Designing text-messaging (SMS) in HIV programs : ethics-framed recommendations from the field

Text messages (SMS) are being increasingly integrated into HIV programs across Southern Africa to improve patient adherence, linkage to care and provide psycho-social support. Careful attention needs to be paid to the design of SMS-based interventions for clients of HIV-care services to ensure that any potential harm, such as unwanted disclosure of HIV status, is minimized. In this article we propose a set of best practice recommendations to ensure that any SMS-based intervention considers ethical principles to safeguard safety, autonomy and confidentiality of its targeted HIV-positive beneficiaries. This analysis draws from our operational experience in Southern Africa in the design and conduct of mHealth interventions in the frame of HIV projects. The recommendations, framed in the context of the Belmont Report's three ethical pillars, may contribute to more safely operationalize any SMS service integrated into an HIV program if adopted by mHealth planners and implementers. We encourage actors to report on the ethical and methodological pathways followed when conducting SMS-based innovations to improve the wellbeing and quality provision of HIV-care for their targeted clients

Cognitive mapping: Using local knowledge for planning health research

Background: Cognitive mapping is a participatory research methodology that documents, in visual form, a construct of the local environment in which people live and work. We adapted this method to provide detailed data about study locales to inform recruitment and retention strategies for HIV prevention community based clinical trials. Methods: Four cognitive mapping studies were undertaken between 2005 and 2010, in and around Johannesburg in Orange Farm, and Hillbrow. Participants included members of clinical trial Community Advisory Boards (CAB), young people recruited from schools in Hillbrow and an organization for out of school youth, and men recruited from a database of men in the community interested in taking part in research. These groups participated in reconnaissance walks and in depth interviews, and drew detailed sketch maps. Results: The cognitive maps defined the physical boundaries of the research locales, provided insights into their social histories, and identified important characteristics of the population such as movement, social and sexual networks, ethnic and other divisions. Important differences between the official cartographic maps and the cognitive maps were raised. The mapping data was applied by identifying key areas for recruitment that recruitment staff members were less familiar with and that may otherwise have been overlooked. Conclusions: Cognitive mapping is an effective, rapid and low cost method that can be used to inform recruitment and retention strategies for community-based clinical trial research. The method also provides a means for clinical trial researchers to involve the local community in research and to familiarise them with the social setting

"They just come, pick and go." The Acceptability of Integrated Medication Adherence Clubs for HIV and Non Communicable Disease (NCD) Patients in Kibera, Kenya

Introduction The number of people on antiretroviral therapy (ART) for the long-term management of HIV in low- and middle-income countries (LMICs) is continuing to increase, along with the prevalence of Non-Communicable Diseases (NCDs). The need to provide large volumes of HIV patients with ART has led to significant adaptations in how medication is delivered, but access to NCD care remains limited in many contexts. Medication Adherence Clubs (MACs) were established in Kibera, Kenya to address the large numbers of patients requiring chronic HIV and/or NCD care. Stable NCD and HIV patients can now collect their chronic medication every three months through a club, rather than through individual clinic appointments. METHODOLOGY: We conducted a qualitative research study to assess patient and health-care worker perceptions and experiences of MACs in the urban informal settlement of Kibera, Kenya. A total of 106 patients (with HIV and/or other NCDs) and health-care workers were purposively sampled and included in the study. Ten focus groups and 19 in-depth interviews were conducted and 15 sessions of participant observation were carried out at the clinic where the MACs took place. Thematic data analysis was conducted using NVivo software, and coding focussed on people's experiences of MACs, the challenges they faced and their perceptions about models of care for chronic conditions. RESULTS: MACs were considered acceptable to patients and health-care workers because they saved time, prevented unnecessary queues in the clinic and provided people with health education and group support whilst they collected their medication. Some patients and health-care workers felt that MACs reduced stigma for HIV positive patients by treating HIV as any other chronic condition. Staff and patients reported challenges recruiting patients into MACs, including patients not fully understanding the eligibility criteria for the clubs. There were also some practical challenges during the implementation of the clubs, but MACs have shown that it is possible to learn from ART provision and enable stable HIV and NCD patients to collect chronic medication together in a group. CONCLUSIONS: Extending models of care previously only offered to HIV-positive cohorts to NCD patients can help to de-stigmatise HIV, allow for the efficient clinical management of co-morbidities and enable patients to benefit from peer support. Through MACs, we have demonstrated that an integrated approach to providing medication for chronic diseases including HIV can be implemented in resource-poor settings and could thus be rolled out in other similar contexts

“My mind is not like before”: Psychosocial rehabilitation of victims of torture in Athens

Introduction: The dual trauma of being a victim of torture as well as a refugee is related to a myriad of losses, human rights violations and other dimensions of suffering linked to torture experienced pre-migration, as well as different forms of violence experienced during and after migration. Method: To present three case studies to explore culturally-informed perspectives on trauma among victims of torture and track trajectories of psychosocial rehabilitation in relation to environmental factors. The case studies are part of a larger qualitative study of asylum seekers and refugees in a center for victims of torture in Athens, managed by Médecins Sans Frontières and Babel in collaboration with Greek Council for Refugees, which follows beneficiaries, their care providers and community representatives and leaders. Results: Key themes emerging include the substantial psychological impact of current material realities of migrant victims of torture as they adapt to their new environment and engage in rehabilitation. Delayed asylum trials, poor living conditions and unemployment have a substantial impact on posttraumatic symptoms that in turn influence psychosocial rehabilitation. Personal, social, and cultural resources emerged as having a mediating effect. Discussion: The results highlight the significant impact of the political, legal, and sociocultural environment on psychosocial rehabilitation. Practical implications for interventions are to ensure holistic, interdisciplinary, and culturally sensitive care which includes a focus on environmental factors affecting resilience; and with a dynamic focus on the totality of the individual over isolated pathologies

