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Table S2. Age, anthropometric and biochemical characteristics of participants at baseline, according to diabetes status as measured by HbA1c. (DOCX 18 kb)
The authors used photovoice methodology to gain insight into the lives of 18 people with disabilities in rural North India. This project provided participants with an opportunity to express their joys and difficulties and provided... more
The authors used photovoice methodology to gain insight into the lives of 18 people with disabilities in rural North India. This project provided participants with an opportunity to express their joys and difficulties and provided important insights to help structure future programs and supports within the community.
PURPOSE Family members are preferred providers of care for people with disability in India. Despite this, research which evaluates the impact of caregiving is limited. This qualitative study provides a comprehensive, in-depth exploration... more
PURPOSE Family members are preferred providers of care for people with disability in India. Despite this, research which evaluates the impact of caregiving is limited. This qualitative study provides a comprehensive, in-depth exploration of the lived experience of carers who provide assistance to persons with a disability in Southwest India. METHODS In this qualitative study, 20 carers who assist persons with disability were purposively selected to undertake semi-structured interviews across a variety of domains. Data analysis was informed by Attride-Stirling's thematic network analysis. RESULTS Five global themes were identified which included; carers commitment to caring; concurrent demands of caregiving; mental and physical health of carers; networks and sources of non-financial support; and finances - strains and supports. CONCLUSIONS This study provides an in-depth exploration of the lived experience of carers in Kerala, India which will inform the future development of interventions to assist primary carers.Implications for rehabilitationFamily members are preferred providers of care for people with disability in India.By understanding the issues that affect carers who assist people with disability, it is possible to develop more effective, targeted, and sustainable interventions, that meet the needs of carers and alleviate some of their burden.Improving the health and wellbeing of carers needs to be urgently addressed in order to improve outcomes for those with disability - whom they care for.
In India, fair skin is a highly valued physical attribute. Skin lightener products comprise 60% of the dermatological market. This cross-sectional study was conducted in the general medical outpatient clinics of Champa Christian Hospital... more
In India, fair skin is a highly valued physical attribute. Skin lightener products comprise 60% of the dermatological market. This cross-sectional study was conducted in the general medical outpatient clinics of Champa Christian Hospital to elucidate the perceptions of fair skin and determinants/pattern of skin lighter use. Demographics, pattern of skin lightener use and incidence of side effects, perceptions of lighter skin tones were the main outcomes and measures studied. The use of skin lighteners was highly prevalent in our study population. Believing that lighter skin is beneficial for self-esteem is a predictor for skin lightener use. Higher education was associated with lower perceived benefits of fairer skin and therefore reduced skin lightener use. Further education and increased community awareness are important to address the issues surrounding potential over-use of skin-lightening products.
PURPOSE To identify the competencies required by Community-Based Rehabilitation (CBR) practitioners in India and determine typical pathways of competency development, including minimum practice standards. METHODS Following a literature... more
PURPOSE To identify the competencies required by Community-Based Rehabilitation (CBR) practitioners in India and determine typical pathways of competency development, including minimum practice standards. METHODS Following a literature review of existing frameworks and guidelines for CBR delivery, Delphi methods were used with Indian CBR experts to identify the main competency requirements of CBR personnel. Rubric writing workshops with CBR experts then expressed the performance of these competencies developmentally as learning progressions. The rubrics were converted into an observation form and field tested with 100 CBR personnel of varying expertise levels, through third party assessments by workplace supervisors. Finally, a second Delphi panel determined major competency stages and minimum standards for practice. RESULTS Three broad job functions pertaining to five focus areas and 37 developmentally described competencies were found important for delivery of quality CBR. Through a standard setting process, for each job function experts reached agreement on major competency stages, including a minimum practice standard. CONCLUSIONS The study suggests India's CBR expertise proceeds in four stages within three broad job functions - Assessment and Intervention, Inclusive Community Development, and Professional and Ethical Behaviour and Practice. The findings have direct implications for designing curricula to facilitate the competency development of CBR personnel.Implications for rehabilitationMeeting the rehabilitation and inclusion needs of people with disability in low and middle-income countries requires adequately trained local personnel.Currently, lack of knowledge and understanding of the competencies required of CBR personnel is affecting training and workforce quality.Consensus amongst Indian experts about a CBR learning pathway indicates possibilities for effective competency-based course design.
Editorial introducing the special issue on pandemic response, with these key resource links: CCIH resources & forum: https://www.ccih.org/cpt_resources/covid-19/ CCIH survey: https://www.ccih.org/covid-19-response-survey-of-fbos/... more
Editorial introducing the special issue on pandemic response, with these key resource links: CCIH resources & forum: https://www.ccih.org/cpt_resources/covid-19/ CCIH survey: https://www.ccih.org/covid-19-response-survey-of-fbos/ Leadership consultations (HFAN): https://www.healthforallnations.com/ Book & mission blogs: https://www.medicalmissions.com/coronavirus ICMDA Resource Links: https://mailchi.mp/a46dcc104406/covid01? Joint Learning Initiative for Faith and Local Communities: https://jliflc.com/covid/ CUGH resources for educators and researchers: https://myemail.constantcontact.com/COVID-19-Newsletter-Vol--5.html?soid=1112846108446&aid=AUbGAK-oI_U FBO resources from CDC: https://www.cdc.gov/coronavirus/2019-ncov/community/organizations/index.htm Community health fact sheet (in 25 languages):https://protect-au.mimecast.com/s/8jexCP7yBlsK0MxPpUzK3Iv?domain=r20.rs6.net
Could ongoing COVID-19 ‘lockdowns’ in India risk more harm than the pandemic itself given a population already facing major poverty and health challenges?
Background: In India it is estimated that one third of expenditure of households is spent on health related expenses, and medication purchases make up a large proportion of these costs. Objective: To investigate a novel methodology, which... more
Background: In India it is estimated that one third of expenditure of households is spent on health related expenses, and medication purchases make up a large proportion of these costs. Objective: To investigate a novel methodology, which was cost effective, to collect large amounts of data to further understand medication purchases and misuse in rural India.Methods: This study explores the research approach that was conducted in 2012-13 by Layleaders enrolled in the Community Lay-Leaders’ Health Certificate Program initiative by Christian Medical College (CMC), Vellore, India.Results: The methodology demonstrated a large data collection capacity, where 100 Layleaders participated and collected over 5000 surveys across 515 villages in North, Central and North East India.Conclusions: Incorporating opportunistic research methods into community health worker training can be a cost effective way to collect meaningful and useful data in rural India. This study demonstrates a successful m...
