GOOD LIFE CLUB CASE STUDIES In October 2003, two male and two female members of the Good Life Club who were unknown to the Project Officer were selected to be interviewed as part of a local evaluation process. To ensure that the selected members were representative of the broader population of clients, the Project Manager identified several clients that demonstrated predominantly adherent to treatment behaviour and clients that displayed predominantly non-adherent to treatment behaviour. In this way, the various experiences and behaviour patterns of members could be studied and understood. Participants gave their written consent and were interviewed face to face for 30 – 60 minutes. Each interview was recorded and transcribed verbatim. Three main questions were asked of the participants: 1. How do you think your diabetes management has been going? 2. How have you found being in the Good Life Club helpful to you in managing your diabetes? 3. What has been difficult for you in managing your diabetes? CLIENT 1 The first male interviewed was a 67 year old, retired, Australian-born male with Diabetes Mellitus and Hyperlipideamia. The client was taking Diaformin for his diabetes management and Zocor for his high lipid levels. He also reported lumbar back pain. When he joined the Good Life Club in August 2002 the three main goals he chose for himself were to give up smoking, improve eating habits and adopt a healthy diet and to improve the monitoring and recording of blood glucose levels. In choosing to focus on improving his diabetes management, the client also indicated a desire to examine his feet every day. Both the coach consultation maps that recorded his progress in working towards his goals throughout the coaching period, and his interview indicated that he was an adherent client. This client was very positive about his diabetes management overall and clearly his involvement in the Good Life Club and his regular coaching sessions have had a real impact on his health and wellbeing. To sum up, the client confirmed, “….they’ve done a good job with me I reckon; my wife does too. My coach made me take notice of what I’ve been doing. She helped me to set small goals to try to do things right..” This client felt that his blood glucose levels were now more consistent. He also believed his diabetes management was better since he started monitoring and recording his levels declaring that they used to be high but now they tended to range between 5-7 mmol/L. He admitted to not following a set routine for testing his blood sugar and that he would generally check his blood sugar based on what he ate and what physical activity he had Good Life Club – Client Case Studies. November 2003. 3 been doing so this could vary from checking it three times a day to three times a week. He had noted that after playing golf or getting on his exercise bike which involved him walking for 3-4 hours, his blood glucose level would be at the lower end. He was also happy to report that he had almost quit smoking, managing to reduce his smoking habit from a packet a day to a packet a week. This is a significant milestone considering that the client had been smoking solidly for fifty years! The client reported that he had made changes to his eating habits and that he struggled to maintain his weight, “I look at food and I put on weight. Doesn’t matter what I eat. I’ve changed a lot of the way I used to eat…don’t eat two pies a day anymore, or the ice-cream that I used to eat or the chocolate… cut all that right down …used to eat gallons a peanuts a week…probably eat a packet once a week now …eat a bit more fruit now….love lamb chops, but I don’t have them regularly, I used to eat six or seven, now I might have two every two weeks if that….Beer is non existent nearly. When I played darts on a Wednesday night I’d drink eight to ten pots, now I might have four light pots, or sometimes two. Now if I go for a drink, twice a week, have a couple of pots so that’s cut down to virtually nothing.” He did not believe seeing a dietitian helped him. “They tell you this and that, I never see anyone it works for. Me not following rules, I find it very hard. I more or less look at myself and think ok, I got up a bit there for a stage and went mad walking every night took off 3-4 kilos, now I’m creeping up again. Haven’t been able to go because of the weather; it’s been too cold.” Interestingly, this client tended to self adjust his medication. “I’m on Diaformin – two in the morning, two at night. It’s been the same for the last few years. Doctor gave me another little one to have, must be a slow release one or something could have been because he thought my blood sugar levels weren’t low enough. Sometimes I take it and sometimes I don’t. If I don’t have a lot for breakfast, I don’t worry about taking all them pills. I find if I play golf and you have a couple of those pills, they knock you around.” Clearly, the