Telehealth as a Strategy for Health Equity: A Scoping Review of Telehealth in India During and Following the COVID-19 Pandemic for People with Disabilities.

Introduction: Telehealth in India is growing rapidly and represents a strategy to promote affordable, inclusive, timely and safe access to healthcare. Yet there is a risk that telehealth increases inequity due to the digital divide and existing poor health literacy. Methods: A scoping review was conducted to explore use of telehealth in India during and following the COVID-19 pandemic by people with disabilities to inform strategies to increase equity of telehealth for people with disabilities. Of 1966 studies from the initial search in four databases and three specific telehealth journals, 20 sources met the inclusion criteria, limited to a focus on physical disability in India. Results: Findings showed examples of how people with disabilities can exercise increased control in the timing of appointments, convenience of receiving services from home and not having to travel to clinics or hospitals, and platform preference through tools and applications already familiar to them. Carers and families of people with disabilities were described as highly valued stakeholders with important roles in the uptake and effectiveness of telehealth for people with disabilities. The identified benefits of telehealth resulted in high levels of user satisfaction due to increased control and convenience, however, systemic barriers for accessibility remain. Conclusion: This review suggested that if telehealth is not designed intentionally to change the status quo for people with disabilities and prioritize equity, then the benefits may not be sustainable. Recommendations for telehealth India are provided, based on both findings from the literature and analysis of results.

Does the Nae Umeed group intervention improve mental health and social participation? A pre-post study in Uttarakhand, India.

There are few evidence-based interventions to support caregiver mental health developed for low- and middle-income countries. Nae Umeed is a community-based group intervention developed with collaboratively with local community health workers in Uttarakhand, India primarily to promote mental wellbeing for caregivers and others. This pre-post study aimed to evaluate whether Nae Umeed improved mental health and social participation for people with mental distress, including caregivers. The intervention consisted of 14 structured group sessions facilitated by community health workers. Among 115 adult participants, 20% were caregivers and 80% were people with disability and other vulnerable community members; 62% had no formal education and 92% were female. Substantial and statistically significant improvements occurred in validated psychometric measures for mental health (12-Item General Health Questionnaire, Patient Health Questionnaire-9) and social participation (Participation Scale). Improvements occurred regardless of caregiver status. This intervention addressed mental health and social participation for marginalised groups that are typically without access to formal mental health care and findings suggest Nae Umeed improved mental health and social participation; however, a controlled community trial would be required to prove causation. Community-based group interventions are a promising approach to improving the mental health of vulnerable groups in South Asia.

Scaling a group intervention to promote caregiver mental health in Uttarakhand, India: A mixed-methods implementation study.

Caregivers are integral to health and social care systems in South Asian countries yet are themselves at higher risk of mental illness. Interventions to support caregiver mental health developed in high-income contexts may be contextually inappropriate in the Global South. In this mixed-methods study, we evaluated the implementation and scaling of a locally developed mental health group intervention for caregivers and others in Uttarakhand, India. We describe factors influencing implementation using the updated Consolidated Framework for Implementation Research, and selected implementation outcomes. Key influencing factors we found in common with other programs included: an intervention that was relevant and adaptable; family support and stigma operating in the outer setting; training and support for lay health worker providers, shared goals, and relationships with the community and the process of engaging with organisational leaders and service users within the inner setting. We identified further factors including the group delivery format, competing responsibilities for caregivers and opportunities associated with the partnership delivery model as influencing outcomes. Implementation successfully reached target communities however attrition of 20% of participants highlights the potential for improving outcomes by harnessing enablers and addressing barriers. Findings will inform others implementing group mental health and caregiver interventions in South Asia.

Determining the vocational competencies required to deliver community-based rehabilitation and inclusive development services in India.

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.

Prevalence and predictive factors of strain among caregivers of people with disability: results from R-Care community survey, Kerala, India.

