Browsing by Subject "Qualitative research"

Now showing 1 - 18 of 18
  • No Thumbnail Available
    Item
    Open Access
    A qualitative study on South African policies governing youth access to alcohol
    (2025) Matee, Larona; Van Niekerk, Lauren-Jayne
    Alcohol abuse among youth continues to be a major concern worldwide in the 21st century. It has been suggested in various studies that the age of onset is decreasing rapidly and that admissions to treatment centres are increasing as young people fall prey to substance abuse. This raises serious concerns as alcohol abuse is linked to adverse health outcomes such as physical and mental health problems, social and legal consequences, as well as economic burdens. Zwelihle, a township in Hermanus, is one such community that faces various social issues, including high rates of alcohol abuse amongst the youth. This study used a qualitative research design based on the interpretivist position. Data were collected from twenty participants using a semi-structured interview guide. Fifteen young participants (aged 18 to 35) took part in focus groups, and five professionals with experience working with Zwelihle's youth were interviewed one-on-one. Data were analyzed following Tesch's qualitative data analysis steps. The study results revealed that factors such as a lack of parental involvement, unemployment, socialisation and culture as well as the availability of limited recreational activities were identified to be prominent factors which led Zwelihle's youth to alcohol and the abuse thereof. Other factors, such as alcohol outlet concentration and density in Zwelihle were argued to be one of the factors that facilitates easy access to alcohol in Zwelihle. This is also caused by the plight which comes with heightened levels of unemployment in South Africa, which drives people to alcohol dependency to forget and escape their harsh realities, or people open shebeens as a response to the harsh economic realities. At the backdrop of these concerns were the various alcohol trading policies, which were said to be ineffective in regulating the alcohol trade, and which have resulted in almost every street in Zwelihle having someone trading in alcohol and selling it to young people. One of the reasons participants cited for the failing alcohol policies was due to unreliable law enforcement agencies who were perceived to be corrupt
  • Thumbnail Image
    Item
    Open Access
    Applying GRADE-CERQual to qualitative evidence synthesis findings: introduction to the series
    (BioMed Central, 2018-01-25) Lewin, Simon; Booth, Andrew; Glenton, Claire; Munthe-Kaas, Heather; Rashidian, Arash; Wainwright, Megan; Bohren, Meghan A; Tunçalp, Özge; Colvin, Christopher J; Garside, Ruth; Carlsen, Benedicte; Langlois, Etienne V; Noyes, Jane
    The GRADE-CERQual (‘Confidence in the Evidence from Reviews of Qualitative research’) approach provides guidance for assessing how much confidence to place in findings from systematic reviews of qualitative research (or qualitative evidence syntheses). The approach has been developed to support the use of findings from qualitative evidence syntheses in decision-making, including guideline development and policy formulation. Confidence in the evidence from qualitative evidence syntheses is an assessment of the extent to which a review finding is a reasonable representation of the phenomenon of interest. CERQual provides a systematic and transparent framework for assessing confidence in individual review findings, based on consideration of four components: (1) methodological limitations, (2) coherence, (3) adequacy of data, and (4) relevance. A fifth component, dissemination (or publication) bias, may also be important and is being explored. As with the GRADE (Grading of Recommendations Assessment, Development, and Evaluation) approach for effectiveness evidence, CERQual suggests summarising evidence in succinct, transparent, and informative Summary of Qualitative Findings tables. These tables are designed to communicate the review findings and the CERQual assessment of confidence in each finding. This article is the first of a seven-part series providing guidance on how to apply the CERQual approach. In this paper, we describe the rationale and conceptual basis for CERQual, the aims of the approach, how the approach was developed, and its main components. We also outline the purpose and structure of this series and discuss the growing role for qualitative evidence in decision-making. Papers 3, 4, 5, 6, and 7 in this series discuss each CERQual component, including the rationale for including the component in the approach, how the component is conceptualised, and how it should be assessed. Paper 2 discusses how to make an overall assessment of confidence in a review finding and how to create a Summary of Qualitative Findings table. The series is intended primarily for those undertaking qualitative evidence syntheses or using their findings in decision-making processes but is also relevant to guideline development agencies, primary qualitative researchers, and implementation scientists and practitioners.
