Factors governing the performance of Auxiliary Nurse Midwives in India: a study in Pune district

Background: The Auxiliary nurse midwife (ANM) cadre was created to focus on maternal and child health. ANMs are respected members of their communities and established providers of maternal and child health care within the community and at the facility level. Over time, additional roles and responsibilities have been added. Despite the importance of ANMs in the primary healthcare system in India, studies that consider factors governing the performance of ANMs in their workplaces are limited. We aimed to study factors governing performance of ANMs in Pune district, India. Methods: Semi-structured interviews were conducted with 13 purposely selected key informants at facility, district, state, and national levels. Focus group discussions were conducted with 41 ANMs and 25 members of the community. Non-participatory observations with eight ANMs provided information to expand on and scrutinise findings that emerged from the other lines of inquiry. A realist lens was applied to identify ANMs’ performance as a result of “mechanisms” (training, supervision, accountability mechanisms) within the given “context” (regulatory system, infrastructure and resources, ANMs’ expanded scope of work, gender roles and norms). Results: Weak enforcement of regulatory system led to poor standardisation of training quality among training institutions. Challenges in internal accountability mechanisms governing ANMs within the health system hierarchy made it difficult to ensure individual accountability. Training and supervision received were inadequate to address current responsibilities. The supervisory approach focused on comparing information in periodic reports against expected outputs. Clinical support in workplaces was insufficient, with very little problem identification and solving. Conclusion: Focusing on the tasks of ANMs with technical inputs alone is insufficient to achieve the full potential of ANMs in a changing context. Systematic efforts tackling factors governing ANMs in their workplaces can produce a useful cadre, that can play an important role in achieving universal health coverage in India

Appraisal of maternity management and family planning guidelines using the agree II instrument in India

Introduction: Guideline development gathered pace in India after the inception of National Rural Health Mission (NRHM) in 2005. However, there is a lack of adequate information about guideline development process, review, and update. This paper reports on the systematic appraisal of Indian guidelines related to maternity management (MM) and family planning (FP) using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) instrument, which was one of the components of a pilot research in 2012-13. Materials and Methods: Forty-four selected guidelines about MM and FP, identified through a consensus building workshop, were independently appraised by two appraisers with AGREE instrument having six different domains. Mean item scores, domain scores, and standardized scores were calculated by averaging the scores across the two appraisers. Results: Most guidelines scored high in scope and purpose and clarity of presentation. However, they had little documentation about the development group member details, incorporation of patient views, evidence search method, method chosen for formulating recommendations, tools for application, potential barriers, cost implications, and information about the funding body. Nonclinical guidelines scored higher than clinical guidelines (P = 0.01) for MM in the domain applicability. Clinical FP guidelines scored higher than nonclinical guidelines in the domain of rigor of development (0.01). Conclusion: Despite being clinically sound, Indian guidelines score poorly due to weak documentation about their development process. It is recommended that the guideline development process be improved with systematic documentation for achieving standardization

Understanding couple communication in reproductive health by using a Visually Assisted Interview Guide (VAIG)

Learning the process of couple communication, in terms of place, time, duration, content, style, form and barriers, is crucial before developing strategies to improve communication among rural couples in India. Considering the sensitivity of the subject, cultural setting, family dynamics and difficulties in reaching couples, visuals accompanied by an interview guide prove effective. The current article explains the construction and validation of a Visually Assisted Interview Guide (VAIG). The rural context limits the choice of visual forms and thus hand-drawn pictures depicting day-to-day life scenarios were used in the tool. The tool construction was primarily based on adding value to the interview guide and offering ease/comfort to the respondents and researchers when dealing with personal information. Results show that hand-drawn pictures help respondents to replace their own self-conscious identity with that of the illustrated individuals, enabling them to give realistic, impersonal responses to sensitive issues. A VAIG is therefore useful in understanding the process of how couples in rural settings communicate over reproductive health issue

Consolidation of the clinical and genetic definition of a SOX4-related neurodevelopmental syndrome

BACKGROUND: A neurodevelopmental syndrome was recently reported in four patients with SOX4 heterozygous missense variants in the high-mobility-group (HMG) DNA-binding domain. The present study aimed to consolidate clinical and genetic knowledge of this syndrome. METHODS: We newly identified 17 patients with SOX4 variants, predicted variant pathogenicity using in silico tests and in vitro functional assays and analysed the patients' phenotypes. RESULTS: All variants were novel, distinct and heterozygous. Seven HMG-domain missense and five stop-gain variants were classified as pathogenic or likely pathogenic variant (L/PV) as they precluded SOX4 transcriptional activity in vitro. Five HMG-domain and non-HMG-domain missense variants were classified as of uncertain significance (VUS) due to negative results from functional tests. When known, inheritance was de novo or from a mosaic unaffected or non-mosaic affected parent for patients with L/PV, and from a non-mosaic asymptomatic or affected parent for patients with VUS. All patients had neurodevelopmental, neurological and dysmorphic features, and at least one cardiovascular, ophthalmological, musculoskeletal or other somatic anomaly. Patients with L/PV were overall more affected than patients with VUS. They resembled patients with other neurodevelopmental diseases, including the SOX11-related and Coffin-Siris (CSS) syndromes, but lacked the most specific features of CSS. CONCLUSION: These findings consolidate evidence of a fairly non-specific neurodevelopmental syndrome due to SOX4 haploinsufficiency in neurogenesis and multiple other developmental processes.RD&E staff can access the full-text of this article by clicking on the 'Additional Link' above and logging in with NHS OpenAthens if prompted.Published version, accepted version, submitted versio

Consolidation of the clinical and genetic definition of a SOX4-related neurodevelopmental syndrome

Background A neurodevelopmental syndrome was recently reported in four patients with SOX4 heterozygous missense variants in the high-mobility-group (HMG) DNA-binding domain. The present study aimed to consolidate clinical and genetic knowledge of this syndrome. Methods We newly identified 17 patients with SOX4 variants, predicted variant pathogenicity using in silico tests and in vitro functional assays and analysed the patients' phenotypes. Results All variants were novel, distinct and heterozygous. Seven HMG-domain missense and five stop-gain variants were classified as pathogenic or likely pathogenic variant (L/PV) as they precluded SOX4 transcriptional activity in vitro. Five HMG-domain and non-HMG-domain missense variants were classified as of uncertain significance (VUS) due to negative results from functional tests. When known, inheritance was de novo or from a mosaic unaffected or non-mosaic affected parent for patients with L/PV, and from a non-mosaic asymptomatic or affected parent for patients with VUS. All patients had neurodevelopmental, neurological and dysmorphic features, and at least one cardiovascular, ophthalmological, musculoskeletal or other somatic anomaly. Patients with L/PV were overall more affected than patients with VUS. They resembled patients with other neurodevelopmental diseases, including the SOX11-related and Coffin-Siris (CSS) syndromes, but lacked the most specific features of CSS. Conclusion These findings consolidate evidence of a fairly non-specific neurodevelopmental syndrome due to SOX4 haploinsufficiency in neurogenesis and multiple other developmental processes.Genetics of disease, diagnosis and treatmen