Adolescents with Poorly Controlled Type 1 Diabetes can Benefit from Coaching: A Case Report and Discussion Jette Ammentorp, Jane Thomsen & Poul-Erik Kofoed Journal of Clinical Psychology in Medical Settings ISSN 1068-9583 J Clin Psychol Med Settings DOI 10.1007/s10880-013-9374-z 1 23 Your article is protected by copyright and all rights are held exclusively by Springer Science +Business Media New York. This e-offprint is for personal use only and shall not be selfarchived in electronic repositories. If you wish to self-archive your article, please use the accepted manuscript version for posting on your own website. You may further deposit the accepted manuscript version in any repository, provided it is only made publicly available 12 months after official publication or later and provided acknowledgement is given to the original source of publication and a link is inserted to the published article on Springer's website. The link must be accompanied by the following text: "The final publication is available at link.springer.com”. 1 23 Author's personal copy J Clin Psychol Med Settings DOI 10.1007/s10880-013-9374-z Adolescents with Poorly Controlled Type 1 Diabetes can Benefit from Coaching: A Case Report and Discussion Jette Ammentorp • Jane Thomsen Poul-Erik Kofoed • Springer Science+Business Media New York 2013 Abstract Traditional interventions aimed at improving patient self-management and at motivating the patients to change behaviour seem to be insufficient in adolescents with very high HbA1c. In this paper we present a case consisting of nine adolescents with poorly controlled diabetes type 1. They had previously shown continuously high levels of HbA1c for 2 years despite intensive follow-up and were therefore invited to participate in a coaching program. The coaching program was conducted by professional certified coaches and consisted of two group and eight individual coaching sessions. After completing the coaching sessions, HbA1c had decreased significantly in six out of nine of the adolescents. The participants were interviewed twice following the coaching sessions. All participants reported that they found the sessions very rewarding, and several explained that they now saw themselves differently and had gained more self-esteem and more energy. Keywords Coaching Intervention studies Diabetes Mellitus Type 1 Adolescent Health behaviour J. Ammentorp P.-E. Kofoed Health Services Research Unit, Lillebaelt Hospital/IRS University of Southern Denmark, Kolding, Denmark J. Ammentorp (&) Health Services Research Unit, Vejle Hospital, Kabbeltoft 25, Bygning S100, 7100 Vejle, Denmark e-mail: [email protected] J. Thomsen P.-E. Kofoed Department of Paediatrics, Kolding Hospital, Kolding, Denmark For many teenagers adolescence is a time with major challenges of a social and personal nature, and for an adolescent with type 1 diabetes, it also involves balancing several extra components such as diet, medication and clinical control (Lehmkuhl et al., 2009). Living with type 1 diabetes requires that the adolescent every day has to take decisions based on conflicting interests and emotions (Spencer, Cooper, & Milton, 2010). In order to cope adolescents need not only medical treatment and education but also psychosocial care (Anderson, 2009). An increase in the prevalence of diabetes type 1 has been seen in Europe during recent years, and in Denmark, the annual increase in childhood diabetes has been found to be 3.4 % (Svensson, Lyngaae-Jørgensen, Carstensen, Simonsen, & Mortensen, 2009). Type 1 diabetes is an autoimmune disease in which the insulin producing cells in the pancreas have been destroyed requiring the patients to be treated with insulin. The insulin is given as basal insulin ensuring a low level of insulin to be present continuously, and as bolus insulin, which is needed for all meals and whenever the blood glucose level is higher than desired. The insulin is actively administered by the patient either using an insulin pump or a special insulin pen. Furthermore, the patients should measure their blood glucose at least four times a day to ensure an acceptable level and count the carbohydrates they intake to administer a dosage for that as well. An estimate of the metabolic control during approximately the past six weeks can be obtained by measuring the HbA1c level of the patients as it correlates with the blood glucose levels during this period. Most diabetes centres aim at an HbA1c level of less than 7.5 % in children and adolescents, and a level of less than 7.0 % if it seems realistic for the individual patient. The importance of a good metabolic control is indicated by findings showing 123 Author's personal copy J Clin Psychol Med Settings that, for each 0.9 % decrease in HbA1c (such as from 9.0 to 8.1 %), there is a 39 % reduction in the risk of developing retinopathy (The writing team for the diabetes control and complications trial, 2002). It has been