The Perceptions and Experiences of Gout in a Rural Māori Community

Abstract

Gout is a common type of inflammatory arthritis which can flare up if untreated, resulting in significant pain and disability. Gout is particularly prevalent and a considerable health burden in Māori. However, Māori with gout have worse disease outcomes than non-Māori. There is a lack of data on how gout is seen in the Māori community and particularly in rural areas with poorer health resources. This thesis comprised of two studies. The first explores the perceptions and experiences of rural Māori with gout. The second tested the effect that a name change from gout to urate crystal arthritis has on rural Māori perceptions of the illness. The first study aimed to investigate the perceptions and experiences of Māori with gout. 51 Māori with gout were recruited in the small rural town of Wairoa in Hawkes Bay. Participants completed three tasks: a questionnaire, a drawing task and an interview. The questionnaire asked participants about their gout, their perceptions of gout, their functional ability, doctor experiences, optimism, confidence managing gout, how satisfied they were with their body image, and any stigma that they may feel. Drawings were used to see if they could reveal participants’ illness representations and how these related to clinical outcomes such as pain and flares, as well as stigma and functional disability. The results found that more negative illness perceptions were associated with a greater number of gout flares, pain levels, functional disability, body image dissatisfaction, and stigma. The size of the participants’ drawings of their feet were also associated with more negative illness beliefs, stigma and clinical outcomes. The level of deformity in participants’ drawings was associated with greater pain, length of time living with gout and the amount of time on medication. The interviews were categorised into common themes. Food was perceived to be the main cause of gout among the sample. Thoughts regarding pain were common, as was self-blame. Feelings of annoyance and anger were also frequent during a flare, and most of the sample had experiences where people laughed at them or teased them about their gout. Although participants felt comfortable telling others about their illness, most believed that others were not sympathetic. Changing the name of gout has been proposed as a way to avoid many of the unhelpful perceptions about gout. The second study investigated the effects that an illness label change from ‘gout’ to ‘urate crystal arthritis’ would have on perceptions and beliefs surrounding the illness in a Māori community. 79 Māori supermarket shoppers, in the small rural town of Wairoa, were given one of two different versions of a disease description, where the questionnaires either used the term ‘gout’ or ‘urate crystal arthritis’. Participants were asked to rate the health of someone with the illness, as well as the factors that may cause the illness, illness perceptions, medication beliefs, strategies to manage the illness and how serious or embarrassing the illness would be. Results showed a patient with urate crystal arthritis was rated in better health than one with gout. Diet was seen as a more likely cause for gout, whereas ageing, heredity, chance, pollution and a germ or virus were perceived as more of a cause for urate crystal arthritis. The gout labelled illness was also thought to benefit more from changing to a healthier diet. Therefore in a Māori community, changing the illness label of ‘gout’ can have an impact on the perceived health of someone with the illness, causal beliefs and management strategies. Overall, these two studies provided an understanding about the perceptions that Māori with gout have about the illness, as well as the perceptions of the wider Māori community. Although the studies were limited by their use of self-reports, these studies were able to provide a range of significant results which have theoretical, clinical and methodological implications for Māori and the wider community. Future research should consider the perceptions that whānau have regarding gout and how feelings of stigma can be reduced in Māori patients.