Abstract
Ethical issues arising from a participatory action research (PAR)study with Guyanese women living with Type 2 diabetes in the UK
The purpose of the paper is to discuss ethical issues arising from a study with Guyanese women living with Type 2 diabetes in the UK. This study is based on Koch and Kralik’s (2006) democratic, collaborative and participatory action research methodology involving facilitator/researcher and participants equitably. Eight women took part in the study and data were generated over a period of 18 months that consisted of two distinct phases; storytelling in one to one interviews were followed by 14 PAR group sessions where the women were given space and time to share experiences and information. The data were analysed using Koch and Kralik’s ‘look, think and act’ framework.
The following ethical issues which emerged from the findings in the study are selected for this session;
- Delayed diagnosis
- Misconceptions and lack of knowledge among healthcare professionals regarding the needs of this Black and Minority ethnic (BME) group of people
- Inadequate and inappropriate education focused on their individual needs with regard to their lived experience of Type 2 diabetes
Key findings suggest that the women in this study had received a delayed diagnosis. They experienced dizziness, extreme thirst; blurred vision and drinking copious amounts of fluid (DH2010) yet these warning signs did not alert the GP that they might have Type 2 diabetes. This delay in being undiagnosed left the women feeling confused, lonely and ignored. Consequently, the women in this study wanted an improved service that listens to their respective needs and provides a holistic approach to diabetes care. All except one had expressed resentment to their respective GPs in accessing care and treatment and for others the services were disorganised and fragmented. They felt that all diabetic clinics should have facilities under one roof including services for testing vision and monitoring feet. They believed that healthcare practitioners need to develop specific knowledge such as being empathetic towards BME clients, sensitive to the diverse ways culture is demonstrated and celebrated, knowing about a range of diverse needs and how these can be met rather than treating all BME communities as one homogenous group. Finally, all the women demonstrated a thirst for knowledge and information about diabetes yet only three women had attended the ‘Expert’ patient programme. This is congruent with Stone et. al (2006) who suggest that such programmes have not met the needs of BME groups.
I use findings to discuss the ethical issues arising from this study such as equity and justice of access to care for individuals with Type 2 diabetes from BME backgrounds. I conclude that the ‘one size fit model’ that is currently provided may not necessarily be appropriate for those with specific cultural needs as it is based on cultural blindness. I argue that a more collaborative and empowered approach with an emphasis on partnership working with healthcare professionals would have improved the outcomes for the women.
References
Department of Health (2010) Six years On: Delivering the Diabetes National Service Framework. London, Department of Health.
Koch T. & Kralik D. (2006) Participatory Action Research in Health Care. Carlton, Blackwell.
Stone M.A., Patel N., Drake L. & Gayle C. (2006) Making education in diabetes culturally appropriate for patients. Practice Nursing. 17 (12), pp. 621-625.
Biography
Ann Mitchell is a mental health lecturer, author of distance learning materials and Co Director of the BSc (Hons) Adult and Mental Health Nursing at the Open University. As an experienced nurse educationalist, has written extensively on undergraduate and post graduate modules. Ann has contributed to a number of publications on health and social care. Her current PhD study is a participatory action research study of the lived experience of Guyanese women with Type 2 diabetes. She has presented at several national and international conferences this and other subjects and participated in lecturer exchange visits to Sweden and Finland.
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