- Email: [email protected]
Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons
G Model PEC 5814 No. of Pages 7
Patient Education and Counseling xxx (2017) xxx–xxx
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Research Paper
Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons Vivien Coatesa,b,* , Mary Slevinc, Marian Careyd , Paul Slatere, Mark Daviesf a
Institute of Nursing and Health Research, Ulster University, Magee campus, Londonderry BT48 7JL, United Kingdom Western Health and Social Care Trust, Altnagelvin Hospital,Glenshane Road, Londonderry BT47 6SB, United Kingdom c Institute of Nursing and Health Research, Ulster University, Cromore Road, Coleraine BT52 1SA, United Kingdom d Leicester Diabetes Centre (Air Wing), Leicester General Hospital, Gwendolen Road, Leicester LE5 4PW, United Kingdom e Institute of Nursing and Health Research, Ulster University, Shore Road, Newtownabbey, Co Antrim BT37 0QB, United Kingdom f Belfast Health and Social Care Trust, Belfast City Hospital, Lisburn Road, Belfast BT9 7AB, United Kingdom b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 2 June 2017 Received in revised form 18 October 2017 Accepted 20 October 2017
Objective: to identify the expressed reasons adults with type 2 diabetes decline structured diabetes education (SDE). Methods: cross sectional survey of 335 adults with type 2 diabetes who had declined SDE within the past two years, from across Northern Ireland and England. Standardised instruments comprising The Diabetes Attitude Scale, Diabetes Empowerment Scale (Short Form), and Diabetes Knowledge Test plus a questionnaire to elicit the reasons for declining SDE were used. Results: Mean age 57.6 years (21.1) 50.7% males, predominantly of White ethnicity (85.7%). They were most frequently invited to attend by a diabetes specialist nurse (36%), general practitioner (27%) or practice nurse (19%). Although a diversity of reasons for declining SDE were cited the most common were; ‘The course was too long’ (47.2%), ‘I have other health problems’ (41.2%) and they had other priorities (33.4%). Hierarchical cluster analysis revealed that expressed reasons for declining SDE were highly individualised. Conclusion: The wide range of reasons that impeded attendance suggests there is no simple solution that will improve attendance rates. Practice implications: In the same way that medical treatment for diabetes is becoming increasingly individualised, educational provision should be encouraged to move away from a one size fits all model. © 2017 Published by Elsevier Ireland Ltd.
Keywords: Structured education Type 2 diabetes Non-attendance
1. Introduction 1.1. Structured diabetes education The importance of people with diabetes self-managing their condition effectively on a daily basis is paramount. NICE Guidelines [1] assert that structured diabetes education (SDE) should be available for all adults with type 2 diabetes near to the time of diagnosis, with ongoing opportunities to reinforce content and review knowledge, understanding and educational needs. It is
* Corresponding author at: Institute of Nursing and Health Research, Ulster University, Magee campus, Londonderry, BT48 7JL, United Kingdom. E-mail address: [email protected] (V. Coates).
emphasised that such education is not only an integral part of diabetes management but also a quality indicator for diabetes care. The purpose of SDE is to provide ‘ . . . people with diabetes, their family and their carers with the knowledge and confidence to self-manage a long-term condition’ [2]. High quality programmes should reflect individualised care, be evidence-based, have specified aims and objectives, and follow a written structured curriculum based on theories of learning [1]. The programmes are to be delivered by suitably trained and prepared educators and must be audited to ensure that these and other quality indicators are met. This represents significant progress over the last two decades from the time when education was often provided on an opportunistic basis during routine review appointments.
https://doi.org/10.1016/j.pec.2017.10.013 0738-3991/© 2017 Published by Elsevier Ireland Ltd.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
2
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
1.2. Active self-management
2. Methods
The range of available medical treatments has expanded rapidly over the past ten years in response to increasing knowledge about optimising glycaemic control and reducing or postponing the onset of diabetes related complications. However, at the root of all diabetes care is the need for individuals to understand their role in its management and to have the knowledge, skills and motivation to become active self-managers. Our understanding and appreciation of the impact of psychosocial factors upon diabetes selfmanagement has also evolved. Effective education must include the development of attitudes and beliefs conducive to long-term self-management [3] to support and sustain individuals and their families over time.
The target population were adults, newly diagnosed or having established type 2 diabetes, who had previously declined an invitation to attend an SDE programme in the previous two years, or who had initially accepted but never attended. Diabetes nurse specialists/dietitians in the participating centres who administer SDE programmes were asked to keep records of all potential participants who met the inclusion criteria and inform them by telephone or in person about the study. The study researcher then contacted those interested in participating, provided an information leaflet and ascertained their preferred means of completing the questionnaire. Based on an annual estimated population of 6500 newly diagnosed adults with type 2 diabetes (Leicestershire and Northern Ireland (NI), the target population of those who do not engage in SDE (40%) was 2600. It was estimated that a sample size of 335 would thus be required based on a 5% margin of error and 95% confidence level. Participants were recruited between January 2014 and April 2015. Four sites from NI and five (including four Participant Identification Centres) from England participated in the study. All participants who completed a questionnaire received a £15 gift voucher as an acknowledgement of their input and because the cohort were considered to be a difficult to reach group.
1.3. Declining structured diabetes education Although the effectiveness of structured education has been demonstrated for those with type 2 diabetes [4–7] evidence also suggests that many individuals do not avail themselves of such programmes when referred [8,9]. Whilst lack of service provision and health professional training relating to education, selfmanagement and psychological support may be an issue in some areas [10] there is also a significant number of individuals who, when invited to attend a SDE programme, decline the opportunity to do so. This study was designed to explore in detail the reasons adults with type 2 diabetes choose not to engage with SDE to inform and broaden the reach of SDE from a sound evidence base. The impact of demographic variables, physical wellbeing, depression and anxiety, knowledge, and attitudes towards diabetes upon the decision to decline SDE will also be explored.
2.1. Design A quantitative survey was conducted using a structured questionnaire. Ethical approval was obtained (ID: 09/NIRO1/31) and completion of the questionnaire indicated informed consent.
Table 1 Demographic characteristics of non-attendees of SDE. All (n 335)
Gender (%)
Male Female
57.6 12.1 3.3 4.4 (0.1–30) 170 (50.7) 165 (49.3)
Marital Status (%)
Single Married/cohabiting Widowed Separated Divorced
50 (14.9) 218 (65.1) 22 (6.6) 14 (4.2) 31 (9.3)
Employment (%)
Full time Part time Carer/housewife Unemployed Education Retired Long-term sick
73 (21.8) 33 (9.9) 30 (9.0) 28 (8.4) 1 (0.3) 112 (33.4) 58 (17.3)
Ethnic origin (%)
White British White Irish Indian Caribbean Other
204 (60.9) 83 (24.8) 32 (9.6) 6 (1.8) 10 (3.0)
Treatment (%)
Diet and exercise Diet, exercise and tablets Non-insulin injections Insulin injections A combination of some or all the above
106 (31.6) 181 (54.0) 3 (0.9) 13 (3.9) 32 (9.6)
Age at time of recruitment (y) Years diagnosed (range)
Data presented as mean and SD. Other Ethnic origin; African, Pakistani, Chinese, other black/white/Asian backgrounds.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
2.2. Data gathering The questionnaire was designed to capture variables known to have an important role in patient self-management and to probe non-attendance at SDE. A booklet of standardized instruments was compiled. The instruments used were; The Diabetes Attitude Scale [11]: The Diabetes Empowerment Scale–short form [12] and the Diabetes Knowledge Test (DKT) [13]. All instruments have proven psychometric properties in international samples of people with diabetes [14]. The Diabetes Attitude Scale comprised 33 items addressing five constructs: 1) need for special training, 2) perceived seriousness of type 2 diabetes 3) value of tight control, 4) psychosocial impact of diabetes and 5) patient autonomy to assess general diabetes related attitudes and beliefs. The Diabetes Empowerment Scale- short form [12] is an eightitem questionnaire designed to measure the perceived self-efficacy of people with diabetes. The Diabetes Attitude Scale and the Diabetes Empowerment Scale were both measured on a 5-point Likert Scale (1-Strongly Disagree – 5-Strongly Agree). Scores were aggregated to mean score level. Scale reliabilities were calculated using Cronbach’s coefficient alpha, a reliability coefficient of 0.70 or higher was considered acceptable [15]. Both proved satisfactory. The Diabetes Knowledge Test included the first 14 items appropriate for people who do not use insulin. Correct answers were coded as 1 so potential scores ranged from 0 to 14. The mean results were banded to indicate differing levels of knowledge, based on our clinical judgement as follows; 0–7 poor, 8–10 moderate and 11–14 good.