  • Thumbnail Image
    Item
    Open Access
    Applying GRADE-CERQual to qualitative evidence synthesis findings–paper 6: how to assess relevance of the data
    (BioMed Central, 2018-01-25) Noyes, Jane; Booth, Andrew; Lewin, Simon; Carlsen, Benedicte; Glenton, Claire; Colvin, Christopher J; Garside, Ruth; Bohren, Meghan A; Rashidian, Arash; Wainwright, Megan; Tunςalp, Özge; Chandler, Jacqueline; Flottorp, Signe; Pantoja, Tomas; Tucker, Joseph D; Munthe-Kaas, Heather
    Background: The GRADE-CERQual (Confidence in Evidence from Reviews of Qualitative research) approach has been developed by the GRADE (Grading of Recommendations Assessment, Development and Evaluation) Working Group. The approach has been developed to support the use of findings from qualitative evidence syntheses in decision-making, including guideline development and policy formulation. CERQual includes four components for assessing how much confidence to place in findings from reviews of qualitative research (also referred to as qualitative evidence syntheses): (1) methodological limitations, (2) coherence, (3) adequacy of data and (4) relevance. This paper is part of a series providing guidance on how to apply CERQual and focuses on CERQual’s relevance component. Methods: We developed the relevance component by searching the literature for definitions, gathering feedback from relevant research communities and developing consensus through project group meetings. We tested the CERQual relevance component within several qualitative evidence syntheses before agreeing on the current definition and principles for application. Results: When applying CERQual, we define relevance as the extent to which the body of data from the primary studies supporting a review finding is applicable to the context (perspective or population, phenomenon of interest, setting) specified in the review question. In this paper, we describe the relevance component and its rationale and offer guidance on how to assess relevance in the context of a review finding. This guidance outlines the information required to assess relevance, the steps that need to be taken to assess relevance and examples of relevance assessments. Conclusions: This paper provides guidance for review authors and others on undertaking an assessment of relevance in the context of the CERQual approach. Assessing the relevance component requires consideration of potentially important contextual factors at an early stage in the review process. We expect the CERQual approach, and its individual components, to develop further as our experiences with the practical implementation of the approach increase.
  • Thumbnail Image
    Item
    Open Access
    Applying GRADE-CERQual to qualitative evidence synthesis findings—paper 2: how to make an overall CERQual assessment of confidence and create a Summary of Qualitative Findings table
    (BioMed Central, 2018-01-25) Lewin, Simon; Bohren, Meghan; Rashidian, Arash; Munthe-Kaas, Heather; Glenton, Claire; Colvin, Christopher J; Garside, Ruth; Noyes, Jane; Booth, Andrew; Tunçalp, Özge; Wainwright, Megan; Flottorp, Signe; Tucker, Joseph D; Carlsen, Benedicte
    Background: The GRADE-CERQual (Confidence in Evidence from Reviews of Qualitative research) approach has been developed by the GRADE (Grading of Recommendations Assessment, Development and Evaluation) Working Group. The approach has been developed to support the use of findings from qualitative evidence syntheses in decision making, including guideline development and policy formulation. CERQual includes four components for assessing how much confidence to place in findings from reviews of qualitative research (also referred to as qualitative evidence syntheses): (1) methodological limitations, (2) coherence, (3) adequacy of data and (4) relevance. This paper is part of a series providing guidance on how to apply CERQual and focuses on making an overall assessment of confidence in a review finding and creating a CERQual Evidence Profile and a CERQual Summary of Qualitative Findings table. Methods: We developed this guidance by examining the methods used by other GRADE approaches, gathering feedback from relevant research communities and developing consensus through project group meetings. We then piloted the guidance on several qualitative evidence syntheses before agreeing on the approach. Results: Confidence in the evidence is an assessment of the extent to which a review finding is a reasonable representation of the phenomenon of interest. Creating a summary of each review finding and deciding whether or not CERQual should be used are important steps prior to assessing confidence. Confidence should be assessed for each review finding individually, based on the judgements made for each of the four CERQual components. Four levels are used to describe the overall assessment of confidence: high, moderate, low or very low. The overall CERQual assessment for each review finding should be explained in a CERQual Evidence Profile and Summary of Qualitative Findings table. Conclusions: Structuring and summarising review findings, assessing confidence in those findings using CERQual and creating a CERQual Evidence Profile and Summary of Qualitative Findings table should be essential components of undertaking qualitative evidence syntheses. This paper describes the end point of a CERQual assessment and should be read in conjunction with the other papers in the series that provide information on assessing individual CERQual components.
