Healthy Cities for Adolescents: participatory research in Gurugram, Haryana, India

Healthy Cities for Adolescents: participatory research in Gurugram, Haryana, India

Lead:

Society for Participatory Research in Asia (PRIA)

Collaborators:

Gurugram University, Gurugram, India

Overview

The key objectives of the study titled ‘Our Health, Our Voice’ were:

1. To enquire into, from the perspective of marginalised adolescents, the health needs and health education necessary for transition into healthy adults.
2. To examine existing government funded health policies and programmes for adolescents; this includes identifying the right tools and techniques as well as the right triggers and incentives for engaging adolescents in the planning, implementation and monitoring of adolescent specific health services.
3. To offer practical proposals for national and state policy and programmes, based on existing successful models of engagement and knowledge exchange.

Through this study, the project team explored the relationship between urbanisation, migration and health, in line with SHLCs’ priority areas of research with low-income communities across the world. This project’s work with adolescents living in urban informal settlements in Gurugram, one of the satellite cities of New Delhi, has provided rich insights into the lived realities of the target group, primarily from the perspective of the population. Drawing on a mixture of participatory research methods, the team attempted to involve adolescents as ‘co-researchers’ in every step of the research process, thereby developing a model that emphasises active ‘participation’. A unique feature of the participatory action research has been adolescents’ reviewing and subsequently influencing health policy.

The study was designed with the objective of institutionalising adolescent participation to improve health outcomes and well-being. Through the participatory survey, adolescents reported poor health-seeking behaviour as well as low levels of awareness regarding adolescent friendly health services. The strength of the programme was its health promotion approach. It involved a paradigm shift from the existing clinic-based services to promotion and prevention and reaching adolescents in their own environment. The entire study design was strategised around this framework.

• The participatory survey as well as Focus-Group Discussions were conducted to generate evidence into the prevalent situation of adolescent health in the urban informal settlements in Gurugram. The key findings from the survey enabled the identification of priority areas of work which influenced the design of participatory activities, consultations as well as learning circles as part of the study. As a result, the health service providers, city authorities and state government will have access to better analyses, knowledge and recommendations which will help them to improve policies, programmes and schemes that fulfil the needs and aspiration of the adolescents from low-income communities.
• A participatory review of the flagship health scheme for adolescents, Rashtriya Kishore Swasthya Karyakram (RKSK) in Gurugram, revealed that the strategy of implementation was not in line with the guidelines of the scheme. It was observed that the Peer Educator (PE) component of RKSK had been discontinued, thereby reducing participation to mere tokenism as opposed to integration in line with RKSK guidelines. A key actionable area that was identified by the research team was to advocate for integration of adolescent population into health systems and delivery design in Gurugram. In order to increase the capacity of adolescents to independently exercise health-seeking behaviour, various participatory tools and techniques were designed and adapted to the local context.
• A ‘visioning exercise’ was conducted to facilitate adolescents to design the Adolescent Friendly Health Clinics (AFHC) in Gurugram, thereby promoting participation of the primary stakeholders in planning, implementation and monitoring of adolescent specific health services. Following an audit and monitoring of the services and facilities in the sole AFHC facility in Gurugram, adolescents ‘designed’ the ideal AFHC from their vantage point. Policy recommendations to improve health service delivery through AFHCs was presented as a ‘manifesto’ by adolescents themselves to the city level health authorities like the Civil Surgeon who heads the administration of health systems in Gurugram.

A key policy change was adolescents influencing the city level health officials to revive the defunct peer educator programme in Gurugram. It is planned that PRIA will facilitate the training of the adolescents in urban informal settlements as ‘peer educators’ and designate them as community champions who will motivate youth in the community to exercise responsible health seeking behaviour as well as provide information on the nearest adolescent friendly health clinics. PRIA has also drawn up plans to ensure sustainability of the ‘peer educator’ component and to provide periodic training in co-operation with Health Department, Gurugram.

The project was implemented in the DAC listed Lower Middle-Income Country (LMIC) India. The achievement of SDG 3 – “Ensure healthy lives and promote well-being for all at all ages” – globally, is dependent on how India aligns national priorities and allocates resources to achieve this target. India has the largest adolescent population in the world, 254 million and every fifth person in the country is between the age of 10-19 years. For adolescents to contribute productively to the development trajectory of the country, their phase of transition to adulthood should be marked by sensitive handling of emerging physiological and psychological changes. Lack of information regarding the phenomenon of ‘adolescence’ was found to be one of the biggest impediments to seeking preventive health-care among adolescents, along with health systems insensitive or unreceptive of health needs of adolescents.