3
2.3. Demographic, health, diabetes variables and reasons for nonattendance Demographic, general health and diabetes specific data were collected. In addition, a questionnaire of the most common potential reasons for declining education was included. Potential reasons were marked ‘Not an issue’, ‘Bit of an issue’ or ‘A big issue’ in respect of the decision to decline SDE. The potential reasons were identified following a multi-professional regional audit of SDE completed in 2006 to quality assure SDE programmes across N. Ireland using the NICE standards. The instruments were merged into one data gathering booklet following some modest modifications that were necessary to ensure they applied to adults in the United Kingdom (UK). For example, in the DKT questionnaire using examples of foods to which a UK rather than an American population would relate. The booklet was piloted to establish content and face validity: 138 people with newly diagnosed diabetes who had decided not to attend a diabetes education programme offered to them within the previous 12 months were sent a questionnaire. Of these, 23 were returned (17%). Thereafter five telephone interviews were conducted. Subsequently a number of changes to the layout and presentation of the booklet were made to enhance clarity prior to use in the main study. 3. Results 3.1. Profile of participants A sample of 335 people meeting the inclusion criteria were recruited to the study. The total number of potential participants
Table 2 Reasons for non-attendance at SDE. ‘Big Issue’ & ‘Bit of an Issue’ combined
Total n (%)
3 h is too long I have other health problems I had other things to sort out I don’t feel as though I need to go to a diabetes education group I didn’t have time I couldn’t get to the venue I feel able to cope on my own I have learned about diabetes from other sources I have too many appointments to go to already I didn’t really see the point I couldn’t get time off work I don’t think I would gain anything from the group I would feel embarrassed in a group I don’t understand why I was asked to go to a diabetes education group I couldn’t sort out transport I had more important things to do My doctor/nurse didn’t tell me much about diabetes education I don’t think I would understand the medical language I was too depressed to go I haven’t accepted my diabetes ‘Education’ sounds like school I had to look after my wife/husband/parent I mislaid or forgot my appointment I’m scared of thinking about diabetes My doctor/nurse seemed unenthusiastic about diabetes education It’s too soon after being diagnosed to think about it My doctor/nurse didn’t think that diabetes education was as important as my other treatment I couldn’t get anyone to look after my children
158 (47.2) 138 (41.2) 112 (33.4) 107 (31.9) 106 (31.6) 97 (29.0) 97 (29.0) 89 (26.6) 89 (26.6) 83 (24.8) 80 (23.9) 73 (21.8) 68 (20.3) 68 (20.3) 68 (20.3) 64 (19.1) 57 (17.0) 58 (17.3) 54 (16.1) 51 (15.2) 51 (15.2) 47 (14.0) 36 (10.7) 32 (9.6) 30 (9.0) 29 (8.7) 28 (8.4) 24 (7.2)
The data were analysed to explore whether or not men and women expressed different reasons for declining SDE. From the list above the following were significantly different.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
4
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
approached was 546, with 383 (70%) agreeing to participate and 335 (61%) subsequently returning a completed booklet. The demographic profile of the participants (Table 1) illustrates that a broad cross section of the population in terms of age, marital status and employment were included. However, despite aiming to include those from diverse backgrounds, the sample comprised 85.7% (n = 287) White individuals. Few participants came from minority ethnic backgrounds, with the largest sub-group being of Indian origin, 9.6% (n = 32). The inclusion, of a power calculation and its achievement, with a high response rate make generalisability of the findings to White individuals in the UK population possible. 3.2. SDE programme offered and by whom Across the nine sites involved in the research the DESMOND course was the most frequently offered SDE programme (247, 73.7%). Other programmes offered included X-PERT, SET 2, DAY (Diabetes and You) (42, 12.5% collectively) and a bespoke SDE programme (46, 13.7%). Over a third (36%) were invited to attend by a diabetes specialist nurse with general practitioners and practice nurses inviting 27% and 19% respectively. Other health care professionals reported to have initiated the invitation included: dietitian 5%, hospital doctor 4%, and 9% by a range of others or not specified. The majority (256, 76%) of respondents reported that sufficient information was provided about the SDE when the invitation was made. 3.3. Other health problems Complications arising from diabetes were reported by 157 (47%) participants: 36% (n = 119) reported one to two complications; and 11% (n = 38) reported three or more complications. The most frequently cited diabetes related complications were problems with eyes (90, 27%), followed by problems with feet (78, 23%), depression/anxiety (73, 22%), heart (32, 10%) and kidneys (25, 8%). Health problems, unrelated to diabetes, during the previous 12 months were also reported. Responses showed a wide range of conditions, such as; hypertension 187 (56%), arthritic disorders 149 (45%) and lung problems 67 (20%). In total, 136 (41%) respondents reported either none or one co-morbidity, 167 (50%) reported 2–4 while 32 (10%) reported 5 or more. Of the 133 people who reported a condition under the heading of ‘Other’, depression/anxiety were the conditions most commonly identified (104, 78%, [ie: 31% of entire sample]).
to the venue and also that they are more impeded by their caring roles than men. 3.5. A lack of clusters In order to determine whether or not themes emerged amongst the participants, a cluster analysis was undertaken. All 28 reasons for not attending self-management education classes were collapsed to provide an issue/not an issue dichotomy. The reasons were examined using a hierarchical cluster analysis (Squared Euclidian Distance) to identify potential clustering in responses. Examination of the findings show limited clusters as indicated by large distances between items and/or very small positive responses. A reduced number of the five main reasons for not attending also failed to identify satisfactory clusters. The failure to identify clusters indicates the individuality of participants’ expressed reasons for choosing not to attend SDE and presents difficulties when developing interventions to redress the issues. 3.6. Diabetes knowledge test The abridged DKT comprising 14 items generated a mean score for all participants of 8.59 (SD 2.34) There was no significant difference in mean results between males 8.64 (SD 2.4) and females 8.55 (SD 2.2). 3.7. Diabetes attitude scale (DAS) A higher score indicated a more positive attitude to diabetes. The mean score for all participants was 3.75 (SD 0.32), with no significant differences in scores between males 3.75 (SD 0.33) and females 3.75 (SD 0.31). When the DAS is broken down into five subscales; 1) need for special training, 2) seriousness of type 2 diabetes, 3) value of tight control, 4) psychosocial impact of DM and 5) patient autonomy, and the means examined (Table 4). The sub-scale that participants most strongly agreed with was need for special training 4.12 (SD 0.52). This was followed by value of tight control 3.82 (SD 0.56), seriousness of type 2 diabetes 3.79 SD 0.60), patient autonomy 3.59 (SD 0.49) and psychosocial impact of DM 3.58 (SD 0.63). These scores are all relatively positive. Overall the respondents believed that special training was important, they agreed that it was important to keep blood glucose near normal, that diabetes was a serious condition, that the person living with diabetes is the one who should make the daily decisions about its management and that they did not feel the condition had a negative psychosocial impact on them.
3.4. Reasons why SDE was declined 3.8. Diabetes empowerment scale (DES) short form The central focus of the survey was to explore why those with diabetes declined SDE. In the questionnaire 28 reasons were listed with three response options offered. The respondents ticked all that applied to them. The responses to ‘Big issue’ and ‘Bit of an issue’ combined are shown in descending order in Table 2. The results demonstrate a wide diversity of reasons why SDE was declined. Results from Table 3 suggest that women are less independent regarding transport and therefore have more problems in getting
A higher score indicated more perceived empowerment. The mean score for all participants was 3.81 (SD 0.61). There were no statistical differences observed between genders, with mean empowerment in males 3.85 (SD 0.59) and females 3.77 (SD 0.62). Further analysis (Table 5) illustrates that younger people with type 2 diabetes were significantly more knowledgeable than older persons. Those with more positive attitudes to their diabetes
Table 3 Reasons for non-attendance at SDE and differences between gender. (Big issue and bit of an issue combined)
I couldn’t get to the venue I couldn’t sort out transport I had to look after my wife/husband/parent a
Total n (%)
Male n (%)
Female n (%)
P value
97 (29.0) 68 (20.3) 47 (14.0)
25 (14.7) 17 (10.0) 16 (9.4)
72 (43.6) 51 (30.9) 31 (18.8)
<0.001a <0.001a 0.014a
Significant differences between males (n 170) and females (n 165) were obtained by Chi-square with Bonferroni correction. P values of <0.002 are shown.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
5
Table 4 Diabetes Attitude, Empowerment and Knowledge Scales. Range Poor – Good
Number of items
Result (n = 335)
Diabetes Attitude Scale - Need for special training - Seriousness of NIDDM - Value of tight control - Psychosocial impact of DM - Patient autonomy
1–5 1–5 1–5 1–5 1–5 1–5
33 5 7 7 6 8
3.75 (0.32) 4.12 (0.52) 3.79 (0.60) 3.80 (0.56) 3.57 (0.63) 3.59 (0.49)
Diabetes Empowerment Scale
1–5
8
3.81 (0.61)
Diabetes Knowledge Test
Minimum – 3
Maximum scores 14
8.59 (2.34)
Values presented as mean and standard deviation.
Table 5 Age and years diagnosed split by tertiles of diabetes knowledge scores.
Age (years) Years diagnosed DES DAS - Need for special training - Seriousness of NIDDM - Value of tight control - Psychosocial impact of DM - Patient autonomy
Poor
Moderate
Good
p
58.9 (10.8)a 3.5 (4.5) 3.82 (0.7) 3.70 (0.3)a 4.15 (0.5) 3.67 (0.6)a 3.74 (0.6)a 3.54 (0.6) 3.62 (0.5)
59.5 (12.6)a 2.6 (3.6) 3.78 (0.5) 3.72 (0.3)a 4.08 (0.5) 3.76 (0.6)a 3.79 (0.5)a 3.68 (0.6) 3.52 (0.5)
54.6 (12.3)b 3.6 (4.9) 3.84 (0.5) 3.82 (0.3)b 4.13 (0.5) 3.94 (0.6)b 3.96 (0.5)b 3.59 (0.6) 3.62 (0.4)
0.004* 0.141 0.801 0.004* 0.554 0.001* <0.001* 0.847 0.242
DES, Diabetes Empowerment Scale; DAS, Diabetes Attitude Scale. Values are presented as mean (SD). Test score poor 7 correct answers, Test score moderate 8– 10 correct answers, Test score good 11 correct answers. a,b different superscript letters in a row indicate significant difference between groups (Tukey Post-Hoc tests P < 0.05). * Significant difference between knowledge test groups (one way Anova, P < 0.05).