demonstrated that there is an association between adherence to diabetes treatment regimens and metabolic control (Hood, Peterson, Rohan, & Drotar, 2009), and that an acceptable metabolic control can be achieved for many children and adolescents by intensive clinical follow-up (Kofoed, Pedersen, & Thomsen, 2008; White et al., 2001). However, for patients with very high HbA1c levels, the effect of such interventions seems to be insignificant (Benhamou et al., 2007; Kofoed et al., 2008, 2010). Therefore, improving patient self-management and motivating patients to change behaviour is one of the main challenges. Self-efficacy, defined as one‘s belief about own capacity to manage a specific task (Bandura, 1977), contributes significantly to motivation and attainment. By influencing the choices, goals, emotional reactions, effort and coping of the individual person, self-efficacy has been found to be a strong predictor for behavior (Bandura, 1977; Gist & Michell, 1992). Among young adults with type 1 diabetes self-efficacy has been found to be a predictor of HbA1c and an important factor for management of self-care practice and physiological outcomes (Johnston-Brooks, Lewis, & Garg, 2002). Findings from a study including patients with type 2 diabetes indicate that social support and self-reliance in living with diabetes are the main predictors for self-management (Whittemore, D’Eramo, & Grey, 2005). Coaching Coaching is a method that has proven to be very useful to increase personal insight, and to shape and reinforce desired behaviour (Peterson, 2006). In a review about strategies for improving the outcomes of diabetic patients coaching has been suggested as a supplemental method of treatment (Hayes, McCahon, Panahi, Hamre, & Pohlman, 2008; Koenigsberg, Bartlett, & Cramer, 2004). Coaching has developed from a wide range of disciplines, and is based on a broad academic knowledge including cognitive and behavioral psychology, social science, positive psychology, organizational change and development. There is no precise definition of coaching, but it has been described as a method to ‘‘unlock a person’s potential to maximise their own performance’’ (Grant & Stober, 2006), to encourage patients to acknowledge their creativity, and to find their own unique solutions by focusing on the present and by being goal-oriented (Bluckert, 2005; Driscoll & Cooper, 2005; Quirk et al., 2008). 123 Studies that have examined the impact of coaching in adults with type 2 diabetes, have demonstrated an improvement in HbA1c, lipid levels and body mass index (Bray, Turpin, Jungkind, & Heuser, 2008; Sacco, Morrison, & Malone, 2004, Sacco, Malone, Morrison, Friedman, & Wells, 2009; Whittemore, Chase, Mandle, & Roy, 2001, Whittemore, Melkus, Sullivan, & Grey, 2004; Wolever et al., 2010). After five individualized coaching sessions and two follow up calls, Whittemore et al. showed better self-management, less diabetes related distress and better integration of the diabetes into daily life (Whittemore et al., 2004). In another study where telephone coaching alone was used, the frequency of exercise increased significantly, diet was improved and diabetes medical symptoms and depressive symptoms were reduced. HbA1c was numerically, but not statistical significantly reduced (Sacco et al., 2009). Furthermore the study showed that the participants’ self-efficacy and awareness of self-care goals mediated the effect of the coaching (Sacco et al., 2009). In a study including both patients with type 1 and type 2 diabetes the patients who were engaged in a lifecoach program were less likely to experience poor metabolic control; however, only 2.6 % had type 1 diabetes (Bray et al., 2008). Only two studies about coaching have targeted patients with type 1 diabetes. A pilot study investigating a brief telephone intervention showed positive preliminary results (Sacco et al., 2004), and a study offering coaching to 1,117 adult patients with both type 1 and type 2 diabetes showed significant improvements in key diabetes indicators. For example, 40 % of the patients were less likely to experience poor control as evaluated by HbA1c (Bray et al., 2008). Clinical Example We present a case consisting of nine adolescents with poorly controlled diabetes; six females and three males between 16 and 19 years of age and with an average duration of diabetes of 9.7 years (6–15). For the past 2 years they had had continuously high levels of HbA1c despite intensive follow-up consisting of scheduled visits every 6 weeks. Two years before the intervention their mean HbA1c was 10.6 (7.7–14.0) and one year before their mean HbA1c was 11.5 (9.8–13.9). Our aim was to reduce the HbA1c by more than 2 % for 25 % of the adolescents for the intervention to be considered satisfactory. The nine adolescents were invited to participate in a coaching program as a supplement to their usual treatment and all of them accepted the invitation. Four