Healthy Crossroads in Pregnancy Care (HCPC) - A Scoping and Participatory Design Study of the Potential for ICTs to Improve Maternal Health in India

Lead Research Organisation: University of Leicester

Abstract

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Technical Summary

This partnership aims to co-inquire what roles Information and Communication Technologies (ICTs) might play in enhancing and shaping (individual and community-based) socio-cultural practices around pregnancy care in India. Maternal health is one of the foremost public health challenges in India. Additional disorders and complications such as anaemia and
gestational diabetes makes the self-care management of pregnant women more challenging in particular in urban slums and rural areas in India. In addition, the low utilization of maternal and reproductive healthcare services together with the exacerbating socio-cultural and economic inequalities have jeopardised pregnant women's health especially at the lower level of the socio-cultural system in India. For instance, pregnant women often find themselves in subordinate positions,
and cultural everyday practices (e.g., serving the husband food first), family structures and traditions challenges women's autonomy, the delivery process and and the postnatal period, whilst engaging in unhealthy practices that can potentially be harmful to both the mother and the baby. Exploring the socio-cultural practices around pregnancy and the everyday
experiences of pregnant women can provide opportunities to enhance pregnant women's autonomy, agency, self-efficacy and self-reflective practices through technology design.
As such, this partnership aims to explore the complexities of everyday pregnancy care and scope opportunities and concerns for the design of technological interventions that can support and reshape the maternity journey, accounting for
the autonomy and agency of pregnant women within and beyond households, to improve their health and wellbeing. We have brought together a multi-disciplinary, cross-cultural, and cross-geographical group of researchers, technology designers, public & community health workers, and grassroots citizens' organisations to explore the opportunities afforded
by ICTs to help identify, promote and/or restrict the consequences of (un)healthy practices and lifestyle behaviors in the health of pregnant women, the newborns, and the community. To meet our project's aim, we will, over a period of nine months (between March and November 2018), engage in 2 stages of co-inquiring studies (ethnographic work and codesign
work), and meet as a team to hold 3 scoping, networking and dissemination workshops in India: at the beginning of the project, after 4 months of the ethnographic work, and at the end of the project. The partnership will gain further understanding of (un)healthy practices around pregnancy care, as well as explore and create a collection of design probes
and innovative ideas and experiences to empower, enhance and promote the active and positive participation of pregnant women, their families and communities in maternal care. The insights from the ethnographic work and the generated design ideas and prototypes will be shared with the participants, their communities and the public in general. We will
develop a larger research study to further explore the implementation of the generated ideas on national scale across India.
The project will provide the basis for additional further collaborations and strengthen our individual practices through sharing best practice and methods across fields.

Publications

10 25 50
 
Title Storytelling tool-kit for communicating research findings: 
Description We created story-boards about different challenges faced by pregnant women to make the findings relatable to the frontline health workers, and as a way to initiate conversations about ways to address the challenges. For example, is the story of Kamala (fictionalised name), visualizing the different challenges the Kamala faces as she navigates the fragmented healthcare infrastructure as a woman with 'high-risk' pregnancy 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2018 
Impact Frontline health workers and pregnant women with low literacy relates and became more aware of the existing challenges by the use of the story boar. 
 
Description Newton Fund UK-Peru: Relationship between Food, Nutrition and Health
Amount £716,362 (GBP)
Funding ID MR/S024921/1 
Organisation Newton Fund 
Sector Public
Country United Kingdom
Start 04/2019 
End 03/2022
 
Description Collaboration with Jatan Sansthan, Udaipur 
Organisation Jatan Sansthan
Country India 
Sector Charity/Non Profit 
PI Contribution We contributed with our expertise in participatory design research, evolving visual forms of knowledge communication such as storyboards and scenarios, which made the issues around high-risk pregnancy care visible to the collaborator and the communities they serve.
Collaborator Contribution Jatan Sansthan provided well trained community health workers to support field research, helped in recruitment of participants, and offered research mentoring along with participating in the analysis of the findings.
Impact We are in the process of reporting on the findings from this pilot study for HCI and public health conferences.
Start Year 2019
 