(indicated by a higher score on the DAS) were more knowledgeable, as were those who took their diabetes more seriously and those who acknowledged the value of tight control. 3.9. What would you change? Participants were invited to respond, in free text, to the question ‘If we could change one thing about diabetes education to encourage you to take part, what would it be?’. The five most frequently mentioned responses were: ‘Nothing would encourage me to go’ 99 (29.6%), ‘Shorter courses’, 60 (17.9%), ‘Evening/ weekend/flexible sessions’, 58 (17.3%); ‘Health service or health care practitioner related’, 55 (16.4%) and courses delivered closer to home, 32 (9.6%). Online/Skype or more written information was only suggested by five (1.5%) people. Respondents were then asked if the ‘one thing’ they had suggested were to be changed would they consider attending SDE and 241 (72%) reported that they would do so. 4. Discussion and conclusion 4.1. Discussion When exploring the reasons why SDE was declined, an obvious consideration is that such individuals were already sufficiently knowledgeable. Therefore, assessment of knowledge was an important part of this study. Out of a maximum score of 14 the mean was 8.59. Bearing in mind that the questions posed covered topics essential to diabetes management such as diet, testing blood
glucose levels and the effect of exercise on blood glucose levels, it can be seen that there was a clear lack of knowledge relevant to basic self-management of diabetes. While knowledge alone is unlikely to ensure good self-management [3], a lack of knowledge increases the likelihood of poor control. When coupled with a lack of symptoms, poor awareness of the consequences of diabetes and its nature as a progressive disease, it may indicate a false sense of security in people at high risk of developing complications. It is concluded that many of those who participated in this survey could have benefited from attending the SDE programme to which they were invited. Empowerment is an important component of self-management in as much as it provides individuals with opportunities to achieve greater control over their own decisions and practices affecting their health. It has been shown to have a positive impact upon glycaemia [16] and both knowledge and empowerment contribute to improved wellbeing [17]. The mean score from this cohort was 3.81 (SD 0.61, range 0 5). Therefore despite knowledge deficits and the onset of complications arising from diabetes this sample mostly felt empowered to manage their diabetes. This may be one of the reasons why they declined SDE. However, while this independence might make sense to the person with diabetes, unawareness of their own lack of knowledge about the consequences of diabetes, as mentioned above, may put them at risk. A case of ‘you don’t know what you don’t know’. The need for a good understanding of the management of diabetes is further emphasised when considering the number of individuals reporting a complication arising from their diabetes. Although assessed by self-report rather than from case note review (and therefore open to some error) it was reported that 157 (47%) respondents had already developed at least one diabetes complication. It is known that individuals fear the complications of diabetes [18,19], yet the respondents were still not sufficiently motivated to attend SDE. Rouyand et al. [20] concluded those with type 2 diabetes tend to have a low risk awareness for the development of diabetes-related complications. They note that: ‘Ensuring that people have accurate perceptions of their risks for complications is, indeed, a prerequisite for the effective management of the condition’ (p475). It should also be noted that the mean age at recruitment was 57.6 (SD 12.1) years, indicating that this was a middle aged, rather than an elderly, cohort and as such the development of complications carries an even greater threat to future health. To address the main aim of this study (to identify the reasons why people with type 2 diabetes declined to engage with SDE) participants were asked to consider why they declined to attend from a list of 28 items. Table 2 shows that the most frequently cited response was ‘3 hours is too long’. DESMOND was the most
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
6
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
commonly offered programme and lasts for 6 h, often divided between two 3 h sessions [5]. Given the complexity of managing diabetes, and preparing individuals for a lifelong commitment, 6 h may not seem excessive but for these individuals it was a barrier. The options then are to modify timing or mode of delivery of the programme (eg HeLP-Diabetes, [21]). Although commissioning more programmes would require additional funding, given the costs associated with managing the long term complications of diabetes [22] investing in self-management education should be seen as worthwhile. If we then consider the other reasons that were given by at least a quarter of the respondents it can be seen that perceived lack of importance was an issue (‘I had other things to sort out’ [112,33%], ‘I didn’t have time’ [106 32%] ‘I didn’t really see the point’ [83,25%]). Coexisting health problems presented a barrier for many [138,41%] resulting in other appointments that competed for their attention [89,27%]. There were also those who felt they had learned enough from other sources [89,27%]. These reasons suggest that a concerted effort is required to promote the importance of attending the programmes [23]. Individuals need to be made aware of the knowledge and skills they may be lacking. The enduring perception that diabetes is a ‘mild condition’ that they do not need to prioritise above other competing demands is still a deterrent for some. ‘I couldn’t get to the venue’ [97,29%] is a somewhat surprising reason. Assuming that management of type 2 diabetes tends to be community based, SDE programmes would be more likely to be offered locally. Lack of enthusiasm of referrers [30,29%], inability to get child care [24,7.2%], and expressed embarrassment about taking part in a group [68,20.3%] suggests that despite the value of a structured programme, a substantial number of individuals feel unable to commit to current SDE provision. For these people, a more individualised appraisal of need is required [3]. However, apart from the more commonly cited reasons discussed above, there was a very wide range of other barriers that prevented individuals from attending SDE. Cluster analysis was used to identify themes and predictors but none were isolated. This suggests that there will be no single solution to enhancing attendance at SDE; rather a range of options will be required to offer a more individualised approach for those for whom a particular SDE programme does not appeal. Schwennesen et al. [24] also concluded that a wide range of barriers, spanning both individual and organisational factors prevent attendance at selfmanagement education for those with type 2 diabetes. In other areas of diabetes management, it has also been recognised that a range of innovative options may be required [25,1]. Why therefore should education be any different? The theoretical basis for SDE programmes is varied. For example the DESMOND programme (offered to 73.7% of participants) is based on three psychological theories of learning plus an overall philosophy of patient empowerment [5] and yet the ways in which the programmes influence self-management remain elusive [26]. These results emphasise the need for person centred provision, in which the guiding principle is to enable individuals to manage their own health effectively. However, while tailoring provision to the needs of the individual might seem rather obvious for any form of health care the Health Foundation [27], emphasises that ‘it is not standard practice’ (p3). The issue of depression and anxiety as a barrier to attendance should not be overlooked. Almost a quarter of the sample reported significant psychological symptomatology secondary to their diabetes and of the 133 people who reported an ‘other’ health condition’, depression/anxiety were identified by 104, nearly one third of the sample. There is a growing literature regarding the incidence and impact of depression in those with diabetes [28] with depression occurring in approximately 30% of them [29]. For
these individuals it may be necessary to treat the depression prior to them being able to attend SDE. Swardfager et al. [30] report that even mild depression ‘posed a significant barrier to completion’ of an exercise programme. Holt et al. [10] report that, despite high levels of clinically significant depression, psychological care and co-ordination with mental health services was an often neglected area. Conversely diabetes education was associated with better psychological wellbeing while barriers to education were associated with worse psychological outcomes [17]. When asked to suggest one thing that might be changed to enable them to attend SDE, a wide range of solutions were offered. The most frequently cited were: evening or weekend courses rather than weekday, more flexibility in the scheduling of sessions, shorter courses, courses closer to home and a range of issues relating to either the health service or health care practitioners. Only two people suggested online or written materials, which may indicate that technological solutions may not be the panacea it is currently purported to be [31] at least for this middle-aged sample. If the changes suggested by respondents were implemented, 241 (72%) reported that they would attend. It is also worth noting however, that 61 people (18%) admitted that they could not identify anything that would encourage or enable them to attend SDE. 4.2. Conclusions This is the first study to ask a large group of people with type 2 diabetes their reasons for choosing not to attend SDE and to do so we engaged with a wide range of people who had already disengaged from diabetes education. The perception that diabetes is not a serious disease, coupled with lack of knowledge of potential complications, is a significant primary barrier to attending education. Many people who feel well believe that they are indeed well and therefore may not see the point of attending education. It seems that diabetes specialist nurses and GPs are the primary gatekeepers and champions of education in type 2 diabetes. Efforts to encourage attendance, and to understand nonattendance therefore falls primarily on these two professional groups. Some participants believe they already know enough about diabetes and managing it (regardless of knowledge level). There were a number of people for whom SDE will never be an option and this will render them at increased risk of developing long term complications arising from diabetes. 4.3. Practice implications Some people deemed the courses too long and most of these individuals reported that they would go, or consider going, in the future if classes were shorter. However, overall the reasons given for choosing not to attend varied widely, no groups or clusters of responses were identified. It is therefore impossible to recommend a small number of issues that might be addressed to improve overall attendance rates. This problem must be considered as an individual issue and solutions generated must be based on the individual circumstances, needs and beliefs. Knowing the individual better is the first step towards understanding how to encourage them. It is reasonable to suggest that a range of educational formats would be required. A one size fits all approach is not appropriate in terms of medical treatment for diabetes, likewise different approaches; for example cooking lessons, life coaching and peer support, are required for different people. Commissioners should be encouraged to fund a range of effective options in any given locality.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