client’s decision to alter the amount of tablets he took was linked to his beliefs about medication. The client volunteered that since he had been to the diabetes education sessions, he learned the importance of having some jelly beans with him. He could not say for sure if he had ever experienced a hypo but that if he felt a little “dragged down” while playing golf he would: “just have a jelly bean. I’d feel alright after that. I always carry jelly beans in my golf bag. That’s all. It’s enough. Water or squash. Maybe a banana for a round of golf. They tell you all these things and I’ve learnt.” The client also indicated that he had his eyes checked once a year and that he checked his feet regularly. “I dry my feet properly and look at them. I do all that, I’ve learnt something. Prior to this I’ve done nothing.” When asked about how the Good Life Club had been helpful to him in managing his diabetes, the client was full of praise particularly about the fact that it had “got me off the smokes”, encouraged him to increase his exercise and got him “watching the food”. “Vicki says “you’ve got to exercise” so I borrowed an exercise bike and I get on it after tea three or four times a week…when the weather gets better I’ll be back out for a walk…” Vicki is the client’s coach. He felt very satisfied with his coach and the coaching. “It’s all been going pretty well. I used to get wayward then Vicki would get on the phone, “what are you going to do?” It kept me on track….. (it’s) terrific, great. Best thing since sliced bread. It did it for me. I probably wouldn’t have taken notice of half those things. Vicki checking on me, picking [sic] my conscience.” This case also showed that the diabetes education that he received at the Division had been the catalyst for change. “I went to those sessions where they talk to you about your diabetes… It was very good; I learnt more in that than I had in the ten years previous. I still never knew what it was all about. I was diagnosed ten years ago. I didn’t know that till I was half blind and the doctor said I should have been in a coma… (the education sessions) made me all aware of what can happen to you. At the sessions, hearing others talk made me think I’m a million dollars compared to them.” He revealed that prior to coming to the education sessions, he had not been testing his blood sugar. He had bought his blood glucose monitor during the sessions. Consequently he was able to confidently and knowledgeably talk about his blood sugar levels. The motivational interviewing from his coach, goal setting and working on lifestyle changes helped him to improve his diabetes management. “I started on the weight problem – got down four kilos, but it has started creeping back on again. It happened once I’d given up the smokes and once you do that I start eating more. I’d have a smoke after tea instead of eating, don’t do that anymore. At night, I’ll sit on the computer or throw darts, since it’s been so cold…Vicki’s rung me up, wants to know what I’ve been up to, says I’ve slipped with my weight. We worked out that if I walked and played more golf, the weight would come off….now I’ve found my blood sugar level doesn’t get up high, cause I’m walking so many miles each day swinging the stupid golf club.” From a mental heath perspective, this client had a positive attitude towards life in general. “Stress? Probably would affect my blood sugar levels but if anything stresses me I just walk away. Don’t get into any arguments.” When the client was asked what had been difficult for him in managing his diabetes, he stated that controlling his weight had been the hardest thing for him. “When I first went in I never worried about it, I never had a meter, I never read it, I never knew what it was. Then when I got here and I started to find out, I started to check what I can and can’t eat, what affected it – like gravy and roast, had to stop eating that. It used to go up cause I’d do a test after I ate a lot of these things and that would tell me to stay away from things like that. I’d wait a couple of hours but it would still be very high. I stopped eating it like I used to. Now if I have gravy, it’s very light and only a small bit.” Notwithstanding his difficulty, the client felt that food and his daily diet was something that he kept addressing; he felt he was more mindful of it than he was in the past “I look at it when I think I’m sneaking up, I try to get those couple of kilos off straight away… I got up to 16 ½ stone. I was pretty heavy.” He acknowledged that his wife had been very supportive in helping to manage his diet. He also noted that walking when playing golf was easier and that he did not huff and puff as much since cutting back on his smoking. Overall this client illustrated a case where the combination of receiving education, resources and the personal coaching utilising motivational interviewing to help him set and achieve his goals, had