  • Thumbnail Image
    Item
    Open Access
    Applying GRADE-CERQual to qualitative evidence synthesis findings—paper 3: how to assess methodological limitations
    (BioMed Central, 2018-01-25) Munthe-Kaas, Heather; Bohren, Meghan A; Glenton, Claire; Lewin, Simon; Noyes, Jane; Tunçalp, Özge; Booth, Andrew; Garside, Ruth; Colvin, Christopher J; Wainwright, Megan; Rashidian, Arash; Flottorp, Signe; Carlsen, Benedicte
    Abstract Background The GRADE-CERQual (Confidence in Evidence from Reviews of Qualitative research) approach has been developed by the GRADE (Grading of Recommendations Assessment, Development and Evaluation) Working Group. The approach has been developed to support the use of findings from qualitative evidence syntheses in decision-making, including guideline development and policy formulation. CERQual includes four components for assessing how much confidence to place in findings from reviews of qualitative research (also referred to as qualitative evidence syntheses): (1) methodological limitations, (2) coherence, (3) adequacy of data and (4) relevance. This paper is part of a series providing guidance on how to apply CERQual and focuses on CERQual’s methodological limitations component. Methods We developed the methodological limitations component by searching the literature for definitions, gathering feedback from relevant research communities and developing consensus through project group meetings. We tested the CERQual methodological limitations component within several qualitative evidence syntheses before agreeing on the current definition and principles for application. Results When applying CERQual, we define methodological limitations as the extent to which there are concerns about the design or conduct of the primary studies that contributed evidence to an individual review finding. In this paper, we describe the methodological limitations component and its rationale and offer guidance on how to assess methodological limitations of a review finding as part of the CERQual approach. This guidance outlines the information required to assess methodological limitations component, the steps that need to be taken to assess methodological limitations of data contributing to a review finding and examples of methodological limitation assessments. Conclusions This paper provides guidance for review authors and others on undertaking an assessment of methodological limitations in the context of the CERQual approach. More work is needed to determine which criteria critical appraisal tools should include when assessing methodological limitations. We currently recommend that whichever tool is used, review authors provide a transparent description of their assessments of methodological limitations in a review finding. We expect the CERQual approach and its individual components to develop further as our experiences with the practical implementation of the approach increase.