PURPOSE: Caregivers of people with disability experience difficulties in a variety of care domains. Understanding the predictive factors of caregiver strain is important in developing and implementing evidence-based intervention to reduce the difficulties experienced by the carers. METHODS: The current study is a cross sectional comprehensive one-phase survey conducted in randomly selected sub-districts (taluks) of the Ernakulam district in Kerala. Primary caregivers (n = 851) for persons with different kinds of disability were identified with the help of ASHAs (Accredited Social Health Activities) from the selected geographical locations and were interviewed in a house-to-house survey after obtaining written informed consent. Validated tools measuring caregiver strain, financial burden, access to services and wellbeing were used to study the population. RESULTS: Majority of the caregivers were females (77.3%) and spouses (35.2%). Of the caregivers 27% reported high levels of caregiver strain. The major factors associated with caregiver strain were female gender (B = 1.379, p = 0.000), financial issues (B = 0.105, p = 0.000), the general health of caregivers (B = 0.467, p = 0.000) and issues relating to employment (B = 0.956, p = 0.000) and the availability of government welfare services (B = 1.138, p = 0.000). CONCLUSION: High caregiver burden and strain is experienced by almost a third of people caring for a person with a disability. Comprehensive interventions to reduce caregiver strain should be developed.Implications for rehabilitationThe rehabilitation sector needs to be made aware of the high levels of caregiver strain (especially in carers who were female, unemployed, have health issues and lack formal support).To improve wellbeing for people with disability we firstly need to promote social inclusion and support schemes for caregiver.Co-designed systems are needed to assist carers to access formal and informal support resources, and increase social connectedness.

The lived experience of carers who assist people with disability in Ernakulam, Kerala, India.

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.

Improving Social Inclusion for Young People Affected by Mental Illness in Uttarakhand, India.

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.

"We've got through hard times before: acute mental distress and coping among disadvantaged groups during COVID-19 lockdown in North India - a qualitative study".

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 framework, charting and then interpreting data. FINDINGS: The participants with compounded disadvantage had almost no access to mobile phones, health messaging or health care and experienced extreme mental distress and despair, alongside hunger and loss of income. Under the realms of intrapersonal, interpersonal and social, six themes related to mental distress emerged: feeling overwhelmed and bewildered, feeling distressed and despairing, feeling socially isolated, increased events of othering and discrimination, and experiencing intersectional disadvantage. The six themes summarising coping strategies in the COVID-19 crisis were: finding sense and meaning, connecting with others, looking for positive ways forward, innovating with new practices, supporting others individually and collectively, and engaging with the natural world. CONCLUSIONS: People intersectionally disadvantaged by their social identity experienced high levels of mental distress during the COVID-19 crisis, yet did not collapse, and instead described diverse and innovative strategies which enabled them to cope through the COVID-19 lockdown. This study illustrates that research using an intersectional lens is valuable to design equitable policy such as the need for access to digital resources, and that disaggregated data is needed to address social inequities at the intersection of poverty, disability, caste, religious discrimination and gender inherent in the COVID-19 pandemic in India.

Geographic variation in tobacco use in India: a population-based multilevel cross-sectional study.

OBJECTIVE: This 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. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: Data 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 MEASURES: We 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. RESULTS: The 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 2.53 for dual use. CONCLUSIONS: Tobacco use is highly clustered geographically in India. To be effective in India, policy interventions should be directed to influence specific local contextual factors on adult tobacco use. Where people live in India influences their use of tobacco, and this association may be greater than has been observed in other settings. Tailoring tobacco control policies for local areas in India may, therefore, provide substantial public health benefits.

Magnitude, characteristics and consequences of topical steroid misuse in rural North India: an observational study among dermatology outpatients.

INTRODUCTION: Current 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. METHODS: A 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. RESULTS: Out 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 participants perceived their skin conditions to be allergic reactions to food, when in fact 70.1% were tinea, 10% scabies and 9% acne. Eighty per cent of the respondents having tinea had tinea incognito and 97% had extensive lesions. Eighty-five per cent of the participants with scabies had atypical lesions and 80% with acne had steroid rosacea or aggravation of acne. The median expenditure incurred in purchasing these potentially harmful steroid creams was Rs 1000 (US$14.1, equivalent to 3 days' wages of a labourer). CONCLUSION: Steroid misuse is a problem of epidemic proportion in rural India. This practice is changing the profile of many common and infective skin conditions, which portends diagnostic dilemmas and therapeutic challenges for clinicians. Misconceptions about skin disease drive the public to seek 'quick fixes' from non-allopathic providers who have unrestricted access to potent steroids. There is an urgent need to tighten regulatory controls over the manufacturing, sale and prescription of irrational TS combinations.

Disabled People's Organisations increase access to services and improve well-being: evidence from a cluster randomized trial in North India.

