Community Action Research in Disability (CARD): An inclusive research programme in Uganda

Sally D Hartley (1), AK Yousafzai (2), MG Kaahwa (3), H Finkenflügel (4), A Wade (5), G Bazirake (6), ML Drachler (7), J Seeley (8), Y Alavi (9), W Mataze (10), E Mucurnguzi (11)
(1) University of East Anglia, Norwich; London School of Hygiene and Tropical Medicine, London, UK; Faculty of Health Sciences, University of Sydney, Sydney, Australia,
(2) Department of Global Health and Population, Harvard TH Chan School of Public Health, Harvard University, US; Aga Khan University, Karachi, Pakistan,
(3) Kyambogo University, Kampala, Uganda,
(4) University of East Anglia, Norwich, UK; Institute of Health Policy & Management, Erasmus University, Rotterdam, Netherlands,
(5) Institute of Child Health, University College London, London, United Kingdom,
(6) Kyambogo University, Kampala, Uganda,
(7) University of East Anglia, Norwich, UK; Department of Health of the State of Rio Grande do Sul, Brazil,
(8) London School of Hygiene and Tropical Medicine, London, United Kingdom,
(9) London School of Hygiene and Tropical Medicine, London, United Kingdom,
(10) Kyambogo University, Kampala, Uganda,
(11) Kyambogo University, Kampala, Uganda
https://doi.org/10.5463/dcid.v28i1.630

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Issue
Vol. 28 No. 1 (2017): Spring 2017
Submitted
September 14, 2020
Published
May 23, 2017
Keywords:
    Emancipatory disability research, action research, participation, community based action research, disability research, human rights
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Abstract

The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

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Authors

Sally D Hartley
University of East Anglia, Norwich; London School of Hygiene and Tropical Medicine, London, UK; Faculty of Health Sciences, University of Sydney, Sydney
sallydianehartley@gmail.com (Primary Contact)
AK Yousafzai
Department of Global Health and Population, Harvard TH Chan School of Public Health, Harvard University, US; Aga Khan University, Karachi
MG Kaahwa
Kyambogo University, Kampala
H Finkenflügel
University of East Anglia, Norwich, UK; Institute of Health Policy & Management, Erasmus University, Rotterdam
A Wade
Institute of Child Health, University College London, London
G Bazirake
Kyambogo University, Kampala
ML Drachler
University of East Anglia, Norwich, UK; Department of Health of the State of Rio Grande do Sul
J Seeley
London School of Hygiene and Tropical Medicine, London
Y Alavi
London School of Hygiene and Tropical Medicine, London
W Mataze
Kyambogo University, Kampala
E Mucurnguzi
Kyambogo University, Kampala
Author Biographies

Sally D Hartley, University of East Anglia, Norwich; London School of Hygiene and Tropical Medicine, London, UK; Faculty of Health Sciences, University of Sydney, Sydney

Prof. Hartley is currently Professor Emeritus at the University of East Anglia, UK, Honorary Professor of Community-based Rehabilitation at the Faculty of Health Sciences at the University of Sydney, Australia and Honorary Professor of Disability and Development at The London School of Hygiene and Tropical Medicine, UK. She is a leader in the field of community-based rehabilitation (CBR) research, with a particular interest in people with communication disabilities in low-income countries. Prof. Hartley has been involved in the development of CBR programmes worldwide, with a strong focus on using collaborative approaches to improve the validity of interventions. She is a Founder member of the CBR African Network (CAN) (www.afri-can.org) its first Executive Officer and currant Patron. She sits on the steering committee of the International Centre for Evidence in Disability at the London School for Hygiene and Tropical Medicine. UK.  Prof. Hartley is one of the eight Co-editors of the World Report on Disability from WHO and the World Bank (2011) and contributor to the WHO and International Disability and Development Consortium Guidelines on CBR (2010).

AK Yousafzai, Department of Global Health and Population, Harvard TH Chan School of Public Health, Harvard University, US; Aga Khan University, Karachi

Dr. Aisha K Yousafzai is an Associate Professor of Global Health, Department of Global Health and Population at the Harvard T.H. Chan School of Public Health. She has 15 years of field research experience and established an  early childhood focused field research programme in rural Sindh, Pakistan in partnership with the Aga Khan University. Dr. Yousafzai has extensive experience in evaluating early childhood development interventions in south Asia, east Africa, and in central and east Europe. She also serves on a number of Advisory Groups on early child development for international organizations including co-Chair for the Intervention Taskforce of the Early Childhood Development Action Network-ECDAN.

MG Kaahwa, Kyambogo University, Kampala

Dr. Kaahwa is a full time Senior lecturer specializing in curriculum development. She has been involved with a number of activities including nurturing good leadership and research skilles. She has carried a lot of research work which has mainly used qualiative methods. this expereince has helped her to write a number of books and articles whcih are widely read in Uganda.