  • Thumbnail Image
    Item
    Open Access
    Applying GRADE-CERQual to qualitative evidence synthesis findings—paper 4: how to assess coherence
    (BioMed Central, 2018-01-25) Colvin, Christopher J; Garside, Ruth; Wainwright, Megan; Munthe-Kaas, Heather; Glenton, Claire; Bohren, Meghan A; Carlsen, Benedicte; Tunçalp, Özge; Noyes, Jane; Booth, Andrew; Rashidian, Arash; Flottorp, Signe; Lewin, Simon
    Background: The GRADE-CERQual (Grading of Recommendations Assessment, Development and EvaluationConfidence in Evidence from Reviews of Qualitative research) approach has been developed by the GRADE working group. The approach has been developed to support the use of findings from qualitative evidence syntheses in decision-making, including guideline development and policy formulation. CERQual includes four components for assessing how much confidence to place in findings from reviews of qualitative research (also referred to as qualitative evidence syntheses): (1) methodological limitations, (2) relevance, (3) coherence and (4) adequacy of data. This paper is part of a series providing guidance on how to apply CERQual and focuses on CERQual’s coherence component. Methods: We developed the coherence component by searching the literature for definitions, gathering feedback from relevant research communities and developing consensus through project group meetings. We tested the CERQual coherence component within several qualitative evidence syntheses before agreeing on the current definition and principles for application. Results: When applying CERQual, we define coherence as how clear and cogent the fit is between the data from the primary studies and a review finding that synthesises that data. In this paper, we describe the coherence component and its rationale and offer guidance on how to assess coherence in the context of a review finding as part of the CERQual approach. This guidance outlines the information required to assess coherence, the steps that need to be taken to assess coherence and examples of coherence assessments. Conclusions: This paper provides guidance for review authors and others on undertaking an assessment of coherence in the context of the CERQual approach. We suggest that threats to coherence may arise when the data supporting a review finding are contradictory, ambiguous or incomplete or where competing theories exist that could be used to synthesise the data. We expect the CERQual approach, and its individual components, to develop further as our experiences with the practical implementation of the approach increase.
  • Thumbnail Image
    Item
    Open Access
    Applying GRADE-CERQual to qualitative evidence synthesis findings—paper 5: how to assess adequacy of data
    (BioMed Central, 2018-01-25) Glenton, Claire; Carlsen, Benedicte; Lewin, Simon; Munthe-Kaas, Heather; Colvin, Christopher J; Tunçalp, Özge; Bohren, Meghan A; Noyes, Jane; Booth, Andrew; Garside, Ruth; Rashidian, Arash; Flottorp, Signe; Wainwright, Megan
    Background: The GRADE-CERQual (Confidence in Evidence from Reviews of Qualitative research) approach has been developed by the GRADE (Grading of Recommendations Assessment, Development and Evaluation) working group. The approach has been developed to support the use of findings from qualitative evidence syntheses in decision-making, including guideline development and policy formulation. CERQual includes four components for assessing how much confidence to place in findings from reviews of qualitative research (also referred to as qualitative evidence syntheses): (1) methodological limitations; (2) coherence; (3) adequacy of data; and (4) relevance. This paper is part of a series providing guidance on how to apply CERQual and focuses on CERQual’s adequacy of data component. Methods: We developed the adequacy of data component by searching the literature for definitions, gathering feedback from relevant research communities and developing consensus through project group meetings. We tested the CERQual adequacy of data component within several qualitative evidence syntheses before agreeing on the current definition and principles for application. Results: When applying CERQual, we define adequacy of data as an overall determination of the degree of richness and the quantity of data supporting a review finding. In this paper, we describe the adequacy component and its rationale and offer guidance on how to assess data adequacy in the context of a review finding as part of the CERQual approach. This guidance outlines the information required to assess data adequacy, the steps that need to be taken to assess data adequacy, and examples of adequacy assessments. Conclusions: This paper provides guidance for review authors and others on undertaking an assessment of adequacy in the context of the CERQual approach. We approach assessments of data adequacy in terms of the richness and quantity of the data supporting each review finding, but do not offer fixed rules regarding what constitutes sufficiently rich data or an adequate quantity of data. Instead, we recommend that this assessment is made in relation to the nature of the finding. We expect the CERQual approach, and its individual components, to develop further as our experiences with the practical implementation of the approach increase.