Informed consent I confirm that all patient/personal identifiers have been removed or disguised so that the patient/person(s) described are not identifiable and cannot be identified through the details of the story. Funding This research was funded by Diabetes UK. Acknowledgements We would also wish to thank all those individuals who gave their time to participate in this study. References [1] National Institute for Clinical Excellence (NICE) Guideline [NG28] Type 2 diabetes in adults: management, 2016. https://www.nice.org.uk/Guidance/ NG28. (Accessed 30 March 17). [2] The National Diabetes Audit team, Diabetes UK, NHS England’s Diabetes Team and Clinical Networks,(2016). Improving data recording. Guidance for diabetes structured education providers, GP practices and commissioners. https:// www.diabetes.org.uk/NDA-structured-education-data. (Accessed 15 October 17). [3] D. Young-Hyman, M. de Groot, F. Hill-briggs, J.S. Gonzalez, K. Hood, M. Peyrot, Psychological care for people with diabetes: a position statement of the American Diabetes Association, Diabetes Care 39 (2016) 2126–2140, doi: http://dx.doi.org/10.2337/dc16-2053. [4] M. Carey, K. Khunti, M. Davies, Structured education in diabetes: a review of the evidence, Diabetes Primary Care 14 (2012) 154–160. [5] M.J. Davies, S. Heller, T.C. Skinner, M.J. Campbell, M.E. Carey, S. Cradock, H.M. Dallosso, H. Daly, Y. Doherty, S. Eaton, C. Fox, L. Oliver, K. Rantell, G. Rayman, K. Khunti, Diabetes Education and Self Management for Ongoing and Newly Diagnosed Collaborative Effectiveness of the diabetes education and self management for ongoing and newly diagnosed (DESMOND) programme for people with newly diagnosed type 2 diabetes: cluster randomised controlled trial, Br. Med. J. 336 (7642) (2008) 491–495, doi:http://dx.doi.org/10.1136/ bmj.39474.922025. [6] T.A. Deakin, J.E. Cade, R. Williams, D.C. Greenwood, Structured patient education: the diabetes X-PERT programme makes a difference, Diabet. Med. 23 (2006) 944–954. [7] C. Chrvala, D. Scherr, R.D. Lipman, Diabetes self-management education for adults with type 2 diabetes mellitus: a systematic review of the effect on glycemic control, Patient Educ. Couns. 99 (6) (2016) 926–943, doi:http://dx. doi.org/10.1016/j.pec.2015.11.003. [8] National Diabetes Audit (NDA), 2015/16 Report 1: Care processes and treatment targets. 2017. http://content.digital.nhs.uk/catalogue/PUB23241/ nati-diab-rep1-audi-2015-16.pdf. (Accessed 30 March 17). [9] J. Creamer, M. Attridge, M. Ramsden, R. Cannings-John, K. Hawthorne, Culturally appropriate health education for type 2 diabetes in ethnic minority groups: an updated Cochrane review of randomized controlled trials, Diabet. Med. 33 (2016) 169–183. [10] R.I.G. Holt, A. Nicolucci, K. Kovacs burns, G. Lucisano, S.E. Skovlund, A. forbes, S. Kalra, E. Menendez torre, N. Munro, M. Peyrot, Correlates of psychological care strategies for people with diabetes in the second Diabetes Attitudes, Wishes and needs (DAWN 2) study, Diabet. Med. 33 (2016) 1174–1183. [11] R.M. Anderson, J.T. Fitzgerald, M.M. Funnell, The third version of the diabetes attitudes scale, Diabetes Care 21 (1998) 1403–1407.
7
[12] R.M. Anderson, J.T. Fitzgerald, L.D. Gruppen, M.M. Funnell, M.S. Oh, The diabetes empowerment scale-short form (DES-SF), Diabetes Care 26 (2003) 1641–1642. [13] J.T. Fitzgerald, R.M. Anderson, M.M.G.A. Funnell Hess, P.A. Barr, R.M. Anderson, R.G. Hiss, W.K. Davis, The reliability and validity of a brief diabetes knowledge test, Diabetes Care 21 (1998) 706–710. [14] Michigan Diabetes Research Centre, 2017. http://diabetesresearch.med.umich. edu/Tools_SurveyInstruments.php (Accessed 29 March 17). [15] L.J. Cronbach, Coefficient alpha and the internal structure of tests, Psychometrika 16 (1951) 297. [16] R.M. Anderson, M.M. Funnell, P.M. Butler, M.S. Arnold, J.T. Fitzgerald, C.C. Feste, Patient empowerment: results of a randomized controlled trial, Diabetes Care 18 (1995) 943–949. [17] A. Nicolucci, K. Kovace burns, R.I.G. Holt, G. Lucisano, S.E. Skovlund, A.M. Kokoszka Massi Benedetti, M. Peyrot, Correlates of psychological outcomes in people with diabetes: results from the second Diabetes Attitudes, Wishes and Needs (DAWN 2) study, Diabet. Med. 33 (2016) 1194–1203. [18] M. Scollan-Koliopoulos, E.A. Walker, D. Bleich, Perceived risk of amputation, emotions, and foot self-care among adults with type 2 diabetes, Diabetes Educ. (2007) 473–482, doi:http://dx.doi.org/10.1111/j. 1464–5491.2007.02180.x. [19] J. Lukie, G. Leese, R. McAlpine, C.J. MacEwen, P.S. Baines, A.D. Morris, J.D. Ellis, For the DARTS/MEMO Collaboration Fear of visual loss in patients with diabetes: results of the Prevalence of Diabetic Eye Disease in Tayside, Scotland (P-DETS) study, Diabet. Med. (2007) 1086–1092, doi:http://dx.doi.org/10.1111/ j. 1464–5491.2007.02180.x. [20] T. Rouyard, S. Kent, R. Baskerville, J. Leal, A. Gray, Perceptions of risks for diabetes-related complications in type 2 diabetes populations: a systematic review, Diabet. Med. 34 (2017) 467–477, doi:http://dx.doi.org/10.1111/ dme.13285. [21] J. Ross, F. Stevenson, C. Dack, K. Pal, C. May, S. Michie, S. Parrott, E. Murray, Evaluating the implementation of HeLP-Diabetes within NHS services: study protocol, BMC Health Serv. Res. 14 (2014) 14–51, doi:http://dx.doi.org/10.1186/ 1472-6963. [22] N. Hex, C. Bartlett, D. Wright, M. Taylor, D. Varley, Estimating the current and future costs of Type 1 and Type 2 diabetes in the UK, including direct health costs and indirect societal and productivity costs, Diabet. Med. (2012) 29, doi: http://dx.doi.org/10.1111/j. 1464–5491.2012.03698.x. [23] J. Speight, DAWN2 shines more light on the psychological burden of living with diabetes and on the correlates of quality psychological care, Diabet. Med. 33 (2016) 1172–1173, doi:http://dx.doi.org/10.1111/dme.13183/full. [24] N. Schwennesen, J.E. Henriksen, I. Willaing, Patient explanations for nonattendance at type 2 diabetes self-management education: a qualitative study, Scand. J. Caring Sci. 30 (2015) 187–192, doi:http://dx.doi.org/10.1111/ scs.12245. [25] J.S. Ruddock, M. Poindexter, T.L. Gary-Webb, E.A. Walker, N.J. davis, Innovative strategies to improve diabetes outcomes in disadvantaged populations, Diabet. Med. 33 (2016) 723–733, doi:http://dx.doi.org/10.1111/dme.13088. [26] J. Lawton, D. Rankin, How do structured education programmes work? an ethnographic investigation of the dose adjustment for normal eating (DAFNE) programme for type 1 diabetes patients in the UK, Soc. Sci. Med. 71 (3) (2010) 486–493. [27] The Health Foundation Person-centred care made simple, Health Foundation. (2014). http://www.health.org.uk/sites/health/files/ PersonCentredCareMadeSimple.pdf (Accessed 15 October 17). [28] P.M. Mommersteeg, R. Herr, F. Pouwer, R.I. Holt, A. Loerbroks, The association between diabetes and an episode of depressive symptoms in the 2002 World Health Survey: an analysis of 231,797 individuals from 47 countries, Diabet. Med. 30 (2013) e208–214, doi:http://dx.doi.org/10.1111/dme.12193. ska, M.J. Jarosz, Diabetes and depression: a [29] P. Dziemidok, M. Makara-Studzin combination of civilization and life-style diseases is more than simple problem adding – literature review, Ann. Agric. Environ. Med. 18 (2011) 318–322. [30] W. Swardfager, P. Yang, N. Herrman, K.L. Lanctot, B.R. Shah, A. Kiss, P.I. Oh, Depressive symptoms predict non-completion of a structured exercise intervention for people with Type 2 diabetes, Diabet. Med. 33 (2015) 529–536. [31] C.W. Hunt, Technology and diabetes self-management: an integrative review, World J. Diabetes (2015) 225–233, doi:http://dx.doi.org/10.4239/wjd.v6. i2.225.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
Patient Education and Counseling xxx (2017) xxx–xxx
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Research Paper
Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons Vivien Coatesa,b,* , Mary Slevinc, Marian Careyd , Paul Slatere, Mark Daviesf a
Institute of Nursing and Health Research, Ulster University, Magee campus, Londonderry BT48 7JL, United Kingdom Western Health and Social Care Trust, Altnagelvin Hospital,Glenshane Road, Londonderry BT47 6SB, United Kingdom c Institute of Nursing and Health Research, Ulster University, Cromore Road, Coleraine BT52 1SA, United Kingdom d Leicester Diabetes Centre (Air Wing), Leicester General Hospital, Gwendolen Road, Leicester LE5 4PW, United Kingdom e Institute of Nursing and Health Research, Ulster University, Shore Road, Newtownabbey, Co Antrim BT37 0QB, United Kingdom f Belfast Health and Social Care Trust, Belfast City Hospital, Lisburn Road, Belfast BT9 7AB, United Kingdom b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 2 June 2017 Received in revised form 18 October 2017 Accepted 20 October 2017
Objective: to identify the expressed reasons adults with type 2 diabetes decline structured diabetes education (SDE). Methods: cross sectional survey of 335 adults with type 2 diabetes who had declined SDE within the past two years, from across Northern Ireland and England. Standardised instruments comprising The Diabetes Attitude Scale, Diabetes Empowerment Scale (Short Form), and Diabetes Knowledge Test plus a questionnaire to elicit the reasons for declining SDE were used. Results: Mean age 57.6 years (21.1) 50.7% males, predominantly of White ethnicity (85.7%). They were most frequently invited to attend by a diabetes specialist nurse (36%), general practitioner (27%) or practice nurse (19%). Although a diversity of reasons for declining SDE were cited the most common were; ‘The course was too long’ (47.2%), ‘I have other health problems’ (41.2%) and they had other priorities (33.4%). Hierarchical cluster analysis revealed that expressed reasons for declining SDE were highly individualised. Conclusion: The wide range of reasons that impeded attendance suggests there is no simple solution that will improve attendance rates. Practice implications: In the same way that medical treatment for diabetes is becoming increasingly individualised, educational provision should be encouraged to move away from a one size fits all model. © 2017 Published by Elsevier Ireland Ltd.
