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1.
BMC Med Ethics ; 25(1): 63, 2024 May 22.
Artículo en Inglés | MEDLINE | ID: mdl-38778293

RESUMEN

BACKGROUND: The COVID-19 pandemic forced governments, multilateral public health organisations and research institutions to undertake research quickly to inform their responses to the pandemic. Most COVID-19-related studies required swift approval, creating ethical and practical challenges for regulatory authorities and researchers. In this paper, we examine the landscape of ethics review processes in Africa during public health emergencies (PHEs). METHODS: We searched four electronic databases (Web of Science, PUBMED, MEDLINE Complete, and CINAHL) to identify articles describing ethics review processes during public health emergencies and/or pandemics. We selected and reviewed those articles that were focused on Africa. We charted the data from the retrieved articles including the authors and year of publication, title, country and disease(s) reference, broad areas of (ethical) consideration, paper type, and approach. RESULTS: Of an initial 4536 records retrieved, we screened the titles and abstracts of 1491 articles, and identified 72 articles for full review. Nine articles were selected for inclusion. Of these nine articles, five referenced West African countries including Liberia, Guinea and Sierra Leone, and experiences linked to the Ebola virus disease. Two articles focused on South Africa and Kenya, while the other two articles discussed more general experiences and pitfalls of ethics review during PHEs in Africa more broadly. We found no articles published on ethics review processes in Africa before the 2014 Ebola outbreak, and only a few before the COVID-19 outbreak. Although guidelines on protocol review and approval processes for PHEs were more frequently discussed after the 2014 Ebola outbreak, these did not focus on Africa specifically. CONCLUSIONS: There is a gap in the literature about ethics review processes and preparedness within Africa during PHEs. This paper underscores the importance of these processes to inform practices that facilitate timely, context-relevant research that adequately recognises and reinforces human dignity within the quest to advance scientific knowledge about diseases. This is important to improve fast responses to PHEs, reduce mortality and morbidity, and enhance the quality of care before, during, and after pandemics.


Asunto(s)
COVID-19 , Urgencias Médicas , Pandemias , Salud Pública , SARS-CoV-2 , Humanos , COVID-19/epidemiología , Salud Pública/ética , África/epidemiología , Revisión Ética , Betacoronavirus , Fiebre Hemorrágica Ebola/epidemiología , Infecciones por Coronavirus/epidemiología , Ética en Investigación
2.
Int J Behav Med ; 2023 Jul 31.
Artículo en Inglés | MEDLINE | ID: mdl-37524973

RESUMEN

BACKGROUND: Social isolation and loneliness are associated with living with a chronic condition particularly where stigma is a factor. Our study aimed to examine the lived experience of adolescents living with HIV in relation to isolation because of their diagnosis and consequences of disclosure. Giddens' structuration theory was used as an analytic framework to identify the potential mechanisms underlying adolescents living with HIV's experiences. METHOD: Longitudinal in-depth interviews were conducted with 20 adolescents living with HIV aged 15-24 years with each participant taking part in three interviews (total 60) between September 2020 and October 2021. Thematic analysis was performed using Braun and Clarke's steps for coding and analysing qualitative data and informed by the structuration theory framework. RESULTS: The findings indicated that adolescents living with HIV have agency and make conscious choices about sharing their status. However, these choices are influenced by their experiences in their community. The discrimination and negative judgements they often experience prevent them from disclosing their status. Stigma, discrimination, and psychological distress contribute to the isolation that adolescents and young adults living with HIV experience. The limited disclosure itself can lead to them becoming isolated and lonely. CONCLUSION: The negative experiences which adolescents living with HIV face can have an impact not only on their psychological wellbeing but also on their decision to disclose and seek support. These experiences may lead to social isolation and loneliness, an unintended consequence of their action in protecting themselves from the conditions created by the structures/environment in which they live.