The team identified three critical barriers impairing health outcomes among adolescents in LMIC:

1. Poor knowledge of adolescent health needs and demands in the local context
2. Lack of participatory spaces or avenues for adolescents to talk about adolescent health issues
3. Inadequate participation of adolescents in planning, implementation and monitoring of health policies, especially RKSK.

Adopting a participatory approach to developing interventions, the following activities sought to tackle the gaps identified during the course of study:

Generating awareness and evidence regarding adolescent health: Co-creation of local knowledge and evidence regarding adolescent health with active involvement of community and multiple stakeholders like public health officials, elected representatives and frontline health workers enabled the team to identify the priority areas where adolescents reported lacking knowledge. Through mixed-method data collection techniques (survey and FGD), conducting data dissemination sessions and designing locally relevant Social and Behavioural Change Communication (SBCC) material, the project sought to address the gap in the information deficit prevalent among adolescents in urban informal settlements.

Creating a safe space for adolescents: A participatory ‘visioning exercise’ was conducted with adolescents to create a ‘space’ for adolescents to congregate and learn from each other about adolescent health through skits, poetry, painting and games. The project demonstrates the effectiveness of engaging adolescents to gain agency over their life issues through cost-effective participatory methods in under-resourced settings. Such spaces would be critical in engaging adolescents, not as passive receivers of top-down service delivery, but as ‘active citizens’ capable of engaging with governance mechanisms to demand rights tailored to cater to their aspirations.

Incorporating adolescent voices into policy: A consultation with city-level health officials was organised to bring adolescents closer to the health policy space. Adolescents were capacitated to evaluate the prevailing health systems in Gurugram and to recommend policy changes to design facilities and services responsive to the demands and aspirations of adolescents. The consultation also served as a space to build the capacity of district level health officials to conceptualise frameworks for institutionalising adolescent participation in RKSK implementation.

Adolescents from urban informal settlements will be trained as Peer Educators (PE) by the district health administration to this effect and efforts will be made to sustain the PE model, thereby emphasising health promotion as the ideal framework for reducing adolescent related mortalities.

Summary of research findings:

• Poor health-seeking behaviour as well as awareness among adolescents was observed, especially with regard to sexual and reproductive health and nutrition.
• Nutrition patterns among adolescents living in under-resourced settlements was cost-sensitive and hence, adolescents were unable to consume nutritious food items in line with national guidelines.
• Low level of awareness regarding adolescent friendly health clinics was observed among the respondents.
• The outreach among adolescents through frontline health workers or community workers on sensitive adolescent health issues was low, increasing their dependence for health-related information on mother, teacher, peers and the internet.

The actionable component of the study sought to address the emerging gaps at multiple levels.

• Information deficit among adolescents: For adolescents to transition to healthy adulthood, it is important that they be exposed to the right information and practices regarding health and well-being. SBCC materials were designed by identifying the priority areas of adolescent health as was evidenced by the survey and FGD in local languages. The material, tailored to the local context, is expected to address the information deficit among young people. Further, the cadre of peer educators will also be trained to disseminate information as well as undertake referrals. Five hundred adolescents across the urban informal settlements were provided with SBCC materials.
• Access to health systems needs to be improved if adolescents are to exercise independent health-seeking behaviour. However, the lack of knowledge of AFHCs impedes their ability to take agency over health and well-being. Through participatory exercises, adolescents were facilitated to take the promotive route to health-seeking; identification of available health facilities in the vicinity of the community should enable them to reach out. The frequency of visits and the referrals made by the peer educators in the community will however need to be monitored and evaluated over a significant time period which is beyond the scope of the study.
• Institutionalising an adolescent participation framework: The consultations were successful in getting recognition of adolescents as active influencers of health policy at the Governmental level and their training as peer educators by the district Health Department will lend credibility to their role in the community and enable more adolescents to volunteer thereby ensuring sustainability of adolescent participation. It is planned that 30 adolescents will be trained initially through 3 training sessions and participation will be scaled up subsequently. The level of adolescent enrolment, training sessions conducted in the community as well as frequency of outreach will need to be measured over a period of 12 months to reflect accuracy and effectiveness.
• International co-operation and cross-learning: The development of international partnerships between PRIA, a local university, and SLHC based at the University of Glasgow has facilitated strengthening of capacity of academics in India in the field of adolescent health (with a focus on social determinants of health) and related policies in the context of smart cities.

The section lists the key activities, materials produced and partnerships formed during the course of the study

Study reports of individual events and activities:  

PRIA (2021). Our health, our voice; preliminary findings of mobile-based participatory survey with adolescents in Gurugram, India.

PRIA (2021). Learning circle on strengthening facility-based intervention to improve health outcomes among adolescents- a case of adolescent friendly health clinics.

PRIA (2021). Our health, our voice; online focus-group discussions with adolescents.

PRIA (2021). Our health, our voice; online focus-group discussions with mothers of adolescents.

