Profile of patients with intellectual disability visiting a tertiary care center in western India

Background:Intellectual disability is commonly associated with variety of etio-pathological and co-morbid conditions influencing outcome of rehabilitative measures. Understanding of these factors helps in better management of disabled condition.Methods:A qualitative retrospective case record review, of patients with intellectual disability, visiting psychiatry department of a tertiary care hospital, within a period of one year, was conducted to assess their epidemiological and clinical profile.Results: Patients with Intellectual disability are brought to the hospital at all ages and commonly by their parents. Etiologically related various peri-natal factors (delayed birth cry and seizures being most common) as well as childhood medical conditions (epilepsy and recurrent respiratory/GI infections being most common) were commonly found in these patients. Milestones are delayed in almost 60-70% of cases whereas various physical and psychiatric conditions commonly co-existed with disability.Conclusion:Clinical profile of these patients demands a comprehensive evaluation and management apart from routine IQ assessment

Government helper and citizen advocate? A case study of the multiple roles and pressures facing a nongovernmental organization contracted by government to strengthen community health in northern India

While nongovernmental organizations (NGOs) can potentially strengthen valuable citizen political engagement, NGOs that are increasingly oriented towards donor and government contracts may instead contribute to depoliticizing development. Amidst competing pressures, NGO experiences and agency in managing multiple roles require examination. We present a qualitative case study of an NGO implementing a government‐designed intervention to strengthen Village Health, Sanitation, and Nutrition Committees (VHSNCs) in rural north India. Despite a challenging context of community scepticism and poor government services, the NGO did successfully form VHSNCs by harnessing its respected interlocutor status, preexisting relationships, and ability to “sell” the VHSNC as a mechanism for improving local well‐being. While the VHSNC enabled community members to voice concerns to government officials, improvements often failed to meet community expectations. NGO staff endured community frustration on one hand and rebuffs from lower‐level officials on the other, while feeling undersupported by the government contract. Consequently, although contracted to strengthen a community institution, the NGO increasingly worked alongside VHSNC members to try to strengthen the public sector. Contrary to assumptions that NGOs become “tamed” through taking government contracts, being contracted to deliver inputs for community participation was intertwined with microlevel political action, though this came at a cost to the NGO

Low-Dose Antithymocyte Globulin Has No Disadvantages to Standard Higher Dose in Pediatric Kidney Transplant Recipients: Report from the Pediatric Nephrology Research Consortium

Introduction Rabbit antithymocyte globulin (rATG) dosing strategies for induction in pediatric kidney transplantation vary between centers. It is not known whether a lower rATG induction dose provides safe and effective immunosuppression compared with a “standard” higher dose. Methods We performed a retrospective multicenter study of all isolated first-time kidney transplant recipients \u3c 21 years old who received rATG induction between 1 January 2010 and 31 December 2014 at 9 pediatric centers. An a priori cutoff of a 4.5-mg/kg cumulative rATG dose was used to identify low (≤ 4.5 mg/kg) and standard (\u3e 4.5 mg/kg) exposure groups. Outcomes examined included 12 months posttransplant graft function (estimated glomerular filtration rate [eGFR]); the occurrence of acute rejection, donor-specific antibody (DSA), neutropenia, and viral infection (cytomegalovirus [CMV], Epstein-Barr virus [EBV], and BK virus); and 24-month outcomes of posttransplant lymphoproliferative disorder (PTLD) occurrence and patient and graft survival. Results Two hundred thirty-five patients were included. Baseline features of the low and standard rATG dose groups were similar. By 12 months, the rATG dose group had no significant impact on the occurrence of neutropenia, positive DSA, or viral polymerase chain reaction (PCR). Graft function was similar. Acute rejection rates were similar at 17% (low dose) versus 19% (standard dose) (P = 0.13). By 24 months, graft survival (96.4% vs. 94.6%) and patient survival (100% vs. 99.3%) were similar between the low- and standard-dose groups (P = 0.54 and 0.46), whereas the occurrence of PTLD trended higher in the standard-dose group (0% vs. 2.6%, P = 0.07). Conclusion A low rATG induction dose ≤ 4.5 mg/kg provided safe and effective outcomes in this multicenter low immunologic risk pediatric cohort. Prospective studies are warranted to define the optimal rATG induction dose in pediatric kidney transplantation