3.
Afr J AIDS Res ; 22(4): 306-315, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38117742

RESUMEN

Background: Adolescents and young adults living with HIV (AYA) are faced with the challenge of living with a life-long chronic condition. We investigated the influences on the decisions by AYA to disclose their HIV status to family, intimate partners and friends.Methods: Twenty AYA aged between 15 and 24 years were purposely selected through local community-based organisations in eThekwini municipality and uMkhanyakude district in KwaZulu-Natal Province, South Africa. Virtual in-depth interviews were conducted between September 2020 to October 2021 using a topic guide focusing on HIV-status disclosure and the impact of stigma on decision-making capacity. An iterative thematic process was used for analysis.Results: Findings revealed the challenges that AYA experience for disclosure because of stigma and how this impacts their decision-making capacity. Family and friends influenced AYA in processing their discovery of their HIV status offering support needed to manage living with HIV. However, for some AYA disclosing to relatives, friends and intimate partners was difficult because of fears of rejection and recrimination. The act of disclosure was influenced by both internalised and external stigma and the type of relationships and interactions that AYA had with relatives, friends and caregivers.Conclusions: The decision to disclose is challenging for AYA because of the fear of rejection, along with internal and external stigma. The provision of support, whether from family or peers, is important. Enhancing the decision-making capacity of AYA is essential for developing their self-esteem as well as supporting future healthcare choices.


Asunto(s)
Infecciones por VIH , Humanos , Adolescente , Adulto Joven , Adulto , Revelación , Sudáfrica , Conducta Sexual , Parejas Sexuales , Estigma Social , Revelación de la Verdad
4.
BMC Med Ethics ; 23(1): 43, 2022 04 18.
Artículo en Inglés | MEDLINE | ID: mdl-35436913

RESUMEN

BACKGROUND: Limited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as 'Vukuzazi' in rural KwaZulu-Natal, South Africa. METHODS: Semi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed. RESULTS: Thirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking. CONCLUSION: Participant's understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant's interest (or lack thereof) in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant's interest and therefore understanding of why their samples are being collected.


Asunto(s)
Bancos de Muestras Biológicas , Salud Pública , Genoma , Humanos , Consentimiento Informado , Sudáfrica
5.
Afr J AIDS Res ; 21(2): 162-170, 2022 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-35901293

RESUMEN

Background: The impact of school closures due to COVID-19 raised widespread concerns about children's health and well-being. We examine the impact on the sexual health needs of learners in the context of COVID-19 related lockdowns in rural KwaZulu-Natal, South Africa.Methods: In july-November 2020 and August-November 2021 we conducted 24 in-depth interviews and 8 group discussions with teachers and learners from 4 schools, community members and key education stakeholders. All interviews were conducted by telephone. We used a thematic analysis approach and Nvivo 12 software to manage the data.Results: Four main themes related to the COVID-19 pandemic emerged from the data: the sexual and reproductive health (SRH) of learners in the lead-up to the pandemic; the impact of COVID-19 on learners' SRH and wellbeing; the opportunities schools provided to support sexual well-being of learners during the pandemic; and the role of schools in supporting SRH for learners during the pandemic. Learners and stakeholders reported that the SRH of young people was affected by alcohol misuse, poor SRH knowledge and few pathways to link learners with services. Stakeholders working with schools reported that a lack of access to biomedical interventions (e.g., contraception) increased learner pregnancies. Gender-based violence in learners' households was reported to have increased during the COVID-19 pandemic related to loss of income. School closures disrupted the provision of a safe space to provide SRH and HIV-education through Life Orientation lessons and school nurse talks. This loss of a safe space also left learners vulnerable to sexual and physical violence. However, once schools re-opened, daily COVID-19 screening in schools provided the opportunity to identify and support vulnerable children who had other social needs (food and uniforms).Conclusion: The COVID-19 pandemic may have increased SRH needs and vulnerability of school-going children in a high HIV-burden rural setting. School shutdowns reduced the opportunity for schools to provide a vital safe space and information to enhance SRH for adolescents. Schools play a vital health promotion and social protection role.


Asunto(s)
COVID-19 , Infecciones por VIH , Salud Sexual , Adolescente , COVID-19/epidemiología , Niño , Control de Enfermedades Transmisibles , Femenino , Infecciones por VIH/epidemiología , Humanos , Pandemias , Embarazo , Salud Reproductiva , Conducta Sexual , Salud Sexual/educación , Sudáfrica/epidemiología
6.
BMC Infect Dis ; 21(1): 1266, 2021 Dec 20.
Artículo en Inglés | MEDLINE | ID: mdl-34930182