lead to successful diabetes self-management. CLIENT 2 The second male interviewed was a 72 year old, retired, Australian War Veteran with Type 2 Diabetes. A non-smoker, the client was taking Prazosin and Lisonopril for his high blood pressure and Zocor for his high cholesterol levels. He was not taking medication in relation to his diabetes management; dietary control was the main treatment being used. When he joined the Good Life Club in March 2003, the two main goals he chose for himself were to lose weight and to be able to do some light exercise on a daily basis. Both the coach consultation maps that recorded his progress in working towards his goals throughout the coaching period, and his interview indicated that he was a nonadherent case. It is important to note, however, that in the client’s estimation he was doing well given the feedback he was apparently receiving from his doctor. When he was asked about how his diabetes management was going, his immediate response was, “Well, I’m under a doctor’s care and have regular blood checks, the main thing is diet..” A significant observation to make here is the client’s reliance on the doctor. He did not seem to have his own opinion about his diabetes and had to be prompted to talk about what he was doing in relation to his diet, exercise and blood glucose monitoring. He was of the belief that keeping away from “greasy stuff, fried food etc” was the main dietary change he needed to make. He acknowledged that “We eat regular meals and I find that I have to have something between meals sometimes you get a bit light headed, I go too long without food. It’s part of it apparently. But apart from that no problems.” He did however, volunteer that he had problems with frequent urination and understood that there may have been some connection with his diabetes. “I have a bladder problem. I suppose that is part of the diabetes. I go to the toilet a lot. The next step is to see a Urologist after Christmas…have a proper examination, cause I got a bit of prostate trouble as well. All part of the ageing process I suppose. But I go to a good doctor and he puts me on the right track.” He changed the pattern of his blood glucose monitoring once he realised there was very little variation in his readings. “I was checking my blood sugars everyday, but my machine has packed it in. I have to send it up to Sydney to get it checked out. I used to have to check it every day and it didn’t vary much so now I just take a random check. It’s been up around 8. something and the doctor seems happy with it as long as it’s under 10.” When asked about 3-6 monthly HbA1c checks, the client had no idea about this and indicated it was something he needed to ask his doctor. He was aware of blood tests done yearly to check for prostate cancer but couldn’t “recall” any other blood tests. Similarly, he was unaware of the importance of kidney function tests and was unsure about whether these had been done. The client, however, seemed confident in his doctor’s satisfaction with his blood pressure and cholesterol level. The client talked about his regular heart checks and the difficulties he was having with his breathing. “I’ve just been to a cardiologist (go every six months) he’s quite happy with the blood pressure. I’ve had a heart bypass operation and this bloke’s been pretty good he looks after me and I go every six months for a bit of a check up. I have a bit of a breathing problem. I got to go and get a lung function test. I was in a ships explosion in 1950, 8 blokes killed, and a lot of us trapped – we breathed a lot of toxic fumes and smoke. I’ve been alright…now I’m getting some breathing problems. I got a bit of a bronchial problem too. Don’t know whether it is all related but I’ll go and have a lung function test and get some answers on it.” Interestingly, the client’s coach consultation map dating back to April 2003 informs that he was breathless and due to have spirometry done soon. Then again in July the coach indicates that he is “due to have spirometry however hasn’t had this yet. Still gets breathless on exertion”. In September’s telephone coaching session, the client mentioned it again, the coach noting on his consultation map that he was intending “to have spirometry to prove to Veteran affairs that he should have his pension increased.” The coach’s notes also state once again that he was breathless on exertion. Six months later in our interview the client admitted that he “hadn’t got around to it yet”. Other aspects about his diabetes management were discussed after more prompting. This included some discussion about his eyes and feet. He confirmed that he went to the eye specialist every six months to have his eyes checked for “any diabetes interference” and that every six weeks he saw a podiatrist. The client was then asked how he had found being in the Good Life Club helpful to managing his diabetes. He admitted he had been made “more aware” of his condition. He was pleased with the coaching he had received. “I found the coaching alright, yap for a couple of minutes. It (the coaching) makes you aware of things, she’s quite nice to talk to on the phone. It’s good to know someone cares. The coaching keeps you kinda motivated. Good to have someone on your back to keep you going.” When prompted to talk about whether he had achieved any of the goals he set for himself, such as losing weight, he declared “I have the sugarine tablets, I don’t eat too much sugar….. Hard to cut down fat in your diet. I have muesli every morning with skinny milk and I keep away from that Kellogg’s stuff that is full of sugar……..I have a drink, not in excess. Average in summer say two stubbies a night which I feel is pretty all right. In winter a couple of glasses of red wine of a night, they say it is good for your heart……..I have lost a little weight. It’s hard though, take a little off and then you only gotta eat a cream cake or something and it goes back on. I try to stay away from all that.” With regards to his exercise goal, he noted, “Yeah, I make a bit more effort about it now. I make it a regular thing every Monday and Friday. I wasn’t doing it as much before…I’m a bit limited, I got a bad back…. I can walk on flat ground and where we live is up hill and down dale. We’re pretty limited, I go around the block. But I do a fair bit of walking of a Monday and a Friday. A couple of hours each of those days. I try to keep pretty active. They only sport I do is clay target shooting, a bit of walking in that, no real exercise. Do a bit of gardening. The garden we’ve got is pretty maintenance free. The grass is the biggest job. I manage ok, do it in stages…..I do a bit of vacuuming….” His response to the difficulties he experienced in managing his diabetes, tended to recap on his resignation to being limited in the amount of exercise he was able to perform, “Apart from walking – I’ve got a degenerative disc in my back- I can’t do much stretching or bending over. The walking is about the only thing I can do.” He seemed dissatisfied with his efforts to maintain a healthy diet and maintain his weight. His greatest difficulty was “..keeping my fingers out of my mouth, in the way of food. I’ve cut down a lot of stuff, now and then I get tempted. It is hard to keep on a strict diet. It is one of those things I’ve got to strive a bit harder….(I’m) tempted – when you go out and there’s something that looks nice on the table and you can’t help yourself, like a cream sponge. Just a matter of trying a bit harder I think….Lollies I’ve given up.” The client was very fixed on the old notion that a person with diabetes needed to avoid sugar and sugar laden foods. Apart from rejecting fried food, the client did not give any indication that he knew of other ways he could improve his diet to maintain even blood sugar levels and to keep himself within a healthy weight range. Overall the client appeared to have a blind faith in his doctor and had not quite grasped the principles of self management. This was illustrated quite strongly when he was unable to say what medication he had been prescribed for his diabetes. “I’ve been on some medication for so long I forget what it is for. I’m on, “limprels”? I take ½ a tablet or 10 mg a day. Not sure if it is for your heart. I’m on 3 different tablets a day. I never think to check them out.” Given that no information about this existed in the patient’s Good Life Club records, the interviewer followed this up by ringing the client several days later to determine from him what medication he was taking. The client was able to refer to the bottles of medication at home and read them out. Ultimately, the interviewer discovered that the patient’s diabetes was not being treated with drugs and the medication prescribed was for his high blood pressure and high cholesterol. The medications are nominated earlier in this document. It is clear that the client was happy with the doctor’s management of his diabetes and had not paid too much attention to managing aspects of his condition himself. In his own words, “I don’t worry about it”. CLIENT 3 The first female client was an energetic and enthusiastic, trim, retired, 66 year old Australian with insulin requiring Type 2 diabetes. She has five injections a day of human insulin: three injections of Humalog (short acting) and two injections of Humulin (long acting). A non-smoker, she was taking Tritace 2.5mg to control her blood pressure and maintain renal health and Lipex 40mg to lower her lipid levels. When she joined the Good Life Club in August 2002 she was concerned that her blood sugar was erratic in the morning. She felt she had a lack of energy. Her main goal was to factor more activity into the evening especially in the winter months and to get more information from health professionals about overcoming the problem in order to begin to investigate a