Population-based cohort across stroke life course in India-The NIMHANS-NH-SKAN stroke project: A study protocol.

BACKGROUND: Stroke is a leading cause of death and disability worldwide. In India, it is the fourth leading cause of death and fifth leading cause of disability, posing a major public health concern. National surveys reveal an increasing trend in stroke risk factors such as tobacco use, physical activity, alcohol use, hypertension, and dyslipidemia. However, knowledge regarding the combined effect of these risk factors and their various combinations is limited. Understanding the individual, combined, and synergistic effects of known risk factors, along with new risk factors, is essential to address gaps in stroke epidemiology. This study aims to examine the effect of various risk factors of acute stroke and their association with stroke occurrence and its outcomes (survival, disability and quality of life). METHODS: This retrospective-prospective cohort will be conducted in one taluka of Kolara district and two urban wards of Bengaluru with a total population of ~400,000. All stroke-free individuals above 30 years of age ~200,000 individuals in the selected sites will be participants of stroke-free period and all first ever stroke patients in the community will be part of stroke and post-stroke period respectively. The study subjects will be recruited through a complete house-to-house survey at baseline and undergo annual follow-ups during the stroke-free period, with specific assessments at defined time points during the stroke and post-stroke period for a period of one year. Efforts are implemented to minimize loss to follow-up, including community engagement, a helpline number, and hospital-based surveillance. DISCUSSION: This large population-based cohort study addressing stroke epidemiology in the country, is one -of-its-kind, attempting to fill certain critical gaps in the natural history, management, and outcomes of stroke in India. This research has the potential to provide important insights into the effect of novel risk factors of stroke and various combinations of risk factors of stroke. Furthermore, the development of a stroke risk predictability calculator will add value to the existing Indian National Programme for Prevention & Control of Non-Communicable Diseases (NP-NCD) and offers a model for similar countries once developed.

Establishing partnerships with people with lived experience of mental illness for stigma reduction in low- and middle-income settings.

Social contact refers to the facilitation of connection and interactions between people with and without mental health conditions. It can be achieved, for example, through people sharing their lived experience of mental health conditions, which is an effective strategy for stigma reduction. Meaningful involvement of people with lived experience (PWLE) in leading and co-leading anti-stigma interventions can/may promote autonomy and resilience. Our paper aimed to explore how PWLE have been involved in research and anti-stigma interventions to improve effective means of involving PWLE in stigma reduction activities in LMICs. A qualitative collective case study design was adopted. Case studies from four LMICs (China, Ethiopia, India and Nepal) are summarized, briefly reflecting on the background of the work, alongside anticipated and experienced challenges, strategies to overcome these, and recommendations for future work. We found that the involvement of PWLEs in stigma reduction is commonly a new concept in LMIC. Experienced and anticipated challenges were similar, such as identifying suitable persons to engage in the work and sustaining their involvement. Such an approach can be difficult because PWLE might be apprehensive about the negative consequences of disclosure. In many case studies, we found that long-standing professional connectedness, continued encouragement, information sharing, debriefing and support helped the participants' involvement. We recommend that confidentiality of the individual, cultural norms and family concerns be prioritized and respected during the implementation. Taking into account socio-cultural contextual factors, it is possible to directly involve PWLEs in social contact-based anti-stigma interventions.

Attitudes to long-term care in India: A secondary, mixed methods analysis.