Looking for stability: Experiences of rehabilitation for Congolese survivors of torture in Athens and the role of the Congolese community in their support

Introduction: On-going conflict and political instability in the Democratic Republic of Congo (DRC) has led to increasing numbers of people fleeing their country for Europe. Many need rehabilitation services upon arrival in Greece after experiencing torture in DRC.  The scarcity of state resources and the limited capacity of non-governmental organisations to assist survivors of torture means many needs remain unmet. This study explored the experiences of rehabilitation for male Congolese survivors of torture living in Athens, as well as the potential role of the wider Congolese community in Athens in supporting rehabilitation.  Methods: This qualitative study included in-depth interviews with survivors of torture attending a rehabilitation clinic and key informant interviews with representatives of the wider Congolese community in Athens. Data was thematically analysed to construct and develop codes and themes. Results: 19 survivors and 10 key informants were interviewed. For many survivors, rehabilitation was an unclear concept. Despite the appreciation for services received at the clinic and the amelioration of physical and psychological symptoms, survivors felt rehabilitation was incomplete as it did not meet their accommodation needs nor provide stability through granting refugee status. Survivors were wary of trusting other Congolese people after experiencing torture and did not always associate themselves with the local Congolese community. The role of local Congolese leaders and organisations was not seen as replacing the clinical element of rehabilitation but aiding in practical issues such as information sharing and integration, especially in partnership with other organisations. Discussion: Systemic shortcomings in Greece, including poor access to accommodation and insecure asylum status, impeded processes of rehabilitation. Many participants found themselves navigating an unstable and unpredictable landscape in their journey towards “feeling whole again.” The role of the wider Congolese community in Athens in supporting rehabilitation remains complex and a lack of trust threatens social cohesion. Nonetheless, the willingness of the community to be more proactive should not be ignored by organisations and policy-makers. &nbsp

Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers

Background: The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013–2015. Methods: A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013–2015. Results: While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013–15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months’ post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged < 60 years, received one or less visit annually from a doctor or have a serious mental illness. 96% of patients had a care-giver at home, 85% of these care-givers being female. Conclusions: The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a cohort such as this one

“Small small interventions, big big roles”- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India

Background Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention. Methods A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis. Results Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients. Conclusion The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge

“With every passing day I feel like a candle, melting little by little.” experiences of long-term displacement amongst Syrian refugees in Shatila, Lebanon

Abstract Background Long term displacement and exposure to challenging living conditions can influence family dynamics; gender roles; violence at home and in the community and mental well-being. This qualitative study explores these issues as perceived by Syrian refugees who have been living in Shatila, a Palestinian camp in South Beirut, Lebanon, for at least 2 years. Methods Twenty eight in-depth interviews with men and women were conducted between February and June 2018. Women were recipients of mental health services, and men were recruited from the local community. Interviews were conducted in Arabic, translated, transcribed, coded and analysed using thematic content analysis. Results Our results show patterns of harsh living conditions similar to those described earlier in the course of the Syrian refugee crisis. Lack of infrastructure, overcrowding, cramped rooms and violence were all reported. Participants also described a lack of social support, discrimination and harassment within the host community, as well as limited social support networks within their own Syrian refugee community. Family dynamics were affected by the increased responsibilities on men, women and children; with additional economic and employment demands on men, women assuming the roles of ‘mother and father’ and children having to work and contribute to the household. Participants discussed several types of violence, including parental violence against children and violence in the community. Violence against women was also reported. Reported mental health issues included depression, anxiety, sadness, frustration, hopelessness, self-neglect and a loss of sense of self and self-worth. Some participants expressed a wish to die. Conclusions This study describes experiences of changing gender roles, family dynamics, violence and mental health after long-term displacement in in Shatila camp, South Beirut as perceived by Syrian refugees. A lack of safety and security coupled with economic hardship rendered refugees even more susceptible to exploitation and harassment. Parental violence was the most commonly reported type of domestic violence

It never happened to me, so I don’t know if there are procedures”: identification and case management of torture survivors in the reception and public health system of Rome, Italy

Background: Access and linkage to care for migrant torture survivors is contingent on their identification and appropriate referral. However, appropriate tools for identification of survivors are not readily available, and the (staff of) reception systems of host countries may not always be equipped for this task. This study explores practices in the identification and case management of torture survivors in the reception structures and in the public health sector in Rome, Italy. Method: Data were analysed manually and codes and themes generated. Results: A non-homogeneous level of awareness and experience with torture survivors was observed, together with a general lack of knowledge on national and internal procedures for correct identification of torture survivors. Identification and case management of torture survivors was mainly carried out by non-trained staff. Participants expressed the need for training to gain experience in the identification and management of torture survivors’ cases, as well support and increased resources at both the reception and public health system levels. Conclusions: The crucial process of identification and prise en charge of survivors of torture among migrant and refugee populations is relegated to nontrained and inexperienced professionals at different levels of the reception system and public health care sector, which may carry a risk of non-identification andpossible harm to survivors. Additional resources and structured interventions are urgently needed, in the form of developing procedures, training, and adapted multidisciplinary services

El papel y las responsabilidades de los mediadores culturales

La mediación cultural es fundamental para optimizar tanto el acceso como la calidad de los servicios de salud mental