RESUMEN

BACKGROUND: There is poor viral load monitoring (VLM) and inadequate management of virological failure in HIV-positive individuals on antiretroviral therapy in rural KwaZulu-Natal, South Africa. This could be contributing to increasing HIV drug resistance in the setting. This study aims to investigate the clinical and process impediments in VLM within the health system and to evaluate a quality improvement package (QIP) to address the identified gaps. The QIP comprises (i) a designated viral load champion responsible for administrative management and triaging of viral load results (ii) technological enhancement of the routine clinic-based Three Interlinked Electronic Register (TIER.Net) to facilitate daily automatic import of viral load results from the National Health Service Laboratory to TIER.Net (iii) development of a dashboard system to support VLM. METHODS/DESIGN: The study will evaluate the effectiveness of the QIP compared to current care for improving VLM and virological suppression using an effectiveness implementation hybrid type 3 design. This will use a cluster-randomised design with the primary healthcare clinics as the unit of randomisation with ten clinics randomised in a 1:1 ratio to either the intervention or control arm. We will enrol 150 HIV-positive individuals who had been on ART for ≥ 12 months from each of the ten clinics (750 in 5 intervention clinics vs. 750 in 5 control clinics) and follow them up for a period of 12 months. The primary outcome is the proportion of all patients who have a viral load (VL) measurement and are virally suppressed (composite outcome) after 12 months of follow up. Secondary outcomes during follow up include proportion of all patients with at least one documented VL in TIER.Net, proportion with VL ≥ 50 copies/mL, proportion with VL ≥ 1000 copies/mL (virological failure) and subsequent switch to second-line ART. DISCUSSION: We aim to provide evidence that a staff-centred quality improvement package, designated viral load monitoring champion, and augmentation of TIER.Net with a dashboard system will improve viral load monitoring and lead to improved virological suppression. TRIAL REGISTRATION: This trial is registered on ClinicalTrials.gov on 8 Oct 2021. Identifier: NCT05071573; https://clinicaltrials.gov/ct2/show/NCT05071573?term=NCT05071573&draw=2&rank=1.


Asunto(s)
Registros Electrónicos de Salud , Infecciones por VIH , Infecciones por VIH/tratamiento farmacológico , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto , Sudáfrica , Medicina Estatal , Carga Viral
7.
Fam Pract ; 38(5): 637-643, 2021 09 25.
Artículo en Inglés | MEDLINE | ID: mdl-33871548

RESUMEN

BACKGROUND: Due to the uncertain disease trajectory and variable rate of progression in chronic obstructive pulmonary disease (COPD), health care professionals (HCPs) are challenged in explaining what the future may hold for patients compared to those with lung cancer (LC). Support and communication of timely information can significantly improve health outcomes. OBJECTIVE: This study sought to identify factors that impact communication and support and recommend ways to improve patients' understanding of living with life-threatening illness. METHODS: Semi-structured interviews with patients with LC (n = 22) and advanced COPD (n = 18), their informal carers (21 LC and 18 COPD) and HCPs (n = 51). Patients were recruited from primary and secondary care in the East of England, UK, during 2010-12. RESULTS: Directness and clarity characterized communication in LC, whereas uncertainty and limited explanations predominated in COPD. Discussions on how the disease might impact on decisions and preferences to be made in the future were less common in COPD. Information for LC patients was mainly from hospital clinicians and any information for COPD patients mainly from primary care clinicians. CONCLUSIONS: The experience of COPD patients could be improved by professionals soon after diagnosis explaining to them the typical pattern of decline in COPD, highlighting the inherent uncertainties about when exacerbations and death may occur. This conversation should lead to planning for the different challenges that the patient and informal carer recognize as most important to them. This contrasts with the 'breaking bad news' conversation that oncologists are highly trained to deliver.


People living with lung cancer (LC) or chronic obstructive pulmonary disease (COPD) have poor health-related quality of life. However, more people with LC receive holistic palliative care (which involves supportive advance care planning) than those with COPD. We interviewed patients with LC or COPD, their informal carers (family/friends who support them) and health care professionals (HCPs) about their experiences and our findings confirmed this: HCPs said the uncertainty of COPD prognosis made starting advance care planning conversations challenging. The level of uncertainty and unpredictability is very different in LC and COPD: the cancer diagnosis is made at a single point in time with mortality immediately on the agenda, while COPD is a chronic condition that develops over many years. We urge clinicians to share this uncertainty with patients and to try to explain and communicate it sooner than later. These conversations should also continue as a recognized part of ongoing care so that COPD patients can benefit from understanding the uncertainties they are dealing and living with. LC and COPD should be approached differently to meet patients' condition-specific needs in order that the existing disparity in holistic care can be remedied.