Policies to restrict movements and contact between people have been a common response to control the spread of SARS-CoV-2 in many countries around the world, in varying degrees of stringency. However, there have been concerns on the... more
Policies to restrict movements and contact between people have been a common response to control the spread of SARS-CoV-2 in many countries around the world, in varying degrees of stringency. However, there have been concerns on the possible negative effects of these restrictions such as stay-at-home orders and lockdowns. In this analysis we attempt to determine the quantitative evidence of these potential harms, focusing on the few studies that approximate a counterfactual variation in level of restrictions. We find clear adverse impacts of lockdowns on mental health, intimate partner violence and physical activity, as well as a decrease in road traffic injuries, and increase in generalised anxiety. A discussion driven by science (not politics) is needed on what lockdowns can deliver, their limitations and how to optimally deploy them, keeping country specific circumstances in mind, along other public health strategies, in the fight against COVID-19.
Australian and New Zealand Journal of Public Health 93 © 2021 The Authors This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium,... more
Australian and New Zealand Journal of Public Health 93 © 2021 The Authors This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. Victoria has experienced more COVID-19 cases than all other state and territories combined, on the back of a sizeable second wave.1 Multiple inquiries2,3,4 into the Victorian Government’s response to the pandemic has seen much blame-shifting and contributed to the resignation of a Victorian Health Minister.
The central role of the community and its place in both healthcare planning and service delivery is increasingly seen as a vital foundation for global health. The fourth edition of Setting up Community Health Programmes in Low and Middle... more
The central role of the community and its place in both healthcare planning and service delivery is increasingly seen as a vital foundation for global health. The fourth edition of Setting up Community Health Programmes in Low and Middle Income Settings provides a practical introductory guide to the initiation, management, and sustaining of health care programmes in developing countries. The book has been fully revised to take into account the Millennium Development Goals, Sustainable Development Goals, and Universal Health Coverage. Taking an evidence-based approach the book provides rationales and contextualized examples of health at the community level. Key topics include non-communicable diseases, disability, addiction, abuse and mental health. This book provides a practical guide for community health workers including field workers, programme managers, medical professionals involved in front line health care, administrators, health planners and postgraduate students
Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.Method: Participatory action research approaches... more
Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.Conclusions and Implications: This study underscores the need for integrated commu...
This study has investigated the impacts of the Community Lay-Leaders Health Training Certificate course on trainees and their communities, specific to the state of Uttarakhand, north India. A suite of semi-structured interviews and focus... more
This study has investigated the impacts of the Community Lay-Leaders Health Training Certificate course on trainees and their communities, specific to the state of Uttarakhand, north India. A suite of semi-structured interviews and focus group discussions were conducted among course stakeholders and graduates respectively, and textual data was added to the data set. Thematic analysis of the results revealed four themes, including: (1) the effectiveness of course design and delivery, together with the key role of the Coordinating Facilitator; (2) the match between graduates’ practices, the providing institution’s objectives and general expectations of community health worker; (3) the strengthening of the health system through skills multiplication, collaboration with existing authorities, and advocacy for higher quality in professional practice; and (4) the need for ongoing support and training post-graduation. The findings are consistent with literature concerning community health w...
Physical triggers of multisite pain (MSP) have typically been the focus if treatment regimens for MSP in low and middle income countries (LMICS). We explored the non-physical dimension of MSP, particularly the presence of mental ill... more
Physical triggers of multisite pain (MSP) have typically been the focus if treatment regimens for MSP in low and middle income countries (LMICS). We explored the non-physical dimension of MSP, particularly the presence of mental ill health and other possible risk factors. We conducted a case-control study among 140 female participants in North India in early 2019. We used structured interviews to assess pain, and validated mental health questionnaires to determine presence of depression and neurotic disorders. Statistical analyses of multisite pain, mental health and demographic data found strong associations between multisite pain and depression and neurotic disorder. Marital status (women who had been widowed, separated or unmarried) was the only demographic factor found to have a significant association with the experience multisite pain. We conclude that non-physical factors such as mental health need to be considered by treating practitioners, and included within national treat...
Background and Aims: Non-communicable diseases (NCDs) account for 61% of deaths in India. This review focuses on Community Health Workers’ (CHW) effectiveness in preventing and managing NCDs in India which could help direct future... more
Background and Aims: Non-communicable diseases (NCDs) account for 61% of deaths in India. This review focuses on Community Health Workers’ (CHW) effectiveness in preventing and managing NCDs in India which could help direct future research and government policy. Methods: A search of PubMed, Ovid, Embase and CINAHL using terms related to “community health workers” and “India” was used to find articles that quantitatively measured the effect of CHW delivered interventions on NCD risk and health outcomes. Results: CHW interventions are associated with improved health outcomes, metabolic parameters, and lifestyle risk factors in diabetes, cardiovascular disease, and oral cancer. Current literature on CHW interventions for NCDs in India is limited in number of studies and the scope of NCDs covered. Conclusion: There is weak to moderate evidence that CHWs can improve NCD health outcomes in India.
Background The COVID-19 crisis in India negatively impacted mental health due to both the disease and the harsh lockdown, yet there are almost no qualitative studies describing mental health impacts or the strategies of resilience used,... more
Background The COVID-19 crisis in India negatively impacted mental health due to both the disease and the harsh lockdown, yet there are almost no qualitative studies describing mental health impacts or the strategies of resilience used, and in particular, no reports from the most vulnerable groups. This study aimed to examine the acute mental health impacts of the COVID-19 crisis as well as coping strategies employed by disadvantaged community members in North India. Methods We used an intersectional lens for this qualitative study set in rural Tehri Garwhal and urban Dehradun districts of Uttarakhand, India. In-depth interviews were conducted in May 2020 during lockdown, by phone and in person using purposive selection, with people with disabilities, people living in slums with psychosocial disabilities and widows (total n = 24). We used the framework method for analysis following steps of transcription and translation, familiarisation, coding, developing and then applying a framew...
