scholarly journals Parental and professional perceptions of informed consent and participation in a time-critical neonatal trial: a mixed-methods study in India, Sri Lanka and Bangladesh

2021 ◽  
Vol 6 (5) ◽  
pp. e005757
Author(s):  
Stuti Pant ◽  
Maya Annie Elias ◽  
Kerry Woolfall ◽  
Maria Moreno Morales ◽  
Bensitta Lincy ◽  
...  

IntroductionTime-critical neonatal trials in low-and-middle-income countries (LMICs) raise several ethical issues. Using a qualitative-dominant mixed-methods design, we explored informed consent process in Hypothermia for encephalopathy in low and middle-income countries (HELIX) trial conducted in India, Sri Lanka and Bangladesh.MethodsTerm infants with neonatal encephalopathy, aged less than 6 hours, were randomly allocated to cooling therapy or usual care, following informed parental consent. The consenting process was audio-video (A-V) recorded in all cases. We analysed A-V records of the consent process using a 5-point Likert scale on three parameters—empathy, information and autonomy. In addition, we used exploratory observation method to capture relevant aspects of consent process and discussions between parents and professionals. Finally, we conducted in-depth interviews with a subgroup of 20 parents and 15 healthcare professionals. A thematic analysis was performed on the observations of A-V records and on the interview transcripts.ResultsA total of 294 A-V records of the HELIX trial were analysed. Median (IQR) score for empathy, information and autonomy was 5 (0), 5 (1) and 5 (1), respectively. However, thematic analysis suggested that the consenting was a ceremonial process; and parental decision to participate was based on unreserved trust in the treating doctors, therapeutic misconception and access to an expensive treatment free of cost. Most parents did not understand the concept of a clinical trial nor the nature of the intervention. Professionals showed a strong bias towards cooling therapy and reported time constraints and explaining to multiple family members as key challenges.ConclusionDespite rigorous research governance and consent process, parental decisions were heavily influenced by situational incapacity and a trust in doctors to make the right decision on their behalf. Further research is required to identify culturally and context-appropriate strategies for informed trial participation.

2016 ◽  
Vol 17 (2) ◽  
pp. 84-89 ◽  
Author(s):  
Pramod R. Regmi ◽  
Nirmal Aryal ◽  
Om Kurmi ◽  
Puspa Raj Pant ◽  
Edwin van Teijlingen ◽  
...  

Author(s):  
Theresa C. Norton ◽  
Daniela C. Rodriguez ◽  
Catherine Howell ◽  
Charlene Reynolds ◽  
Sara Willems

Background: Little is known about how knowledge brokers (KBs) operate in low- and middle-income countries (LMICs) to translate evidence for health policy and practice. These intermediaries facilitate relationships between evidence producers and users to address public health issues.<br />Aims and objectives: To increase understanding, a mixed-methods study collected data from KBs who had acted on evidence from the 2015 Global Maternal Newborn Health Conference in Mexico.<br />Methods: Of the 1000 in-person participants, 252 plus 72 online participants (n=324) from 56 countries completed an online survey, and 20 participants from 15 countries were interviewed. Thematic analysis and application of knowledge translation (KT) theory explored factors influencing KB actions leading to evidence uptake. Descriptive statistics of respondent characteristics were used for cross-case comparison.Findings: Results suggest factors supporting the KB role in evidence uptake, which include active relationships with evidence users through embedded KB roles, targeted and tailored evidence communication to fit the context, user receptiveness to evidence from a similar country setting, adaptability in the KB role, and action orientation of KBs.<br />Discussion and conclusions: Initiatives to increase evidence uptake in LMICs should work to establish supportive structures for embedded KT, identify processes for ongoing cross-country learning, and strengthen KBs already showing effectiveness in their roles.<br /><br />key messages<br /><br /><ol><li>Little is known about how knowledge brokers mobilise evidence in low- and middle-income countries.</li><br /><li>A multi-country study of knowledge brokers identified promising practices for evidence uptake.</li><br /><li>Embedded brokers who adapted messaging and evidence to context in active relationships worked well.</li><br /><li>Capacity building should use KB promising practices and facilitate multi-country evidence exchange.</li></ol>


2020 ◽  
Author(s):  
Keshini Madara Marasinghe

<p>Older adults over 60 are at a higher risk of getting severely sick and dying from COVID–19. Sri Lanka has one of the fastest aging populations in South and South–East Asia. In addition to having a rapidly aging population, Sri Lanka is a developing country with limited resources to accommodate the older population that can be significantly affected by COVID–19. Statistics up to date shows that older adults are at a much higher risk of dying from COVID–19. Older adults being at a much higher risk of contracting and dying from COVID–19 has important implications for the way in which public health and clinical responses should be developed. These implications have been largely overlooked in both high and low and middle–income countries when providing guidance and implementing regulations, which can have a greater impact in low and middle–income countries. Preparedness of the healthcare systems to respond to the pandemic with a lack of facilities, resources (i.e., ventilators) and staff in the healthcare system, specifically in hospitals, intensive care units and long–term care homes is a concern that should be taken into consideration when clinical responses are developed. Challenges around protecting community–dwelling older adults who are caregivers to grandchildren, receiving informal care from children in the same household, living in living in remote areas, or living alone or dependent on others need to be taken into consideration when developing public health responses.</p>


2017 ◽  
Vol 60 (2) ◽  
pp. S56-S57
Author(s):  
Jason M. Nagata ◽  
Sejal Hathi ◽  
B. Jane Ferguson ◽  
Michelle J. Hindin ◽  
Sachiyo Yoshida ◽  
...  

2020 ◽  
Vol 12 (6) ◽  
pp. 47
Author(s):  
Tehzeeb Zulfiqar ◽  
Catherine D’Este ◽  
Lyndall Strazdins ◽  
Cathy Banwell

In this mixed-methods study, we explored how gender and cultural factors, including social status were linked with children&rsquo;s immigrant backgrounds and their body image dissatisfaction and weight management strategies in Australia. Cross-sectional data analysis of 10-11-year-old children from the Birth cohort of the &ldquo;Longitudinal Study of Australian Children&rdquo; showed that approximately half of the children were dissatisfied with their body images. A higher proportion of these were children of immigrants from low-and-middle-income-countries. Additionally, about three-quarters children were actively managing their weights. Children of immigrants from low-and-middle-income-countries constituted a higher proportion of these also. Among boys, desiring a heavier body was highest for those with immigrant mothers from low-and-middle-income-countries, while the desire to be thinner was highest among girls of immigrants from low-and-middle-income-countries. Although the percentage of children who adopted strategies to gain weight was very small, boys of immigrants from low-and-middle-income-countries, in particular, were almost three times as likely as non-immigrant boys, to try to gain weight (18% vs 5.9%, respectively). Qualitative face-to-face interviews with immigrant mothers and their 8-11-year-old children revealed intergenerational variations in body image standards. Maternal body image standards were drawn from their origin countries, but children followed Australian norms. Despite increased obesity awareness amongst mothers, they desired higher body weight for their children, due to an association with high status and health in origin countries. However, children were aware of the stigma, unpopularity, and low status associated with high body weights in Australia. To reduce cultural and status-based obesity inequalities, Australian obesity prevention plans must include culturally responsive health promotion strategies for immigrant parents and their children to improve their knowledge about healthy weights and weight management strategies.


Sign in / Sign up

Export Citation Format

Share Document