Asunto(s)
Neoplasias Pulmonares , Enfermedad Pulmonar Obstructiva Crónica , Comunicación , Humanos , Neoplasias Pulmonares/terapia , Cuidados Paliativos , Incertidumbre
8.
J Med Ethics ; 2021 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-34172519

RESUMEN

PURPOSE: We examine the levels of post-trial responsibility ascribed to different stakeholders, following a community-based clinical trial and how the 'responsibility' is understood. METHODS: We employed photovoice, unstructured observations and key informant interviews to gain insights into contexts of access to care following transition to the public health system post trial. We used an inductive narrative analysis to explore experiences and understandings of post-trial access (PTA). RESULTS: In their photovoice stories, many participants expressed a sense of abandonment after the trial. This was viewed as a contributing factor to failing to re-engage with care available in the public health system. This led to the experiences of loss as some trial participants defaulted and died. Research investigators, department of health participants and sponsor agreed that PTA was especially important for communities in resource-limited settings. The government has an obligation towards its citizens while researchers have a responsibility to ensure a smooth transition of patients to public clinics. Sponsors have a responsibility to ensure that the trial is conducted in accordance with the protocol and post-trial agreements are in place and adhered to. Research partnerships among stakeholders were affected by power imbalances making it difficult to negotiate and plan for post-trial care responsibilities. CONCLUSIONS: The research community still struggles with understanding the scope of PTA responsibilities. Power dynamics between public health actors and research sponsors need to be managed to ensure that government involvement is not tokenistic. The responsibility of trial participants and ethics committees needs to be investigated further.

9.
BMC Health Serv Res ; 19(1): 905, 2019 Nov 28.
Artículo en Inglés | MEDLINE | ID: mdl-31779631

RESUMEN

BACKGROUND: Young people aged 10-24 years are a vulnerable group with poor health service access relative to other populations. Recent South African initiatives, the She Conquers campaign, the Integrated School Health Policy and the Adolescent & Youth Health Policy, include a focus on improving the breadth and quality of youth-friendly health service delivery. However, in some settings the provision and impact of scaled-up youth friendly health services has been limited indicating a gap between policy and implementation. In this study we reviewed existing sources of data on health service utilisation to answer the following question: 'What health conditions do young people present with and what services do they receive at public health clinics, mobile clinics and school health services?' METHODS: We conducted a retrospective register review in three purposively selected primary healthcare clinics (PHCC), one mobile clinic, and one school health team in Hlabisa and Mtubatuba sub-districts of uMkhanyakude District, KwaZulu-Natal, South Africa. The focus was service utilisation for any reason by 10-24 year olds. We also conducted descriptive analysis of pre-existing data on service utilisation by young people available from the District Health Information System for all 17 PHCC in the study sub-districts. RESULTS: Three quarters of 4121 recorded young person visits in the register review were by females, and 40% of all young person visits were by females aged 20-24 years. The most common presenting conditions were HIV-related, antenatal care, family planning, general non-specific complaints and respiratory problems (excluding TB). There were relatively few recorded consultations for other common conditions affecting young people such as mental health and nutritional problems. Antibiotics, antiretrovirals, contraceptives, vitamins/supplements, and analgesics were most commonly provided. Routine health registers recorded limited information, were often incomplete and/or inconsistent, and age was not routinely recorded. CONCLUSIONS: Measuring morbidity and service provision are fundamental to informing policy and promoting responsive health systems. Efforts should be intensified to improve the quality and completeness of health registers, with attention to the documentation of important, and currently poorly documented, young people's health issues such as mental health and nutrition.


Asunto(s)
Atención a la Salud/estadística & datos numéricos , Aceptación de la Atención de Salud/estadística & datos numéricos , Atención Primaria de Salud/estadística & datos numéricos , Servicios de Salud Escolar/estadística & datos numéricos , Adolescente , Servicios de Planificación Familiar , Femenino , Humanos , Masculino , Embarazo , Estudios Retrospectivos , Sudáfrica/epidemiología , Adulto Joven
10.
BMC Health Serv Res ; 19(1): 195, 2019 Mar 28.
Artículo en Inglés | MEDLINE | ID: mdl-30922372

