Diagnosis of type 2 diabetes: a qualitative analysis of patients’ emotional reactions and views about information provision
Introduction
Knowledge about the receipt of ‘bad news’ and diagnosis of chronic illness indicates this is an emotional time for patients [1], [2], [3], [4], [5]. Regarding diabetes, Gillibrand and Flynn [6], reported that their participants: ‘when told they had diabetes all reported feelings of shock, despair and anxiety in varying degrees’. Over half of Beeney et al.’s [7] 785 questionnaire respondents with type 2 diabetes mellitus (hereafter T2DM) reported that they had experienced strong emotional reactions at the time of diagnosis, including anxiety, shock and anger [8]. The notion that people experience “shock” on receipt of bad news features prominently in the chronic illness literature [1], [2], [9]. Jedlicka-Köhler et al. [3] note that the central feature of “shock” is ‘behaviour that shows failure of functioning and that indicates a degree or intensity of emotion with which an individual is unable to cope’. Indeed, some research suggests powerful negative emotions can disrupt memory [10], and it is commonly assumed that patients struggle to retain ‘the information they are provided with under the stress of diagnosis’ [4], [11].
The explicit or implicit orthodoxy regarding information given at the time of diagnosis of chronic illness is that this should be kept as brief and simple as possible, as patient education at this point is argued to be ineffective (compare to the more developed area of research on information and delivery of cancer diagnoses [12], [13], [14], [15]). According to Histock et al. [8] their diabetic patients:
commonly described being in shock immediately after hearing the news and felt they firstly needed to deal with the complex emotions this evoked … it was not generally considered helpful for health professionals to provide too much information at the time of diagnosis as people felt unable to absorb it at this stage.
Nonetheless, Dietrich [16] found that the attitude doctors displayed toward patients at the time of T2DM diagnosis crucially impacted on their subsequent compliance. Emotional reactions to diagnosis of T2DM and patients’ perceptions of their information needs at the time of diagnosis are, therefore, a vitally important area of investigation.
The growing body of research exploring patients’ perspectives about services suggests that not only do patients appreciate continuity and accessibility of services [17], [18] and a good quality, collaborative relationship with their GP [19], [20], [21], but they principally value the provision of clear information about diabetic management [22]. Diabetes services in the UK and elsewhere are currently shifting from secondary to primary care [23], thus the abilities of health professionals in general practice to communicate the diagnosis of T2DM are of paramount importance. Guidelines emerging from the newly launched National Diabetes Frameworks in the UK stress the importance of information and education as key elements of delivering care [24], [25], [26]. The Frameworks’ recommendations emphasise that information should be conveyed to patients ‘from the point of diagnosis’ onwards, and that education should entail ‘a structured programme for people who have been newly diagnosed’ [27].
Information provision is especially salient for T2DM management given the high level of patient participation necessary for effective management of the dietary/exercise/medication regimen [28], [29]. Ingrained and ongoing self-management behaviours are crucial for the ‘control’ of T2DM, via maintaining normal or near normal blood glucose levels [30], [31]. The link between knowledge about diabetes management and subsequent ‘compliant’ behaviour is by no means linear or unproblematic [32], [33], [34], [35]. Yet information is well accepted as a central component in making patient participation effective [36], and improving patients’ ability to appreciate the seriousness illness and increase compliance [16]. However, the timing, delivery, content and context of information for those diagnosed with T2DM is a moot issue [37], [38], [39].
To date, research regarding information content and provision for patients diagnosed with chronic conditions has overwhelmingly utilised structured interviews, questionnaires and rating scales [36], which potentially constrain respondents’ views within a predetermined framework. At present, there is a dearth of empirical research capturing the perspectives of those newly diagnosed with T2DM. Numerous studies [8], [16] suffer from the associated problems of sampling long-standing diabetic patients and requiring them to reflect back on an event significantly located in their pasts. Therefore, in the study we report here, we utilised in-depth interviews with T2DM patients who had been diagnosed within the last 6 months. Patients are being interviewed three times during their first year post-diagnosis about their experiences and views of diabetes services. This paper reports findings from the first round of interviews in which (amongst other things) we explored patients’ emotional reactions on receipt of diagnosis, and their concomitant views about the provision of information about T2DM and its management.
Section snippets
The sample
Our sample consists of 40 newly diagnosed patients with T2DM. Participants were recruited from across the Lothian region in Scotland. In order to achieve a diversity of participants we recruited from poor and affluent, rural and urban areas: Edinburgh (17 patients); west Lothian (12 patients); and mid Lothian (11 patients). In order to ensure that our sample had been in contact with a range of different services and professionals, we recruited respondents through 16 different GP practices and 3
Results
We observed three main ways in which patients’ described arriving at their diagnosis. These ‘routes’ to diagnosis, which emerged from the data, are ‘suspected diabetes’, ‘illness’ and ‘routine’. The age, sex and socio-economic distributions of patients were broadly similar in the three groups. We report these in turn, before exploring patients’ talk about their information needs at the time of diagnosis.
Conclusions and discussion
Although our study suffers less from the attendant difficulties of retrospective accounting than much of the diabetes literature [7], nevertheless, interviewing patients within 6 months of diagnosis does present a limitation to our findings. Further inductive research on these issues would benefit from examining diagnostic consultations with T2DM patients (see [47] for research based upon tape recordings of consultations in action). Future research could also usefully investigate in more depth
Acknowledgements
The study described in this paper is funded by the Scottish Executive Health Department (SEHD). The Research Unit in Health, Behaviour and Change is funded by SEHD and the Health Education Board for Scotland (HEBS). The opinions expressed in this paper are those of the authors, not of the funding bodies. The authors would like to thank the health care professionals who assisted with recruitment and the interviewees, without whom this research would not have been possible. Thanks to Margaret
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