Description Collaboration with Manipal 
Organisation Manipal University
Country India 
Sector Academic/University 
PI Contribution We have included our colleagues from Manipal in follow up grant proposals and have invited them to our networking workshops to build the collaboration. We also got an internal grant from the University of Leicester to collect pilot data in Manipal
Collaborator Contribution Expertise in nursing research with particular focus on anaemia in pregnancy
Impact Research paper for IndiaHCI 2018: 10.1145/3297121.3297130 Project proposal submitted to the Royal Society - under review - entitled: "EmpComICT: Empowering Communities with Information and Communications Strategies to Help Prevent and Treat Iron-Deficiency Anaemia in Pregnancy in India" Internal project "Establishing a cross-disciplinary Partnership to Explore Women's Everyday Experiences and Infrastructural Challenges of Healthcare Systems in Relation to Maternal Health to Scope Opportunities for Digital Health Technologies in the Global South" funded by the Global Challenges Research Fund - Research England GCRF, through the University of Leicester Global Challenges Research Fund strategy. 2019.
Start Year 2018
 
Description Partnership with Escuela Superior Politécnica del Litoral (ESPOL), Ecuador 
Organisation Escuela Superior Politécnica del Litoral
Country Ecuador 
Sector Academic/University 
PI Contribution We worked together on an internal grant from the University of Leicester with Dr Lorena Carlo. Prof Paula Griffiths from Loughborough University and Dr Nicola Mackintosh are also collaborators in this proposal and Dr Naveen Bagalkot is an international project partner in this proposal to share the experiences from India.
Collaborator Contribution Lorena brings expertise in qualitative research and health informatics. We also worked in a grant proposal for an Ecuadorian funder to microbiota and children's health entitled "Disbiosis intestinal, parasitosis y estado nutricional en niños y niñas de la región andina y amazónica del Ecuador"
Impact Internal project at the University of Leicester: "Establishing a cross-disciplinary Partnership to Explore Women's Everyday Experiences and Infrastructural Challenges of Healthcare Systems in Relation to Maternal Health to Scope Opportunities for Digital Health Technologies in the Global South" funded by the Global Challenges Research Fund - Research England GCRF, through the University of Leicester Global Challenges Research Fund strategy. 2019. Position paper at the CHI 2019: Lorena Carlo, Valeria Carpio, Nervo Verdezoto (2019). "Healthcare Infrastructures in Ecuador: Challenges and Opportunities for Digital Health". Workshop on Unpacking the Infrastructuring Work of Patients and Caregivers around the World at CHI 2019, May 4th, Glasgow, UK.
Start Year 2019
 
Description Partnership with Escuela Superior Politecnica de Chimborazo (ESPOCH), Ecuador 
Organisation Escuela Superior Politecnica de Chimborazo
Country Ecuador 
Sector Academic/University 
PI Contribution We worked together on an internal grant from the University of Leicester with Dr Valeria Carpio. Prof Paula Griffiths from Loughborough University and Dr Nicola Mackintosh are also collaborators in this proposal and Dr Naveen Bagalkot is an international project partner in this proposal to share the experiences from India.
Collaborator Contribution Valeria brings expertise in understanding nutritional practices and interventions in the Ecuadorian context. We also worked together on an internal grant at Loughborough University to bring Valeria to the UK in May 2020, entitled "Establishing a cross-disciplinary and geographical Partnership to Explore the Challenges and Opportunities to Address the Double Burden of Malnutrition in Children and Adolescents in Ecuador" We also worked in a grant proposal for an Ecuadorian funder to microbiota and children's health entitled "Disbiosis intestinal, parasitosis y estado nutricional en niños y niñas de la región andina y amazónica del Ecuador"
Impact Internal project at the University of Leicester: "Establishing a cross-disciplinary Partnership to Explore Women's Everyday Experiences and Infrastructural Challenges of Healthcare Systems in Relation to Maternal Health to Scope Opportunities for Digital Health Technologies in the Global South" funded by the Global Challenges Research Fund - Research England GCRF, through the University of Leicester Global Challenges Research Fund strategy. 2019. Internal project at Loughborough University "Establishing a cross-disciplinary and geographical Partnership to Explore the Challenges and Opportunities to Address the Double Burden of Malnutrition in Children and Adolescents in Ecuador" Position paper at the CHI 2019: Lorena Carlo, Valeria Carpio, Nervo Verdezoto (2019). "Healthcare Infrastructures in Ecuador: Challenges and Opportunities for Digital Health". Workshop on Unpacking the Infrastructuring Work of Patients and Caregivers around the World at CHI 2019, May 4th, Glasgow, UK.
Start Year 2019
 