OBJECTIVES: In India, globalisation is purported to have contributed to shifting family structures and changing attitudes to long-term care (LTC) facility use. We investigated the attitudes to and usage frequency of LTC in India. METHODS: We conducted secondary analyses of: (a) The Moving Pictures India Project qualitative interviews with 19 carers for people with dementia and 25 professionals, collected in 2022, exploring attitudes to LTC; and (b) The Longitudinal Ageing Study in India (LASI) 2017-2018, cross-sectional survey of a randomised probability sample of Indian adults aged 45+ living in private households. RESULTS: We identified three themes from qualitative data: (1) LTC as a last resort, describes how LTC could be acceptable if care at home was "impossible" due to the person's medical condition or unavailability of the family carer, for example, if family members lived overseas or interstate. (2) Social expectations of care at home from family members and paid carers and; (3) Limited availability of LTC facilities in India, especially in rural localities, and the financial barriers to their use. Of 73,396 LASI participants, 40 were considering moving to LTC; 18,281 had a parent alive, of whom 9 reported that their father, and 16 that their mother, lived in LTC. LTC use was rare. While a third of participants with a living parent lived in urban areas, 14/24 of those with a parent in LTC lived in an urban area, supporting our qualitative findings that LTC is mainly accessed in urban areas. CONCLUSIONS: Preference for intergenerational community care combined with limited availability and societal stigma contribute to low rates of LTC use among Indian families. Future social policies should consider how to plan for greater equity in strengthening care at home and in the community, and bolstering respite and LTC services as a last resort.

Development of A Suicide Prevention Training Module for Social Work Students in India.

Introduction: Social workers constitute a significant task force that serves diverse populations experiencing psychosocial challenges in their daily lives. Lack of suicide prevention content/training in the Master of Social Work program may affect the student's self-esteem/ability to intervene when they come across a person with suicidality in the field. Developing a suicide prevention training module for social work students would be a suitable measure for upbringing their skills in dealing with individuals with suicidality. Method: The purpose of the present study was to develop a suicide prevention training module for social work students at the postgraduate level. The researcher conducted two Focused Group Discussions (FGD) each with social work students (n = 13) and social work educators (n = 15) on an online platform. Notes were taken during the discussion, and the contents were videotaped. The videotaped content was transcribed, and content analysis was used to analyze the data. The content that emerged from the FGD with social work students and educators was discussed in later FGD with mental health experts (two psychiatrists, one psychologist, two psychiatric social workers, and two mental health nurses). The discussion with experts clarified what components to retain for the training program. Results: Five major themes and 22 sub-themes emerged from the two FGDs each with students and educators, and one FGD with mental health professionals are described. The five major themes were understanding of suicidality, understanding suicide education in the master of social work curriculum, experience with suicidality, training content suggestion, and suggestions for future implications. Conclusions: The present study identified the need for suicide prevention training in postgraduate-level social work students. Furthermore, a lack of suicide prevention training was observed indicating the incorporation of suicide education in the postgraduate curriculum.

Relational Solidarity and Conflicting Ethics in Dementia Care in Urban India.

OBJECTIVES: Using the concept of relational solidarity, we examine how autonomy, equality, dignity, and personhood are practiced in the care of people living with dementia at home in urban India. METHODS: Video interviews with 19 family carers and 25 health providers conducted in English, Hindi, and Kannada in Bengaluru between March and July 2022. Data were translated into English and thematically analyzed. RESULTS: Family carers and providers unanimously agreed that people with dementia should be respected and cared for. Concurrently, they perceived people with dementia as being "like a kid" and used the analogy of a parent-child relationship to understand their care responsibilities. This analogy informed how ethical principles such as personhood and equality were reframed in the relationships between family carers and people with dementia, as well as how carers and providers maintained the safety but undermined the autonomy of people with dementia through restricting their movements inside and outside the home. DISCUSSION: There can be relational solidarity in dementia care at home in urban India but also contradictions in the interpretations and applications of the ethical principles of autonomy, equality, dignity, and personhood. As such, a more organic, grassroots model of ethical practice is needed to frame care and provide material support to families in India.

Attitudes to long-term care in India: a secondary mixed-methods analysis.