ObjectiveThis study aims to quantify the extent to which people’s use of tobacco products varies by local areas (city ward and village) across India and the variation in this clustering by tobacco products.DesignCross-sectional... more
ObjectiveThis study aims to quantify the extent to which people’s use of tobacco products varies by local areas (city ward and village) across India and the variation in this clustering by tobacco products.DesignCross-sectional study.Setting and participantsData on 73 954 adults across 2547 city wards and villages were available for analysis from 30 states and 2 union territories in India.Primary and secondary outcome measuresWe included as primary outcomes self-reported any tobacco use, current cigarette smoking, current bidi smoking, current smokeless tobacco use and a derived variable for dual use describing respondents who engaged in both smoking and smokeless tobacco use.ResultsThe median risk of an individual using tobacco was 1.64 times greater if a person hypothetically moved from an area of low to high risk of tobacco use (95% CI: 1.60 to 1.69). Area-level partitioning of variation differed by tobacco product used. Median ORs ranged from 1.77 for smokeless tobacco use to 2....
IntroductionCurrent evidence indicates an alarming increase in topical steroid (TS) misuse in India. Data regarding the magnitude and characteristics of this problem in rural India, where 68% of the population resides, are insufficient.... more
IntroductionCurrent evidence indicates an alarming increase in topical steroid (TS) misuse in India. Data regarding the magnitude and characteristics of this problem in rural India, where 68% of the population resides, are insufficient. This study analyses the magnitude, causes, characteristics and consequences of TS misuse in rural India. It also examines the association between TS misuse and patients’ perception of skin disease.MethodsA mixed-method observational study was conducted among the attendees of the dermatology outpatient department in a rural North Indian hospital. Those with a history of TS misuse were analysed for behaviour patterns and outcome.ResultsOut of 723 patients, 213 (29.2%) misused TS. Clobetasol propionate (58.2%) was most commonly misused. Seventy brands of inappropriate fixed drug combination steroid creams were recovered from the patients. Pharmacists and local healers together contributed to 78% of the sources for steroid misuse. Almost 58% of participa...
Background Disabled People’s Organisations (DPOs) are the mainstay of disability responses worldwide. Yet there is no quantitative data assessing their effectiveness in low-and middle-income countries (LMICs). The aim of this study was to... more
Background Disabled People’s Organisations (DPOs) are the mainstay of disability responses worldwide. Yet there is no quantitative data assessing their effectiveness in low-and middle-income countries (LMICs). The aim of this study was to measure the effectiveness of DPOs as a low-cost intervention to improve well-being and access to services and facilities for people with disabilities. Methods We undertook a cluster randomised intervention control trial across 39 distinct rural villages in Uttarakhand State, North India. A total of 527 participants were included from 39 villages: 302 people from 20 villages were assigned to the intervention arm and 225 from 19 villages were assigned to the control group. Over a 2-year period, people with disabilities were facilitated to form DPOs with regular home visits. Participants were also given financial support for public events and exposure visits to other DPOs. Seven domains were used to measure access and participation. Results DPO format...
India implemented larger 85% pictorial health warnings on all tobacco products from 1 April 2016. However, to remove the last bit of glamour and attraction from the tobacco packs, it must now embrace plain packaging. Plain packaging... more
India implemented larger 85% pictorial health warnings on all tobacco products from 1 April 2016. However, to remove the last bit of glamour and attraction from the tobacco packs, it must now embrace plain packaging. Plain packaging prevents tobacco packs from carrying the tobacco industry brand imagery as mobile billboards. Postimplementation of larger 85% pictorial health warnings on all tobacco products, this analysis was undertaken to assess the feasibility of plain packaging as the next logical tobacco control policy measure in India. As part of this analysis, the research team reviewed the available literature on legal and policy challenges to plain packaging as a tobacco control policy initiative for India. Literature from 2010 to 2016 in English language was reviewed, which reveals that, India has taken several preparatory steps implemented by other countries like Australia and the UK that have introduced plain packaging, for example, stronger smoke-free laws, ban on tobacco...
ObjectivesThis study used a population-based cross-sectional survey to describe the prevalence of psychosocial disability and unmet need for access to services in North India.SettingThis study was conducted in Dehradun district,... more
ObjectivesThis study used a population-based cross-sectional survey to describe the prevalence of psychosocial disability and unmet need for access to services in North India.SettingThis study was conducted in Dehradun district, Uttarakhand, in 2014.ParticipantsA population-based sample of 2441 people over the age of 18 years.Primary outcome measuresThe Rapid Assessment of Disability survey tool identified people with disability and used an adapted version of the Kessler scale to identify those with psychosocial disability. It additionally collected information on socioeconomic variables, access to community services and barriers to participation. Prevalence of psychosocial disability and unmet needs and descriptions of barriers to services were calculated, and multivariable logistic regression was used to assess associations between risk factors and psychosocial disability.ResultsPrevalence of psychosocial disability was 4.8% and 75% of participants with psychological distress also...
Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available.  This study aimed to estimate disability prevalence, determine associated... more
Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available.  This study aimed to estimate disability prevalence, determine associated socio-demographic factors and compare access in the community between people with and without disability in Dehradun district of Uttarakhand, India, using the Rapid Assessment of Disability Survey.Methods: A cross-sectional population-based survey was conducted on a sample of 2431 adults, selected using a two-stage cluster randomised sampling technique.  The survey comprised an interviewer-administered household survey and an individual survey measuring disability, wellbeing and participation.  For each person with disability, an age and sex-matched control (without disability) was selected. In addition to prevalence, the difference in participation and barriers faced by people with and without disability were analysed.Results and Conclusions: The prevalence...
Children with Intellectual and Developmental Disabilities (IDD) face considerable challenges in participating in dental services. These challenges include resource constraints and inadequate skills of health service providers to work with... more
Children with Intellectual and Developmental Disabilities (IDD) face considerable challenges in participating in dental services. These challenges include resource constraints and inadequate skills of health service providers to work with this population. The aim was to scope published studies that addressed access to dental services for children with IDD in order to determine the extent to which various barriers have been researched, using an access framework derived from the literature. Access was defined to include the six dimensions of accessibility, availability, affordability, accommodation, acceptability, and appropriateness. Arksey and O'Malley's scoping review framework was used. Relevant databases (e.g., Medline) were searched for all empirical studies conducted from January 2000 to February 2017 that met inclusion criteria. Data were extracted along the six dimensions of the access framework. Sixteen international studies were identified which indicated common key...