  • Thumbnail Image
    Item
    Open Access
    Can public sector community health workers deliver a nurturing care intervention in South Africa? The Amagugu Asakhula feasibility study
    (2021-02-27) Klingberg, Sonja; van Sluijs, Esther M F; Jong, Stephanie T; Draper, Catherine E
    Background Nurturing care interventions have the potential to promote health and development in early childhood. Amagugu Asakhula was designed to promote developmentally important dietary and movement behaviours among children of preschool age (3–5 years) in South Africa. An initial formative study in Cape Town found the intervention to be feasible and acceptable when delivered by community health workers (CHWs) linked to a community-based organisation. This study evaluated the delivery of the Amagugu Asakhula intervention by CHWs linked to a public sector primary health care facility in Soweto, as this mode of delivery could have more potential for sustainability and scalability. Methods A qualitative design was utilised to assess feasibility, acceptability, adoption, appropriateness, implementation, fidelity and context. CHWs (n = 14) delivered the intervention to caregivers (n = 23) of preschool-age children in Soweto over 6 weeks. Following the completion of the intervention, focus group discussions were held with CHWs and caregivers. Further data were obtained through observations, study records and key informant interviews (n = 5). Data were analysed using deductive thematic analysis guided by a process evaluation framework. Results The delivery of the Amagugu Asakhula intervention through CHWs linked to a primary health care facility in Soweto was not found to be feasible due to contextual challenges such as late payment of salaries influencing CHW performance and willingness to deliver the intervention. CHWs expressed dissatisfaction with their general working conditions and were thus reluctant to take on new tasks. Despite barriers to successful delivery, the intervention was well received by both CHWs and caregivers and was considered a good fit with the CHWs’ scope of work. Conclusions Based on these findings, delivery of the Amagugu Asakhula intervention is not recommended through public sector CHWs in South Africa. This feasibility study informs the optimisation of implementation and supports further testing of the intervention’s effectiveness when delivered by CHWs linked to community-based organisations. The present study further demonstrates how implementation challenges can be identified through qualitative feasibility studies and subsequently addressed prior to large-scale trials, avoiding the wasting of research and resources.
  • Thumbnail Image
    Item
    Open Access
    Distinctive nursing practices in working with mothers to care for hospitalised children at a district hospital in KwaZulu-Natal, South Africa: a descriptive observational study
    (2020-04-19) North, Natasha; Leonard, Angela; Bonaconsa, Candice; Duma, Thobeka; Coetzee, Minette
    Background The presence of family members and their active involvement in caring for hospitalised children is an established practice in many African paediatric settings, with family members often regarded as a resource. This aspect of African paediatric nursing practice lacks formal expression or a clear conceptual basis, and difficulties arise when applying concepts of family involvement originating from the culturally distinct practice environments of higher resourced settings including Europe and America. The aim of this study was to articulate a nurse-led practice innovation intended to facilitate family involvement in the care of hospitalised children, observed in a paediatric inpatient ward in a district hospital in rural KwaZulu-Natal, South Africa. Methods A qualitative case study design was used. Data collection included visual research methods (graphic facilitation, sociograms and photo-elicitation) as well as a focus group, interviews and practice observation. Activities associated with 20 nurses and 22 mother-child dyads were observed. Data were subjected to content analysis, with Standards for Reporting Qualitative Research (SRQR) applied. Results Findings relate to six aspects of practice, categorised thematically as: preserving the mother-child pair; enabling continuous presence; psychological support and empathy; sharing knowledge; mothers as a resource; and belief and trust. Conclusion The nursing practices and organisational policies observed in this setting relating to the facilitation of continuous maternal presence represent a distinctive nursing practice innovation. This deliberate practice contrasts with models of care provision which originate in higher resourced settings including Europe and America, such as Family Centred Care, and contrasts with informal practices in local African settings which tolerate the presence of mothers in other settings, as well as local institutional policies which limit mothers’ presence to varying extents.
