scholarly journals Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Dimpho Ralefala ◽  
Mary Kasule ◽  
Ambroise Wonkam ◽  
Mogomotsi Matshaba ◽  
Jantina de Vries
Keyword(s):  
Genetic Research ◽  
Research Participation ◽  
Ethical Question ◽  
Group Discussions ◽  
Future Studies ◽  
Research Results ◽  
Genomic Study ◽  
Genomics Research ◽  
Depth Interviews ◽  
Parents And Caregivers

Abstract Background A key ethical question in genomics research relates to whether individual genetic research results should be disclosed to research participants and if so, which results are to be disclosed, by whom and when. Whilst this issue has received only scarce attention in African bioethics discourse, the extension of genomics research to the African continent has brought it into sharp focus. Methods In this qualitative study, we examined the views of adolescents, parents and caregivers participating in a paediatric and adolescent HIV-TB genomic study in Botswana on how solidarity and reciprocity obligations could guide decisions about feedback of individual genetic research results. Data were collected using deliberative focus group discussions and in-depth interviews. Results Findings from 93 participants (44 adolescents and 49 parents and caregivers) demonstrated the importance of considering solidarity and reciprocity obligations in decisions about the return of individual genetic research results to participants. Participants viewed research participation as a mutual relationship and expressed that return of research results would be one way in which research participation could be reciprocated. They noted that when reciprocity obligations are respected, participants feel valued and not respecting reciprocity expectations could undermine participant trust and participation in future studies. Conclusions We conclude that expectations of solidarity and reciprocity could translate into an obligation to feedback selected individual genetic research results in African genomics research.

scholarly journals Participants’ Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana

2021 ◽  
Vol 16 (5) ◽  
pp. 525-536
Author(s):  
Dimpho Ralefala ◽  
Mary Kasule ◽  
Olivia P. Matshabane ◽  
Ambroise Wonkam ◽  
Mogomotsi Matshaba ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Ethical Issue ◽  
Genetic Research ◽  
Research Results ◽  
Genomic Study ◽  
Genomics Research ◽  
Almost All ◽  
To Receive ◽  
Genetic Results

The feedback of individual results of genomics research is an ethical issue. However, which genetic results African participants would like to receive and why, remains unclear. A qualitative study was conducted to collect data from 44 adolescents and 49 parents/caregivers of adolescents enrolled in a genomic study in Botswana. Almost all the participants wanted to receive genetic results. Parents and caregivers wanted to receive results across all categories of genetic conditions discussed in the study, while adolescents were reluctant to receive results for severe, non-preventable, and unactionable conditions. Participants expressed different reasons for wanting feedback of results, including for awareness, improving lifestyle, accepting one’ situation, and preparing for the future. Our findings also reveal that participants’ context, relations, and empowerment are important to consider in interpreting their preferences for feedback of results.

scholarly journals Preferences and Expectations of Feedback of Individual Genetic Research Results in African Genomics: Views of South African Parents of Children With Neurodevelopmental Conditions

2020 ◽  
Author(s):  
Olivia Precious Matshabane ◽  
Cleo A Albertus ◽  
Marlyn C Faure ◽  
Dimpho Ralefala ◽  
Kirsten A Donald ◽  
...  
Keyword(s):  
South African ◽  
Genetic Research ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Research Results ◽  
Lifestyle Choices ◽  
Genomics Research ◽  
Psychological Harm ◽  
To Receive ◽  
Genetic Results

Abstract BackgroundGenomic medicine is expanding at an exponential pace across the globe and increased access to genome analysis has led to greater generations of genetic results with specific relevance to individuals. AimThis study aims to explore preferences and expectations of feedback of individual genetic research results among parents of children with neurodevelopmental conditions. MethodsFollowing a qualitative approach, we conducted four deliberative focus group discussions with (n=27) South African parents of children involved in genomics research on neurodevelopmental conditions. ResultsMost participants expressed a strong interest in receiving individual genetic results regardless of severity, actionability and preventability. These results were viewed as valuable because they could empower or emancipate individuals, families and communities. Receiving risk information was also believed to motivate healthier lifestyle choices. However, some participants were uncertain or articulated a desire not to receive results due to fears of anxiety or psychological harm. In addition, participants expected to receive results as a demonstration of respect from researchers and articulated it as an act to build trust between researchers and participants. ConclusionsInternationally, a debate continues around whether individual genetic results should or should not be fed back to participants of research studies. In Africa, there is scant literature which has investigated this question and no policies to guide researchers. This study provides a basis of empirical data on perspectives of African participants which could inform work on the development of a consolidated approach to the feedback of incidental findings in the continent.

