A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England
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Implications for Education Structured educational programmes could include cultural, social, political and emotional components to raise awareness among health care practitioners caring for individuals from BME communities. Whilst policies have been put in place to develop a culturally competent workforce, I believe these policies need to be operationalised. Cultural competence is a core skill that is already taught in undergraduate health care practice to meet the needs of the diverse population living in England. Yet questions remain about the best way to encourage a change in attitude to BME communities. Health care practitioners need to be challenged on ethnocentric beliefs and practices but this form of sensitive teaching will require time-out to engage in work place workshops to develop skills of cultural awareness which is an important component of cultural competence. They do not necessarily need to be knowledgeable about all the various cultures that individuals belong to but their approach should be one of openness, respect and a willingness to learn about the person’s culture that they are caring for. As the diversity of the population increases, the importance of cultural competence has become even more acute. Whilst there may be similarities among BME communities, it is recognised that there are cultural differences too which need to be acknowledged. If not, failure in recognising these differences may result in discriminatory practice. It is recognised that programmes that deliver cultural competence training need to be evaluated to assess whether they have achieved their goals in skilling up the health care practitioner workforce. It is important that health care practitioners understand that bringing a group together particularly if they share gender, a chronic condition and a similar 'cultural' background, it is likely that self-management (which is a lifelong learning process) will be improved. Nurses from BME communities have acquired the experiences of integrating two cultures into their lives which can lead to the development of positive attitudes towards BME communities. This form of bicultural competence can serve as a vehicle for education and practice but nurses may still need to develop some of the skills of cultural competences such as awareness of and sensitivity to cultural differences and practices.
There is a need to develop further research with this BME community in the UK. Obviously genetic predisposition to diabetes requires further investigation. I visited Guyana in March to observe how Type 2 Diabetes is managed in light of the Guyanese government’s reports and increased incidence of this long-term condition. The recommendation about delivering a responsive service that is collaborative and one that keeps people well informed is relevant in Guyana as well as in England. Through my personal experience validated by that of the group, I assert that a ‘touch of sugar’ appears not to be treated seriously by the majority of the Guyanese population. I believe that public educative health promotion strategies are required. I cannot fully record my initial discussions with the diabetic services in Guyana due to the word limit however PAR would be an ideal approach to research alongside individuals living with diabetes to help them understand and bring about change in their lives. Regardless of residence, whether UK or Guyana, giving voice to those living with long-term conditions and a subsequent PAR group process to initiate education and action is advocated. I recommend similar PAR groups that research alongside men and others living with a chronic illness not necessarily diabetes and sharing a 'cultural' background. Publication of this research should inform health care practitioners’ education and continuing professional development (CPD). This inquiry clearly demonstrates the power of sharing voices in a group as leading to reform (improved self- management) in individual lives and in the group. Key contributions made by this inquiry To the body of knowledge I have contributed to the literature on self-care in BME communities. Guided by the literature, I was able to incorporate Reid’s feminist principles into the research process, the main aim of which was to listen to the voices Guyanese/English women. I strongly believe that the women’s experiences were central to how they felt discriminated against and neglected by the health care services. This is evidenced by the storytelling component of the research process. The stories had not been heard before and the women felt validated. Findings indicate that this group continues to function extremely well self-managing their Type 2 Diabetes. As argued this can be attributed to cultural cohesion and their background similarities. Although the women were diagnosed many years ago, it was realised that it takes several years of trial and error to learn self-management of a chronic condition. In the group the women became motivated to learn about diabetes together what had been previously been a neglected and solitary journey. In the PAR groups, the women set the agenda and this was a true collaboration with the participants. There is no doubt that there was collective action to improve the participants’ well-being. Methodological innovation Participatory action research differs from most other approaches in health and social sciences. It is based on reflection, data generation, and action that aim to improve health and reduce health inequities through involving the people who, in turn, take actions to improve their own health or in this inquiry, improve diabetes self-management. Theoretically I was guided by Koch and Kralik’s (2006) principles encompassing