Keywords: Structured education Type 2 diabetes Non-attendance
1. Introduction 1.1. Structured diabetes education The importance of people with diabetes self-managing their condition effectively on a daily basis is paramount. NICE Guidelines [1] assert that structured diabetes education (SDE) should be available for all adults with type 2 diabetes near to the time of diagnosis, with ongoing opportunities to reinforce content and review knowledge, understanding and educational needs. It is
* Corresponding author at: Institute of Nursing and Health Research, Ulster University, Magee campus, Londonderry, BT48 7JL, United Kingdom. E-mail address: [email protected] (V. Coates).
emphasised that such education is not only an integral part of diabetes management but also a quality indicator for diabetes care. The purpose of SDE is to provide ‘ . . . people with diabetes, their family and their carers with the knowledge and confidence to self-manage a long-term condition’ [2]. High quality programmes should reflect individualised care, be evidence-based, have specified aims and objectives, and follow a written structured curriculum based on theories of learning [1]. The programmes are to be delivered by suitably trained and prepared educators and must be audited to ensure that these and other quality indicators are met. This represents significant progress over the last two decades from the time when education was often provided on an opportunistic basis during routine review appointments.
https://doi.org/10.1016/j.pec.2017.10.013 0738-3991/© 2017 Published by Elsevier Ireland Ltd.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
2
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
1.2. Active self-management
2. Methods
The range of available medical treatments has expanded rapidly over the past ten years in response to increasing knowledge about optimising glycaemic control and reducing or postponing the onset of diabetes related complications. However, at the root of all diabetes care is the need for individuals to understand their role in its management and to have the knowledge, skills and motivation to become active self-managers. Our understanding and appreciation of the impact of psychosocial factors upon diabetes selfmanagement has also evolved. Effective education must include the development of attitudes and beliefs conducive to long-term self-management [3] to support and sustain individuals and their families over time.
The target population were adults, newly diagnosed or having established type 2 diabetes, who had previously declined an invitation to attend an SDE programme in the previous two years, or who had initially accepted but never attended. Diabetes nurse specialists/dietitians in the participating centres who administer SDE programmes were asked to keep records of all potential participants who met the inclusion criteria and inform them by telephone or in person about the study. The study researcher then contacted those interested in participating, provided an information leaflet and ascertained their preferred means of completing the questionnaire. Based on an annual estimated population of 6500 newly diagnosed adults with type 2 diabetes (Leicestershire and Northern Ireland (NI), the target population of those who do not engage in SDE (40%) was 2600. It was estimated that a sample size of 335 would thus be required based on a 5% margin of error and 95% confidence level. Participants were recruited between January 2014 and April 2015. Four sites from NI and five (including four Participant Identification Centres) from England participated in the study. All participants who completed a questionnaire received a £15 gift voucher as an acknowledgement of their input and because the cohort were considered to be a difficult to reach group.
1.3. Declining structured diabetes education Although the effectiveness of structured education has been demonstrated for those with type 2 diabetes [4–7] evidence also suggests that many individuals do not avail themselves of such programmes when referred [8,9]. Whilst lack of service provision and health professional training relating to education, selfmanagement and psychological support may be an issue in some areas [10] there is also a significant number of individuals who, when invited to attend a SDE programme, decline the opportunity to do so. This study was designed to explore in detail the reasons adults with type 2 diabetes choose not to engage with SDE to inform and broaden the reach of SDE from a sound evidence base. The impact of demographic variables, physical wellbeing, depression and anxiety, knowledge, and attitudes towards diabetes upon the decision to decline SDE will also be explored.
2.1. Design A quantitative survey was conducted using a structured questionnaire. Ethical approval was obtained (ID: 09/NIRO1/31) and completion of the questionnaire indicated informed consent.
Table 1 Demographic characteristics of non-attendees of SDE. All (n 335)
Gender (%)
Male Female
57.6 12.1 3.3 4.4 (0.1–30) 170 (50.7) 165 (49.3)
Marital Status (%)
Single Married/cohabiting Widowed Separated Divorced
50 (14.9) 218 (65.1) 22 (6.6) 14 (4.2) 31 (9.3)
Employment (%)
Full time Part time Carer/housewife Unemployed Education Retired Long-term sick
73 (21.8) 33 (9.9) 30 (9.0) 28 (8.4) 1 (0.3) 112 (33.4) 58 (17.3)
Ethnic origin (%)
White British White Irish Indian Caribbean Other
204 (60.9) 83 (24.8) 32 (9.6) 6 (1.8) 10 (3.0)
Treatment (%)
Diet and exercise Diet, exercise and tablets Non-insulin injections Insulin injections A combination of some or all the above
106 (31.6) 181 (54.0) 3 (0.9) 13 (3.9) 32 (9.6)
Age at time of recruitment (y) Years diagnosed (range)
Data presented as mean and SD. Other Ethnic origin; African, Pakistani, Chinese, other black/white/Asian backgrounds.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
2.2. Data gathering The questionnaire was designed to capture variables known to have an important role in patient self-management and to probe non-attendance at SDE. A booklet of standardized instruments was compiled. The instruments used were; The Diabetes Attitude Scale [11]: The Diabetes Empowerment Scale–short form [12] and the Diabetes Knowledge Test (DKT) [13]. All instruments have proven psychometric properties in international samples of people with diabetes [14]. The Diabetes Attitude Scale comprised 33 items addressing five constructs: 1) need for special training, 2) perceived seriousness of type 2 diabetes 3) value of tight control, 4) psychosocial impact of diabetes and 5) patient autonomy to assess general diabetes related attitudes and beliefs. The Diabetes Empowerment Scale- short form [12] is an eightitem questionnaire designed to measure the perceived self-efficacy of people with diabetes. The Diabetes Attitude Scale and the Diabetes Empowerment Scale were both measured on a 5-point Likert Scale (1-Strongly Disagree – 5-Strongly Agree). Scores were aggregated to mean score level. Scale reliabilities were calculated using Cronbach’s coefficient alpha, a reliability coefficient of 0.70 or higher was considered acceptable [15]. Both proved satisfactory. The Diabetes Knowledge Test included the first 14 items appropriate for people who do not use insulin. Correct answers were coded as 1 so potential scores ranged from 0 to 14. The mean results were banded to indicate differing levels of knowledge, based on our clinical judgement as follows; 0–7 poor, 8–10 moderate and 11–14 good.