  • No Thumbnail Available
    Item
    Open Access
    Exploring the management and mitigation of conflict between land owners and wind and solar PV developers. Similarly, how conflict resolution can be used to manage this interaction
    (2025) Brimble, Benjamin; Van Schalkwyk, Catherine
    Wind farms, as one renewable energy technology, have an increasingly important role to play in the context of a rapid, and world-wide, move towards renewable energy. As wind farm projects are implemented, they will have an impact on an increasing number of communities around the country. It is mandatory for any large infrastructure project such as a wind farm to undergo an Environmental Impact Assessment (“EIA”) process. This must include a public participation component, wherein members of the effected community are allowed the opportunity to provide feedback and comment on the proposed development. This dissertation explores the link between subsequent community acceptance of wind farms and the initial sentiments expressed in project feasibility documentation, specifically EIA records and public participation processes. If community approval is inadequate, the implementation of wind farm projects will be in jeopardy. It is therefore critical to better understand the driver of community acceptance. The study follows a qualitative approach comprising a multiple case study design. Data is collected through semi-structured interviews with landowners adjacent to two operational wind farm projects, located in South Africa's Eastern and Western Cape provinces. This is combined with a comprehensive analysis of project EIA documentation. The results show a material contrast between subsequent acceptance levels and initial community sentiments. While both wind farms now demonstrate high levels of community acceptance, this differs significantly from the "cautious pessimism" evident in historical EIA records. Cross-case analysis between the two projects highlight how factors such as cumulative impacts of multiple wind farms in an area, socio-economic conditions, and construction management practices significantly influence acceptance levels. The results show that while EIAs provide an important baseline for predicting community acceptance of wind farm projects, they likely do not fully capture the dynamic factors affecting long-term community sentiment. The study illustrates that construction phase impacts, although temporary in nature, plays a crucial role in shaping community perceptions. This was not fully anticipated in the EIA documentation. These findings contribute to the broader understanding of how community acceptance evolves throughout a wind farm's lifecycle and suggest that EIAs should be viewed as living documents rather than static predictions of a particular point in time. The research recommends implementing ongoing stakeholder engagement beyond the initial EIA phase, developing adaptive management strategies to address emerging community concerns, and enhancing public participation methods to better prepare communities for wind farm development impacts.
  • Thumbnail Image
    Item
    Open Access
    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.
  • Thumbnail Image
    Item
    Open Access
    Intervention development of a brief messaging intervention for a randomised controlled trial to improve diabetes treatment adherence in sub-Saharan Africa
    (2021-01-15) Leon, Natalie; Namadingo, Hazel; Bobrow, Kirsty; Cooper, Sara; Crampin, Amelia; Pauly, Bruno; Levitt, Naomi; Farmer, Andrew
    Background Brief messaging interventions, including Short Message Service (SMS) text-messages, delivered via mobile device platforms, show promise to support and improve treatment adherence. To understand how these interventions work, and to facilitate transparency, we need clear descriptions of the intervention development process. Method We describe and reflect on the process of designing and pretesting an evidence- and theory-informed brief messaging intervention, to improve diabetes treatment adherence in sub-Saharan Africa. We followed the stepwise approach recommended by the Medical Research Council, United Kingdom (MRC UK) Framework for Development and Evaluation of Complex Health Interventions and guidance for mobile health intervention development. Results We used a four-phase, iterative approach that first generated primary and secondary evidence on the lived experience of diabetes, diabetes treatment services and mobile-phone use. Second, we designed a type 2 diabetes-specific, brief text-message library, building on our previous hypertension text-message library, as well as drawing on the primary and secondary data from phase one, and on expert opinion. We then mapped the brief text-messages onto behaviour change (COM-B) theoretical constructs. Third, we refined and finalised the newly developed brief text-message library through stakeholder consultation and translated it into three local languages. Finally, we piloted the intervention by pre-testing the automated delivery of the brief text-messages in the trial sites in Malawi and South Africa. The final SMS text Adherence suppoRt for people with type 2 diabetes (StAR2D) intervention was tested in a randomised controlled trial in Malawi and South Africa (trial registration: ISRCTN70768808 ). Conclusion The complexity of public health interventions requires that we give more attention to intervention development work. Our documentation and reflection on the StAR2D intervention development process promotes transparency, replicability, assessment of intervention quality, and comparison with other studies.