The early career researcher's toolkit:translating tissue engineering, regenerative medicine and cell therapy products

Although the importance of translation for the development of tissue engineering, regenerative medicine and cell-based therapies is widely recognized, the process of translation is less well understood. This is particularly the case among some early career researchers who may not appreciate the intricacies of translational research or make decisions early in development which later hinders effective translation. Based on our own research and experiences as early career researchers involved in tissue engineering and regenerative medicine translation, we discuss common pitfalls associated with translational research, providing practical solutions and important considerations which will aid process and product development. Suggestions range from effective project management, consideration of key manufacturing, clinical and regulatory matters and means of exploiting research for successful commercialization

Doing implementation research on health governance: a frontline researcher’s reflexive account of field-level challenges and their management

BACKGROUND: Implementation Research (IR) in and around health systems comes with unique challenges for researchers including implementation, multi-layer governance, and ethical issues. Partnerships between researchers, implementers, policy makers and community members are central to IR and come with additional challenges. In this paper, we elaborate on the challenges faced by frontline field researchers, drawing from experience with an IR study on Village Health Sanitation and Nutrition Committees (VHSNCs). METHODS: The IR on VHSNC took place in one state/province in India over an 18-month research period. The IR study had twin components; intervention and in-depth research. The intervention sought to strengthen the VHSNC functioning, and concurrently the research arm sought to understand the contextual factors, pathways and mechanism affecting VHSNC functions. Frontline researchers were employed for data collection and a research assistant was living in the study sites. The frontline research assistant experienced a range of challenges, while collecting data from the study sites, which were documented as field memos and analysed using inductive content analysis approach. RESULTS: Due to the relational nature of IR, the challenges coalesced around two sets of relationships (a) between the community and frontline researchers and (b) between implementers and frontline researchers. In the community, the frontline researcher was viewed as the supervisor of the intervention and was perceived by the community to have power to bring about beneficial changes with public services and facilities. Implementers expected help from the frontline researcher in problem-solving in VHSNCs, and feedback on community mobilization to improve their approaches. A concerted effort was undertaken by the whole research team to clarify and dispel concerns among the community and implementers through careful and constant communication. The strategies employed were both managerial, relational and reflexive in nature. CONCLUSION: Frontline researchers through their experiences shape the research process and its outcome and they play a central role in the research. It demonstrates that frontline researcher resilience is very crucial when conducting health policy and systems research.Scopu

Negotiating power relations, gender equality, and collective agency: are village health committees transformative social spaces in northern India?

BACKGROUND: Participatory health initiatives ideally support progressive social change and stronger collective agency for marginalized groups. However, this empowering potential is often limited by inequalities within communities and between communities and outside actors (i.e. government officials, policymakers). We examined how the participatory initiative of Village Health, Sanitation, and Nutrition Committees (VHSNCs) can enable and hinder the renegotiation of power in rural north India. METHODS: Over 18 months, we conducted 74 interviews and 18 focus groups with VHSNC members (including female community health workers and local government officials), non-VHSNC community members, NGO staff, and higherlevel functionaries. We observed 54 VHSNC-related events (such as trainings and meetings). Initial thematic network analysis supported further examination of power relations, gendered “social spaces,” and the “discourses of responsibility” that affected collective agency. RESULTS: VHSNCs supported some re-negotiation of intra-community inequalities, for example by enabling some women to speak in front of men and perform assertive public roles. However, the extent to which these new gender dynamics transformed relations beyond the VHSNC was limited. Furthermore, inequalities between the community and outside stakeholders were re-entrenched through a “discourse of responsibility”: The comparatively powerful outside stakeholders emphasized community responsibility for improving health without acknowledging or correcting barriers to effective VHSNC action. In response, some community members blamed peers for not taking up this responsibility, reinforcing a negative collective identity where participation was futile because no one would work for the greater good. Others resisted this discourse, arguing that the VHSNC alone was not responsible for taking action: Government must also intervene. This counter-narrative also positioned VHSNC participation as futile. CONCLUSIONS: Interventions to strengthen participation in health systems can engender social transformation. However they must consider how changing power relations can be sustained outside participatory spaces, and how discourse frames the rationale for community participation.ISIScopu