Description Partnership with the Human Science Research Council, South Africa 
Organisation Human Sciences Research Council (HSRC)
Country South Africa 
Sector Charity/Non Profit 
PI Contribution We worked together on a EPSRC/GCRF research proposal for which Prof Alastair van Heerden is a co-investigator from the University of Limpopo. Prof Paula Griffiths from Loughborough University and Dr Nicola Mackintosh are also co-investigators in this proposal and Dr Naveen Bagalkot is an international project partner in this proposal to share the experiences from India in South Africa
Collaborator Contribution My partner at the Human Science Research Council, Prof Prof Alastair van Heerden brings expertise on information communication technologies for development (ICT4D) and their application on treatment and support of people living with HIV and AIDS as well as on early child development.
Impact Our project entitled "Co-designing Community-based ICTs Interventions to Enhance Maternal and Child Health in South Africa" has been recently accepted for funding by the Digital Innovation for Development in Africa (DIDA) call. The project will bring togeter multidisciplinary expertise between UK and South African researchers on global health and nutrition, ethnography, co-design and participatory methods, psychology of child feeding behaviours, media and health communication, feminist geography, gender, care and inequalities, co-developing and delivering transferal capacity-building activities, and diverse areas of computer science including social and mobile computing, and artificial intelligence, human-computer interaction, internet of things, Information and communication technologies for development, anthropological understanding of maternal care, nursing and health sciences, neonatal care, medicine in regards to non-communicable diseases, maternal and child care, and mental health, community-based interventions in South Africa, e-health and m-health, HIV interventions. Regarding the last question below, after the formal confirmation a formal agreement will be signed by all institutions.
Start Year 2020
 
Description Partnership with the School of Sport, Exercise and Health Sciences 
Organisation Loughborough University
Country United Kingdom 
Sector Academic/University 
PI Contribution We worked together on a research proposal for which I co-lead together with Prof. Paula Griffiths the second work package for the participatory design research
Collaborator Contribution My partners are experts in nutrition and population health with particular focus on developing countries. Prof. Paula Griffiths also acts as a mentor for follow up research activities
Impact Our project entitled "New strategies to reduce anaemia and risk of overweight and obesity through complementary feeding of infants and young children in Peru" was funded by the Newton Fund UK-Peru: Relationship between Food, Nutrition and Health Call. REF: MR/S024921/1. Include multiple disciplines from Nutrition and population health as well human-computer interaction and health informatics. Project proposal submitted to the Royal Society - under review - entitled: "EmpComICT: Empowering Communities with Information and Communications Strategies to Help Prevent and Treat Iron-Deficiency Anaemia in Pregnancy in India"
Start Year 2018
 
Description Partnership with the Sristhi Institute of Art, Design and Technology, Bangalore, India 
Organisation Srishti Institute of Art, Design and Technology
Country India 
Sector Academic/University 
PI Contribution Contributions ranging from writing project proposals to writing research papers in different areas of digital health
Collaborator Contribution Strong expertise in design in particular for adapting methods to low-income communities
Impact Research papers submitted to the India 2018 conference, ECSCW 2019 (under review), InfraHealth 2019 (Under review). Collaboration is multidisciplinary between design and human-computer interaction and health informatics. IndiaHCI 2018 paper - DOI: 10.1145/3297121.3297130 Project proposal submitted to the Royal Society - under review - entitled: "EmpComICT: Empowering Communities with Information and Communications Strategies to Help Prevent and Treat Iron-Deficiency Anaemia in Pregnancy in India"
Start Year 2018
 