realistic, sustainable form of exercise that could be incorporated into a routine. Now, sixteen months later, she felt that this had happened and that she had done well. Her coach consultation maps that recorded her progress throughout the coaching period and her interview provided further confirmation of this success as can be seen in this report. Although the client was still grappling with the occasional early morning blood sugar highs, she was confident and competent in adjusting her insulin dose to improve her management. It is quite evident that she is an adherent client who has enjoyed the benefits of better diabetes self management and who is keen to continue to live well with diabetes. The positive outlook on her condition is what is most striking about this particular client. Despite a recent bereavement; the enormity of losing a life-long partner and the suddenness of change in dealing with everyday necessities that were once not her domain, she was “coping with life”. Moreover she had made a real effort to take control of her diabetes through improved eating and exercise habits. She acknowledges: “Stress is the worst thing. You see I nursed my husband with his cancer for years and the stress of that was pretty awful. He died two and a half years ago. Once I got over about eighteen months after he died, I could feel myself being much more relaxed and coping with life because it was all John, John, John, here there and everywhere in the hospital cause he was really sick, then he became paralysed and was in Caritas Christi. I had never driven on the freeway. My husband was a bank manager so I had never managed the banking. It’s taken me a long, long, while to actually cope. I’ve just sold the big old car and bought a new little car. I’ve had my house paid off.” A determination to do whatever she wants to do; to not let her diabetes stop her seems to underlie the way she lives her life. That attitude, along with a certain amount of assertiveness, has enabled her to cope and to work out what is best for her. “You learn to do it. I’m managing it really well now and only because I’ve experimented and I know what I can do. I have to live to my own agenda. I can’t live to other people’s agendas. You know, if they want to go out and eat at 9.00 at night, well I can’t do that. For our break up, we’re having a breakfast at 9.30 and then we go and sing at the day care centre…well I can’t wait for my breakfast till 9.30. I get up at 7.00. I have my breakfast at 7.30. I go for a walk or do my exercises for an hour and then I get on with it. I have my normal morning, then I go there and sing. I have my morning tea before I go because 11.00 till 12.00 is a really bad time if you haven’t eaten. So things like that, I’ve just had to say no, I’ll see you there…..” Her self-awareness is very evident in responding to the question in the interview about how her diabetes management was going. “I’ve got everything going as good as you can do. I mean I have the massive highs – it’s quantity of eating. It’s not what I eat because I eat all the right things but sometimes if I’m out or anything and I’m really hungry, I just eat too much – very occasionally but I mean I can walk that off in the next day and as my educator says one high isn’t going to kill you. Like the other night I came home and I was 19 but the next morning I was 5. That’s the good thing about insulin; I took a couple more units. I was playing at a concert last night and I thought the last thing I want to do is go hypo so I only took 4 units at tea time instead of 6…which meant I had to – you can’t be going out eating jelly beans in the middle of a concert. Then I came home and I was 19 but I was a bit stressed too because I was part of the concert so I just had two units of the quick acting and then my normal 30 of a morning and then I was 5 this morning. That’s what my diabetes educator told me to do: always top it up if you need to….cause I’ve learnt now, if you’re going to do something like that and you don’t have a hope of caring for your diabetes, you’ve just gotta have less insulin and just manage it a bit later on.” In stark contrast to the other case studies that have been discussed thus far, this client had a good knowledge of her blood sugar levels, her blood pressure readings, her cholesterol level and the medications she was taking. “I go every four months to the specialist. My specialist does all the tests, the urine tests and the HbA1c: that’s hanging around 7.6 or 7.9. It was always over 8 and we were desperately trying to get it under 8 so I’m happy. Eight is pretty good. I’ll never get 7 – not when I get the odd high. I’m also on high blood pressure medication and cholesterol medication. I’m on Tritace and Lipex. My blood pressure has always been good…you know 125/75 that sort of thing. Cholesterol’s good. I wish I’d brought my book. I didn’t think to bring it. I’m sure it’s under 5. The LDLs