Browsing by Author "Venables, Emilie"

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    Conflict and tuberculosis in Sudan: a 10-year review of the National Tuberculosis Programme, 2004-2014
    (BioMed Central, 2018-05-16) Hassanain, Sara A; Edwards, Jeffrey K; Venables, Emilie; Ali, Engy; Adam, Khadiga; Hussien, Hafiz; Elsony, Asma
    Background Sudan is a fragile developing country, with a low expenditure on health. It has been subjected to ongoing conflicts ever since 1956, with the Darfur crisis peaking in 2004. The conflict, in combination with the weak infrastructure, can lead to poor access to healthcare. Hence, this can cause an increased risk of infection, greater morbidity and mortality from tuberculosis (TB), especially amongst the poor, displaced and refugee populations. This study will be the first to describe TB case notifications, characteristics and outcomes over a ten-year period in Darfur in comparison with the non-conflict Eastern zones within Sudan. Methods A cross-sectional review of the National Tuberculosis Programme (NTP) data from 2004 to 2014 comparing the Darfur conflict zone with the non-conflict eastern zone. Results New case notifications were 52% lower in the conflict zone (21,131) compared to the non-conflict zone (43,826). Smear-positive pulmonary TB (PTB) in the conflict zone constituted 63% of all notified cases, compared to the non-conflict zone of 32% (p < 0.001). Extrapulmonary TB (EPTB) predominated the TB notified cases in the non-conflict zone, comprising 35% of the new cases versus 9% in the conflict zone (p < 0.001). The loss to follow up (LTFU) was high in both zones (7% conflict vs 10% non-conflict, p < 0.001) with a higher rate among re-treatment cases (12%) in the conflict zone. Average treatment success rates of smear-positive pulmonary TB (PTB), over ten years, were low (65-66%) in both zones. TB mortality among re-treatment cases was higher in the conflict zone (8%) compared to the non-conflict zone (6%) (p < 0.001). Conclusion A low TB case notification was found in the conflict zone from 2004 to 2014. High loss to follow up and falling treatment success rates were found in both conflict and non-conflict zones, which represents a significant public health risk. Further analysis of the TB response and surveillance system in both zones is needed to confirm the factors associated with the poor outcomes. Using context-sensitive measures and simplified pathways with an emphasis on displaced persons may increase access and case notification in conflict zones, which can help avoid a loss to follow up in both zones.
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    In island containment: a qualitative exploration of social support systems among asylum seekers in a mental health care programme on Lesvos Island, Greece
    (2019-07-22) Episkopou, Maria; Venables, Emilie; Whitehouse, Katherine; Eleftherakos, Christos; Zamatto, Federica; de Bartolome Gisbert, Francisco; Severy, Nathalie; Barry, Declan; Van den Bergh, Rafael
    Abstract Background Social support is a core determinant of health and plays a key role in the healing process of people with mental health problems and those who have been exposed to torture or other traumatic events. At the same time, social support is particularly challenging to build in such populations, as self-isolation and social withdrawal are common consequences of traumatic incidents. Defining social support is also challenging as there is no globally adequate definition. Our aim was to explore how social support was understood by Médecins Sans Frontières (MSF) beneficiaries, and how they perceived their needs on Lesvos Island, Greece to be met. Methods This was a qualitative study, based on exploratory free-listing interviews that explored how MSF beneficiaries on Lesvos understood and defined social support, followed by a series of in-depth interviews through which participants explained how they perceived their needs to be met. The study was conducted over a period of two weeks in August 2018, with 32 migrants and asylum seekers (22 male, 10 female) enrolled in the mental health services of MSF on Lesvos Island. The majority of interviewees were single men of African origin who had resided in Moria camp between 2 months and 2.5 years. Countries of origin include Syria, Afghanistan, Cameroon, Democratic Republic of Congo (DRC), Iraq, Iran, Nigeria, Senegal and other West African countries. Results Participants defined social support as the practical, informational and emotional support that people receive from organisations, friends and family members. Results revealed a lack of community links, isolation, tensions and conflict, insufficient amenities and limited orientation to services that lead to and amplify isolation, discrimination and tension. Most of the participants received little or no support both formally from organisations and informally from other migrants and asylum seekers in the camp. Conclusions Functional support networks are urgently required to overcome the consequences of restrictive policies which force people into containment and remove their support systems. Actors who are involved in providing social support, including MSF, are strongly encouraged to engage in activities that work towards building and strengthening peer support networks and creating a sense of community.
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    “It’s a secret between us”: a qualitative study on children and care-giver experiences of HIV disclosure in Kinshasa, Democratic Republic of Congo
    (2021-02-06) Sumbi, Elysée M; Venables, Emilie; Harrison, Rebecca; Garcia, Mariana; Iakovidi, Kleio; van Cutsem, Gilles; Chalachala, Jean L
    Background It is estimated that 64,000 children under 15 years of age are living with HIV in the Democratic Republic of Congo (DRC). Non-disclosure – in which the child is not informed about their HIV status - is likely to be associated with poor outcomes during adolescence including increased risk of poor adherence and retention, and treatment failure. Disclosing a child’s HIV status to them can be a difficult process for care-givers and children, and in this qualitative study we explored child and care-giver experiences of the process of disclosing, including reasons for delay. Methods A total of 22 in-depth interviews with care-givers and 11 in-depth interviews with HIV positive children whom they were caring for were conducted in one health-care facility in the capital city of Kinshasa. Care-givers were purposively sampled to include those who had disclosed to their children and those who had not. Care-givers included biological parents, grandmothers, siblings and community members and 86% of them were female. Interviews were conducted in French and Lingala. All interviews were translated and/or transcribed into French before being manually coded. Thematic analysis was conducted. Verbal informed consent/assent was taken from all interviewees. Results At the time of interview, the mean age of children and care-givers was 17 (15–19) and 47 (21–70) years old, respectively. Many care-givers had lost family members due to HIV and several were HIV positive themselves. Reasons for non-disclosure included fear of stigmatisation; wanting to protect the child and not having enough knowledge about HIV or the status of the child to disclose. Several children had multiple care-givers, which also delayed disclosure, as responsibility for the child was shared. In addition, some care-givers were struggling to accept their own HIV status and did not want their child to blame them for their own positive status by disclosing to them. Conclusions Child disclosure is a complex process for care-givers, health-care workers and the children themselves. Care-givers may require additional psycho-social support to manage disclosure. Involving multiple care-givers in the care of HIV positive children could offer additional support for disclosure.
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    “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
    (BioMed Central, 2019-02-04) Philip, Rekha R; Venables, Emilie; Manima, Abdulla; Tripathy, Jaya P; Philip, Sairu
    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.
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    "They just come, pick and go." The Acceptability of Integrated Medication Adherence Clubs for HIV and Non Communicable Disease (NCD) Patients in Kibera, Kenya
    (Public Library of Science, 2016) Venables, Emilie; Edwards, Jeffrey K; Baert, Saar; Etienne, William; Khabala, Kelly; Bygrave, Helen
    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.
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    Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers
    (BioMed Central, 2018-02-14) Philip, Rekha Rache; Philip, Sairu; Tripathy, Jaya Prasad; Manima, Abdulla; Venables, Emilie
    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.
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    “With every passing day I feel like a candle, melting little by little.” experiences of long-term displacement amongst Syrian refugees in Shatila, Lebanon
    (2019-10-10) Syam, Hanadi; Venables, Emilie; Sousse, Bernard; Severy, Nathalie; Saavedra, Luz; Kazour, Francois
    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.