Health Literacy
Understanding information and education gaps among people with type 1 diabetes: A qualitative investigation

https://doi.org/10.1016/j.pec.2010.04.026Get rights and content

Abstract

Objective

Many patients with type 1 diabetes struggle to self-manage this chronic disease, often because they have a poor knowledge and understanding of the condition. However, little attention has been paid to examining the reasons for this poor knowledge/understanding. To inform future educational interventions, we explored patients’ accounts of the education and information they had received since diagnosis, and the reasons behind gaps in their diabetes knowledge.

Methods

Semi-structured interviews were conducted with 30 type 1 diabetes patients enrolled on a structured education programme in the UK. Data were analysed using an inductive, thematic approach.

Results

Patients’ accounts illustrated a number of knowledge deficits which were influenced by various lifecourse events. Reasons for deficits included: diagnosis at a young age and assumption of decision-making responsibility by parents; lack of engagement with information when feeling well; transitions in care; inconsistency in information provision; and, lack of awareness that knowledge was poor or incomplete.

Conclusion

Patients’ knowledge deficits can arise for different reasons, at different points in the lifecourse, and may change over time.

Practice implications

The delivery of individualised education should take account of the origins of patients’ knowledge gaps and be provided on a regular and on-going basis.

Introduction

With an increasing public health burden arising from chronic diseases such as diabetes, emphasis is placed upon patients to take responsibility for disease self-management. Patient education can lead to improved knowledge and self-management skills [1], which reduces risks of developing complications [2]. In the UK, as in other countries [3], health services are now required to provide diabetes education tailored to patients’ individual, social and cultural needs [4], [5], [6]. An exemplar education course, which is offered to type 1 diabetes patients in the UK, is the Dose Adjustment for Normal Eating (DAFNE) programme [7]. Similar programmes are available to patients with type 2 diabetes [8], and in other countries [9], [10].

In seeking to understand why patients may encounter difficulties with disease self-management, studies have found significant knowledge deficits among individuals with diabetes. These include deficits relating to: administering medication; treatment of hypoglycaemia; glucose testing; diet; following sick-day guidelines; foot care; and, understanding of HbA1c results [11], [12], [13], [14], [15]. While extensive use has been made of questionnaires to measure patients’ knowledge [14], [16], [17], [18], [19], considerably less attention has been paid to examining and understanding the sources of, and reasons for, diabetes knowledge deficits. When qualitative work, drawing upon patients’ own understandings and views, has been undertaken, it has principally been concerned with examining patients’ current information needs, including those arising during childhood/adolescence [20], [21] and at times of transition in provision of care [22]. Given the emphasis now placed upon individualising educational approaches [4], [5], [23], it is important to explore the origins of, and factors which influence, patients’ knowledge deficits to ensure these are addressed through appropriately tailored interventions.

This study originated from a larger, qualitative study exploring patients’ experiences and views of participating in the DAFNE programme. DAFNE is an established educational intervention for patients with type 1 diabetes in the UK, and is informed by group-based adult learning principles. Two educators (a diabetes specialist nurse and dietician) deliver the programme to groups of 6–8 people, over 5 consecutive days, using a standardised curriculum. Dietary flexibility is promoted by teaching participants to count carbohydrates and use/interpret results from self-monitoring of blood glucose (SMBG) so that they can adjust their insulin dosages according to their food choices. The course also comprises topics on: physical activity, nutrition, managing hypoglycaemia, alcohol, sickness, complications and pregnancy.

The findings reported here are drawn from patients’ post-course interviews, and focus upon accounts of their diabetes knowledge, information received since diagnosis and its sources; and, views on education/knowledge delivery and acquisition and how this could be improved. The aim was to examine and explore how, and why, gaps in patients’ diabetes knowledge originated, in order to inform the development of future educational interventions.

Section snippets

Study sample and design

Individuals who had agreed to attend a DAFNE course were recruited from six courses across five diabetes centres in the UK. Prior to each course, DAFNE educators provided attendees with an information sheet and sought permission for a study team member to contact them to discuss the study and seek consent to participate. Thirty patients were recruited, with the last two courses purposively sampled to ensure diversity of sex, age, occupation and years since diagnosis in the final sample.

Results

Having been on a DAFNE course, many participants conveyed surprise about how poor and fragmented their knowledge and understanding of their diabetes had been prior to course attendance. Several participants, for instance, described how, prior to DAFNE, they had managed their diabetes by avoiding sugary foods as they had not fully understood or appreciated the impact that other foodstuffs could have on their blood glucose control or insulin requirements. Patients, likewise, highlighted a limited

Discussion

This study has identified multiple, overlapping reasons behind the knowledge deficits commonly observed among patients with type 1 diabetes. Our findings demonstrate that patients’ perceived need for, receptiveness to, and ability to access diabetes knowledge may shift and change over time, depending on: their lifecourse position; during transitions in care provision; according to personal/family circumstances; in response to whether they feel well or have begun to experience complications; as

Disclosure statement

I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

Acknowledgements

This study is funded by the NIHR as part of a broader programme of research entitled ‘Improving management of type 1 diabetes in the UK: the DAFNE programme as a research test bed’. We gratefully acknowledge the support of the other members of the DAFNE research collaborative and the patients and educators who took part. We would particularly like to thank Marie Clark, Debbie Cooke and Celia Emery for their hard work in helping to secure ethics and R&D approvals, and in the recruitment of

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