Purpose: The aim of this study was to review peer-reviewed literature on the roles and functions of Disabled Peoples’ Organisations (DPOs) in low and middle-income countries, and their outputs and outcomes for people with... more
Purpose: The aim of this study was to review peer-reviewed literature on the roles and functions of Disabled Peoples’ Organisations (DPOs) in low and middle-income countries, and their outputs and outcomes for people with disabilities.Method: Online databases were searched without date or language limiters (Medline, CINAHL, Scopus, Embase and Cochrane), using a combination of two key word search strategies. Eleven studies were selected for inclusion in this review on the basis of predetermined inclusion and exclusion criteria. Included studies underwent quality assessment using the Critical Appraisal Skills Programme (CASP) and Downs and Black’s criteria for quality assessment. Data for thematic analysis was then grouped under the broad themes of: participation and factors that facilitate participation; development of partnerships and connections; and self-development and self-help.Results: There was some evidence within the included studies to suggest that DPOs can produce signific...
To review the current literature around the potential impact, effectiveness and perceptions of plain packaging in low income settings. A systematic review of the literature. 9 databases (PubMed, Global Health, Social Policy and Practice,... more
To review the current literature around the potential impact, effectiveness and perceptions of plain packaging in low income settings. A systematic review of the literature. 9 databases (PubMed, Global Health, Social Policy and Practice, Applied Social Sciences Index and Abstracts (ASSIA), CINAHL, PsycINFO, British Library for Development Studies (BLDS), Global Health Library and Scopus) were searched. The terms used for searching combined terms for smoking and tobacco use with terms for plain packaging. Studies investigating the impact of plain packaging on the determinants of tobacco use, such as smoking behaviour, appeal, prominence, effectiveness of health warnings, response to plain packs, attitudes towards quitting or likelihood of smoking in low-income settings, were identified. Studies must have been published in English and be original research of any level of rigour. Two independent reviewers assessed studies for inclusion and extracted data. The results were synthesised q...
This chapter explains the causes, types, and importance of disability, and ways in which needs of those with disability can be met through community-based rehabilitation (CBR). It explains how any CBR programme should be based on the... more
This chapter explains the causes, types, and importance of disability, and ways in which needs of those with disability can be met through community-based rehabilitation (CBR). It explains how any CBR programme should be based on the principles in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). It introduces the World Health Organization (WHO) CBR framework that shows the essential components of a programme. The chapter describes ways to identify people with disability in the community, how to assess their needs, and the importance of linking with community stakeholders and local CBR workers. The chapter goes into detail about the six steps of implementing a CBR programme: screening and assessment, maximizing function, setting up support groups, advocacy, mainstream inclusion, and programme monitoring and evaluation.
Young people experiencing mental ill-health are often excluded from peer networks, family events, education, marriage and employment. We evaluated a community-based, peer-led intervention guided by the Nae Disha (new pathways) program,... more
Young people experiencing mental ill-health are often excluded from peer networks, family events, education, marriage and employment. We evaluated a community-based, peer-led intervention guided by the Nae Disha (new pathways) program, targeting young people affected by mental ill-health in Uttarakhand, India. A total of 11 groups involving 142 young people (30 male, 112 female) and 8 peer facilitators participated, most of whom were enrolled in a community mental health program. The impact of the intervention on participation, mental health, and social strengths and difficulties was measured at baseline and endline using validated instruments. The proportion experiencing significant social isolation reduced from 20.6 to 5.9% (p < 0.001), and those classified in the ‘abnormal’ range of the social difficulties measure halved from 42.6 to 21.3% (p < 0.001). These findings clearly demonstrate that perceptions of social inclusion and mental health of young people affected by mental illness can be significantly strengthened through participation in this low-resource intervention.
Background: The COVID-19 crisis in India negatively impacted mental health due to both the disease and the harsh lockdown, yet there are almost no qualitative studies describing mental health impacts or the strategies of resilience used,... more
Background: The COVID-19 crisis in India negatively impacted mental health due to both the disease and the harsh lockdown, yet there are almost no qualitative studies describing mental health impacts or the strategies of resilience used, and in particular, no reports from the most vulnerable groups. This study aimed to examine the acute mental health impacts of the COVID-19 crisis as well as coping strategies employed by disadvantaged community members in North India.
Purpose: People with disability in rural India face multiple barriers accessing healthcare; our hypothesis is that children with intellectual disability suffer the same but little is known about the barriers faced by them. The objectives... more
Purpose: People with disability in rural India face multiple barriers accessing healthcare; our hypothesis is that children with intellectual disability suffer the same but little is known about the barriers faced by them. The objectives of the study were to identify the health seeking behaviours of families with children with intellectual disabilities and the barriers they faced accessing healthcare. Methods: This qualitative study involved interviewing caregivers of children with intellectual disability from a pre-existing community development project in the Sahadoli Kadim block of rural Uttar Pradesh. Semi-structured interviews were also conducted with the local practitioners frequented by these caregivers.