Perceived consumption vulnerability of elderly citizens

2017 ◽  
Vol 20 (4) ◽  
pp. 469-485 ◽  
Author(s):  
Subhadip Roy ◽  
Shamindra Nath Sanyal
Keyword(s):  
The Elderly ◽  
Search Cost ◽  
Policy Action ◽  
Group Discussions ◽  
Content Type ◽  
Consumption Behavior ◽  
Future Studies ◽  
Large Cities ◽  
Depth Interviews ◽  
Practical Implications

Purpose This study aims to explore the dimensions of perceived consumption vulnerability (PCV) for the elderly citizens (EC) in India and its consequences. Consumer vulnerability is a recent and important construct for marketers and policymakers to understand the consumption behavior of the EC. Design/methodology/approach To achieve the study objectives, the authors conducted 50 in-depth interviews and six focus group discussions of ECs in two large cities in India. The authors used grounded theory methodology to understand the PCV construct. Findings The findings suggest a five-dimensional formative PCV construct with the dimensions being Physical, Financial, Social, Technological and Service Vulnerability contributing to PCV. The findings also suggest a relationship between PCV and consumption variables such as search cost, choice evaluation, consumption and overall satisfaction. Research limitations/implications The major contribution of the present study is the exploration of the PCV construct for the EC and its dimensions. The propositions developed in the study could be tested in future studies using a quantitative approach. Practical implications The findings call for compassion from the marketers while dealing with the ECs and a separate service strategy that addresses the specific needs of the ECs. Social implications The findings call for public policy action to protect the consumption rights of the ECs to reduce their consumption vulnerability. Originality/value The present study is a novel attempt to explore the PCV construct and its role in defining consumer behavior of the ECs.

Nomadic Migration and Rural Violence in Nigeria

2020 ◽  
Vol 43 (1) ◽  
pp. 64-95
Author(s):  
Nsemba Edward Lenshie ◽  
Patience Kondu Jacob
Keyword(s):  
State Government ◽  
Migration Pattern ◽  
Land Resources ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Security Governance ◽  
North East ◽  
Descriptive Approach ◽  
The Relationship ◽  
Depth Interviews

The relationship between Fulani herdsmen and farmers has in recent years become hot-tempered motivated by competitive control of land resources, particularly in central and north-east Nigeria. In Taraba State, the ongoing nomadic migration pattern from the Sahel in quest of pastures has led to violent confrontation between Fulani herdsmen and farming indigenous natives. Using a descriptive approach consisting of documented evidence, in-depth interviews, and focus group discussions, the analysis revealed that conflicts between Fulani herdsmen and indigenous native farmers have culminated in population displacement and destruction of life and property in numerous rural enclaves in Taraba State. Despite the consequences of the conflicts, the Taraba State government was unable to act proactively because of the centralization of command over Nigerian security agencies. Accordingly, the study suggests decentralization of security agencies in Nigeria, especially the police, as the way forward for effective security governance in Nigeria.

scholarly journals Nairobi Early Childcare in Slums (NECS) Study Protocol: a mixed-methods exploration of paid early childcare in Mukuru slum, Nairobi

2020 ◽  
Vol 4 (1) ◽  
pp. e000822
Author(s):  
Robert C Hughes ◽  
Patricia Kitsao-Wekulo ◽  
Sunil Bhopal ◽  
Elizabeth W Kimani-Murage ◽  
Zelee Hill ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Focus Group ◽  
Early Years ◽  
Epidemiological Methods ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Early Childcare ◽  
Depth Interviews ◽  
Childcare Providers

IntroductionThe early years are critical. Early nurturing care can lay the foundation for human capital accumulation with lifelong benefits. Conversely, early adversity undermines brain development, learning and future earning.Slums are among the most challenging places to spend those early years and are difficult places to care for a child. Shifting family and work structures mean that paid, largely informal, childcare seems to be becoming the ‘new normal’ for many preschool children growing up in rapidly urbanising Africa. However, little is known about the quality of this childcare.AimsTo build a rigorous understanding what childcare strategies are used and why in a typical Nairobi slum, with a particular focus on provision and quality of paid childcare. Through this, to inform evaluation of quality and design and implementation of interventions with the potential to reach some of the most vulnerable children at the most critical time in the life course.Methods and analysisMixed methods will be employed. Qualitative research (in-depth interviews and focus group discussions) with parents/carers will explore need for and decision-making about childcare. A household survey (of 480 households) will estimate the use of different childcare strategies by parents/carers and associated parent/carer characteristics. Subsequently, childcare providers will be mapped and surveyed to document and assess quality of current paid childcare. Semistructured observations will augment self-reported quality with observable characteristics/practices. Finally, in-depth interviews and focus group discussions with childcare providers will explore their behaviours and motivations. Qualitative data will be analysed through thematic analysis and triangulation across methods. Quantitative and spatial data will be analysed through epidemiological methods (random effects regression modelling and spatial statistics).Ethics and disseminationEthical approval has been granted in the UK and Kenya. Findings will be disseminated through journal publications, community and government stakeholder workshops, policy briefs and social media content.

scholarly journals Political Vigilante Groups in Ghana: Violence or Democracy?

