Barriers and facilitators to the recruitment of disabled people to clinical trials: a scoping review

Introduction Underrepresentation of disabled groups in clinical trials results in an inadequate evidence base for their clinical care, which drives health inequalities. This study aims to review and map the potential barriers and facilitators to the recruitment of disabled people in clinical trials to identify knowledge gaps and areas for further extensive research. The review addresses the question: ‘What are the barriers and facilitators to recruitment of disabled people to clinical trials?’. Methods The Joanna Briggs Institute (JBI) Scoping review guidelines were followed to complete the current scoping review. MEDLINE and EMBASE databases were searched via Ovid. The literature search was guided by a combination of four key concepts from the research question: (1) disabled populations, (2) patient recruitment, (3) barriers and facilitators, and (4) clinical trials. Papers discussing barriers and facilitators of all types were included. Papers that did not have at least one disabled group as their population were excluded. Data on study characteristics and identified barriers and facilitators were extracted. Identified barriers and facilitators were then synthesised according to common themes. Results The review included 56 eligible papers. The evidence on barriers and facilitators was largely sourced from Short Communications from Researcher Perspectives (N = 22) and Primary Quantitative Research (N = 17). Carer perspectives were rarely represented in articles. The most common disability types for the population of interest in the literature were neurological and psychiatric disabilities. A total of five emergent themes were determined across the barriers and facilitators. These were as follows: risk vs benefit assessment, design and management of recruitment protocol, balancing internal and external validity considerations, consent and ethics, and systemic factors. Conclusions Both barriers and facilitators were often highly specific to disability type and context. Assumptions should be minimised, and study design should prioritise principles of co-design and be informed by a data-driven assessment of needs for the study population. Person-centred approaches to consent that empower disabled people to exercise their right to choose should be adopted in inclusive practice. Implementing these recommendations stands to improve inclusive practices in clinical trial research, serving to produce a well-rounded and comprehensive evidence base

PCR Based Genotyping of Lulu Cattle of Nepal for A1, A2 Type Beta-caseins

Lulu is an indigenous breed of cattle (Bos taurus) found in high altitude regions of western Nepal. Population of Lulu cattle has been declining due to introgression with other exotic breeds to increase milk productivity. Here we aimed at finding potential approach for conserving Lulu cattle and its assets by studying the milk contents and investigating which variant of beta-casein protein is present in this breed. Beta caseins are an abundant protein in cow milk with A1 and A2 being the most common genetic variants of this protein. Consumption of A1 type of milk has numerous health-related complications whereas A2 type of milk has numerous human health promoting factors. We used restriction fragment length polymorphism (RFLP) for determining the A1 and A2 variant of beta casein in Lulu cattle. For performing DNA extraction, we collected (n = 18) blood samples of Lulu from Mustang and (n=17) Nepal Agriculture research council farm. The amplified fragments in 3% agarose at 251bp and 213bp respectively confirmed the presence of both A1 and A2 gene in Lulu; however, A2 was of greater abundance. Our study indicated that Lulu has A2 variant of beta-casein predominantly. The gene frequency of A1A1 is 0, A1A2 is 0.06 and A2A2 is 0.94. We further found that the allele frequency of A1 and A2 is 0.03 and 0.97 respectively. We designed special primer for sequencing CSN2 genes since A2 type beta casein gene was predominantly seen on Lulu. The sequencing result further supports our RFLP result as most of our samples have “C” nucleotide SNP in amplified CSN2 gene sequence. The Chi-square value of the current study is 0.04 which supports Hardy-Weinberg equilibrium inferring that Lulu cattle are still in the pure state, where there is no genetic introgression with the exotic breed for the sake of improvement of productivity

Development and Validation of an Information Booklet Aimed at Promoting Mental Health for Pregnant Women with a History of Abuse.

BACKGROUND:Mental health needs of victims of domestic and family violence are often overlooked. A booklet was designed to help women update their knowledge and skills in effective coping with domestic and family violence and support them in developing effective stress reduction and problem management techniques. In addition, this booklet is believed to serve as a reference for further use. This paper describes the development process and validation of the information booklet. This booklet was used during an intervention trial conducted in Nepal to educate abused pregnant women. METHODS:This methodological study involved three stages: bibliographical survey, development of the booklet, and validation by specialists in the relevant fields and representatives of the target audiences. A total of eight experts, currently working in the field of domestic violence and/or midwifery, and 15 representatives of the target participants were involved in the validation process. A minimum Content Validity Index of 0.78 was considered for content validation, and minimum agreement of 75% for face validation. RESULTS:The booklet presented a global Content Validity Index of 0.92. The overall level of agreement within the target participants was 86.3%, which was higher than the minimum recommended level. Both subject experts and participants positively evaluated the adequacy, coverage and readability of contents of the booklet. CONCLUSIONS:The booklet was validated using content and face validity. This validated booklet is expected to be an effective tool for communication that would help pregnant women cope better with domestic and family violence and adopt strategies to remain emotionally healthy