BACKGROUND: India is the world's most populous country, and overseas Indians the world's largest diaspora. Many of the more than 1·4 million UK-based Indians will be providing care at a distance for parents living in India. Globalisation has contributed to a shift in India from traditional joint family systems to more nuclear structures. We investigated how commonly Indian parents consider and use long-term care facilities and attitudes to their use. METHODS: We did a secondary mixed-methods statistical analysis of the LASI (Longitudinal Ageing Study in India), a national, cross-sectional household survey administered in 2017-18 to 73 396 randomly selected adults aged 45 years and older in all Indian states and Union Territories (42 261 [58%] women, 31 135 [42%] men). We report the proportion and sociodemographic predictors of respondents' parent(s) living in a care home. We also did a secondary thematic analysis of the qualitative interviews from the Moving Pictures India Study, exploring attitudes to long-term care in 2022. These interviews included 19 carers (nine [47%] women; age range 31-79 years) for people with dementia and 25 professionals (19 [76%] women; age range 24-56 years) purposively selected for diversity from networks of the team based at a Bangalore hospital, India. FINDINGS: 24 LASI participants reported that their parent was living in a long-term care facility (father [n=8], mother [n=15], both parents [n=1]). Although rare overall, use and consideration of use of long-term care were more frequently reported in urban areas (n=14, 58%), by people in middle-income quintiles (n=17, 71%) with higher levels of education (n=7, 29%), who rated their health as good or very good (n=15, 63%). The themes identified in qualitative interviews were the use of long-term care facilities as a last resort, social expectations, and limited availability of long-term care facilities. INTERPRETATION: Although interviews were only conducted in Bangalore and respondents could misrepresent living arrangements due to ongoing societal stigma, the data show that very few people reside in old age homes across India, with strong preference towards intergenerational and community care. With the UK home to a growing diaspora of nuclear Indian families, our findings illustrate the contexts in which they provide care at a distance, navigating cross-cultural attitudes and social norms around long-term care. FUNDING: Alzheimer's Association US.

Improving the lives of ethnically diverse family carers and people living with dementia using digital media resources - Protocol for the Draw-Care randomised controlled trial.

Objectives: Ethnically diverse family carers of people living with dementia (hereafter carers and people with dementia) experience more psychological distress than other carers. To reduce this inequality, culturally adapted, multilingual, evidence-based practical assistance is needed. This paper details the Draw-Care study protocol including a randomised control trial (RCT) to test the effectiveness of a digital intervention comprising a multilingual website, virtual assistant, animated films, and information, on the lives of carers and people with dementia in Australia. Methods: The Draw-Care intervention will be evaluated in a 12-week active waitlist parallel design RCT with 194 carers from Arabic, Cantonese, Greek, Hindi, Italian, Mandarin, Spanish, Tamil, and Vietnamese-speaking language groups. Our intervention was based on the World Health Organization's (WHO) iSupport Lite online carer support messages and was co-designed with carers, people with dementia, service providers, and clinicians. Culturally adapted multilingual digital resources were created in nine languages and English. Results: In Phase I (2022), six co-design workshops with stakeholders and interviews with people with dementia informed the development of the intervention which will be trialled and evaluated in Phases II and III (2023 and 2024). Conclusions: Digital media content is a novel approach to providing cost-effective access to health care information. This study protocol details the three study phases including the RCT of a co-designed, culturally adapted, multilingual, digital intervention for carers and people with dementia to advance the evidence in dementia and digital healthcare research and help meet the needs of carers and people with dementia in Australia and globally.

'It's Too nice': Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia.

OBJECTIVES: Resources to support dementia carers from ethnically diverse families are limited. We explored carers' and service providers' views on adapting the World Health Organization's iSupport Lite messages to meet their needs. METHODS: Six online workshops were conducted with ethnically diverse family carers and service providers (n = 21) from nine linguistic groups across Australia. Recruitment was via convenience and snowball sampling from existing networks. Data were analyzed using thematic analysis. RESULTS: Participants reported that iSupport Lite over-emphasized support from family and friends and made help-seeking sound "too easy". They wanted messages to dispel notions of carers as "superheroes", demonstrate that caring and help-seeking is stressful and time-consuming, and that poor decision-making and relationship breakdown does occur. Feedback was incorporated to co-produce a revised suite of resources. CONCLUSIONS: Beyond language translation, cultural adaptation using co-design provided participants the opportunity to develop more culturally relevant care resources that meet their needs. These resources will be evaluated for clinical and cost-effectiveness in future research. CLINICAL IMPLICATIONS: By design, multilingual resources for carers must incorporate cultural needs to communicate support messages. If this intervention is effective, it could help to reduce dementia care disparities in ethnically diverse populations in Australia and globally.