2020 ◽  
Vol 55 (3) ◽  
pp. 321-338
Author(s):  
Justice Richard Kwabena Owusu Kyei ◽  
Lidewyde H. Berckmoes
Keyword(s):  
Democratic Governance ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Political Field ◽  
Political Actors ◽  
Electoral Campaigns ◽  
The Social ◽  
Group Members ◽  
Organisational Structures ◽  
Depth Interviews

Literature on political vigilante groups has centred on the violence and conflict that emanate from their activities. This article approaches political vigilante groups as political actors who engage in political mobilisation and participation and therewith also contribute to nation state building. It explores how such groups participate in Ghana’s democratic governance and asks whether violence is an inevitable characteristic. The article builds on individual in-depth interviews and focus group discussions with political vigilante group members in Kumasi and Tamale in 2019. Findings show that political vigilante “youth” appeared to refer primarily to the social position attributed to non-elite groups in the political field. Political vigilante groups are multi-faceted in their organisational structures, membership, and activities both during electoral campaigns and during governing periods. While some groups revert to violence occasionally, the study concludes that political vigilante groups, in enabling different voices to be heard, are also contributing to democratic governance.

scholarly journals Solutions for Unexpected Challenges Encountered when Integrating Research Genomics Results into the EHR

ACI Open ◽  
2020 ◽  
Vol 04 (02) ◽  
pp. e132-e135
Author(s):  
Luke V. Rasmussen ◽  
Christin Hoell ◽  
Maureen E. Smith ◽  
Rex Chisholm ◽  
Justin Starren ◽  
...  
Keyword(s):  
Genetic Research ◽  
Lessons Learned ◽  
Return Of Results ◽  
Patient Portal ◽  
Test Results ◽  
Research Results ◽  
Genetic Test Results ◽  
Future Return ◽  
New Research ◽  
Genetic Results

Abstract Background While there have been published reports detailing technical challenges of incorporating genetic test results into the electronic health record (EHR) with proposed solutions, less has been published about unanticipated sociotechnological or practical communication challenges involved in this process. Objectives This study was aimed to describe unanticipated issues that arose returning genetic research results through the EHR as part of the National Human Genome Research Institute (NHGRI)-funded electronic Medical Records and Genomics (eMERGE) 3 consortium, and provide lessons learned for future implementations Methods We sequenced 3,000 participants on a 109-gene panel and returned genetic results initially in person and/or by letter, with a later release directly into the EHR and patient portal. Results When results were returned through the EHR, multiple participants expressed confusion and contacted the health system, resulting in our institution temporarily freezing our return of research results. Discussion We determined the likely causes of this issue to be (1) the delay between enrollment and results return, (2) inability to personalize mass e-mail messages announcing new research test results in the EHR, (3) limited space for description of test results in the EHR, and (4) the requirement to list an ordering physician for research results in the EHR. For future return of results, we propose sending preparatory e-mails to participants, including screenshots of how they can expect to see their results presented in the EHR portal. Conclusion We hope our lessons learned can provide helpful guidance to other sites implementing research genetic results into the EHR and can encourage EHR developers to incorporate greater flexibility in the future.

scholarly journals Feasibility of Kangaroo Mother Care (KMC) Implementation in Depok City, Indonesia

2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Tiara Amelia ◽  
Hadi Pratomo ◽  
Asri C. Adisasmita ◽  
Evi Martha ◽  
Yeni Rustina ◽  
...  
Keyword(s):  
Rapid Assessment ◽  
Kangaroo Mother Care ◽  
Assessment Procedure ◽  
Premature Births ◽  
Group Discussions ◽  
City District ◽  
Supporting Material ◽  
Family Readiness ◽  
The City ◽  
Depth Interviews

Background: The infant and neonatal mortality rate in Depok City is still high, with low birth weight (LBW) and premature births being one of the main causes. In 2018, 14 out of 41 cases of early neonatal death were due to LBW. Studies show that Kangaroo Mother Care (KMC) can prevent or reduce LBW deaths caused by hypothermia, but the implementation is still not evenly distributed. Objective: Describe KMC feasibility as a supporting material for a KMC policy umbrella at Depok City. Method: Qualitative research was conducted with a Rapid Assessment Procedure (RAP) design. A total of 56 informants were divided into 8 discussion groups, 7 in-depth interviews and 2 Focus Group Discussions (FGD). The types of informants were families and inter-sectoral officers. Thematic analysis was used to analyze the data. Results: KMC implementation feasibility in Depok City in terms of facilities and infrastructure was still limited and the quality was insufficient. The number of human resources was still limited, and the competency was still not evenly distributed. LBW family readiness can be maintained if provided with complete and accurate knowledge; therefore, a strong commitment may develop to continue KMC at home. The potential sources of KMC financing are found at health facilities and inter-sectoral; however, to use it, a legal umbrella at the city district level is necessary. Conclusions: The factors of potential financing sources need to be followed up into a priority. This is to overcome the constraints of KMC feasibility implementation.