PRIA (2021). The voices from the ground; re-imagining working with adolescents.

PRIA (2021). National consultation; Our health, our voice-institutionalizing adolescent participation for improving their health and well-being.

PRIA (2021). City-level multi-stakeholder dialogue on strengthening adolescent participation to target adolescent health.

Blogs:

Aravind, R. (2021). From Challenge To Opportunity: Shifting Community-Based Research Online [Blog].

Aravind, R. (2021). Adolescent Health in Gurugram: Mobile-Based Survey Findings [Blog].

Aravind, R. (2021). Is There Healthcare For Adolescents On The Margins? [Blog].

Aravind, R. (2021). Is It Right To Defer Conversation About Sex Anymore? [Blog].

Aravind, R. (2021). When Health Clinics Become Friendly: Adolescents’ Vision for the Future [Blog].

Policy brief:

PRIA (2021). Manifesto by adolescents living in urban informal settlements in Gurugram to make Mitrata Clinic facilities effective and adolescent friendly.

Videos:

Our health, our voice: participatory research with adolescents in Gurugram (3:38) PRIA India

Our health, our voice: participatory action research with adolescents in Gurugram (10:22) PRIA India

New Partnerships formed during the course of the study:

• Health Department, Gurugram
• Martha Farrell Foundation
• Pro-Sport Development
• Dasra 10to19 Adolescent collaborative
• MAMTA

Workshops and footfall

• National Consultation: 54 participants, including key participants
• City Consultation: 13 participants
• Learning Circle 1: 25 participants, including the key panellists
• Learning Circle 2: 35 participants, including key panellists 

The study was envisaged as participatory action research led by adolescents. At the onset of the research study, the research team adopted a multi-stakeholder approach to achieve the objectives. The team primarily worked with adolescents belonging to urban informal settlements in Gurugram and in order to recruit participants as co-researchers, it was imperative to build trust with not just the target group, but also parents and care-givers of adolescents and gate-keepers in the community. To build trust, partnerships were formed with members of the community, facilitated by a local NGO for the purpose of mobilisation as well as to assist with people management at different stages of the research process. Due adherence to COVID-19 protocols as well as informed consent protocols was observed.

Following the analysis of data, the data generated through the survey was validated with the actors in the problem situation, the adolescents. In the study, the data was disaggregated at the level of settlements to ensure context-specific insights were presented. Data that was analysed was validated with the adolescents and disseminated with the wider community and stakeholders to generate awareness about the prevalent situation of adolescent health and to decide the future course of action and policy change through participation.

The study has built on PRIA’s extensive engagement with youth and adolescents in different thematic areas over the years. PRIA’s expertise in participatory action research methodology was utilised to develop the study design, from research phase to action phase. In Gurugram, PRIA has worked with domestic workers living in urban informal settlements over issues related to gender violence and entitlement of rights. Their extensive engagement with district administration in Gurugram was leveraged to enable adolescents to present their views on ideal health system, which led to actionable points, namely the creation of peer educator cadre as well as more awareness surrounding adolescent friendly health systems. In addition to partnerships with local community, local NGO as well as a local university, partnerships were also formed with leading civil society and research organisations working on the theme of adolescent health to generate evidence as well as dialogue on different facets of adolescent health.

It has been agreed that the participatory action research study, led by adolescents will create a cadre of Peer Educators, trained by the health department and facilitated by the research team, to link adolescents to the AFHC or referral services. This effort will benefit out-of-school children as well as children of migrant families who reported requirements of training and information sessions on sexual and reproductive health as well as nutrition. At the time of writing, the team is currently in talks with the Health Department, Gurugram to ensure that peer educators are periodically trained on health issues. Local NGO partner are anticipated to monitor the activities of peer educators and recruit new batches.

The study findings will be used to advocate for the establishment of more adolescent friendly health clinics in the district. The evidence will also inform re-prioritisation of components of RKSK to better reflect the localised needs of health care. The process will however, be led by the peer educators and adolescent champions who will be trained to exercise tools of democracy to voice their demands on behalf of adolescents in the informal settlements. PRIA will also support the city-level health department, to integrate participation into implementation documents.

The model of engaging adolescents in planning and implementing action research projects has been disseminated to city and national consultations and through conferences to ensure that similar models are replicated and scaled up across the country. The study methodology, findings and learning will be disseminated as academic articles, in popular writing, such as blogs, working papers in open access journals and platforms to be accessible to academic as well as non-academic audiences.

Capacity building of the following stakeholders associated with the study was undertaken:

Researchers, based in partner university as well as community

The initial research team, compromised of university students and community animators were identified as ‘co-researchers’ in the context of the study. The primary objective of initiating partnerships with the local university was to build capacity of university students