attended all coaching sessions, two attended all but one session and three attended all but two sessions (attendance rate 91 %). Author's personal copy J Clin Psychol Med Settings Coaching Program coaching process they did not communicate with the diabetes team. The coaching sessions were conducted by three professional certified coaches. They were not a part of the health team, but were hired specifically for the project and were paid by project funds. The aim of the coaching sessions was to motivate the patients to take action, to make changes and to achieve goals that were congruent with their life situation. The coaching program started and ended by group coaching sessions lasting 4 h in which the nine participants and the three coaches participated. During the program the adolescents were offered five individual face to face coaching sessions lasting approximately one and a half hours and three telephone coaching sessions. The sessions took place outside the hospital in hired meeting facilities suitable for the purpose. The coaching was based on a co-active coaching model: (Whitworth, Kimsey-House, Kimsey-House, & Sandahl, 2007). It is a model in which the coach is described as a ‘‘change agent’’ that chooses the direction and the methods that best serve the client. The cornerstones of the co-active coaching model are: (1) the coaching addresses the client’s whole life; (2) the agenda is given by the client and not by the coach and finally; (3) the coach must sense what is important and be able to change course by shifting currents and themes during coaching sessions (Whitworth et al., 2007). The approach in ‘Co-active coaching’ is very similar to ‘Life Coaching’ (Williams & Davis, 2007), a method that is also based on the assumption that the issues most important for the client are self-identified and prioritized, and therefore it is the client that chooses the topic, the action, and the results that they want to achieve. To guide the adolescents through the process, the coaches made a Pro-Active Plan for each of them. The plan included different tools that the adolescents could use as homework e.g. ‘‘The wheel of life’’ by which different aspects of life can be rated, templates for writing down barriers, resources and their values, goals, milestones and action plans. Before the study started, the coaches were introduced to the most common medical terms used in diabetic care. They did not have access to any information from the patients’ files and were not in other ways provided with information about the adolescents. During the Follow-Up HbA1c was routinely measured at all visits at the diabetes clinic. No differences were found between the mean HbA1c level at the start of the coaching sessions and the levels measured 24, 12, and 6 months prior to inclusion, whereas a significant decrease was found at the end of the intervention and 1 year after enrolment (Table 1). From March to October 2010 (the intervention period) three patients had a reduction in HbA1c of C2.0 %, three patients had a reduction between 1.0 and 1.9 %, whereas three patients had unchanged values. From March 2010 to March 2011 the corresponding numbers were two, two, and five patients, respectively. One and a half years after the intervention two patients had moved, but at the last visit they both had high HbA1c values. Of the remaining seven patients, two maintained a reduction in HbA1c C 2.0 % and 1 of C1.0 %, while the last four had HbA1c values equalling the values at the starting point. The participants were interviewed twice to get an indepth knowledge of what it is like to be coached (Kvale, 1997). The first interview took place after three or four coaching sessions and the last between one and three months after having finished the coaching. The interviews were conducted by a member of the project group not known to the participants, and were based on a semistructured interview guide inspired by the interview guide developed by Stelter (2010). The participants were asked to tell, how they experienced the coaching, and to describe any possible changes in their thoughts, their behaviour and their feelings. At the second interview the same questions were asked supplemented by questions about the method and the experienced self-image before and after the coaching. Data were tape-recorded, transcribed verbatim, and analyzed using the meaning condensation method, as introduced by Van Manen (1990). All but one of the participants were interviewed twice, and the main theme describing their experiences of the coaching elucidated by the interviews was identified as ‘‘Seeing things from a new perspective’’. All but one Table 1 The mean HbA1c for the nine participants measured before, during and after the coaching, which took place from March to September 2010 Mean HbA1c (%) p value* March 2008 March 2009 October 2009 March 2010 October 2010 March 2011 10.858 10.644 11.522 11.089 9.961 10.278 