  • Thumbnail Image
    Item
    Open Access
    “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.
  • Thumbnail Image
    Item
    Open Access
    Mental health care providers' suggestions for suicide prevention among people with substance use disorders in South Africa: a qualitative study
    (BioMed Central, 2018-12-07) Goldstone, Daniel; Bantjes, Jason; Dannatt, Lisa
    Abstract Background People with substance use disorders (PWSUDs) are a clearly delineated group at high risk for suicidal behaviour. Expert consensus is that suicide prevention strategies should be culturally sensitive and specific to particular populations and socio-cultural and economic contexts. The aim of this study was to explore mental health care providers' context- and population-specific suggestions for suicide prevention when providing services for PWSUDs in the Western Cape, South Africa. Methods Qualitative data were collected via in-depth, semi-structured interviews with 18 mental health care providers providing services to PWSUDs in the public and private health care sectors of the Western Cape, South Africa. Data were analysed inductively using thematic analysis. Results Participants highlighted the importance of providing effective mental health care, transforming the mental health care system, community interventions, and early intervention, in order to prevent suicide amongst PWSUDs. Many of their suggestions reflected basic principles of effective mental health care provision. However, participants also suggested further training in suicide prevention for mental health care providers, optimising the use of existing health care resources, expanding service provision for suicidal PWSUDs, improving policies and regulations for the treatment of substance use disorders, provision of integrated health care, and focusing on early intervention to prevent suicide. Conclusions Training mental health care providers in suicide prevention must be augmented by addressing systemic problems in the provision of mental health care and contextual problems that make suicide prevention challenging. Many of the suggestions offered by these participants depart from individualist, biomedical approaches to suicide prevention to include a more contextual view of suicide prevention. A re-thinking of traditional bio-medical approaches to suicide prevention may be warranted in order to reduce suicide among PWSUDs.
  • No Thumbnail Available
    Item
    Open Access
    Psychiatric genetic counselling: current landscape and opinions of psychiatric healthcare professionals in public hospitals in Cape Town, South Africa
    (2025) Ellis, Lize; Laing, Nakita; Dalvie, Shareefa; Stein, Dan
    Psychiatric genetic counselling: Current landscape and opinions of psychiatric healthcare professionals in public hospitals in Cape Town, South Africa Psychiatric conditions are common, and psychiatric genetic counselling (PGC) aims to help people understand their, or a family member's, mental illness better, as well as help them understand the factors that can contribute to the development of a mental illness. However, PGC services are not implemented routinely despite reported patient benefits of increased patient empowerment and self-efficacy. This study serves as a pilot project to investigate current practices of mental illness counselling services, focusing on aetiology, provided by psychiatric healthcare professionals at a single unit in the public health sector in Cape Town, South Africa. A pragmatic qualitative research approach, using semi-structured interviews, was used to explore the questions patients ask in terms of recurrence and causes of their mental illness, as well as healthcare provider's (HCPs) opinions on offering a PGC service. Ten interviews were thematically analysed. Results showed that PGC is not being routinely implemented in psychiatric consultations, patients and families have limited genetic knowledge, and family members frequently ask about the mental health condition and its causes. Psychiatric HCPs seemed to believe PGC is likely to be beneficial to the patient, their families and mental health services, and would use such a service if available to them. However, there were several perceived barriers to establishing a PGC service, such as limited resources and available time, which makes a PGC service unfeasible at this point. These results will contribute to the body of knowledge on PGC (such as potential applications, benefits and obstacles, and acceptability of PGC) and may serve as a starting point to considering the implementation of a PGC service in Cape Town, South Africa.