Reducing stigma and improving access to care for people with mental health conditions in the community: protocol for a multi-site feasibility intervention study (Indigo-Local).

Background: Stigma and discrimination towards people with mental health conditions by their communities are common worldwide. This can result in a range of negative outcomes for affected persons, including poor access to health care. However, evidence is still patchy from low- and middle-income countries (LMICs) on affordable, community-based interventions to reduce mental health-related stigma and to improve access to mental health care. Methods: This study aims to conduct a feasibility (proof-of-principle) pilot study that involves developing, implementing and evaluating a community-based, multi-component, public awareness-raising intervention (titled Indigo-Local), designed to reduce stigma and discrimination and to increase referrals of people with mental health conditions for assessment and treatment. It is being piloted in five LMICs - China, Ethiopia, India, Nepal and Tunisia - and includes several key components: a stakeholder group workshop; a stepped training programme (using a 'Training of Trainers' approach) of community health workers (or similar cadres of workers) and service users that includes repeated supervision and booster sessions; awareness-raising activities in the community; and a media campaign. Social contact and service user involvement are instrumental to all components. The intervention is being evaluated through a mixed-methods pre-post study design that involves quantitative assessment of stigma outcomes measuring knowledge, attitudes and (discriminatory) behaviour; quantitative evaluation of mental health service utilization rates (where feasible in sites); qualitative exploration of the potential effectiveness and impact of the Indigo-Local intervention; a process evaluation; implementation evaluation; and an evaluation of implementation costs. Discussion: The outcome of this study will be contextually adapted, evidence-based interventions to reduce mental health-related stigma in local communities in five LMICs to achieve improved access to healthcare. We will have replicable models of how to involve people with lived experience as an integral part of the intervention and will produce knowledge of how intervention content and implementation strategies vary across settings. The interventions and their delivery will be refined to be acceptable, feasible and ready for larger-scale implementation and evaluation. This study thereby has the potential to make an important contribution to the evidence base on what works to reduce mental health-related stigma and discrimination and improve access to health care.

Toward a multi-level strategy to reduce stigma in global mental health: overview protocol of the Indigo Partnership to develop and test interventions in low- and middle-income countries.

There is increasing attention to the impacts of stigma and discrimination related to mental health on quality of life and access to and quality of healthcare. Effective strategies for stigma reduction exist, but most evidence comes from high-income settings. Recent reviews of stigma research have identified gaps in the field, including limited cultural and contextual adaptation of interventions, a lack of contextual psychometric information on evaluation tools, and, most notably, a lack of multi-level strategies for stigma reduction. The Indigo Partnership research programme will address these knowledge gaps through a multi-country, multi-site collaboration for anti-stigma interventions in low- and middle-income countries (LMICs) (China, Ethiopia, India, Nepal, and Tunisia). The Indigo Partnership aims to: (1) carry out research to strengthen the understanding of mechanisms of stigma processes and reduce stigma and discrimination against people with mental health conditions in LMICs; and (2) establish a strong collaborative research consortium through the conduct of this programme. Specifically, the Indigo Partnership involves developing and pilot testing anti-stigma interventions at the community, primary care, and mental health specialist care levels, with a systematic approach to cultural and contextual adaptation across the sites. This work also involves transcultural translation and adaptation of stigma and discrimination measurement tools. The Indigo Partnership operates with the key principle of partnering with people with lived experience of mental health conditions for the development and implementation of the pilot interventions, as well as capacity building and cross-site learning to actively develop a more globally representative and equitable mental health research community. This work is envisioned to have a long-lasting impact, both in terms of the capacity building provided to participating institutions and researchers, and the foundation it provides for future research to extend the evidence base of what works to reduce and ultimately end stigma and discrimination in mental health.

Deep phenotyping and genomic data from a nationally representative study on dementia in India.