RESUMEN

BACKGROUND: We use the 'candidacy framework' to describe adolescents' and young people's (AYP) experiences of health services in a rural KwaZulu-Natal district, South Africa. METHODS: A qualitative approach was used including group discussions, in-depth and key informant interviews with a purposive sample of AYP (n = 70), community leaders (n = 15), school health teams (n = 10), and health service providers (n = 6). RESULTS: Findings indicate tacit understanding among AYP that they are candidates for general health services. However, HIV stigma, apprehensions and misconceptions about sexual and reproductive health, and socio-cultural views which disapprove of AYP pre-marital sex undermine their candidacy for sexual and reproductive services. CONCLUSION: Consideration and understanding of the vulnerabilities and reasons AYP exclude themselves will inform interventions to address their health needs. AYP's participation in the design of health services will increase their acceptability and encourage uptake of services.


Asunto(s)
Aceptación de la Atención de Salud/psicología , Adolescente , Adulto , Niño , Utilización de Instalaciones y Servicios , Femenino , Grupos Focales , Humanos , Masculino , Matrimonio/psicología , Aceptación de la Atención de Salud/estadística & datos numéricos , Salud Reproductiva/estadística & datos numéricos , Servicios de Salud Reproductiva/estadística & datos numéricos , Salud Rural/estadística & datos numéricos , Conducta Sexual/psicología , Conducta Sexual/estadística & datos numéricos , Salud Sexual/estadística & datos numéricos , Estigma Social , Sudáfrica
11.
BMC Med Ethics ; 20(1): 47, 2019 07 08.
Artículo en Inglés | MEDLINE | ID: mdl-31286952

RESUMEN

BACKGROUND: This article discusses our reflections on ethical and methodological challenges when conducting separate interviews with individuals in dyads in the uMkhanyakude district, South Africa. Our work is embedded in an ethnographic study exploring care relationships between adolescents and their older carers in the context of a large-donor funded HIV programme. We use these reflections to discuss some of the challenges and present possible management strategies that may be adopted in conducting dyadic health research in resource-poor settings. METHODS: Drawing from the relational agency, three rounds of separate interviews and participant observation were undertaken with dyads of adolescents aged between 13 and 19 and their older carers aged 50+ from October 2017 to September 2018. A reflexive journal was kept to record the interviewer's experiences of the whole research process. We identified methodological and ethical challenges from these data during the thematic analysis. RESULTS: A total of 36 separate interviews were conducted with six pairs of adolescent-older carer dyads (n = 12 participants). Five themes emerged: recruitment of dyads, consenting dyads, confidentiality, conducting separate interviews with adolescents and older carers, and interviewer-dyad interaction. We also illustrated how we dealt with these challenges. CONCLUSIONS: Results from this study can guide the recruitment, consenting and collecting data for health studies that employ a similar form of enquiry in LMICs. However, ethical and methodological challenges should be recognised as features of the relationships between cross-generation dyads rather than weaknesses of the method.


Asunto(s)
Ética en Investigación , Entrevistas como Asunto , Adolescente , Confidencialidad/ética , Femenino , Infecciones por VIH/prevención & control , Humanos , Consentimiento Informado/ética , Entrevistas como Asunto/métodos , Masculino , Persona de Mediana Edad , Padres , Selección de Paciente/ética , Población Rural , Sudáfrica , Adulto Joven
12.
Qual Health Res ; 29(5): 700-718, 2019 04.
Artículo en Inglés | MEDLINE | ID: mdl-30556470

RESUMEN

We describe and reflect on a rapid qualitative survey approach called "Broad Brush Survey" (BBS) used in six community-randomized trials (CRTs)/studies in Zambia and South Africa (2004-2018) to document, compare, classify, and communicate community features systematically for public health and multidisciplinary research ends. BBS is based on a set sequence of participatory qualitative methods and fieldwork carried out prior to a CRT intervention and/or research by social scientists to generate rapid community profiles using four key indicators: physical features, social organization, networks, and community narratives. Profiling makes apparent similarities and differences, enabling comparison across communities and can be facilitated by an ideal model of open-closed systems. Findings have provided practical outputs (e.g., community profiles) and academic opportunities (e.g., community typologies). The BBS approach enables complex social landscapes to be incorporated in CRTs. This method has proven to be useful, adaptable and to have multidisciplinary appeal.