Integrated Participatory and Collaborative Risk Mapping for Enhancing Disaster Resilience

Critical knowledge gaps seriously hinder efforts for building disaster resilience at all levels, especially in disaster-prone least developed countries. Information deficiency is most serious at local levels, especially in terms of spatial information on risk, resources, and capacities of communities. To tackle this challenge, we develop a general methodological approach that integrates community-based participatory mapping processes, one that has been widely used by governments and non-government organizations in the fields of natural resources management, disaster risk reduction and rural development, with emerging collaborative digital mapping techniques. We demonstrate the value and potential of this integrated participatory and collaborative mapping approach by conducting a pilot study in the flood-prone lower Karnali river basin in Western Nepal. The process engaged a wide range of stakeholders and non-stakeholder citizens to co-produce locally relevant geographic information on resources, capacities, and flood risks of selected communities. The new digital community maps are richer in content, more accurate, and easier to update and share than those produced by conventional Vulnerability and Capacity Assessments (VCAs), a variant of Participatory Rural Appraisal (PRA), that is widely used by various government and non-government organizations. We discuss how this integrated mapping approach may provide an effective link between coordinating and implementing local disaster risk reduction and resilience building interventions to designing and informing regional development plans, as well as its limitations in terms of technological barrier, map ownership, and empowerment potential

Whose voices should shape global health education? Curriculum codesign and codelivery by people with direct expertise and lived experience

There are contrasting opinions of what Global Health (GH) curricula should contain and limited discussion on whose voices should shape it. In GH education, those with first-hand expertise of living and working in the contexts discussed in GH classrooms are often absent when designing curricula. To address this, we developed a new model of curriculum co-design called Virtual Roundtable for Collaborative Education Design (ViRCoED). This paper describes the rationale and outputs of the ViRCoED approach in designing a new section of the Global Health BSc curriculum at Imperial College London, with a focus on healthcare in the Syrian conflict. The team, importantly, involved partners with lived and/or professional experience of the conflict as well as alumni of the course, and educators in all stages of design and delivery through to marking and project evaluation. The project experimented with disrupting power dynamics and extending ownership of the curriculum beyond traditional faculty by co-designing and co-delivering module contents together with colleagues with direct expertise and experience of the Syrian context. An authentic approach was applied to assessment design using real-time syndromic healthcare data from the Aleppo and Idlib Governorates. We discuss the challenges involved in our collaborative partnership and describe how it may have enhanced the validity of our curriculum with students engaging in a richer representation of key health issues in the conflict. We observed an enhanced self-reflexivity in the students’ approach to quantitative data and its complex interpretation. The dialogic nature of this collaborative design was also a formative process for partners and an opportunity for GH educators to reflect on their own positionality. The project aims to challenge current standards and structures in GH curriculum development and gesture towards a GH education sector eventually led by those with lived experience and expertise to significantly enhance the validity of GH education

Menstrual hygiene management among women and adolescent girls in the aftermath of the earthquake in Nepal.

BACKGROUND: Menstrual hygiene management (MHM) is an essential aspect of hygiene for women and adolescent girls between menarche and menopause. Despite being an important issue concerning women and girls in the menstruating age group MHM is often overlooked in post-disaster responses. Further, there is limited evidence of menstrual hygiene management in humanitarian settings. This study aims to describe the experiences and perceptions of women and adolescent girls on menstrual hygiene management in post-earthquake Nepal. METHODS: A mixed methods study was carried out among the earthquake affected women and adolescent girls in three villages of Sindhupalchowk district of Nepal. Data was collected using a semi-structured questionnaire that captured experiences and perceptions of respondents on menstrual hygiene management in the aftermath of the Nepal earthquake. Quantitative data were triangulated with in-depth interview regarding respondent's personal experiences of menstrual hygiene management. RESULTS: Menstrual hygiene was rated as the sixth highest overall need and perceived as an immediate need by 18.8% of the respondents. There were 42.8% women & girls who menstruated within first week of the earthquake. Reusable sanitary cloth were used by about 66.7% of the respondents before the earthquake and remained a popular method (76.1%) post-earthquake. None of the respondents reported receiving menstrual adsorbents as relief materials in the first month following the earthquake. Disposable pads (77.8%) were preferred by respondents as they were perceived to be clean and convenient to use. Most respondents (73.5%) felt that reusable sanitary pads were a sustainable choice. Women who were in the age group of 15-34 years (OR = 3.14; CI = (1.07-9.20), did not go to school (OR = 9.68; CI = 2.16-43.33), married (OR = 2.99; CI = 1.22-7.31) and previously used reusable sanitary cloth (OR = 5.82; CI = 2.33-14.55) were more likely to use the reusable sanitary cloth. CONCLUSIONS: In the immediate aftermath of the earthquake, women and girls completely depended on the use of locally available resources as adsorbents during menstruation. Immediate relief activities by humanitarian agencies, lacked MHM activities. Understanding the previous practice and using local resources, the reusable sanitary cloth is a way to address the menstrual hygiene needs in the post-disaster situations in Nepal