Sexual and Reproductive Health Information and Experiences Among Syrian Refugee Adolescent Girls in Lebanon

2021 ◽  
Vol 31 (5) ◽  
pp. 983-998
Author(s):  
L’Emira Lama El Ayoubi ◽  
Sawsan Abdulrahim ◽  
Maia Sieverding
Keyword(s):  
Reproductive Health ◽  
Adolescent Girls ◽  
Sexual And Reproductive Health ◽  
Well Being ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Syrian Refugee ◽  
Entry Points ◽  
Depth Interviews ◽  
Source Of Information

Providing adolescent girls with sexual and reproductive health (SRH) information protects them from risks and improves their well-being. This qualitative study, conducted in Lebanon, examined Syrian refugee adolescent girls’ access to SRH information about and experiences with puberty and menarche, sex, marriage, contraception, and pregnancy. We gathered data through three focus group discussions (FGDs) with unmarried adolescent girls, 11 in-depth interviews with early-married adolescents, and two FGDs with mothers. Our findings highlighted that adolescent participants received inadequate SRH information shortly before or at the time of menarche and sexual initiation, resulting in experiences characterized by anxiety and fear. They also revealed discordance between girls’ views of mothers as a preferred source of information and mothers’ reluctance to communicate with their daughters about SRH. We advance that mothers are important entry points for future interventions in this refugee population and offer recommendations aimed to improve adolescent girls’ SRH and rights.

scholarly journals A qualitative study to identify critical attributes and attribute-levels for a discrete choice experiment on oral pre-exposure prophylaxis (PrEP) delivery among young people in Cape Town and Johannesburg, South Africa

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Janan J. Dietrich ◽  
Millicent Atujuna ◽  
Gugulethu Tshabalala ◽  
Stefanie Hornschuh ◽  
Mamakiri Mulaudzi ◽  
...  
Keyword(s):  
South Africa ◽  
Young People ◽  
User Preferences ◽  
Dosing Regimen ◽  
Group Discussions ◽  
On Demand ◽  
Study Team ◽  
Attribute Levels ◽  
Depth Interviews ◽  
Oral Prep

Abstract Background The uptake and adherence of daily oral PrEP has been poor in high-risk populations in South Africa including young people. We used qualitative research methods to explore user preferences for daily and on-demand oral PrEP use among young South Africans, and to inform the identification of critical attributes and attribute-levels for quantitative analysis of user preferences, i.e. a discrete choice experiment (DCE). Methods Data were collected between September and November 2018 from eight group discussions and 20 in-depth interviews with young people 13 to 24 years in Cape Town and Johannesburg. Using a convenience sampling strategy, participants were stratified by sex and age. Interviewers used a semi-structured interview guide to discuss several attributes (dosing regimen, location, costs, side effects, and protection period) for PrEP access and use. Group discussions and in-depth interviews were audio-recorded, transcribed verbatim and translated to English. We used framework analysis to explore context-specific attributes and attribute-levels for delivering oral PrEP in South Africa. The adolescent community advisory board, expert and study team opinions were consulted for the final DCE attributes and levels. Results We enrolled 74 participants who were 51% (n = 38/74) male, had a median age of 18.5 [Interquartile range = 16–21.25] years, 91% (n = 67/74) identified as heterosexual and 49% (n = 36/74) had not completed 12th grade education. Using the qualitative data, we identified five candidate attributes including (1) dosing regimen, (2) location to get PrEP, (3) cost, (4) route of administration and (5) frequency. After discussions with experts and the study team, we revised the DCE to include the following five attributes and levels: dosing regime: daily, and on-demand PrEP; location: private pharmacy, public clinic, mobile clinic, ATM); cost: free-of-charge, R50 (~2GBP), R265 (~12GBP); side effects: nausea, headache, rash; and duration of protection: fulltime protection versus when PrEP is used). Conclusions There is limited literature on qualitative research methods describing the step-by-step process of developing a DCE for PrEP in adolescents, especially in resource-constrained countries. We provide the process followed for the DCE technique to understand user preferences for daily and on-demand oral PrEP among young people in South Africa.

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