  • No Thumbnail Available
    Item
    Open Access
    Psychiatric genetic counselling: current landscape and opinions of psychiatric healthcare professionals in public hospitals in Cape Town, South Africa
    (2025) Ellis, Lize; Laing, Nakita; Dalvie, Shareefa; Stein, Dan
    Psychiatric genetic counselling: Current landscape and opinions of psychiatric healthcare professionals in public hospitals in Cape Town, South Africa Psychiatric conditions are common, and psychiatric genetic counselling (PGC) aims to help people understand their, or a family member's, mental illness better, as well as help them understand the factors that can contribute to the development of a mental illness. However, PGC services are not implemented routinely despite reported patient benefits of increased patient empowerment and self-efficacy. This study serves as a pilot project to investigate current practices of mental illness counselling services, focusing on aetiology, provided by psychiatric healthcare professionals at a single unit in the public health sector in Cape Town, South Africa. A pragmatic qualitative research approach, using semi-structured interviews, was used to explore the questions patients ask in terms of recurrence and causes of their mental illness, as well as healthcare provider's (HCPs) opinions on offering a PGC service. Ten interviews were thematically analysed. Results showed that PGC is not being routinely implemented in psychiatric consultations, patients and families have limited genetic knowledge, and family members frequently ask about the mental health condition and its causes. Psychiatric HCPs seemed to believe PGC is likely to be beneficial to the patient, their families and mental health services, and would use such a service if available to them. However, there were several perceived barriers to establishing a PGC service, such as limited resources and available time, which makes a PGC service unfeasible at this point. These results will contribute to the body of knowledge on PGC (such as potential applications, benefits and obstacles, and acceptability of PGC) and may serve as a starting point to considering the implementation of a PGC service in Cape Town, South Africa.
  • Thumbnail Image
    Item
    Open Access
    “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.
  • Thumbnail Image
    Item
    Open Access
    Synthesizing qualitative and quantitative evidence on non-financial access barriers: implications for assessment at the district level
    (BioMed Central Ltd, 2015) O'Connell, Thomas; Bedford, K.; Thiede, Michael; McIntyre, Di
    INTRODUCTION: A key element of the global drive to universal health coverage is ensuring access to needed health services for everyone, and to pursue this goal in an equitable way. This requires concerted efforts to reduce disparities in access through understanding and acting on barriers facing communities with the lowest utilisation levels. Financial barriers dominate the empirical literature on health service access. Unless the full range of access barriers are investigated, efforts to promote equitable access to health care are unlikely to succeed. This paper therefore focuses on exploring the nature and extent of non-financial access barriers. METHODS: We draw upon two structured literature reviews on barriers to access and utilization of maternal, newborn and child health services in Ghana, Bangladesh, Vietnam and Rwanda. One review analyses access barriers identified in published literature using qualitative research methods; the other in published literature using quantitative analysis of household survey data. We then synthesised the key qualitative and quantitative findings through a conjoint iterative analysis. RESULTS: Five dominant themes on non-financial access barriers were identified: ethnicity; religion; physical accessibility; decision-making, gender and autonomy; and knowledge, information and education. The analysis highlighted that non-financial factors pose considerable barriers to access, many of which relate to the acceptability dimension of access and are challenging to address. Another key finding is that quantitative research methods, while yielding important findings, are inadequate for understanding non-financial access barriers in sufficient detail to develop effective responses. Qualitative research is critical in filling this gap. The analysis also indicates that the nature of non-financial access barriers vary considerably, not only between countries but also between different communities within individual countries. CONCLUSIONS: To adequately understand access barriers as a basis for developing effective strategies to address them, mixed-methods approaches are required. From an equity perspective, communities with the lowest utilisation levels should be prioritised and the access barriers specific to that community identified. It is, therefore, critical to develop approaches that can be used at the district level to diagnose and act upon access barriers if we are to pursue an equitable path to universal health coverage.