0.77 0.56 0.49 0.03 0.047 * Paired t test 123 Author's personal copy J Clin Psychol Med Settings experienced that the coaching made a difference. The experience of being seen not as a patient but as a young human being with ‘‘normal problems’’ seemed to have made the biggest impression on the participants. From these experiences elucidated in the interviews the following four sub themes were generated: ‘‘The experience of being met’’, ‘‘Looking at myself and my diabetes in a new way’’, ‘‘More self-esteem and more energy’’ and ‘‘New tools to change routines’’. Table 2 shows citations from the interviews according to the four sub themes mentioned above. In the last interview the participants were asked to evaluate the coaching process and the different methods used. All participants found that the group sessions were very inspiring. In general they preferred face to face coaching instead of telephone coaching, and most mentioned that it was important that the coach was not one of the health care professionals from the department. It was experienced as refreshing and inspiring that the coaching took place outside the hospital. Only one found it difficult to talk with the coach and would have liked to have had another coach, while the others were very satisfied with their coaches. Dialogue About the Case Dr. Jette Ammentorp (Research Manager) The adolescents in the current study did not previously manage to obtain acceptable metabolic control in spite of a good knowledge of diabetes. The results of this Table 2 Citations from the 17 interviews divided on the four themes (N = 9) Themes Citations The experience of being met In the long run I get sick and tired of mum and dad, when they keep saying: you must, you must now…. It is sort of negative, and then you meet such a positive attitude… and you too become more motivated in the long run Well he does a god job listening to me and then guides me from there, and I really like that. And then you really present the answers yourself, and then he adds to that. And I think that that is really’ the bomb’, and also that they are as nice as they are To be looked at in a different way. The staff just sees me as an impossible one. It is different with the coach… the coach makes me look at myself differently Well, it is a whole different way of talking to people, they are sitting there following what you say, and instead of suggesting solutions on things, they are more likely to ask you for more information by asking different questions, so that you have to sit and think about what to do yourself like that Looking at myself and my diabetes in a new way Where I used to hate it …….it now becomes more and more a part of me For instance regarding diabetes you look at it in a different way so you just get things done instead of thinking about how annoying it is It has made me accept it more. For instance I found it difficult to tell people, that I had diabetes, but I feel that it has become much easier now Before I was in a bad mood and tired and did not have energy for anything at all. Now I look at things more positively and bright More self-esteem and more energy I have learned that I am not so unusual and I have gained more self-esteem, too I have become happier and can cope with a little more than I could before I am not walking around being in a bad mood anymore, I am just sort of, well not happy all the time, but kind of more fit It gives you self-esteem… much more self-esteem…I used to walk around in my own world thinking, that it was just me being stupid. Just me who could not manage and then nine others arrived being just as stupid as me, if you can say it like that I have been told by people, that I have become much happier, that I have become much nicer to look at, I smile much more, I am more accommodating towards others after I started coaching New tools to change routines It is especially the fact that I have changed my routines in the mornings. Now I measure my blood glucose and take insulin before I start working—in the dressing room Well after a conversation like that, you are much happier and are thinking that now I will go home and try it. It is always a sort of exiting feeling you take home with you Before I could not take my blood glucose at school, because I felt embarrassed that I had diabetes. I do not mind anymore. Now I just take it out in the middle of the class when that is what is needed Before it was to punish her (the mother)… I have gained good methods to talk to her and to let her into my heart 123 Author's personal copy J Clin Psychol Med Settings intervention indicate that coaching helped a part of them to improve the management of their diabetes. Let’s talk about our experiences so far and the potential role of coaching in diabetic care. Jane Thomsen (Diabetes Specialist Nurse) I know these adolescents quite well, and I was surprised to see that although this is a group that has demonstrated serious