Disabled women’s attendance at community women’s groups in rural Nepal

There is strong evidence that participatory approaches to health and participatory women’s groups hold great potential to improve the health of women and children in resource poor settings. It is important to consider if interventions are reaching the most marginalized, and therefore we examined disabled women’s participation in women’s groups and other community groups in rural Nepal. People with disabilities constitute 15% of the world’s population and face high levels of poverty, stigma, social marginalization and unequal access to health resources, and therefore their access to women’s groups is particularly important. We used a mixed methods approach to describe attendance in groups among disabled and non-disabled women, considering different types and severities of disability. We found no significant differences in the percentage of women that had ever attended at least one of our women’s groups, between non-disabled and disabled women. This was true for women with all severities and types of disability, except physically disabled women who were slightly less likely to have attended. Barriers such as poverty, lack of family support, lack of self-confidence and attendance in many groups prevented women from attending groups. Our findings are particularly significant because disabled people’s participation in broader community groups, not focused on disability, has been little studied. We conclude that women’s groups are an important way to reach disabled women in resource poor communities. We recommend that disabled persons organizations help to increase awareness of disability issues among organizations running community groups to further increase their effectiveness in reaching disabled women

Aid conditionalities, international Good Manufacturing Practice standards and local production rights: a case study of local production in Nepal

© 2015 Brhlikova et al. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http:// creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.This work was supported by the Economic and Social Research Council and the Department for International Development [RES-167-25-0110] through the collaborative research project Tracing Pharmaceuticals in South Asia (2006 – 2009). In addition to the authors of this paper, the project team included: Soumita Basu, Gitanjali Priti Bhatia, Erin Court, Abhijit Das, Stefan Ecks, Patricia Jeffery, Roger Jeffery, Rachel Manners, and Liz Richardson. Martin Chautari (Kathmandu) and the Centre for Health and Social Justice (New Delhi) provided resources drawn upon in writing this paper but are not responsible for the views expressed, nor are ESRC or DFID. Ethical review was provided by the School of Social and Political Science at the University of Edinburgh, and ethical approval in Nepal for the study granted by the Nepal Health Research Council (NHRC)

Analysis of maternal and newborn training curricula and approaches to inform future trainings for routine care, basic and comprehensive emergency obstetric and newborn care in the low- and middle-income countries: Lessons from Ethiopia and Nepal

Program managers routinely design and implement specialised maternal and newborn health trainings for health workers in low- and middle-income countries to provide better-coordinated care across the continuum of care. However, in these countries details on the availability of different training packages, skills covered in those training packages and the gaps in their implementation are patchy. This paper presents an assessment of maternal and newborn health training packages to describe differences in training contents and implementation approaches used for a range of training packages in Ethiopia and Nepal. We conducted a mixed-methods study. The quantitative assessment was conducted using a comprehensive assessment questionnaire based on validated WHO guidelines and developed jointly with global maternal and newborn health experts. The qualitative assessment was conducted through key informant interviews with national stakeholders involved in implementing these training packages and working with the Ministries of Health in both countries. Our quantitative analysis revealed several key gaps in the technical content of maternal and newborn health training packages in both countries. Our qualitative results from key informant interviews provided additional insights by highlighting several issues with trainings related to quality, skill retention, logistics, and management. Taken together, our findings suggest four key areas of improvement: first, training materials should be updated based on the content gaps identified and should be aligned with each other. Second, trainings should address actual health worker performance gaps using a variety of innovative approaches such as blended and self-directed learning. Third, post-training supervision and ongoing mentoring need to be strengthened. Lastly, functional training information systems are required to support planning efforts in both countries