3
2.3. Demographic, health, diabetes variables and reasons for nonattendance Demographic, general health and diabetes specific data were collected. In addition, a questionnaire of the most common potential reasons for declining education was included. Potential reasons were marked ‘Not an issue’, ‘Bit of an issue’ or ‘A big issue’ in respect of the decision to decline SDE. The potential reasons were identified following a multi-professional regional audit of SDE completed in 2006 to quality assure SDE programmes across N. Ireland using the NICE standards. The instruments were merged into one data gathering booklet following some modest modifications that were necessary to ensure they applied to adults in the United Kingdom (UK). For example, in the DKT questionnaire using examples of foods to which a UK rather than an American population would relate. The booklet was piloted to establish content and face validity: 138 people with newly diagnosed diabetes who had decided not to attend a diabetes education programme offered to them within the previous 12 months were sent a questionnaire. Of these, 23 were returned (17%). Thereafter five telephone interviews were conducted. Subsequently a number of changes to the layout and presentation of the booklet were made to enhance clarity prior to use in the main study. 3. Results 3.1. Profile of participants A sample of 335 people meeting the inclusion criteria were recruited to the study. The total number of potential participants
Table 2 Reasons for non-attendance at SDE. ‘Big Issue’ & ‘Bit of an Issue’ combined
Total n (%)
3 h is too long I have other health problems I had other things to sort out I don’t feel as though I need to go to a diabetes education group I didn’t have time I couldn’t get to the venue I feel able to cope on my own I have learned about diabetes from other sources I have too many appointments to go to already I didn’t really see the point I couldn’t get time off work I don’t think I would gain anything from the group I would feel embarrassed in a group I don’t understand why I was asked to go to a diabetes education group I couldn’t sort out transport I had more important things to do My doctor/nurse didn’t tell me much about diabetes education I don’t think I would understand the medical language I was too depressed to go I haven’t accepted my diabetes ‘Education’ sounds like school I had to look after my wife/husband/parent I mislaid or forgot my appointment I’m scared of thinking about diabetes My doctor/nurse seemed unenthusiastic about diabetes education It’s too soon after being diagnosed to think about it My doctor/nurse didn’t think that diabetes education was as important as my other treatment I couldn’t get anyone to look after my children
158 (47.2) 138 (41.2) 112 (33.4) 107 (31.9) 106 (31.6) 97 (29.0) 97 (29.0) 89 (26.6) 89 (26.6) 83 (24.8) 80 (23.9) 73 (21.8) 68 (20.3) 68 (20.3) 68 (20.3) 64 (19.1) 57 (17.0) 58 (17.3) 54 (16.1) 51 (15.2) 51 (15.2) 47 (14.0) 36 (10.7) 32 (9.6) 30 (9.0) 29 (8.7) 28 (8.4) 24 (7.2)
The data were analysed to explore whether or not men and women expressed different reasons for declining SDE. From the list above the following were significantly different.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
4
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
approached was 546, with 383 (70%) agreeing to participate and 335 (61%) subsequently returning a completed booklet. The demographic profile of the participants (Table 1) illustrates that a broad cross section of the population in terms of age, marital status and employment were included. However, despite aiming to include those from diverse backgrounds, the sample comprised 85.7% (n = 287) White individuals. Few participants came from minority ethnic backgrounds, with the largest sub-group being of Indian origin, 9.6% (n = 32). The inclusion, of a power calculation and its achievement, with a high response rate make generalisability of the findings to White individuals in the UK population possible. 3.2. SDE programme offered and by whom Across the nine sites involved in the research the DESMOND course was the most frequently offered SDE programme (247, 73.7%). Other programmes offered included X-PERT, SET 2, DAY (Diabetes and You) (42, 12.5% collectively) and a bespoke SDE programme (46, 13.7%). Over a third (36%) were invited to attend by a diabetes specialist nurse with general practitioners and practice nurses inviting 27% and 19% respectively. Other health care professionals reported to have initiated the invitation included: dietitian 5%, hospital doctor 4%, and 9% by a range of others or not specified. The majority (256, 76%) of respondents reported that sufficient information was provided about the SDE when the invitation was made. 3.3. Other health problems Complications arising from diabetes were reported by 157 (47%) participants: 36% (n = 119) reported one to two complications; and 11% (n = 38) reported three or more complications. The most frequently cited diabetes related complications were problems with eyes (90, 27%), followed by problems with feet (78, 23%), depression/anxiety (73, 22%), heart (32, 10%) and kidneys (25, 8%). Health problems, unrelated to diabetes, during the previous 12 months were also reported. Responses showed a wide range of conditions, such as; hypertension 187 (56%), arthritic disorders 149 (45%) and lung problems 67 (20%). In total, 136 (41%) respondents reported either none or one co-morbidity, 167 (50%) reported 2–4 while 32 (10%) reported 5 or more. Of the 133 people who reported a condition under the heading of ‘Other’, depression/anxiety were the conditions most commonly identified (104, 78%, [ie: 31% of entire sample]).
to the venue and also that they are more impeded by their caring roles than men. 3.5. A lack of clusters In order to determine whether or not themes emerged amongst the participants, a cluster analysis was undertaken. All 28 reasons for not attending self-management education classes were collapsed to provide an issue/not an issue dichotomy. The reasons were examined using a hierarchical cluster analysis (Squared Euclidian Distance) to identify potential clustering in responses. Examination of the findings show limited clusters as indicated by large distances between items and/or very small positive responses. A reduced number of the five main reasons for not attending also failed to identify satisfactory clusters. The failure to identify clusters indicates the individuality of participants’ expressed reasons for choosing not to attend SDE and presents difficulties when developing interventions to redress the issues. 3.6. Diabetes knowledge test The abridged DKT comprising 14 items generated a mean score for all participants of 8.59 (SD 2.34) There was no significant difference in mean results between males 8.64 (SD 2.4) and females 8.55 (SD 2.2). 3.7. Diabetes attitude scale (DAS) A higher score indicated a more positive attitude to diabetes. The mean score for all participants was 3.75 (SD 0.32), with no significant differences in scores between males 3.75 (SD 0.33) and females 3.75 (SD 0.31). When the DAS is broken down into five subscales; 1) need for special training, 2) seriousness of type 2 diabetes, 3) value of tight control, 4) psychosocial impact of DM and 5) patient autonomy, and the means examined (Table 4). The sub-scale that participants most strongly agreed with was need for special training 4.12 (SD 0.52). This was followed by value of tight control 3.82 (SD 0.56), seriousness of type 2 diabetes 3.79 SD 0.60), patient autonomy 3.59 (SD 0.49) and psychosocial impact of DM 3.58 (SD 0.63). These scores are all relatively positive. Overall the respondents believed that special training was important, they agreed that it was important to keep blood glucose near normal, that diabetes was a serious condition, that the person living with diabetes is the one who should make the daily decisions about its management and that they did not feel the condition had a negative psychosocial impact on them.
3.4. Reasons why SDE was declined 3.8. Diabetes empowerment scale (DES) short form The central focus of the survey was to explore why those with diabetes declined SDE. In the questionnaire 28 reasons were listed with three response options offered. The respondents ticked all that applied to them. The responses to ‘Big issue’ and ‘Bit of an issue’ combined are shown in descending order in Table 2. The results demonstrate a wide diversity of reasons why SDE was declined. Results from Table 3 suggest that women are less independent regarding transport and therefore have more problems in getting
A higher score indicated more perceived empowerment. The mean score for all participants was 3.81 (SD 0.61). There were no statistical differences observed between genders, with mean empowerment in males 3.85 (SD 0.59) and females 3.77 (SD 0.62). Further analysis (Table 5) illustrates that younger people with type 2 diabetes were significantly more knowledgeable than older persons. Those with more positive attitudes to their diabetes
Table 3 Reasons for non-attendance at SDE and differences between gender. (Big issue and bit of an issue combined)
I couldn’t get to the venue I couldn’t sort out transport I had to look after my wife/husband/parent a
Total n (%)
Male n (%)
Female n (%)
P value
97 (29.0) 68 (20.3) 47 (14.0)
25 (14.7) 17 (10.0) 16 (9.4)
72 (43.6) 51 (30.9) 31 (18.8)
<0.001a <0.001a 0.014a
Significant differences between males (n 170) and females (n 165) were obtained by Chi-square with Bonferroni correction. P values of <0.002 are shown.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
5
Table 4 Diabetes Attitude, Empowerment and Knowledge Scales. Range Poor – Good
Number of items
Result (n = 335)
Diabetes Attitude Scale - Need for special training - Seriousness of NIDDM - Value of tight control - Psychosocial impact of DM - Patient autonomy
1–5 1–5 1–5 1–5 1–5 1–5
33 5 7 7 6 8
3.75 (0.32) 4.12 (0.52) 3.79 (0.60) 3.80 (0.56) 3.57 (0.63) 3.59 (0.49)
Diabetes Empowerment Scale
1–5
8
3.81 (0.61)
Diabetes Knowledge Test
Minimum – 3
Maximum scores 14
8.59 (2.34)
Values presented as mean and standard deviation.
Table 5 Age and years diagnosed split by tertiles of diabetes knowledge scores.
Age (years) Years diagnosed DES DAS - Need for special training - Seriousness of NIDDM - Value of tight control - Psychosocial impact of DM - Patient autonomy
Poor
Moderate
Good
p
58.9 (10.8)a 3.5 (4.5) 3.82 (0.7) 3.70 (0.3)a 4.15 (0.5) 3.67 (0.6)a 3.74 (0.6)a 3.54 (0.6) 3.62 (0.5)
59.5 (12.6)a 2.6 (3.6) 3.78 (0.5) 3.72 (0.3)a 4.08 (0.5) 3.76 (0.6)a 3.79 (0.5)a 3.68 (0.6) 3.52 (0.5)
54.6 (12.3)b 3.6 (4.9) 3.84 (0.5) 3.82 (0.3)b 4.13 (0.5) 3.94 (0.6)b 3.96 (0.5)b 3.59 (0.6) 3.62 (0.4)
0.004* 0.141 0.801 0.004* 0.554 0.001* <0.001* 0.847 0.242
DES, Diabetes Empowerment Scale; DAS, Diabetes Attitude Scale. Values are presented as mean (SD). Test score poor 7 correct answers, Test score moderate 8– 10 correct answers, Test score good 11 correct answers. a,b different superscript letters in a row indicate significant difference between groups (Tukey Post-Hoc tests P < 0.05). * Significant difference between knowledge test groups (one way Anova, P < 0.05).