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Investigación Cualitativa , Ensayos Clínicos Controlados Aleatorios como Asunto/métodos , África Austral , Humanos , Salud Pública , Proyectos de Investigación , Ciencias Sociales/métodos , Sudáfrica , Zambia
13.
Afr J AIDS Res ; 17(1): 72-81, 2018 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-29504507

RESUMEN

Following calls for targeted HIV prevention interventions in so-called "hotspots", we explored subjective perceptions of community members in places considered to be high HIV and tuberculosis (TB) transmission areas and those with low prevalence. Although more people now have access to antiretroviral therapy (ART), some areas are still experiencing high HIV transmission rates, presenting a barrier to the elimination of HIV. A rapid qualitative assessment approach was used to access a sample of 230 people who contributed narratives of their experiences and perceptions of transmission, treatment and prevention of HIV and TB in their communities. Theoretical propositions case study strategy was used to inform and guide the thematic analysis of the data with Research Department of Epidemiology & Public Health, University College London, London, UK. Our results support the concept of linking perceived control to health through the identification of structural factors that increase communities' sense of agency. People in these communities did not feel they had the efficacy to effect change in their milieu. The few socio-economic opportunities promote social mobility in search of better prospects which may have a negative impact on community cohesion and prevention strategies. Communities were more concerned with improving their immediate social and economic situations and prioritised this above the prevention messages. Therefore approaches that focus on changing the structural and environmental barriers to prevention may increase people's perceived control. Multifaceted strategies that address the identified constructs of perceived control may influence the social change necessary to make structural interventions successful.


Asunto(s)
Infecciones por VIH/epidemiología , Percepción , Factores Socioeconómicos , Tuberculosis/epidemiología , Adolescente , Adulto , Anciano , Terapia Antirretroviral Altamente Activa , Femenino , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/prevención & control , Disparidades en Atención de Salud , Humanos , Masculino , Persona de Mediana Edad , Vigilancia de la Población , Prevalencia , Apoyo Social , Tuberculosis/tratamiento farmacológico , Tuberculosis/prevención & control , Adulto Joven
14.
Psychooncology ; 25(8): 913-8, 2016 08.
Artículo en Inglés | MEDLINE | ID: mdl-26602492

RESUMEN

BACKGROUND: The aim of this paper is to understand the process of information disclosure and privacy as patients share their news of lung cancer with significant others. METHODS: Twenty patients with lung cancer and 17 family members/friends accompanying them at diagnosis-giving completed either individual or dyad semi-structured interviews. Initial thematic analysis, then Petronio's Communication Privacy Management theory was used to inform interpretation. RESULTS: Patients described a sense of ownership of the news of their cancer and sought control of how, when and with whom it was shared. Family members expressed a need to follow the patients' rules in sharing this news, which limited their own support systems. Patients and family members had to live within the relational communication boundaries in order to maintain their trusting relationship and avoid potential disruptions. CONCLUSION: Patients as individuals are strongly interlinked with significant others, which impacts on their experience of disclosing private information. This shapes their psychological processes and outcomes impacting on their illness experience. This should be considered when developing interventions to support patients with sharing bad news. Copyright © 2015 John Wiley & Sons, Ltd.


Asunto(s)
Familia/psicología , Neoplasias Pulmonares/psicología , Relaciones Médico-Paciente , Revelación de la Verdad , Emociones , Femenino , Amigos/psicología , Humanos , Masculino , Persona de Mediana Edad , Privacidad , Apoyo Social
15.
BMJ Open ; 14(7): e088992, 2024 Jul 09.
Artículo en Inglés | MEDLINE | ID: mdl-38986556