Research Interests:
Research Interests:
Objective: To investigate a novel methodology, which was cost effective, to collect large amounts of data to further understand medication purchases and misuse in rural India. Background: In India it is estimated that one third of... more
Objective: To investigate a novel methodology, which was cost effective, to collect large amounts of data to further understand medication purchases and misuse in rural India. Background: In India it is estimated that one third of expenditure of households is spent on health related expenses, and medication purchases make up a large proportion of these costs. Methods: This study explores the research approach that was conducted in 2012-13 by Layleaders enrolled in the Community Lay-Leaders' Health Certificate Program initiative by Christian Medical College (CMC), Vellore, India. Results: The methodology demonstrated a large data collection capacity, where 100 Layleaders participated and collected over 5000 surveys across 515 villages in North, Central and North East India Conclusions: Incorporating opportunistic research methods into community health worker training can be a cost effective way to collect meaningful and useful data in rural India. This study demonstrates a successful methodology that may be transferable to other rural areas and others conducting research training as part of community health worker training should consider such opportunistic research
Research Interests:
Background: There are different estimates of disability prevalence reported in India due to the differences in definitions and methodologies. Reliable data is needed to plan effective disability inclusive strategies. Objective: The... more
Background: There are different estimates of disability prevalence reported in India due to the differences in definitions and methodologies. Reliable data is needed to plan effective disability inclusive strategies. Objective: The objective of this study was to determine the prevalence and risk factors associated with disability among adults >18 years of age in Prakasam district of Andhra Pradesh using the Rapid Assessment of Disability (RAD) tool. Methods: The RAD survey was conducted in 50 villages (clusters) of Ongole division of Prakasam district. A two-stage cluster random sampling was used. Within each village 80 participants were surveyed. Compact segment sampling was used to determine the houses included. A person was reported as disabled based on their responses to the functioning section of the RAD tool. Results: A total of 4134 adults were included. The overall prevalence of disability was 10.4% (431 adults). The highest prevalence of functional impairment was related to mobility (4.7%) followed by vision (2.1%) and fine motor (1.8%). The prevalence of psychological distress was 2.3%. Disability was significantly more prevalent in the poor socio economic group (OR 2.8; 95% CI: 1.5; 5.0) and among unemployed (OR 3.6; 95% CI: 2.3, 5.5). The prevalence of disability was strongly associated with age where, participants aged 70 years and over were eleven times more likely to report disability than younger age groups. Conclusion: The high prevalence of disability in the region points to disability being of public health concern and as a health condition needing urgent attention and specific interventions.
Research Interests:
Background: Persons with disability are often marginalised and excluded from international development efforts. This case study reviews the success of Uttarakhand Cluster of development NGOs in changing organisational behaviour towards... more
Background: Persons with disability are often marginalised and excluded from international development efforts. This case study reviews the success of Uttarakhand Cluster of development NGOs in changing organisational behaviour towards being disability inclusive in their development (DID) activities. Methods: A triangulation of qualitative research methods was used, including key informant interviews, focus group discussions and review of textual data. Results: The results synthesise data into Kotter's framework for organisational change, explaining the different stages of change experienced by the Cluster as it moved towards DID. Development of a disability mission, sharing of capacity and resources, and presence of disability champions were key in the organisations' transition towards DID. Conclusion: This case study demonstrates that the Cluster, a low-cost network, was able to drive organisational change and promote DID.
Research Interests:
Abstract Objective To review the current literature around the potential impact, effectiveness and perceptions of plain packaging in low income settings. Method A systematic review of the literature. Data sources 9 databases (PubMed,... more
Abstract
Objective To review the current literature around the potential impact, effectiveness and perceptions of plain packaging in low income settings.

Method A systematic review of the literature.

Data sources 9 databases (PubMed, Global Health, Social Policy and Practice, Applied Social Sciences Index and Abstracts (ASSIA), CINAHL, PsycINFO, British Library for Development Studies (BLDS), Global Health Library and Scopus) were searched. The terms used for searching combined terms for smoking and tobacco use with terms for plain packaging.

Study selection Studies investigating the impact of plain packaging on the determinants of tobacco use, such as smoking behaviour, appeal, prominence, effectiveness of health warnings, response to plain packs, attitudes towards quitting or likelihood of smoking in low-income settings, were identified. Studies must have been published in English and be original research of any level of rigour.

Data extraction Two independent reviewers assessed studies for inclusion and extracted data.

Data synthesis The results were synthesised qualitatively, with themes grouped under four key headings: appeal and attractiveness; salience of health warnings and perceptions of harm; enjoyment and perceived taste ratings; and perceptions of the impact on tobacco usage behaviour.

Results This review has identified four articles that met the inclusion criteria. Studies identified that tobacco products in plain packaging had less appeal than in branded packaging in low-income settings.

Conclusions This review indicates that plain packaging appears to be successful in reducing appeal of smoking and packets, and supports the call for plain packaging to be widely implemented in conjunction with other tobacco control policies. However, there are considerable gaps in the amount of research conducted outside high-income countries.
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Every day, 5500 children in India start using tobacco. If they continue the habit, as many do, the illnesses brought about by tobacco addiction will kill about half of them. In the meantime, Big Tobacco is allowed to continue glamorising... more
Every day, 5500 children in India start using tobacco. If they continue the habit, as many do, the illnesses brought about by tobacco addiction will kill about half of them. In the meantime, Big Tobacco is allowed to continue glamorising the habit through fancy packages that appeal to youngsters. Nearly half of all males in India use tobacco in some form. In total, about 275 million people use tobacco. Every year, it kills 1.2 million people in India. That's more than malaria and HIV put together. Often, the entire family is pushed into poverty by catastrophic healthcare expenditure, as well as the loss of the breadwinner – usually the male in the family. Throughout the Asia-Pacific region, tobacco use is one of the leading killers. It is responsible for more deaths than any other substance in India (and the world). Although tobacco control did not rate a mention when Indian Prime Minister Narendra Modi recently visited Australia, it is a significant threat to India's development. Australia is doing its part to help its neighbours in the region respond to this development issue. But while we are doing our part, we must be careful that regional trade agreements do not hinder our efforts. Tobacco companies are largely responsible for the dramatic rise in tobacco use in India while rates are decreasing in most developed countries. Until recently, tobacco companies in India promoted and advertised their products to adults and children alike. Thankfully, we know what works to control the epidemic of tobacco-related deaths and disability. In fact, Australia has been a world leader in determining what works: it has reduced smoking rates from 37 per cent when I was born in 1976 to a mere 13 per cent today. This translates into thousands of lives saved. Given our expertise in tobacco control, there can hardly be a section of development assistance where we have more to offer. We have a good record of exporting our tobacco-control expertise to India and other countries in the Asia-Pacific. Australian tobacco-control experts and the Australian government play an active role in promoting tobacco control in our region. For example, Victorian experts from the Cancer Council, McCabe Centre, Quit, the state government and the Nossal Institute for Global Health have helped develop tobacco-control programs across the Pacific, Thailand, China and India and even Mongolia. More recently, as the first country to introduce plain packaging in 2012, Australia has been helping India along the same path. One of the most effective strategies in tobacco control has been restricting advertising of this deadly product. Tobacco packets are one of the last legal avenues for advertising in many countries. My child was born after the ban on pack advertising and he will probably never see a tobacco advertisement. But he will see the deadly harms advertised, not least on tobacco packets. We want the same for children in India. The Nossal Institute, with support from the Australia-India Institute, gathered Australian tobacco-control experts to work with Indian public health experts, led by the Public Health Foundation of India, to explore the possibility of plain packaging in India. Through face-to-face meetings and conferences, the collaboration has produced research and a road map for plain packaging in India. The full report is available at http://www.aii.unimelb.edu.au/sites/default/files /Taskforce%20on%20Tobacco%20Control-Final.pdf. The new Modi government has already shown its mettle in tobacco control by moving to make India's pack warnings one of the largest in the world (85 per cent on both sides of the tobacco packs). We are hopeful India will also lead the world by becoming the first low or middle-income country to introduce plain packaging. For the first two weeks of this month, a delegation from India, funded by the Department of Foreign Affairs and Trade, is visiting Melbourne and the Department of Health in Canberra to develop comprehensive research and programs to support the introduction of plain packaging in India.