H Finkenflügel, University of East Anglia, Norwich, UK; Institute of Health Policy & Management, Erasmus University, Rotterdam

Dr. Finkenflugel’s  professional work has always moved between managing services for people with disabilities and doing research in the field. He has always been interested in ways to do things better, i.e. to empower people, disabled people and their families and professionals, to improve the quality of life . His work experience is in different organizations in the Netherlands and Zimbabwe. He has been involved with projects in South Africa and Uganda. His research focuses of development research frameworks and agendas for CBR, both in theory building and evaluation, developing and describing best practices.

A Wade, Institute of Child Health, University College London, London

Angie Wade is a Professor of Medical Statistics at UCL Great Ormond Street Institute of Child Health where she has worked since 1990. She has extensive research experience with over 175 peer-reviewed publications, several book chapters and  a long history of research funding within paediatric medicine. Her Statistics PhD, awarded in 1997, developed new methodologies for the likelihood-based construction of covariate related centile charts with ordinal outcomes. Prof Wade has been involved in the provision of statistical training to medical non-statisticians since 1988 and is currently Director of the Centre for Applied Statistics Courses (CASC) at the UCL Institute of Child Health, providing MSc and BSc specific training in addition to a growing portfolio of introductory statistics courses aimed at researchers

G Bazirake, Kyambogo University, Kampala

Dr. Bazirake holds a PhD in Food Biotechnology. He is a Lecturer, Researcher and Consultant on various topical areas. He loves doing voluntary service, especially for people with disabilities.

ML Drachler, University of East Anglia, Norwich, UK; Department of Health of the State of Rio Grande do Sul

Dr. Maria de Lourdes Drachler presently works at the Department of Health of the State of Rio Grande do Sul, Brazil . Her work has always concentrated on development and evaluation of policies and programmes for social inclusion and equitable care, particularly for people with impairments and disability and children and families in adversity. She applies mixed designs methodologies integrating epidemiological data from individuals, services and geographic areas, as well as interviews with service users and providers. I have developed standardized questionnaires and scales for surveys and trials assessing child development, women’s activities and social participation, treatment expectations and perceptions.

J Seeley, London School of Hygiene and Tropical Medicine, London

Janet Seeley is a social anthropologist by training. She is currently Professor of Anthropology and Health at the London School of Hygiene and Tropical Medicine.  At the time of the CARD project she was Professor of International Development at the University of East Anglia.  She is seconded for 50% of her time to the MRC/UVRI Uganda Research Unit to lead the Social Science Programme, a post she has have held since 2008.  She has beenactively engaged in research on the social aspects of health, particularly HIV and AIDS, since 1987, working in sub-Saharan Africa and Asia. She has also been actively engaged in work on disability, first working on skeletal fluorosis in India in the 1990s and most recently engaged in intervention research with children affected by birth asphyxia (in both Uganda and Ghana).  She has undertaken extended periods of research in Kenya, Uganda, Zambia, India, Nepal, Bangladesh, Pakistan, and Papua New Guinea. In addition to heading the social science programme for the MRC/UVRI Unit, she is now also working with the Africa Health Research Institute (funded by the Wellcome Trust) in KwaZulu-Natal helping to strengthen their social science research, including a work stream on disability research.

Y Alavi, London School of Hygiene and Tropical Medicine, London

Dr. Alavi's main areas of work are in evaluating the impact of impairments and interventions on the lives of people with disabilities. She started in the field of blindness with a quantitative study measuring the quality of life of people with glaucoma. She has also undertaken qualitative work invesigating the impact of musculoskeletal disability on the lives of children in Malawi. The results of the study will inform the development of a quantitative questionairre to measure the effectiveness of interventions for children with physical disabilities in Malawi.

W Mataze, Kyambogo University, Kampala

Myamutale's role in the CARD project is to co-ordinate and administer the programme.  This involves arranging seminars and workshops, hosting international mentors, assisting in the selection of research programmes to be funded and their subsequent financial management as well as compiling and submitting summary reports.

E Mucurnguzi, Kyambogo University, Kampala

Dr. Mucurnguzi is an Associate Professor of Physics since the 1990s. He has supervised over 250 diploma students, 100 BSc students, 3 Masters students and 2 PhD students.

1.
Hartley SD, Yousafzai A, Kaahwa M, Finkenflügel H, Wade A, Bazirake G, Drachler M, Seeley J, Alavi Y, Mataze W, Mucurnguzi E. Community Action Research in Disability (CARD): An inclusive research programme in Uganda. DCIDJ [Internet]. 2017 May 23 [cited 2025 Mar. 14];28(1):5-92. Available from: https://dcidj.uog.edu.et/index.php/up-j-dcbrid/article/view/248
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