The Harmonized Diagnostic Assessment of Dementia for the Longitudinal Aging Study in India (LASI-DAD) is a nationally representative in-depth study of cognitive aging and dementia. We present a publicly available dataset of harmonized cognitive measures of 4,096 adults 60 years of age and older in India, collected across 18 states and union territories. Blood samples were obtained to carry out whole blood and serum-based assays. Results are included in a venous blood specimen datafile that can be linked to the Harmonized LASI-DAD dataset. A global screening array of 960 LASI-DAD respondents is also publicly available for download, in addition to neuroimaging data on 137 LASI-DAD participants. Altogether, these datasets provide comprehensive information on older adults in India that allow researchers to further understand risk factors associated with cognitive impairment and dementia.

Psychological Distress among Care Recipients Attending Youth Mental Health Promotion Centers across Karnataka, India.

BACKGROUND: Yuva Spandana (YS) is a unique community-based youth mental health promotion program implemented across Karnataka. OBJECTIVE: We assessed factors affecting PD among the population served by YS between January 1, 2017, and December 31, 2021. MATERIALS AND METHODS: A retrospective cross-sectional analysis was done utilizing the visit forms of 10,340 YS's care recipients. A conceptual framework was developed, and all hypothesized variables within this framework were considered exposures. All exposure variables significant at P < 0.10 in univariate analysis were included in multivariable analysis. Multivariable logistic regression analysis was performed by including each of the significant potential exposure variables from univariate analysis using a forward-stepping process. RESULTS: Care recipients with health and lifestyle issues were at almost two times increased risk for PD (adjusted odds ratio [AOR] =1.74 and 95% confidence interval [CI] - 1.52-2.00), and those with self-development issues were almost 2.5 times more likely to have PD (AOR = 2.44 and 95% CI - 2.12-2.79). Those who reported emotional statuses of feeling worried, lost, incapable, lonely, and distrusting were at 21.4, 3.5, 26.3, 37.9, and 4.7 times higher odds of having PD, respectively. CONCLUSIONS: Isolating the risk factors associated with PD will help tailor the mental health promotion provided by YS to at-risk groups.

Training for mental health professionals in responding to experienced and anticipated mental health-related discrimination (READ-MH): protocol for an international multisite feasibility study.

BACKGROUND: Mental health and other health professionals working in mental health care may contribute to the experiences of stigma and discrimination among mental health service users but can also help reduce the impact of stigma on service users. However, few studies of interventions to equip such professionals to be anti-stigma agents took place in high-income countries. This study assesses the feasibility, potential effectiveness and costs of Responding to Experienced and Anticipated Discrimination training for health professionals working in mental health care (READ-MH) across low- and middle-income countries (LMICs). METHODS: This is an uncontrolled pre-post mixed methods feasibility study of READ-MH training at seven sites across five LMICs (China, Ethiopia, India, Nepal and Tunisia). OUTCOME MEASURES: knowledge based on course content, attitudes to working to address the impact of stigma on service users and skills in responding constructively to service users' reports of discrimination. The training draws upon the evidence bases for stigma reduction, health advocacy and medical education and is tailored to sites through situational analyses. Its content, delivery methods and intensity were agreed upon through a consensus exercise with site research teams. READ-MH will be delivered to health professionals working in mental health care immediately after baseline data collection; outcome measures will be collected post-training and 3 months post-baseline, followed by qualitative data collection analysed using a combined deductive and inductive approach. Fidelity will be rated during the delivery of READ-MH, and data on training costs will be collected. Quantitative data will be assessed using generalised linear mixed models. Qualitative data will be evaluated by thematic analysis to identify feedback about the training methods and content, including the implementability of the knowledge and skills learned. Pooled and site-specific training costs per trainee and per session will be reported. CONCLUSIONS: The training development used a participatory and contextualised approach. Evaluation design strengths include the diversity of settings, the use of mixed methods, the use of a skills-based measure and the knowledge and attitude measures aligned to the target population and training. Limitations are the uncertain generalisability of skills performance to routine care and the impact of COVID-19 restrictions at several sites limiting qualitative data collection for situational analyses.

Using Digital Media to Improve Dementia Care in India: Protocol for a Randomized Controlled Trial.