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Multilateral organizations, such as the World Health Organization, have traditionally not closely engaged with faith-based organizations. However, more recently, there has been a growing willingness among MOs to engage with FBOs. Factors... more
Multilateral organizations, such as the World Health Organization, have traditionally not closely engaged with faith-based organizations. However, more recently, there has been a growing willingness among MOs to engage with FBOs. Factors promoting this engagement have included the rise of economic neoliberalism and participatory paradigms, a realization that FBOs may enhance program effectiveness, and a need for greater cooperation to respond to HIV/AIDS. At the same time, paradoxically, engagement with FBOs conflicts with the Enlightenment ideology on which most MOs are based. This ideology has traditionally espoused secularism and relegated faith to the private domain. To reconcile this paradox, MOs have often imposed conditions requiring FBOs to remove faith activities from their programs. This potentially compromises the unique cultural identity of the FBO.
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LAST year the media was awash with news of natural disasters and their impact on health, including a typhoon that devastated the Philippines (http://www.theguardian.com/commentisfree/2014/jun/17/returning-to-the-philippines) and the... more
LAST year the media was awash with news of natural disasters and their impact on health, including a typhoon that devastated the Philippines (http://www.theguardian.com/commentisfree/2014/jun/17/returning-to-the-philippines) and the bushfires that wreaked havoc near Sydney (http://www.smh.com.au/nsw/nsw-bushfires-continue-to-ravage-state-as-residents-forced-to-evacuate-20131018-2vqe2.html). We also heard briefly about a flood disaster in North India (http://www.cbsnews.com/news/india-raises-flood-death-toll-reaches-5700-as-all-missing-persons-now-presumed-dead/) that trapped 120 000 pilgrims, killed more than 5000 people, and destroyed the livelihoods of hundreds of thousands of the world's poorest people. While most of us are aware of the scale and impact of the typhoon and the bushfires, how many are aware of the magnitude of the disaster in North India and how it played out? One of us (Grills) has worked in the worst affected area, where the disaster was only too real, and spent 3 weeks coordinating a large flood relief and medical aid program, facilitating a network of 50 locally mobilised health charities in Uttarakhand, though a group called CHGN (http://www.chgnukc.org/) , to respond to the floods. However, in Australia you would be forgiven for being unaware of how the disaster unfolded, as it generated only a few news articles over a couple of days, with riders that " no Australians have been reported missing or dead " , before disappearing from the Australian media coverage almost entirely but for the odd late report. This prompted us to wonder about the threshold for comprehensive international media coverage. How many people must die before a disaster becomes newsworthy, and does it not count if the victims do not include people from our own shores? Media coverage (http://www.globalissues.org/article/568/media-and-natural-disasters) of a natural disaster is not simply proportional to the number of people killed but instead seems more related to how " important " those lives were where the information is reported. This corresponds to what is termed the " cultural proximity (http://www.nabilechchaibi.com/resources/Straubhaar.Beyond%20Media%20Imperialism.pdf) " of those affected — that is, how similar they are to us. In developed countries, the media, and by extension the general public, care most when the disaster affects a rich western country, which is close to home and impacts on people like us. Other factors that affect newsworthiness include the magnitude of destruction, the poignancy of the stories of the dead and surviving, and " compassion fatigue (http://www.savan.nl/data/IntroductiontoCompassion-fatigue_Moeller.pdf) ". The 2011 Japanese tsunami (http://en.wikipedia.org/wiki/2011_T%C5%8Dhoku_earthquake_and_tsunami) made headlines for months and has been identified as the best-ever funded relief effort. Some 19 300 mainly well-off people in a rich country died in a highly dramatic natural disaster. Assistance) came from 116 countries and 28 international organisations to the tune of US$13.6 billion. There was similar media coverage following Hurricane Katrina (http://en.wikipedia.org/wiki/Hurricane_Katrina) in which 1833 Americans died. Despite around 5000 people dying (none of them Australian), the Uttarakhand floods were not visually dramatic, and affected mainly poor people living in impoverished circumstances in a low-to-middle-income country. Disproportionate media coverage of disasters matters. What became clear in the Uttarakhand flood disaster was that mobilising support is dependent on getting the story out, and that job is effectively done through media coverage. After the disaster only two Australian donors approached us after both became aware of the floods mainly through their local Indian offices. Other individual donors who have contributed generously became aware of the floods through Facebook posts, blogging and emails. One year after the floods have subsided in Uttarakhand the disaster is no longer media-worthy apart from a few articles in Indian papers marking the first anniversary last week. Yet the public health response must continue. In the previous 6 months we have been involved in providing basic interventions (http://www.spherehandbook.org /en/the-humanitarian-charter/) including the provision of shelter and safe water, and prevention of communicable diseases, which are common requirements for all displaced people. The return to some sort of normal routine such as schooling for children takes effort and resources and ideally should not be delayed. However, while clean children in new school uniforms and the arrival of " the first baby after (insert disaster-of-choice here) " make for good media stories, it gives the impression
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Disability affects over 1 billion people and the WHO estimates that over 80% of individuals with disability live in low and middle income countries, where access to health and social services to respond to disability are limited 1.... more
Disability affects over 1 billion people and the WHO estimates that over 80% of individuals with disability live in low and middle income countries, where access to health and social services to respond to disability are limited 1. Compounding this poverty is that medical and technological approaches to disability, however needed, are usually very expensive.  Yet, much can be done at low cost to increase the wellbeing of people with disability, and the church and Christians need to take a lead.

