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

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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 £573,090 (GBP)
Funding ID MR/S024921/1 
Organisation Newton Fund 
Sector Public
Country United Kingdom
Start 04/2019 
End 03/2022
 
Description Collaboration with Manipal 
Organisation Manipal 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
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"
Start Year 2018
 
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 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