BACKGROUND: India is undergoing a demographic transition characterized by population aging and is witnessing a high dementia rate. Although nearly 7 million people live with dementia in India, dementia awareness is poor, and current resources addressing dementia care are basic and often incomplete, duplicated, or conflicting. To address this gap, this study aims to use digital media, which has had a massive technological uptake in India, to improve dementia care in India. OBJECTIVE: The objective of this paper is to describe an intervention study design that examines the feasibility and acceptability of Moving Pictures India, a digital media resource to improve dementia care in India. METHODS: This study employs a mixed methods design and is divided into 4 phases: (1) video interviews with Indian caregivers and health professionals; (2) coproduction of resources; (3) pilot randomized controlled trial (RCT); and (4) dissemination and analytics. The pilot RCT will follow an experimental parallel group design with 2 arms aiming to assess the impact, feasibility, and acceptability of the developed resources. The primary outcome measures for the pilot RCT will be feasibility and acceptability, while the secondary outcome measures will be caregiver burden, mood, and quality of life. RESULTS: This study received funding from the Alzheimer's Association in the United States in July 2021. In 2023, we will enroll 60 dementia caregivers (40 caregivers in the intervention arm and 20 in the control) for the pilot RCT. The study has been approved by the National Institute of Mental Health and Neuro Sciences Ethics Committee (26th IEC (BEH.SC.DIV.)/2020-21 dated November 11, 2020); the Health Ministry's Screening Committee, India (proposal ID 2020-10137); the Curtin University Human Research Ethics Committee (approval number HRE2020-0735); and the NARI Research Governance Office (site-specific approval dated March 17, 2021). CONCLUSIONS: This protocol is designed to deliver unique, coproduced, and evidence-based media resources to support caregivers of persons with dementia in India and other countries aiming to utilize digital media for dementia care. If the intervention is found feasible and acceptable, postpiloting analytics and qualitative feedback will be used to develop an implementation trial to evaluate the effectiveness of the potential low-risk high-benefit intervention in practice. TRIAL REGISTRATION: Clinical Trials Registry-India CTRI/2021/01/030403; http://ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=50794. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38456.

Training for mental health professionals in responding to experienced and anticipated mental health related discrimination (READ-MH): protocol for an international multisite feasibility study.

Background: Mental health and other health professionals working in mental health care may contribute to the experiences of stigma and discrimination among mental health service users, but can also help reduce the impact of stigma on service users. However the few studies of interventions to equip such professionals to be anti-stigma agents those took place in High-Income Countries. This study assesses the feasibility, potential effectiveness and costs of Responding to Experienced and Anticipated Discrimination training for health professionals working in mental health care (READ-MH) across Low- and Middle-Income Countries (LMICs). Methods: This is an uncontrolled pre-post mixed methods feasibility study of READ-MH training at seven sites across five LMICs (China, Ethiopia, India, Nepal, and Tunisia). Outcome measures: knowledge based on course content; attitudes to working to address the impact of stigma on service users; and skills in responding constructively to service users' reports of discrimination. The training draws upon the evidence bases for stigma reduction, health advocacy and medical education and is tailored to sites through situational analyses. Its content, delivery methods and intensity were agreed through a consensus exercise with site research teams. READ-MH will be delivered to health professionals working in mental health care immediately after baseline data collection; outcome measures will be collected post-training and three months post-baseline, followed by qualitative data collection. Fidelity will be rated during delivery of READ-MH, and data on training costs will be collected. Quantitative data will be assessed using generalised linear mixed models. Qualitative data will be evaluated by thematic analysis to identify feedback about the training methods and content, including the implementability of the knowledge and skills learned. Pooled and site-specific training costs per trainee and per session will be reported. Conclusions: The training development used a participatory and contextualized approach. Evaluation design strengths include the diversity of settings; the use of mixed methods; the use of a skills-based measure; and knowledge and attitude measures aligned to the target population and training. Limitations are the uncertain generalisability of skills performance to routine care, and the impact of COVID-19 restrictions at several sites limiting qualitative data collection for situational analyses.

Adaptation of an online training and support program for caregivers of people with dementia to Indian cultural setting.