(indicated by a higher score on the DAS) were more knowledgeable, as were those who took their diabetes more seriously and those who acknowledged the value of tight control. 3.9. What would you change? Participants were invited to respond, in free text, to the question ‘If we could change one thing about diabetes education to encourage you to take part, what would it be?’. The five most frequently mentioned responses were: ‘Nothing would encourage me to go’ 99 (29.6%), ‘Shorter courses’, 60 (17.9%), ‘Evening/ weekend/flexible sessions’, 58 (17.3%); ‘Health service or health care practitioner related’, 55 (16.4%) and courses delivered closer to home, 32 (9.6%). Online/Skype or more written information was only suggested by five (1.5%) people. Respondents were then asked if the ‘one thing’ they had suggested were to be changed would they consider attending SDE and 241 (72%) reported that they would do so. 4. Discussion and conclusion 4.1. Discussion When exploring the reasons why SDE was declined, an obvious consideration is that such individuals were already sufficiently knowledgeable. Therefore, assessment of knowledge was an important part of this study. Out of a maximum score of 14 the mean was 8.59. Bearing in mind that the questions posed covered topics essential to diabetes management such as diet, testing blood
glucose levels and the effect of exercise on blood glucose levels, it can be seen that there was a clear lack of knowledge relevant to basic self-management of diabetes. While knowledge alone is unlikely to ensure good self-management [3], a lack of knowledge increases the likelihood of poor control. When coupled with a lack of symptoms, poor awareness of the consequences of diabetes and its nature as a progressive disease, it may indicate a false sense of security in people at high risk of developing complications. It is concluded that many of those who participated in this survey could have benefited from attending the SDE programme to which they were invited. Empowerment is an important component of self-management in as much as it provides individuals with opportunities to achieve greater control over their own decisions and practices affecting their health. It has been shown to have a positive impact upon glycaemia [16] and both knowledge and empowerment contribute to improved wellbeing [17]. The mean score from this cohort was 3.81 (SD 0.61, range 0 5). Therefore despite knowledge deficits and the onset of complications arising from diabetes this sample mostly felt empowered to manage their diabetes. This may be one of the reasons why they declined SDE. However, while this independence might make sense to the person with diabetes, unawareness of their own lack of knowledge about the consequences of diabetes, as mentioned above, may put them at risk. A case of ‘you don’t know what you don’t know’. The need for a good understanding of the management of diabetes is further emphasised when considering the number of individuals reporting a complication arising from their diabetes. Although assessed by self-report rather than from case note review (and therefore open to some error) it was reported that 157 (47%) respondents had already developed at least one diabetes complication. It is known that individuals fear the complications of diabetes [18,19], yet the respondents were still not sufficiently motivated to attend SDE. Rouyand et al. [20] concluded those with type 2 diabetes tend to have a low risk awareness for the development of diabetes-related complications. They note that: ‘Ensuring that people have accurate perceptions of their risks for complications is, indeed, a prerequisite for the effective management of the condition’ (p475). It should also be noted that the mean age at recruitment was 57.6 (SD 12.1) years, indicating that this was a middle aged, rather than an elderly, cohort and as such the development of complications carries an even greater threat to future health. To address the main aim of this study (to identify the reasons why people with type 2 diabetes declined to engage with SDE) participants were asked to consider why they declined to attend from a list of 28 items. Table 2 shows that the most frequently cited response was ‘3 hours is too long’. DESMOND was the most
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
6
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
commonly offered programme and lasts for 6 h, often divided between two 3 h sessions [5]. Given the complexity of managing diabetes, and preparing individuals for a lifelong commitment, 6 h may not seem excessive but for these individuals it was a barrier. The options then are to modify timing or mode of delivery of the programme (eg HeLP-Diabetes, [21]). Although commissioning more programmes would require additional funding, given the costs associated with managing the long term complications of diabetes [22] investing in self-management education should be seen as worthwhile. If we then consider the other reasons that were given by at least a quarter of the respondents it can be seen that perceived lack of importance was an issue (‘I had other things to sort out’ [112,33%], ‘I didn’t have time’ [106 32%] ‘I didn’t really see the point’ [83,25%]). Coexisting health problems presented a barrier for many [138,41%] resulting in other appointments that competed for their attention [89,27%]. There were also those who felt they had learned enough from other sources [89,27%]. These reasons suggest that a concerted effort is required to promote the importance of attending the programmes [23]. Individuals need to be made aware of the knowledge and skills they may be lacking. The enduring perception that diabetes is a ‘mild condition’ that they do not need to prioritise above other competing demands is still a deterrent for some. ‘I couldn’t get to the venue’ [97,29%] is a somewhat surprising reason. Assuming that management of type 2 diabetes tends to be community based, SDE programmes would be more likely to be offered locally. Lack of enthusiasm of referrers [30,29%], inability to get child care [24,7.2%], and expressed embarrassment about taking part in a group [68,20.3%] suggests that despite the value of a structured programme, a substantial number of individuals feel unable to commit to current SDE provision. For these people, a more individualised appraisal of need is required [3]. However, apart from the more commonly cited reasons discussed above, there was a very wide range of other barriers that prevented individuals from attending SDE. Cluster analysis was used to identify themes and predictors but none were isolated. This suggests that there will be no single solution to enhancing attendance at SDE; rather a range of options will be required to offer a more individualised approach for those for whom a particular SDE programme does not appeal. Schwennesen et al. [24] also concluded that a wide range of barriers, spanning both individual and organisational factors prevent attendance at selfmanagement education for those with type 2 diabetes. In other areas of diabetes management, it has also been recognised that a range of innovative options may be required [25,1]. Why therefore should education be any different? The theoretical basis for SDE programmes is varied. For example the DESMOND programme (offered to 73.7% of participants) is based on three psychological theories of learning plus an overall philosophy of patient empowerment [5] and yet the ways in which the programmes influence self-management remain elusive [26]. These results emphasise the need for person centred provision, in which the guiding principle is to enable individuals to manage their own health effectively. However, while tailoring provision to the needs of the individual might seem rather obvious for any form of health care the Health Foundation [27], emphasises that ‘it is not standard practice’ (p3). The issue of depression and anxiety as a barrier to attendance should not be overlooked. Almost a quarter of the sample reported significant psychological symptomatology secondary to their diabetes and of the 133 people who reported an ‘other’ health condition’, depression/anxiety were identified by 104, nearly one third of the sample. There is a growing literature regarding the incidence and impact of depression in those with diabetes [28] with depression occurring in approximately 30% of them [29]. For
these individuals it may be necessary to treat the depression prior to them being able to attend SDE. Swardfager et al. [30] report that even mild depression ‘posed a significant barrier to completion’ of an exercise programme. Holt et al. [10] report that, despite high levels of clinically significant depression, psychological care and co-ordination with mental health services was an often neglected area. Conversely diabetes education was associated with better psychological wellbeing while barriers to education were associated with worse psychological outcomes [17]. When asked to suggest one thing that might be changed to enable them to attend SDE, a wide range of solutions were offered. The most frequently cited were: evening or weekend courses rather than weekday, more flexibility in the scheduling of sessions, shorter courses, courses closer to home and a range of issues relating to either the health service or health care practitioners. Only two people suggested online or written materials, which may indicate that technological solutions may not be the panacea it is currently purported to be [31] at least for this middle-aged sample. If the changes suggested by respondents were implemented, 241 (72%) reported that they would attend. It is also worth noting however, that 61 people (18%) admitted that they could not identify anything that would encourage or enable them to attend SDE. 4.2. Conclusions This is the first study to ask a large group of people with type 2 diabetes their reasons for choosing not to attend SDE and to do so we engaged with a wide range of people who had already disengaged from diabetes education. The perception that diabetes is not a serious disease, coupled with lack of knowledge of potential complications, is a significant primary barrier to attending education. Many people who feel well believe that they are indeed well and therefore may not see the point of attending education. It seems that diabetes specialist nurses and GPs are the primary gatekeepers and champions of education in type 2 diabetes. Efforts to encourage attendance, and to understand nonattendance therefore falls primarily on these two professional groups. Some participants believe they already know enough about diabetes and managing it (regardless of knowledge level). There were a number of people for whom SDE will never be an option and this will render them at increased risk of developing long term complications arising from diabetes. 