Description Partnership with the University of Cape Town, South Africa 
Organisation University of Cape Town
Country South Africa 
Sector Academic/University 
PI Contribution We worked together on a EPSRC/GCRF research proposal for which I co-lead together with Dr. Melissa Densmore from Univesity of Cape Town. Prof Paula Griffiths from Loughborough University and Dr Nicola Mackintosh are also co-investigators in this proposal and Dr Naveen Bagalkot is an international project partner in this proposal to share the experiences from India in South Africa
Collaborator Contribution My partners at the University of Cape Town bring diverse expertise including human computer interaction for development (Dr Melissa Densmore), medical expertise with particular focus on the public sector in women's health (Prof Simone Honikman), medical expertise on neonatology, paediatrics and child health (Dr Yaseen Joolay), and anthropology in particular around the The First Thousand Days of Life (Prof Fiona Ross)
Impact Our project entitled "Co-designing Community-based ICTs Interventions to Enhance Maternal and Child Health in South Africa" has been recently accepted for funding by the Digital Innovation for Development in Africa (DIDA) call. The project will bring together multidisciplinary expertise between UK and South African researchers on global health and nutrition, ethnography, co-design and participatory methods, psychology of child feeding behaviours, media and health communication, feminist geography, gender, care and inequalities, co-developing and delivering transferal capacity-building activities, and diverse areas of computer science including social and mobile computing, and artificial intelligence, human-computer interaction, internet of things, Information and communication technologies for development, anthropological understanding of maternal care, nursing and health sciences, neonatal care, medicine in regards to non-communicable diseases, maternal and child care, and mental health, community-based interventions in South Africa, e-health and m-health, HIV interventions. Regarding the last question below, after the formal confirmation a formal agreement will be signed by all institutions.
Start Year 2020
 
Description Partnership with the University of Limpopo, South Africa 
Organisation University of Limpopo
Country South Africa 
Sector Academic/University 
PI Contribution We worked together on a EPSRC/GCRF research proposal for which Prof Tebogo Mothiba is a co-investigator from the University of Limpopo. Prof Paula Griffiths from Loughborough University and Dr Nicola Mackintosh are also co-investigators in this proposal and Dr Naveen Bagalkot is an international project partner in this proposal to share the experiences from India in South Africa
Collaborator Contribution My partner at the University of Limpopo, Prof Tebogo Mothiba brings expertise on nursing management, healthcare delivery, health equity, healthcare education, promotion and management.
Impact Our project entitled "Co-designing Community-based ICTs Interventions to Enhance Maternal and Child Health in South Africa" has been recently accepted for funding by the Digital Innovation for Development in Africa (DIDA) call. The project will bring together multidisciplinary expertise between UK and South African researchers on global health and nutrition, ethnography, co-design and participatory methods, psychology of child feeding behaviours, media and health communication, feminist geography, gender, care and inequalities, co-developing and delivering transferal capacity-building activities, and diverse areas of computer science including social and mobile computing, and artificial intelligence, human-computer interaction, internet of things, Information and communication technologies for development, anthropological understanding of maternal care, nursing and health sciences, neonatal care, medicine in regards to non-communicable diseases, maternal and child care, and mental health, community-based interventions in South Africa, e-health and m-health, HIV interventions. Regarding the last question below, after the formal confirmation a formal agreement will be signed by all institutions.
Start Year 2020
 
Description Partnership with the University of Nottingham, UK 
Organisation University of Nottingham
Country United Kingdom 
Sector Academic/University 
PI Contribution We worked together on a EPSRC/GCRF research proposal for which Dr Mercedes Torres who is a co-investigator from the University of Nottingham. Prof Paula Griffiths from Loughborough University and Dr Nicola Mackintosh are also co-investigators in this proposal and Dr Naveen Bagalkot is an international project partner in this proposal to share the experiences from India in South Africa
Collaborator Contribution My partner at the University of Nottingham, Dr Mercedes Torres brings expertise on machine learning algorithms applied to gestational age estimation.
Impact Our project entitled "Co-designing Community-based ICTs Interventions to Enhance Maternal and Child Health in South Africa" has been recently accepted for funding by the Digital Innovation for Development in Africa (DIDA) call. The project will bring togeter multidisciplinary expertise between UK and South African researchers on global health and nutrition, ethnography, co-design and participatory methods, psychology of child feeding behaviours, media and health communication, feminist geography, gender, care and inequalities, co-developing and delivering transferal capacity-building activities, and diverse areas of computer science including social and mobile computing, and artificial intelligence, human-computer interaction, internet of things, Information and communication technologies for development, anthropological understanding of maternal care, nursing and health sciences, neonatal care, medicine in regards to non-communicable diseases, maternal and child care, and mental health, community-based interventions in South Africa, e-health and m-health, HIV interventions. Regarding the last question below, after the formal confirmation a formal agreement will be signed by all institutions.
Start Year 2020
 