The WHO’s definition of disability highlights the challenge to us in global health. It has been defined by the WHO as “the interaction between a person’s impairments and the attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others”2. This understanding of disability requires us to go beyond mere healing and towards inclusion in our response to chronic diseases and disability.  This is known as the social model and requires societal attitudinal change and modification of disabling environments in order to facilitate those with disability to be included in our community and churches. These are good responses but the church needs to consider alternative models to those that are currently promoted which strive for independence as the ultimate endpoint.

In this paper I introduce some disability-related articles in this issue and outline an approach that goes beyond the Social Model towards an Interdependence Model which I think is a more Biblical model of disability and one which we Christians and churches in global health should consider.  This model would go beyond changing society to accommodate for people with disabilities towards acknowledging they play an important part in our community and indeed in our church.  We need those people with disability to contribute, love and bless those with and without disabilities.  And of course those with disability need the love, care and acceptance of those without disability. This is the society that is described in the Bible perhaps most clearly in 1 Corinthians 12:12-28.  In verse 22 Paul states that those who are seemingly weaker are actually indispensable.  When each part plays its role and depends on each other, we are a truly healthy, and a more biblical and better society.

This approach would promote the wellbeing and spiritual health of those people with disability and when undertaken by a church would not necessarily entail a high monetary cost.  Ultimately, it promotes the dignity of those with disability as created in God’s image for His purposes.
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Purpose: People with disability in rural India face multiple barriers accessing healthcare; our hypothesis is that children with intellectual disability suffer the same but little is known about the barriers faced by them. The objectives... more
Purpose: People with disability in rural India face multiple barriers accessing healthcare; our hypothesis is that children with intellectual disability suffer the same but little is known about the barriers faced by them. The objectives of the study were to identify the health seeking behaviours of families with children with intellectual disabilities and the barriers they faced accessing healthcare. Methods: This qualitative study involved interviewing caregivers of children with intellectual disability from a pre-existing community development project in the Sahadoli Kadim block of rural Uttar Pradesh. Semi-structured interviews were also conducted with the local practitioners frequented by these caregivers.
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Background: Networking between non-government organisations in the health sector is recognised as an effective method of improving service delivery. The Uttarakhand Cluster was established in 2008 as a collaboration of community health... more
Background: Networking between non-government organisations in the health sector is recognised as an effective method of improving service delivery. The Uttarakhand Cluster was established in 2008 as a collaboration of community health programs in rural north India with the aim of building capacity, increasing visibility and improving linkages with the government. This qualitative research, conducted between 2011-2012, examined the factors contributing to formation and sustainability of this clustering approach. Methods: Annual focus group discussions, indicator surveys and participant observation were used to document and observe the factors involved in the formation and sustainability of an NGO network in North India.
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Background. Nearly one-third of adults in India use tobacco, resulting in 1.2 million deaths. However, little is known about knowledge, attitudes, and practices (KAP) related to smoking in the impoverished state of Uttarakhand. Methods. A... more
Background. Nearly one-third of adults in India use tobacco, resulting in 1.2 million deaths. However, little is known about knowledge, attitudes, and practices (KAP) related to smoking in the impoverished state of Uttarakhand. Methods. A cross-sectional epidemiological prevalence survey was undertaken. Multistage cluster sampling selected 20 villages and 50 households to survey from which 1853 people were interviewed. Tobacco prevalence and KAP were analyzed by income level, occupation, age, and sex. 95% confidence intervals were calculated using standard formulas and incorporating assumptions in relation to the clustering effect. Results. The overall prevalence of tobacco usage, defined using WHO criteria, was 38.9%. 93% of smokers and 86% of tobacco chewers were male. Prevalence of tobacco use, controlling for other factors, was associated with lower education, older age, and male sex. 97.6% of users and 98.1% of nonusers wanted less tobacco. Except for lung cancer (89% awareness), awareness of diseases caused by tobacco usage was low (cardiac: 67%; infertility: 32.5%; stroke: 40.5%). Conclusion. A dangerous combination of high tobacco usage prevalence, ignorance about its dangers, and few quit attempts being made suggests the need to develop effective and evidence based interventions to prevent a health and development disaster in Uttarakhand.
Dermatological conditions account for a substantial proportion of the global burden of disease in low and middle income countries (Bickers D, Lim H, Margolis D, et al. The burden of skin diseases: 2004. A joint project of the American... more
Dermatological conditions account for a substantial proportion of the global burden of disease in low and middle income countries (Bickers D, Lim H, Margolis D, et al. The burden of skin diseases: 2004. A joint project of the American Academy of Dermatology Association and the Society for Investigative Dermatology. J Am Acad Dermatol 2006; 55: 490-500) and place major pressures on primary healthcare centers (Satimia F, McBride S, Leppard B. Prevalence of skin disease in rural Tanzania and factors influencing the choice of health care, modern or traditional. Arch Dermatol 1998; 134: 1363-1366). In mountainous North India, where limited resources are available for skin care, no dermatological data exists on prevalence, treatment patterns, or associations. The study aimed to measure prevalence and treatment of dermatological conditions and associated factors in Uttarakhand so to inform delivery of dermatological care and prevention programs in India. Single stage cluster randomized sam...
Campylobacter infection is a notifiable infectious disease in Victoria and with more than 6,000 cases notified annually, it is the second most commonly notified disease after chlamydia. The objectives of Campylobacter infection... more
Campylobacter infection is a notifiable infectious disease in Victoria and with more than 6,000 cases notified annually, it is the second most commonly notified disease after chlamydia. The objectives of Campylobacter infection surveillance in Victoria are to monitor the epidemiology of Campylobacter infection, identify outbreaks, initiate control and prevention actions, educate the public in disease prevention, evaluate control and prevention measures, and plan services and priority setting. An evaluation of the system was undertaken to assess performance against its objectives, identify areas requiring improvement and inform a decision of whether Campylobacter infection should remain a notifiable infectious disease. The surveillance system was assessed on the attributes of data quality, timeliness, simplicity and acceptability using notifiable infectious diseases data and interviews with doctors who had failed to notify, and laboratory and public health staff. The evaluation found...