RESUMEN

INTRODUCTION: Adolescents living with HIV (ALHIV) are an extremely vulnerable population, with the burden of mental health problems carefully documented together with the constraints for receiving timely and adequate management of the problems, especially in rural settings. Problem Management Plus (PM+) is a scalable psychological intervention for individuals impaired by distress in communities exposed to adversity. Initially developed for adult populations, few studies have assessed its potential to address adolescent distress. This study aims to co-adapt PM+ with an adherence component (PM+Adherence) for ALHIV and to evaluate its acceptability and feasibility in rural Kwa-Zulu Natal Province, South Africa. METHODS AND ANALYSIS: We will use a mixed-methods approach over three phases. The first phase will include a realist synthesis and collection of formative data from up to 60 ALHIV, caregivers and healthcare providers to inform the adaptation of WHO PM+, including the components of an adherence module. During the second phase, we will undertake the cultural adaptation of the PM+Adherence intervention. The third phase will involve a hybrid type 3 implementation strategy among ALHIV aged 16-19 years (n=50) to implement and evaluate the feasibility of the culturally co-adapted PM+Adherence. The feasibility indicators to be evaluated include reach, adoption, attrition, implementation and acceptability of the adapted intervention, which will be assessed qualitatively and quantitatively. In addition, we will assess preliminary effectiveness using an intention-to-treat approach on HIV-related indicators and mental health outcomes at baseline, end intervention, 2-month follow-up during the 6-month implementation. DISCUSSION: We expect that the PM+Adherence will be acceptable and can feasibly be delivered by lay counsellors in resource-limited rural KwaZulu-Natal. ETHICS AND DISSEMINATION: Ethical clearance has been obtained from the University of KwaZulu-Natal Biomedical Research Ethics Committee, (BREC/00005743/2023). Dissemination plans include presentations at scientific conferences, peer-reviewed publications and community level.


Asunto(s)
Estudios de Factibilidad , Infecciones por VIH , Humanos , Adolescente , Sudáfrica , Infecciones por VIH/psicología , Adulto Joven , Masculino , Femenino , Población Rural , Intervención Psicosocial/métodos
16.
BMC Med Inform Decis Mak ; 13: 63, 2013 Jun 04.
Artículo en Inglés | MEDLINE | ID: mdl-23734871

RESUMEN

BACKGROUND: The behaviour of doctors and their responses to warnings can inform the effective design of Clinical Decision Support Systems. We used data from a University hospital electronic prescribing and laboratory reporting system with hierarchical warnings and alerts to explore junior doctors' behaviour. The objective of this trial was to establish whether a Junior Doctor Dashboard providing feedback on prescription warning information and laboratory alerting acceptance rates was effective in changing junior doctors' behaviour. METHODS: A mixed methods approach was employed which included a parallel group randomised controlled trial, and individual and focus group interviews. Junior doctors below the specialty trainee level 3 grade were recruited and randomised to two groups. Every doctor (N = 42) in the intervention group was e-mailed a link to a personal dashboard every week for 4 months. Nineteen participated in interviews. The 44 control doctors did not receive any automated feedback. The outcome measures were the difference in responses to prescribing warnings (of two severities) and laboratory alerting (of two severities) between the months before and the months during the intervention, analysed as the difference in performance between the intervention and the control groups. RESULTS: No significant differences were observed in the rates of generating prescription warnings, or in the acceptance of laboratory alarms. However, responses to laboratory alerts differed between the pre-intervention and intervention periods. For the doctors of Foundation Year 1 grade, this improvement was significantly (p = 0.002) greater in the group with access to the dashboard (53.6% ignored pre-intervention compared to 29.2% post intervention) than in the control group (47.9% ignored pre-intervention compared to 47.0% post intervention). Qualitative interview data indicated that while junior doctors were positive about the electronic prescribing functions, they were discriminating in the way they responded to other alerts and warnings given that from their perspective these were not always immediately clinically relevant or within the scope of their responsibility. CONCLUSIONS: We have only been able to provide weak evidence that a clinical dashboard providing individualized feedback data has the potential to improve safety behaviour and only in one of several domains. The construction of metrics used in clinical dashboards must take account of actual work processes. TRIAL REGISTRATION ISRCTN: ISRCTN72253051.


Asunto(s)
Sistemas de Apoyo a Decisiones Clínicas/normas , Retroalimentación , Sistemas de Entrada de Órdenes Médicas/normas , Seguridad del Paciente/normas , Médicos/normas , Prescripciones/normas , Adulto , Femenino , Humanos , Masculino
17.
Glob Public Health ; 18(1): 1953105, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-34259121

RESUMEN

ABSTRACTYoung migrants in sub-Saharan Africa are particularly vulnerable to HIV-acquisition. Despite this, they are consistently under-served by services, with low uptake and engagement. We adopted a community-based participatory research approach to conduct longitudinal qualitative research among 78 young migrants in South Africa and Uganda. Using repeat in-depth interviews and participatory workshops we sought to identify their specific support needs, and to collaboratively design an intervention appropriate for delivery in their local contexts. Applying a protection-risk conceptual framework, we developed a harm reduction intervention which aims to foster protective factors, and thereby nurture resilience, for youth 'on the move' within high-risk settings. Specifically, by establishing peer supporter networks, offering a 'drop-in' resource centre, and by identifying local adult champions to enable a supportive local environment. Creating this supportive edifice, through an accessible and cohesive peer support network underpinned by effective training, supervision and remuneration, was considered pivotal to nurture solidarity and potentially resilience. This practical example offers insights into how researchers may facilitate the co-design of acceptable, sustainable interventions.