Description Partnership with the University of the Witwatersrand, South Africa 
Organisation University of the Witwatersrand
Country South Africa 
Sector Academic/University 
PI Contribution We worked together on a EPSRC/GCRF research proposal for which Prof Shane Norris from the University of the Witwatersrand is a co-investigator. Prof Paula Griffiths from Loughborough University and Dr Nicola Mackintosh are also co-investigators in this proposal and Dr Naveen Bagalkot is an international project partner in this proposal to share the experiences from India in South Africa
Collaborator Contribution My partner at the University of the Witwatersrand, Prof Shane Norris brings expertise on life course nutrition and epidemiology. Shane is the Director of the South African Medical Research Council's Developmental Pathways for Health Research Unit (DPHRU), and Director of the South African Department of Science and Technology and National Research Council's Centre of Excellence in Human Development (CoE-HUMAN). He is an elected Fellow of the Academy of Science of South Africa, and President of the Africa Chapter of the International Society of Developmental Origins of Health and Disease
Impact Our project entitled "Co-designing Community-based ICTs Interventions to Enhance Maternal and Child Health in South Africa" has been recently accepted for funding by the Digital Innovation for Development in Africa (DIDA) call. The project will bring togeter multidisciplinary expertise between UK and South African researchers on global health and nutrition, ethnography, co-design and participatory methods, psychology of child feeding behaviours, media and health communication, feminist geography, gender, care and inequalities, co-developing and delivering transferal capacity-building activities, and diverse areas of computer science including social and mobile computing, and artificial intelligence, human-computer interaction, internet of things, Information and communication technologies for development, anthropological understanding of maternal care, nursing and health sciences, neonatal care, medicine in regards to non-communicable diseases, maternal and child care, and mental health, community-based interventions in South Africa, e-health and m-health, HIV interventions. Regarding the last question below, after the formal confirmation a formal agreement will be signed by all institutions.
Start Year 2020
 
Description Engagement with households and frontline health workers in South India 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Study participants or study members
Results and Impact We have engaged with pregnant women, young mothers, their relatives and different group of frontline health workers (Anganwadi workers, ASHAs workers, Junior Health Assistants and Health Navigators). After we conducted the interviews and focus groups, different participatory design sessions took place. We used storytelling to convey the information about the challenges we encountered in pregnancy care. Participants discussed the challenges and envision potential solutions. Our activities were supported by MAYA Health that is a third sector organisation that works in the area providing support to the health navigators. During our workshops, frontline health workers reported an increased awareness of each other's job roles and in particular in how to address the issues around coordination. Frontline health workers also reported an increased engagement with the households while getting to know the everyday challenges in pregnancy care that women face.
Year(s) Of Engagement Activity 2018,2019
 
Description The HCPC 2018 Student Design Challenge 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact We organized the HCPC 2018 Student Design Challenge at Srishti Institute for Arts and Design in Bangalore. Students/Teams from diverse careers with interest on human-computer interaction, interaction design, computer science, digital humanities, social sciences, etc. At the beginning of the long weekend challenge (7th December, 10am), participants who have registered receive a number of design provocations (up to 5) of a real world HCI research problem (in the context of pregnancy care) including briefs and probing questions. In response to the provocations and briefs, teams and participants worked over the weekend creating design concepts that could address one of the following challenges:

01 Redesign Thayi Card
How might we reframe the potential of Thayi card (Mother and child information booklet) as an Information, Education, Communication material to enable it to function across its multiple intended roles?

02 Encouraging Active Role of Men in Pregnancy Journey
How might we encourage active role of men across pregnancy journey keeping in mind the complex infrastructure in the households and communities to sustain positive experiences of the mother and child?

03 Toolkit for Health Navigators for Continuity in Care across Clinic and Home: Nutrition, Hygiene, Body
How might we enable the Health Navigators with tools for continuity in care across clinics and homes?

04 Streamline Data journeys across multiple Frontline Health Workers
How might we reconfigure the functioning of the community health workers to account for their dynamic and distributed nature of work?

05 Conversation Starters for Enhancing Awareness of Bodily Experiences across Pregnancy Journey
How might we indulge women in self awareness and care across pregnancy journey?

We got 10 teams submissions. The 23 students participating during the competition reported an increase level of awareness of the everyday issues related to pregnancy care in India.
Year(s) Of Engagement Activity 2018
URL https://hcpregnancycare.wixsite.com/designchallenge2018