Collaborative development of a code of ethics for research with persons with disabilities in Cape Town

Abstract

Background: Persons with disabilities (PWD) have been identified as a vulnerable group in the City of Cape Town’s Vulnerable Groups Policy. While research among vulnerable groups (e.g. PWD) is essential to inform policy and responsive service delivery, it is often implemented by consultants or researchers who make all the decisions. Participatory processes to increase research not only about, but also with and by PWD are needed to empower this vulnerable group in active citizenship. Aims & objectives: The main aim of the project was to develop a peer-reviewed position paper and a code of ethics for research with persons with disabilities in the Cape Town context (with possible transference elsewhere later). The study objectives, or steps to achieve this aim, were: - to explore past research experiences of persons with disabilities in the study setting - to analyse, critique and apply evidence from past studies in developing a position paper - to collaboratively synthesise and create a code of ethics for research with persons with disabilities in the CCT area. Method: A mixed method study with participatory elements was planned. Study population, sampling and participants: The study population comprised of persons with disabilities (18 years or older) in Cape Town; a combination of purposive sampling and volunteer sampling was applied through disability focused NPOs, through the City of Cape Town Office for Affirmative Action and Disability Management and through direct contact of the collaborating researchers’ personal contacts. Due to administrative process delays and strict NPO gatekeeping a total of only 32 participants could be recruited. Data collection strategies included: - a questionnaire survey designed to be applied flexibly in order to be accessible for persons with diverse disabilities i.e. it could be (a) sent and completed electronically to purposely identified participants and/or (b) completed telephonically or (c) presented as a brief questionnaire-based interview. The questionnaire was piloted with 2 participants and minor logistical adaptations were made to assist participants with its completion. - a focus group discussion with 13 participants (who volunteered during the questionnaire survey) to formulate a draft code of ethics for research with PWD Data analysis: Thematic analysis was applied to the predominantly qualitative findings. Basic descriptive and visual analysis was applied to the smaller proportion of quantitative data. Ethics approval was received from both SU and UCT and permission to do the study within specific parameters was received from the City of Cape Town. Rigour and trustworthiness precautions included an audit trail, member checking and peer-debriefing. Findings included participants’ unanimous request for more meaningful inclusion in all stages of research studies concerning them; from topic prioritisation to planning to dissemination – not just as participants during data collection. Key messages included the imperative for researchers to take all research findings back to the research participants (as this does not usually happen) and gatekeepers not overprotecting this vulnerable group at the cost of silencing their voices. Value of the project to knowledge generation in universities & linkages to the priorities of the CCT: The project aligned well with the CCT’s strategic focus areas of ‘A Caring City’ and moreover ‘An Inclusive City’. In addition to a public dissemination event planned in the near future, a draft code of ethics that is in process and a peer-reviewed publication to reach academic communities, the findings are also being prepared for dissemination (1) to the Public Health Association of SA (PHASA) conference later this year (abstract already accepted) and (2) to the 16th Annual International Conference on Clinical Ethics & Consultation in early 2020, pending abstract acceptance.