4.3. Practice implications Some people deemed the courses too long and most of these individuals reported that they would go, or consider going, in the future if classes were shorter. However, overall the reasons given for choosing not to attend varied widely, no groups or clusters of responses were identified. It is therefore impossible to recommend a small number of issues that might be addressed to improve overall attendance rates. This problem must be considered as an individual issue and solutions generated must be based on the individual circumstances, needs and beliefs. Knowing the individual better is the first step towards understanding how to encourage them. It is reasonable to suggest that a range of educational formats would be required. A one size fits all approach is not appropriate in terms of medical treatment for diabetes, likewise different approaches; for example cooking lessons, life coaching and peer support, are required for different people. Commissioners should be encouraged to fund a range of effective options in any given locality.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013
G Model PEC 5814 No. of Pages 7
V. Coates et al. / Patient Education and Counseling xxx (2017) xxx–xxx
Informed consent I confirm that all patient/personal identifiers have been removed or disguised so that the patient/person(s) described are not identifiable and cannot be identified through the details of the story. Funding This research was funded by Diabetes UK. Acknowledgements We would also wish to thank all those individuals who gave their time to participate in this study. References [1] National Institute for Clinical Excellence (NICE) Guideline [NG28] Type 2 diabetes in adults: management, 2016. https://www.nice.org.uk/Guidance/ NG28. (Accessed 30 March 17). [2] The National Diabetes Audit team, Diabetes UK, NHS England’s Diabetes Team and Clinical Networks,(2016). Improving data recording. Guidance for diabetes structured education providers, GP practices and commissioners. https:// www.diabetes.org.uk/NDA-structured-education-data. (Accessed 15 October 17). [3] D. Young-Hyman, M. de Groot, F. Hill-briggs, J.S. Gonzalez, K. Hood, M. Peyrot, Psychological care for people with diabetes: a position statement of the American Diabetes Association, Diabetes Care 39 (2016) 2126–2140, doi: http://dx.doi.org/10.2337/dc16-2053. [4] M. Carey, K. Khunti, M. Davies, Structured education in diabetes: a review of the evidence, Diabetes Primary Care 14 (2012) 154–160. [5] M.J. Davies, S. Heller, T.C. Skinner, M.J. Campbell, M.E. Carey, S. Cradock, H.M. Dallosso, H. Daly, Y. Doherty, S. Eaton, C. Fox, L. Oliver, K. Rantell, G. Rayman, K. Khunti, Diabetes Education and Self Management for Ongoing and Newly Diagnosed Collaborative Effectiveness of the diabetes education and self management for ongoing and newly diagnosed (DESMOND) programme for people with newly diagnosed type 2 diabetes: cluster randomised controlled trial, Br. Med. J. 336 (7642) (2008) 491–495, doi:http://dx.doi.org/10.1136/ bmj.39474.922025. [6] T.A. Deakin, J.E. Cade, R. Williams, D.C. Greenwood, Structured patient education: the diabetes X-PERT programme makes a difference, Diabet. Med. 23 (2006) 944–954. [7] C. Chrvala, D. Scherr, R.D. Lipman, Diabetes self-management education for adults with type 2 diabetes mellitus: a systematic review of the effect on glycemic control, Patient Educ. Couns. 99 (6) (2016) 926–943, doi:http://dx. doi.org/10.1016/j.pec.2015.11.003. [8] National Diabetes Audit (NDA), 2015/16 Report 1: Care processes and treatment targets. 2017. http://content.digital.nhs.uk/catalogue/PUB23241/ nati-diab-rep1-audi-2015-16.pdf. (Accessed 30 March 17). [9] J. Creamer, M. Attridge, M. Ramsden, R. Cannings-John, K. Hawthorne, Culturally appropriate health education for type 2 diabetes in ethnic minority groups: an updated Cochrane review of randomized controlled trials, Diabet. Med. 33 (2016) 169–183. [10] R.I.G. Holt, A. Nicolucci, K. Kovacs burns, G. Lucisano, S.E. Skovlund, A. forbes, S. Kalra, E. Menendez torre, N. Munro, M. Peyrot, Correlates of psychological care strategies for people with diabetes in the second Diabetes Attitudes, Wishes and needs (DAWN 2) study, Diabet. Med. 33 (2016) 1174–1183. [11] R.M. Anderson, J.T. Fitzgerald, M.M. Funnell, The third version of the diabetes attitudes scale, Diabetes Care 21 (1998) 1403–1407.
7
[12] R.M. Anderson, J.T. Fitzgerald, L.D. Gruppen, M.M. Funnell, M.S. Oh, The diabetes empowerment scale-short form (DES-SF), Diabetes Care 26 (2003) 1641–1642. [13] J.T. Fitzgerald, R.M. Anderson, M.M.G.A. Funnell Hess, P.A. Barr, R.M. Anderson, R.G. Hiss, W.K. Davis, The reliability and validity of a brief diabetes knowledge test, Diabetes Care 21 (1998) 706–710. [14] Michigan Diabetes Research Centre, 2017. http://diabetesresearch.med.umich. edu/Tools_SurveyInstruments.php (Accessed 29 March 17). [15] L.J. Cronbach, Coefficient alpha and the internal structure of tests, Psychometrika 16 (1951) 297. [16] R.M. Anderson, M.M. Funnell, P.M. Butler, M.S. Arnold, J.T. Fitzgerald, C.C. Feste, Patient empowerment: results of a randomized controlled trial, Diabetes Care 18 (1995) 943–949. [17] A. Nicolucci, K. Kovace burns, R.I.G. Holt, G. Lucisano, S.E. Skovlund, A.M. Kokoszka Massi Benedetti, M. Peyrot, Correlates of psychological outcomes in people with diabetes: results from the second Diabetes Attitudes, Wishes and Needs (DAWN 2) study, Diabet. Med. 33 (2016) 1194–1203. [18] M. Scollan-Koliopoulos, E.A. Walker, D. Bleich, Perceived risk of amputation, emotions, and foot self-care among adults with type 2 diabetes, Diabetes Educ. (2007) 473–482, doi:http://dx.doi.org/10.1111/j. 1464–5491.2007.02180.x. [19] J. Lukie, G. Leese, R. McAlpine, C.J. MacEwen, P.S. Baines, A.D. Morris, J.D. Ellis, For the DARTS/MEMO Collaboration Fear of visual loss in patients with diabetes: results of the Prevalence of Diabetic Eye Disease in Tayside, Scotland (P-DETS) study, Diabet. Med. (2007) 1086–1092, doi:http://dx.doi.org/10.1111/ j. 1464–5491.2007.02180.x. [20] T. Rouyard, S. Kent, R. Baskerville, J. Leal, A. Gray, Perceptions of risks for diabetes-related complications in type 2 diabetes populations: a systematic review, Diabet. Med. 34 (2017) 467–477, doi:http://dx.doi.org/10.1111/ dme.13285. [21] J. Ross, F. Stevenson, C. Dack, K. Pal, C. May, S. Michie, S. Parrott, E. Murray, Evaluating the implementation of HeLP-Diabetes within NHS services: study protocol, BMC Health Serv. Res. 14 (2014) 14–51, doi:http://dx.doi.org/10.1186/ 1472-6963. [22] N. Hex, C. Bartlett, D. Wright, M. Taylor, D. Varley, Estimating the current and future costs of Type 1 and Type 2 diabetes in the UK, including direct health costs and indirect societal and productivity costs, Diabet. Med. (2012) 29, doi: http://dx.doi.org/10.1111/j. 1464–5491.2012.03698.x. [23] J. Speight, DAWN2 shines more light on the psychological burden of living with diabetes and on the correlates of quality psychological care, Diabet. Med. 33 (2016) 1172–1173, doi:http://dx.doi.org/10.1111/dme.13183/full. [24] N. Schwennesen, J.E. Henriksen, I. Willaing, Patient explanations for nonattendance at type 2 diabetes self-management education: a qualitative study, Scand. J. Caring Sci. 30 (2015) 187–192, doi:http://dx.doi.org/10.1111/ scs.12245. [25] J.S. Ruddock, M. Poindexter, T.L. Gary-Webb, E.A. Walker, N.J. davis, Innovative strategies to improve diabetes outcomes in disadvantaged populations, Diabet. Med. 33 (2016) 723–733, doi:http://dx.doi.org/10.1111/dme.13088. [26] J. Lawton, D. Rankin, How do structured education programmes work? an ethnographic investigation of the dose adjustment for normal eating (DAFNE) programme for type 1 diabetes patients in the UK, Soc. Sci. Med. 71 (3) (2010) 486–493. [27] The Health Foundation Person-centred care made simple, Health Foundation. (2014). http://www.health.org.uk/sites/health/files/ PersonCentredCareMadeSimple.pdf (Accessed 15 October 17). [28] P.M. Mommersteeg, R. Herr, F. Pouwer, R.I. Holt, A. Loerbroks, The association between diabetes and an episode of depressive symptoms in the 2002 World Health Survey: an analysis of 231,797 individuals from 47 countries, Diabet. Med. 30 (2013) e208–214, doi:http://dx.doi.org/10.1111/dme.12193. ska, M.J. Jarosz, Diabetes and depression: a [29] P. Dziemidok, M. Makara-Studzin combination of civilization and life-style diseases is more than simple problem adding – literature review, Ann. Agric. Environ. Med. 18 (2011) 318–322. [30] W. Swardfager, P. Yang, N. Herrman, K.L. Lanctot, B.R. Shah, A. Kiss, P.I. Oh, Depressive symptoms predict non-completion of a structured exercise intervention for people with Type 2 diabetes, Diabet. Med. 33 (2015) 529–536. [31] C.W. Hunt, Technology and diabetes self-management: an integrative review, World J. Diabetes (2015) 225–233, doi:http://dx.doi.org/10.4239/wjd.v6. i2.225.
Please cite this article in press as: V. Coates, et al., Declining structured diabetes education in those with type 2 diabetes: A plethora of individual and organisational reasons, Patient Educ Couns (2017), https://doi.org/10.1016/j.pec.2017.10.013