents de santé communautaires (CHW) ont mis en place une intervention de soutien communautaire sous forme de visites structurées à domicile visant à améliorer l'initiation, l'adhésion et le traitement, auprès d'enfants et d'adolescents nouvellement diagnostiqués séropositifs. OBJECTIFS: 1) Décrire la mise en œuvre de l'intervention, 2) explorer les perceptions de l'intervention par les CHW, les soignants et les adolescents, 3) identifier les obstacles et les facilitateurs de la mise en œuvre, et 4) vérifier les résultats du traitement 12 mois après le diagnostic du VIH. METHODES: Nous nous sommes appuyés sur 1) des entretiens semi-structurés (n = 22) avec 5 adolescents, 11 soignants et 6 CHW, 2) 28 manuels de terrain des CHW, et 3) des données quantitatives sur les participants à l'étude (informations démographiques et résultats cliniques du VIH). RÉSULTATS: Quarante et un enfants ont reçu au moins une partie de l'intervention. Parmi ceux dont la charge virale a été testée, 26 (n = 32 ; 81,3%) étaient sous suppression virale. Les personnes interrogées ont estimé que l'intervention soutenait l'adhésion au TAR et renforçait la santé mentale. Les facilitateurs de la mise en œuvre de l'intervention étaient la commodité et les rapports entre les CHW et les familles. La stigmatisation, les difficultés à trouver des participants et les ressources inadéquates pour les CHW étaient des obstacles. CONCLUSION: Cette intervention a été utile pour soutenir l'adhésion au traitement du VIH chez les adolescents et les enfants. Les facilitateurs et les obstacles peuvent être utiles pour développer de futures interventions.

'I was trying to get there, but I couldn't': social norms, vulnerability and lived experiences of home delivery in Mashonaland Central Province, Zimbabwe.

Increasing facility-based delivery rates is pivotal to reach Sustainable Development Goals to improve skilled attendance at birth and reduce maternal and neonatal mortality in low- and middle-income countries (LMICs). The translation of global health initiatives into national policy and programmes has increased facility-based deliveries in LMICs, but little is known about the impact of such policies on social norms from the perspective of women who continue to deliver at home. This qualitative study explores the reasons for and experiences of home delivery among women living in rural Zimbabwe. We analysed qualitative data from 30 semi-structured interviews and 5 focus group discussions with women who had delivered at home in the previous 6 months in Mashonaland Central Province. We found evidence of strong community-level social norms in favour of facility-based delivery. However, despite their expressed intention to deliver at a facility, women described how multiple, interacting vulnerabilities resulted in delivery outside of a health facility. While identified as having delivered 'at home', narratives of birth experiences revealed the majority of women in our study delivered 'on the road', en route to the health facility. Strong norms for facility-based delivery created punishments and stigmatization for home delivery, which introduced additional risk to women at the time of delivery and in the postnatal period. These consequences for breaking social norms promoting facility-based delivery for all further increased the vulnerability of women who delivered at home or on the road. Our findings highlight that equitable public health policy and programme designs should include efforts to actively identify, mitigate and evaluate unintended consequences of social change created as a by-product of promoting positive health behaviours among those most vulnerable who are unable to comply.

Reflections on the Use of Audio Diaries to Access Young People's Lived Experiences of HIV in Zimbabwe.

This methodological article reflects on the contribution audio diaries can make to accessing important, and commonly silenced, dimensions of the lived experience of growing up with HIV and their acceptability to children. Audio diaries were used by 12 young people, aged 11 to 13 years, as part of a longitudinal qualitative study embedded within the Anti-Retroviral Research for Watoto (ARROW) clinical trial. The method provided an alternative means for young people to express detailed reflections on their day-to-day encounters, as well as ordinarily silenced topics, including hidden and suppressed emotions regarding the circumstance surrounding their perinatal infection. Although the audio diary has great potential as method, its efficacy rests on young people's understanding of how to use it. There are ethical challenges around maintaining confidentiality while participants are in possession of the diaries and provision of appropriate support. The technology used in the study was in many ways cumbersome compared with opportunities increasingly available.

Hospital Choice in Cancer Care: A Qualitative Study.

AIMS: There is limited evidence about how patients respond to hospital choice policies, the factors that inform and influence patient choices or how relevant these policies are to cancer patients. This study sought to evaluate hospital choice policies from the perspective of men who received treatment for prostate cancer in the English National Health Service. MATERIALS AND METHODS: Semi-structured interviews were undertaken with a purposive sample of 25 men across England. Fourteen men had chosen to receive treatment at a cancer centre other than their nearest. Interviews were recorded and analysed concurrently with data collection. RESULTS: Men highlight that the geographical configuration of specialist services, the perceived urgency of the condition and the protocolisation of treatment pathways all limit their choice of a specialist treatment centre. Diseases such as cancer appear not to be well suited to the patient choice model, given the lack of hospital-level outcome data. Men instead use proxy measures of quality, leaving them vulnerable to influence by marketing and media reports. Men wishing to consider other treatment centres need to independently collect and appraise complex treatment-related information, which creates socioeconomic inequities in access to treatments. A positive impact of the choice agenda is that it enables patients to 'exit care' not meeting their expectations. DISCUSSION: Policy makers have failed to consider the organisational, disease-specific and socio-cognitive factors that influence a patient's ability to choose their cancer treatment provider. Valid comparative hospital-level performance information is required to guide patients' choices, otherwise patients will continue to depend on informal sources, which will not necessarily improve their health care outcomes.

When information does not suffice: young people living with HIV and communication about ART adherence in the clinic.

Despite mounting evidence recommending disclosure of human immunodeficiency virus (HIV) status to young people with perinatally acquired HIV as a central motivating factor for adherence to antiretroviral therapy, many young people continue to experience disclosure as a partial event, rather than a process. Drawing from two longitudinal, interview-based qualitative studies with young people living with HIV (aged 10-24) in five different countries in low and high income settings, we present data regarding disclosure and information about HIV in the clinic. The article highlights the limits of discussions framing disclosure and patient literacy, and young people's reluctance to voice their adherence difficulties in the context of their relationships with clinical care teams. We suggest that a clinician-initiated, explicit acknowledgment of the social and practical hurdles of daily adherence for young people would aid a more transparent conversation and encourage young people to disclose missed doses and other problems they may be facing with their treatment. This may help to reduce health harms and poor adherence in the longer-term.