Asunto(s)
Infecciones por VIH , Reducción del Daño , Adulto , Humanos , Adolescente , Uganda , Sudáfrica , Investigación Cualitativa , Infecciones por VIH/prevención & control
18.
Glob Public Health ; 18(1): 2229895, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-37431745

RESUMEN

This study aims to examine the experiences of young migrants and the role of uncertainty in their precarious lives. Drawing on data from individual interviews and a workshop with young migrants aged 16-24 years old in KwaZulu-Natal, South Africa, we use uncertainty as a theoretical lens, to illustrate the ways in which young migrants' experiences provide meaning for them and give them an opportunity to assess, and plan for better opportunities despite the stark outlook. Thematic analysis was used to examine the multidimensionality of socio-spatial identities in young migrants. The findings illustrate how young migrants hustle for opportunities to lead valuable lives in the face of uncertainty. The implications highlight how attending to the complex intersectional nuances of uncertainty can serve as an enabler of aspirations, alongside essential structural factors influencing migration among young people brought up in rural communities. However, in proposing this alternative view of positive uncertainty, the structural violence experienced by these young people should not be overlooked and should be addressed as per their context.


Asunto(s)
Población Rural , Migrantes , Humanos , Adolescente , Adulto Joven , Adulto , Sudáfrica , Incertidumbre , Violencia
19.
Med Teach ; 34(4): e229-35, 2012.
Artículo en Inglés | MEDLINE | ID: mdl-22455714

RESUMEN

BACKGROUND: Entering the clinical environment is potentially stressful for junior medical students. AIMS: We evaluated first-year medical student feedback on a peer-mentored 'Hospital Orientation Day' designed to provide insight into future clinical training. METHOD: Using a mixed methodology approach data were collected from first-year medical students. Responses to a questionnaire were used to develop a topic guide for focus groups held the next academic year. The questionnaire was completed by 230 first-year students and 32 second years participated in the interviews. Thematic analysis was used to draw conclusions. RESULTS: Analysis of questionnaire responses indicated that students gained insight into future learning. Focus groups then generated five themes: (1) entering the hospital without fear, (2) linking the present with the future, (3) understanding the culture of learning in the clinical years, (4) a 'Backstage Pass' to the clinical world and (5) peer mentors make or break the day. CONCLUSIONS: Using peer mentors during the Hospital Orientation Day allowed insight into future learning. We highlight the importance of student Mentors in the success of hospital orientation. To maximise the benefits for first years, we recommend a mentor selection procedure, mentor training opportunities and incentives to optimise mentor performance.


Asunto(s)
Educación de Pregrado en Medicina/métodos , Hospitales de Enseñanza/métodos , Mentores , Grupo Paritario , Estudiantes de Medicina/psicología , Adulto , Educación de Pregrado en Medicina/organización & administración , Femenino , Grupos Focales , Hospitales de Enseñanza/organización & administración , Humanos , Entrevistas como Asunto , Masculino , Orientación , Estrés Psicológico , Reino Unido , Adulto Joven
20.
Vaccines (Basel) ; 10(3)2022 Mar 10.
Artículo en Inglés | MEDLINE | ID: mdl-35335047

RESUMEN

Despite the significant benefits of maternal immunisation, uptake remains low in many parts of the world. In this qualitative study, we aimed to assess the factors that influence pregnant women's decision to engage with maternal immunisation in rural KwaZulu-Natal, South Africa. We conducted in-depth interviews with a total of 28 purposively sampled pregnant women and key informants using semi-structured topic guides. Data analysis was conducted using a modified Health Belief Model framework that included constructs of barriers to action, modifying factors of cue to action and perceived social norms. The findings show that traditional customs and institutional barriers such as low-quality health service delivery, long queues, and distance to the health facilities, immunisation vaccine stockouts and low levels of maternal knowledge influence the choice and decision to engage with maternal immunisation. Understanding health-related behaviours and addressing barriers to care is important in facilitating vaccination uptake. This study contributes to the understanding of maternal immunisation uptake in low-resource settings.

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