difficulties in keeping appointments and to follow treatment plans, it proved possible to involve them and to have them take responsibility when supplementing their treatment with professional coaching. Dr. Poul-Erik Kofoed (Paediatrician) I agree. We can be encouraged by their participation and involvement in the program, but also by the improvement in the glycaemic control. Although they still had HbA1c levels that were too high international research has shown that the decrease in HbA1c could have significant impact on their risk of developing retinopathy. Well, 18 months after the coaching the HbA1c had again returned to the pre-study level for three of these patients. Nevertheless, bearing in mind that all nine had previously shown very high levels of HbA1c for at least the past 2 years before the coaching sessions, I consider it clinically meaningful, that three of nine patients maintained a reduction of more than 1 % and two of these of more than 2 % one and a half years after the sessions. Dr. Jette Ammentorp In addition to the improvements in HbA1c and the results generated from the interviews, I think it could be interesting to hear if you have observed other positive effects of the coaching. Another girl told me that her attitude towards her mother had become more positive giving them a much better relationship for which she was very grateful. In general, my impression is that several of them became more open about their diabetes, probably due to higher self-esteem, which made it a lot easier for them to measure blood glucoses and take their insulin as they did not have to find a place to do it in hiding. It also made it easier for them to discuss issues with me that previously seemed to be difficult. Dr. Jette Ammentorp From what you tell and from reading the interviews, it sounds like the coaches have addressed dysfunctional emotions, cognitive processes and maladaptive behaviour by using cognitive behaviour therapy. Jane Thomsen Yes, I suppose that the fact that coaching is based on a broad academic knowledge means that different approaches have been used depending of the agenda of the patients. By listening to the experiences of the adolescents I think I can recognize methods such as cognitive and behavioral psychology, positive psychology and motivational interviewing. However for us who have not participated in the coaching it is still like ‘a black box’, and in order to get the opportunity to really identify the methods used we will have to make audio recordings of the coaching, which will enable us to do a more proper analysis. Dr. Jette Ammentorp Have you experienced any negative effect of the coaching? Jane Thomsen Jane Thomsen Well—one of the girls told me what a big relief it was for her to realise that she was not the only one who found it difficult to cope with having diabetes. In the coaching program she was among others who also had to have special treatment. It was very reassuring for her to know that she was not alone. Another girl shared her ‘‘Wheel of life’’ with me, and we had an opportunity to discuss expectations. She was convinced that her parents and I were disappointed with her, because she was not well regulated. We had a discussion where the main issue was whether she was happy with herself or not, and it made her see that in fact she was disappointed with herself and assumed that we were as well. Not directly—no. But one of them didn’t think it had done him any good. He was blaming himself, saying that he had not worked hard enough which is a very common feeling among adolescents with poor metabolic control. They blame it on themselves. Dr. Jette Ammentorp During the coaching intervention the adolescents were given very much time and attention. Do you think it is possible to answer the question, whether the positive result is a consequence of the attention and the time offered to the adolescents, or if it is a reflection of the concrete outcomes of the coaching intervention? 123 Author's personal copy J Clin Psychol Med Settings Dr. Poul-Erik Kofoed Dr. Jette Ammentorp In a case study like this, the answer is: No. But it is an interesting and important question which will require a study designed to answer precisely that question. However, the statements from the interviews indicate that it is not only the time and the increased focus on the patients, but also the coaching in itself that made a difference. Still, to be sure that we can distinguish between the impact of the coaching method and the impact of the time offered, one should compare the outcome in an intervention group with that of a control group, in which the patients, instead of receiving coaching, are offered extra time and attention as a supplement to the ordinary routine visits. By this design it could be possible to demonstrate, whether the positive effect found is due to the coaching or only an effect of the intensified attention offered to the patients. From