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 formation had improved participation in community consultations (OR 2.57, 95% CI 1.4 to 4.72), social activities (OR 2.46, 95% CI 1.38 to 4.38), DPOs (OR 14.78, 95% CI 1.43 to 152.43), access to toilet facilities (OR 3.89, 95% CI 1.31 to 11.57), rehabilitation (OR 6.83, 95% CI 2.4 to 19.42) and Government social welfare services (OR 4.82, 95% CI 2.35 to 9.91) in intervention when compared to the control. People who were part of a DPO had an improvement in having their opinion heard (OR 1.94, 95% CI 1.16 to 3.24) and being able to make friends (OR 1.63, 95% CI 1 to 2.65) compared to those who were not part of a DPO. All other well-being variables had little evidence despite greater improvement in the DPO intervention group. CONCLUSIONS: This is the first randomised control trial to demonstrate that DPOs in LMICs are effective at improving participation, access and well-being. This study supports the ongoing role of DPOs in activities related to disability inclusion and disability services. This study also suggests that supporting the establishment, facilitation and strengthening of DPOs is a cost-effective intervention and role that non-governmental organisations (NGOs) can play. TRIAL REGISTRATION: ISRCTN36867362, 9th Oct 2019 (retrospectively registered).

Adolescent and adult perceptions of the effects of larger size graphic health warnings on conventional and plain tobacco packs in India: A community-based cross-sectional study.

INTRODUCTION: We studied adolescent and adult perceptions of the effects of larger size, 85% versus 40%, Graphic Health Warnings (GHWs) on conventional and plain tobacco packs, in India. METHODS: A cross-sectional survey was conducted with 2121 participants (aged ≥13 years), during the period 2015-16, in Delhi and Telangana, India. Four categories of GHWs on tobacco packs were shown: A - 40% existing (April 2013-April 2016), B - 40% new (April 2016-present), C - 85% new, and D - plain packs (85% new). Regression models tested percentage differences in choice of categories for eight outcomes, adjusted for gender, area of residence, socioeconomic status, age, and tobacco use. RESULTS: Of the total 2121 participants, 1120 were from Delhi, 1001 from Telangana, 50% were males, 62% were urban residents, 12% were adolescents, and 72% had never used tobacco. Among packs shown, the majority of participants perceived the 85% size GHWs more effective than the 40% size GHWs across all outcomes. The perceived increase in noticeability of GHWs was 45% for category C (p<0.05) and 43.5% for category D (p<0.05) versus category B. In Delhi, participants perceived plain packs to be most effective in motivating quitting, preventing initiation and conveying the health message. In Telangana, adolescents believed GHWs on plain packs were most noticeable, most effective for quitting and preventing initiation. CONCLUSIONS: The larger size 85% GHWs were perceived to be more effective in increasing noticeability of warnings, motivating cessation, preventing initiation, and conveying the intended health message. Support for plain packaging was higher in Delhi and among adolescents in Telangana.

A multicentric cross-sectional study to characterize the scale and impact of polypharmacy in rural Indian communities, conducted as part of health workers training.

CONTEXT: Polypharmacy and inappropriate medication usage is one of the world's most important public health issues. Yet in rural India, where medications are readily available, little is known about polypharmacy. AIM: This study explores factors related to polypharmacy in rural India to inform the response. SETTINGS AND DESIGN: A household survey was conducted by community health trainees, across 515 Indian villages collecting medication prescription and usage information for single illness in the past month. METHODS AND MATERIAL: Polypharmacy was defined as the concurrent usage of four or more medications for single illness. Data from 515 rural India villages were collected on medication usage for their last illness. Respondents who consulted one healthcare provider for this illness were included for analysis. STATISTICAL ANALYSIS USED: Bivariate logistic regression and multivariate generalized estimating equation analysis were used to explore associations with polypharmacy. RESULTS: Prevalence of polypharmacy was 13% (n = 273) in the sample and ranges between 1% and 35% among Indian states. Polypharmacy was common among prescriptions for nonspecific symptoms (15%, N = 404). People aged over 61 years compared with people aged between 20 and 60 years (OR 1.11, 95% CI 1.03-1.19) and people with income of over 3,000 INR/month (OR 1.04, 95% CI 1.00-1.07) were more likely to be prescribed four or more medications. CONCLUSIONS: The study demonstrates high rates of polypharmacy, identifies vulnerable populations, and provides information to improve the response to polypharmacy in rural India.

Prevalence of diabetes and pre-diabetes in rural Tehri Garhwal, India: influence of diagnostic method.