social justice, social equity, freedom of speech and an awareness of human rights. The PAR methodology provided a democratic and collaborative research approach involving facilitators/researchers’ and participants’ cultural practices equitably. I often refer to participants/women as ‘we’, ’us’ or ‘our’, showing my sense in being part of the group. The methodological innovation is the insider space that I occupied as a member of the group which enhances the depth and breadth of understanding of this particular BME community. Koch and Kralik adopted a more outsider approach when using PAR with their specific communities which is not perceived as an impediment when conducting research but has its limitations. Theoretical understanding In terms of new knowledge, I reassessed culture and ethnicity as part of being a member of the PAR group. If theory is defined by its practical effects and is observed to change people’s view of everyday assumptions, theoretically we have confronted the taken for granted meanings of culture, ethnicity and identity as we researched alongside each other. We think differently about ‘our’ place in the world. I have disputed the naïve common sense view about being Guyanese and now see it as a favourable historical construction that suited the purpose of meeting as a group. However I have been astounded by the influence our group has had on my /our sense of belonging. My Guyanese/English identity has been strengthened. 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People with Type 2 Diabetes should have the opportunity to make informed decisions about their care and treatment in partnership with health care professionals. Good communication is essential, supported by evidence-based written information tailored to meet the individual’s needs. Treatment and care should be culturally appropriate and should be accessible to those with additional needs. Families and carers should have the opportunity to be involved in decisions about treatment and care and give support that they might need. Patient education Structured education is an integral part of diabetes care and patients and carers should be informed of this. It should be offered through a group education programme to every person and /or their carer at and around the time of diagnosis with annual reinforcement and review. The programme should have aims and learning objectives and should support development of self-management attitudes, beliefs, knowledge and skills for the learner, their family and carers. An alternative of equal standard to people unable or unwilling to participate in group education should be offered. Dietary advice Dietary and nutritional advice should be provided on an individual basis from a healthcare professional with specific expertise and competencies in nutrition. The advice should be provided in a form that is sensitive to the person’s needs, culture and beliefs, being sensitive to their willingness to change and effects on quality of life. It should be integrated with diabetes management plan, including other aspects of lifestyle modifications such as increasing physical activity. General advice for healthy eating should be given. Management of Depression The health care professional should be alert to the presence of depression and or anxiety especially if it is preventing the individual from self-managing and refer the individual to appropriate services. Self-monitoring of diabetes Self-monitoring should be available as an integral part of self-management education to those on insulin treatment or on oral glucose-lowering medications to provide information on hypoglycaemia, to assess changes in glucose control resulting from medication and lifestyle change. Changes that occur during inter current illness should be monitored and safety during activities including driving should also be monitored. The individual’s glucose HbA1c level should be monitored which may be above the general target of 6.5% which is set for people with Type 2 Diabetes in general by WHO. The individual needs to be encouraged to maintain target unless resulting side effects or efforts to achieve this impair their quality of life. The CV (cardiovascular) risk status should be reviewed annually, risk factors assessed including features of metabolic syndrome and waist circumference, note changes in personal or family history and perform full lipid profile including HDL-C and LDL-C: TG – also perform after diagnosis and repeat before starting lipid-modifying therapy. Blood pressure should be measured annually in a person without previously diagnosed hypertension or renal disease. For a person on antihypertensive therapy at diagnosis of diabetes, BP control and medication used should be reviewed and changes made only if BP is poorly controlled or current medications are inappropriate because of microvascular complications or metabolic problems. Lifestyle advice should be offered re hypertension if blood pressure is consistently above 140/80 mmHg or above 130/80Hg if there is kidney, eye or cerebrovascular damage. The kidneys should be monitored annually regardless of presence of nephropathy and eye screening should either be arranged or performed at or around the time of diagnosis. A quality assured digital retinal photography programme with appropriately trained staff should be used. Repeat structured eye surveillance annually unless findings require other action. Visual acuity testing as a routine part of eye surveillance programmes should be performed. A formal enquiry annually should be made about the development of neuropathic symptoms causing distress. The healthcare practitioner should review understanding at each clinical contact and offer psychological support according to the needs of the individual.
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