a scientific point of view I can add that these findings are in concordance with the great amount of studies about communication in health care emphasizing the importance of the patients’ experience of being listened to and being taken seriously and the association with important health outcomes. That brings me to the next question; do you think it is realistic to transfer the method into clinical practice if future research can show the same positive results as found in this case study? Dr. Jette Ammentorp What do you think is the main difference between the communication with the doctor or the nurse and with the coach? Dr. Poul-Erik Kofoed Unlike the counseling in the outpatient clinic there was no predestined agenda during the coaching sessions, and the adolescents could bring up whatever issue they wanted to discuss. In fact, they are very welcome to do that in the outpatient clinic as well, but I think that the main difference is that they expect the consultation to focus on their metabolic control, and therefore many of them experience it as a kind of examination. Jane Thomsen Yes, it probably has something to do with the expectations of one another and our roles. I am not sure that I would obtain the same positive results as the coaches if I used the same coaching methods simply because the adolescents expect me to be a nurse checking the metabolic control. The fact that the coaches were not a part of the health care professionals taking care of the diabetes seemed to be essential. It gave the adolescents a new opportunity to drop their role as diabetic patients and to choose the role of a person responsible for his/her own diabetes. I think that many of the statements in the interview point to that. Also ‘‘the experience of being met’’ seems to be very important for the adolescents, and the fact that they felt they were listened to and taken seriously was mentioned several times during both interviews. 123 Dr. Poul-Erik Kofoed It was a relatively expensive intervention and it may be unrealistic to translate it into clinical practice. However, it gave us an opportunity to investigate, whether coaching under the most optimal conditions could change the metabolic control in patients where nearly all former attempts had been in vain. The results from the interviews together with the encouraging metabolic results indicate a need for more research within this area. The next step could be to investigate the impact of engaging a professional coach in the department for the purpose of coaching a broader group of diabetes patients in a randomized design. From our experience I believe that we should aim at a non-medical person. Both for professional health care providers and for patients it could be difficult to distinguish between the role as a coach and the role as a health care professional—that is when to treat and when to coach. Jane Thomsen The results from our study indicate that there is a need for a follow up on the coaching session. We do not know what it would take to maintain the behavioural changes over time, but we are quite sure that some kind of follow up on the coaching is necessary. The adolescents are in a phase of life where they are continuously facing new challenges. We are planning a new study in which we will prolong the coaching intervention to eighteen months. It will be a randomised controlled trial which makes it possible for us to do a follow-up on both the intervention group and a control group. Dr. Jette Ammentorp Will you be using external coaches in your next project or have you considered training members from the diabetes team as coaches? Author's personal copy J Clin Psychol Med Settings Jane Thomsen Yes, we have considered it. However, based on our experiences from the pilot study, we may expect that the adolescents will still see a diabetes team member as a member of the treatment provider that is focusing on the metabolic control. Thus it may not give the adolescents the same chances of seeing themselves in a new perspective as they did in this pilot study where they met a coach with no professional knowledge of diabetes. Dr. Jette Ammentorp Are there types of patients for whom coaching might be contraindicated? Dr. Poul-Erik Kofoed For some patients with psychiatric disorders it might not be relevant to offer coaching, as it could be stressful for them to be confronted with the coaching methodology in which they themselves have to define their needs and goals. Furthermore, these patients might often need treatment by a psychologist or psychiatrist and it could be difficult for the patients to focus both on this treatment and on the coaching. To benefit from coaching the patients have to have reached a certain maturity. The lower age limit might be individual, but will probably be around 12 years. And the patients should have a near to normal psycho-social development. 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