BACKGROUND: There are few available data regarding the prevalence of diabetes in the sub-Himalayan region of India. The aim of this study was to determine the prevalence of pre-diabetes and diabetes in rural Garhwal based on glycosylated hemoglobin. METHODS: In a cross-sectional survey of 500 adults from five randomly selected villages in Chamba, a mountainous Tehri Garhwal district in Uttarakhand in north-west India, we determined the prevalence of diabetes (hemoglobin (Hb) A1c ≥ 6.5%) and pre-diabetes (5.7% ≤ HbA1c ≤ 6.4%). In a sub-sample of those diagnosed with diabetes or pre-diabetes (n = 140), fasting blood glucose (FBG, n = 117) or postprandial blood glucose (PBG, n = 23), and blood hemoglobin concentration, was measured at follow-up. RESULTS: Based on HbA1c, 10.0% had diabetes and 56.4% pre-diabetes. Of those diagnosed as diabetic by HbA1c, 10 of 16 (62.5%) were diagnosed as diabetic by FBG (> 125 mg/dL) or PBG (≥200 mg/dL). In those diagnosed as pre-diabetic by HbA1c, only 55 of 124 (44.4%) were diagnosed as pre-diabetic by FBG (100-125 mg/dL) or PBG (140-199 mg/dL). A large proportion of these 140 individuals (67.1%) were moderately to severely anemic (Hb < 11.4 mg/dL). The diagnostic gap for pre-diabetes between HbA1c and FBG/PBG was similar for the groups with and without moderate to severe anemia. CONCLUSIONS: HbA1c and FBG/PBG have similar diagnostic performance for diabetes in this population. However, many individuals were diagnosed with pre-diabetes by HbA1c but not FBG/PBG. The relative excess diagnosis of pre-diabetes with HbA1c does not appear to be explained by anemia, an endemic condition in India. The prognostic significance of diagnosis of pre-diabetes by HbA1c but not FBG/PBG remains unknown, but merits investigation.

Promoting social inclusion for young people affected by psycho-social disability in India - a realist evaluation of a pilot intervention.

India has 600 million young people, more than any other country in the world. Mental illness is the leading burden of disease for young people, and those affected experience restrictions in social participation that compromise recovery. The aim of this study was to assess the impact of a peer-led, community-based, participatory group intervention on social inclusion and mental health among 142 young people affected by psycho-social disability (PSD) in Dehradun district, Uttarakhand. Qualitative data were obtained via in-depth interviews and focus-group discussions. A realist evaluation identified contextual factors, mechanisms and outcomes to develop the programme theory. Group participants described intermediate outcomes including establishment of new peer friendship networks, increased community participation, greater self-efficacy (for young women particularly), and improved public image (for young men) that are likely to have contributed to the primary outcomes of greater (self-perceived) social inclusion and improved mental health (as assessed quantitatively). Mechanisms were identified that explain the link between intervention and outcomes. These findings demonstrate the effectiveness of a brief intervention to improve mental health and social inclusion for young people with PSD and are potentially relevant to programme implementers and policy-makers working with young people and promoting social inclusion, in other low- and middle-income settings.

Plain packaging of tobacco products: the logical next step for tobacco control policy in India.

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 advertising, promotion and sponsorship, increase in taxes and a report from civil society task force on plain packaging. The trade and investment agreements signed by India are also within the international trade norms relating to public health. A Private Member's Bill on plain packaging is also pending in the Parliament of India. Other potential challenges against such policy decision, for example, freedom of trade, right to property, violation of competition law and other laws including consumer protection laws, were found unsubstantiated by the research team. Plain packaging is the next logical step for tobacco control policy in India.

Multiple barriers to participation for people with psychosocial disability in Dehradun district, North India: a cross-sectional study.

OBJECTIVES: This 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. SETTING: This study was conducted in Dehradun district, Uttarakhand, in 2014. PARTICIPANTS: A population-based sample of 2441 people over the age of 18 years. PRIMARY OUTCOME MEASURES: The 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. RESULTS: Prevalence of psychosocial disability was 4.8% and 75% of participants with psychological distress also reported comorbid functional impairments. Adjusted ORs for depression of more than two were found for people who were unschooled, unemployed and of moderate or poor socioeconomic status. The unmet need for access to services was significantly higher in every domain for people with psychosocial disability and was more than 25% in the areas of employment, health service access and community consultation. People with psychosocial disability encountered greater barriers in each domain compared with controls. CONCLUSIONS: People who are poor, uneducated and unemployed are two to four times more likely to have psychosocial disability in Dehradun district. They face unmet needs in accessing community services and perceive negative social attitudes, lack of physical accessibility and lack of information as barriers limiting their participation. Social policy must increase access to education and reduce poverty but additionally ensure action is taken in all community services to increase information, physical accessibility and social inclusion of people with psychosocial and other forms of disability.