General practitioners (GPs) tend to focus most of their energies on providing primary healthcare to individuals, with less attention to the overall population health issues in their community. In contrast, public health practitioners tend... more
General practitioners (GPs) tend to focus most of their energies on providing primary healthcare to individuals, with less attention to the overall population health issues in their community. In contrast, public health practitioners tend to focus on the health needs of entire populations, by addressing the social determinants of health, with less attention to individual patient care. This article seeks to provide a practical approach for GPs to incorporate a public health perspective in their everyday work. GPs have an important role in public health both through individual patient care and by engaging with public health issues at local, community and global levels. Adopting a population perspective to healthcare is an important part of modern general practice.
In India, since the 1990s, there has been a burgeoning of NGOs involved in providing primary health care. This has resulted in a complex NGO-Government interface which is difficult for lone NGOs to navigate. The Uttarakhand Cluster,... more
In India, since the 1990s, there has been a burgeoning of NGOs involved in providing primary health care. This has resulted in a complex NGO-Government interface which is difficult for lone NGOs to navigate. The Uttarakhand Cluster, India, links such small community health programs together to build NGO capacity, increase visibility and better link to the government schemes and the formal healthcare system. This research, undertaken between 1998 and 2011, aims to examine barriers and facilitators to such linking, or clustering, and the effectiveness of this clustering approach. Interviews, indicator surveys and participant observation were used to document the process and explore the enablers, the barriers and the effectiveness of networks improving community health. The analysis revealed that when activating, framing, mobilising and synthesizing the Uttarakhand Cluster, key brokers and network players were important in bridging between organisations. The ties (or relationships) tha...
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Objective: This descriptive epidemiological analysis aims to explore the benefits, risks and policy balance between a whole-of-population and high-risk reduction approach to reducing antenatal smoking prevalence.Methods: Using Victorian... more
Objective: This descriptive epidemiological analysis aims to explore the benefits, risks and policy balance between a whole-of-population and high-risk reduction approach to reducing antenatal smoking prevalence.Methods: Using Victorian hospital antenatal statistics the rate-ratio for smoking in each hypothesised high prevalence group was calculated and combined with the absolute number of births in each high-risk group. The effect on smoking prevalence of whole-of-population reductions and high-risk group reductions was then modelled.Results: In Victoria, there were higher rates of antenatal smoking among single [RR = 4.67 (3.46–4.42)], teenage women [RR (95%CI) = 3.26 (3.00–3.54)] of indigenous ethnicity [RR = 4.39 (3.94, 4.88)] with low income [RR = 4.67 (4.17–5.22)] and low education attainment [RR = 3.89 (3.47–4.36)] who lived in less accessible areas [RR = 2.14 (1.92–2.39)]. However, as each of these high-risk groups represents a relatively small proportion of mothers, most antenatal smokers are aged 25–34, educated, city-based, non-Indigenous and non-impoverished.Conclusions: The majority of Victorian women who smoke in pregnancy do not belong to traditional high-risk groups.Implications: Absolute reductions in smoking prevalence in high-risk groups can potentially be achieved by whole-of-population prevalence reductions, despite a potential continuance in high relative risk among these groups. Conversely, an exclusive focus on smoking reduction in high-risk groups may fail to reduce the whole-of-population antenatal smoking prevalence.
Objectives: To determine the community seropositivity of pandemic (H1N1) 2009 influenza in order to estimate immunity and the community attack rate.Methods: Selected clusters of participants (n=706) in the ‘Victorian Health Monitor’... more
Objectives: To determine the community seropositivity of pandemic (H1N1) 2009 influenza in order to estimate immunity and the community attack rate.Methods: Selected clusters of participants (n=706) in the ‘Victorian Health Monitor’ (VHM), from whom blood samples were taken between August and October 2009, were tested opportunistically for antibodies to pandemic (H1N1) 2009 influenza virus. A titre of ≥1:40 was chosen as the cut-off for recording seropositivity. The proportion (95% CI) of seropositive participants, aged 18 to <65 years of age, were computed for groups of census collection districts (CDs) across metropolitan Melbourne.Results: The observed pandemic (H1N1) 2009 seropositivity rates for all CDs tested in metropolitan Melbourne was 16.0% (95% CI:12.9-19.1%); in northern Melbourne subset was 14.4% (95% CI:12.4-16.3%); and in eastern subset was 16.2% (95% CI:9.7-22.6%). The pre-pandemic (H1N1) 2009 positivity rate was estimated at 6%.Conclusion: Given this study's estimate of 16.0% seropositivity in adults in metropolitan Melbourne, and given the WHO laboratory's estimate of 6% pre-pandemic positivity, the estimated adult community attack rate was 10% for metropolitan Melbourne.Implications: This community attack rate is lower than anticipated and suggests that levels of immunity to Pandemic (H1N1) 2009 might be lower than anticipated. Although limited by a low response rate of 34%, this study suggests low adult seropositivity, which may be useful for public health professionals when encouraging the community to get vaccinated.
To help bridge the obstacle of inadequate injury fatality data in low and medium income countries (LMICs) a simple cost effective system for mortuary surveillance of fatal injuries is being developed in consultation with the WHO. This... more
To help bridge the obstacle of inadequate injury fatality data in low and medium income countries (LMICs) a simple cost effective system for mortuary surveillance of fatal injuries is being developed in consultation with the WHO. This will inform, direct and monitor injury prevention (IP) interventions and policies in LMICs. This article uses CDC's ‘attributes of a successful surveillance system’ to describe the process, the barriers and solutions in development of this mortuary data guideline. The consultative process utilised generated feedback from key stakeholders including forensic pathologists, Ministry of Health officials and injury prevention experts. An International Advisory Group was also convened to guide the guideline development. These assisted the adjustment of the proposed guideline to maximise flexibility, acceptability and stability; whilst minimising resource implications. Representativeness and the securing of government support perhaps remain the most significant challenges. Consultation with the advisory group and the wider stakeholders has been effective in developing a widely acceptable, user-friendly, low resource data form to gather useful data. Further strategies to overcome barriers need to be developed over the course of the pilot study and this should be done in consultation with the advisory group and stakeholders.
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