Support for caregivers of people with dementia has been identified as an action area in the Global Action Plan on the Public Health Response to Dementia 2017-2025 by the World Health Organization (WHO). As a step towards that, WHO developed iSupport - an online program to provide support and training for caregivers of people with dementia. To address the need of caregivers in India, the iSupport program was adapted to the Indian cultural setting. The process of adaptation consisted of four phases: (a) information gathering (review of literature and focus group discussions), (b) preliminary adaptation design (modifications using an adaptation guide), (c) preliminary adaptation tests (face-to-face interviews and online test run), and (d) adaptation refinement (final modifications to the intervention and study process). The initial adaptation was carried out by effecting changes in words, names, resources, caregiving scenarios and audio files to make the English version of iSupport suitable to the Indian cultural context. The results of the qualitative adaptation tests provided additional recommendations like changing the links to India specific websites, revising the eligibility criterion for caregiving duration, re-wording of e-mail texts, inclusion of a time estimate required to complete the assessments and decreasing the numbers of screens that the caregivers had to navigate in the program, which were incorporated in the final phase. Preliminary data showed that the caregivers who participated in the adaptation process found the changes acceptable. Translation of iSupport to different Indian languages could be undertaken after initial effectiveness of the program is established.

Feasibility and preliminary effectiveness of an online training and support program for caregivers of people with dementia in India: a randomized controlled trial.

OBJECTIVES: Internet-based interventions involving elements of cognitive behavior therapy, psychoeducation, relaxation and skills training for caregivers of people with dementia have been found to be promising in Western countries. Given these outcomes, the adapted version of a multi-component online caregiver skills training and support program of the World Health Organization, called iSupport, was tested for feasibility and preliminary effectiveness in India. METHODS: One hundred fifty-one caregivers of family members with a diagnosis of Alzheimer's disease or dementia were randomized to either the intervention arm (iSupport; n = 74) or to the control group (an education-only e-book program; n = 77). Participants were assessed using self-rated measures of depression and perceived burden, which were the primary outcome measures, at baseline and 3-month follow-up. Person-centered attitude, self-efficacy, mastery and self-rated health were also assessed. RESULTS: Fifty-five caregivers (29 in the iSupport group and 26 in the control condition) completed the study. The recruitment and retention rate of the study were 44.67% and 36.42% respectively. No significant differences were found between the two groups at 3-month follow-up on the primary outcomes. Among the secondary outcomes, significant improvement was only seen in caregivers' person-centered attitude towards persons with dementia in the iSupport group (t = 2.228; p < 0.05). CONCLUSIONS: Despite efforts to recruit and retain participants to the online program, this study had a low recruitment and retention rate, which require closer attention and indicates a need for further adaptations of the Indian version of the iSupport program to improve its acceptability and accessibility. The lessons learned from this study will guide the further development of caregiver training and support interventions in India. The trial was registered with the Clinical Trials Registry-India (Trial Registration No. CTRI/2017/02/007876).

Perspectives on Components of an Online Training and Support Program for Dementia Family Caregivers in India: A Focus Group Study.

OBJECTIVES: There is a considerable need for support interventions for caregivers of people with dementia in developing countries, such as India. The purpose of the study was to identify the components and understand the acceptability of an online training and support program for dementia caregivers in India. METHODS: Three focus group discussions were carried out with dementia caregivers (2) and health professionals (1) to understand the requirements of an online training and support program from their perspective. The commonly recurring themes were identified and defined using thematic content analysis. RESULTS: The expectations from an online training and support program were wide-ranging from information about identification and management of dementia to support caregiver well-being. Use of simple language, cultural relevance, and an interactive design were suggestions to facilitate the use of the support program. Lack of time, difficulty in accessing the internet, lack of awareness about the portal, difficulty in reaching the rural population were anticipated as challenges in using the program. CONCLUSIONS: The study highlights the requisite components of a first of its kind online training and support program in India by integrating the experiences, motivations, challenges, and expectations of caregivers and professionals involved in dementia care. CLINICAL IMPLICATIONS: The focus group discussions in the current study provide a road map for the development of an online caregiver training and support program underlying the perspectives of the stakeholders for the consolidation of an effective dementia care program for lower resourced settings.