are way down. The figures are keeping us all very happy. I’m glad I’m on the medication because that obviously helps.” In this passage the client mentioned her book in which she had been recording her blood glucose readings and the other figures related to her health checks such as cholesterol and blood pressure. That she kept a log book is illustrative of the fact that she was diligent in her health management. She then went on to demonstrate that she had all the other important aspects of diabetes management under control such as eyes and feet. “I go to Ann Gipson in Mitcham every 12 months and she always does the good old look. Last time I had some bleeding behind the eye so she did the big picture of the back of the eye. She’s the one that makes my glasses and she will refer you to a specialist if you need it. She’s good. I’ve got precataract but not enough to even worry about at this stage. My vision is excellent – well with glasses that is…. I go to the podiatrist whenever I need him: two to three times a year. He gives them all the once over and I certainly keep tabs on them. I use sorbolene cream all over..it’s just lovely. The only thing is that I do have a few numb toes now but I found massaging them helps. It really does. I think it’s just circulation really.” As mentioned earlier, a healthy diet and a large volume of exercise are major parts of her diabetes management. “I play tennis every Tuesday, I swim every Thursday, I walk and I garden. My life is outside working……………. The other thing that’s been really good …channel 31, 8.00 every morning is “Move it or lose it”. Every diabetic in this world should watch it ……. It’s just half an hour and it’s different presenters. Tuesday and Thursday are my least favourite – that’s Tai chi and Yoga- not enough movement for my liking (laughs) but I do the stretching and everything. Stretching is the best thing. Monday is chair based and look honestly you learn to stretch all your calves and everything. I had an injury that was gonna take years to get better. I can now get that up to the same height and it’s just by doing all the stretching – just that half an hour. Friday is movement to music. Wednesday is weights. You are puffing by the time you’ve finished. The best thing I ever came to here was David Dunstan when he came and did the talk on weights: resistance training. I’ve done that ever since, particularly on a Wednesday. So Wednesday is my weight training. I just love exercise. Every time I go for a long walk or something – forty minutes is about my max- when I come back – sometimes you wake up in the morning a bit sluggish your blood’s a bit high and so you have your brekky and you go for a walk and your slow to start with and you start breathing deeply, get going and by the time you come back you think Wow! I’ll do some gardening; I’ll vacuum, whatever- you’re energised. That’s all you need to energise yourself is to exercise. I’m positive about that. I’ve had a lot of diabetic friends…and when they walk they just walk; they kind of shuffle and I wish I could just say: try to make yourself walk faster and breathe deeper.” Her comments about her eating habits demonstrate that she understands what it truly means to have a healthy diet and obviously this has had a positive impact on both her energy levels and her blood sugar levels. “I have the most beautiful meals. I love what I eat (laughs). Lots of variety. I experiment with all sorts of things – mainly savoury stuff like I make these beautiful wraps out of that flat bread. I have them at lunch time, all sorts of casseroles…I eat fish at least twice a week. I love fish. I have chicken and then I have a red meat a couple of times a week. I don’t eat any rubbish. There’s a new bread out on the market. Noble Rise have made a muesli bread with fruit…oh it’s to die for! If I want something as a snack with a cup of tea, I grab a piece of that. Raisin loaf is also my saviour. When we take the little fella (her grandchild) swimming, I cut up some for his lunchbox and then gran picks at some too. I have oats for breakfast every morning with sliced apricots on it and skim milk.” It is an important aspect to mention that this client spent much of the time in the interview talking about her family. Her connectedness with her family has obviously contributed to her emotional wellbeing and there is a real sense of her overall contentedness which comes through in both her language and her manner. “I have seven grand kids. I take one of them swimming on a Thursday morning and help one of my daughters a fair bit…but I have a lot to do with them all…we’re having a seventeenth birthday party for one of them on Sunday and all the family are coming….I’m active. I’m happy and I’m very much enjoying life at the moment.” The client’s response to the next main question about how the Good Life Club had been helpful to her in managing her diabetes is telling. “In the beginning it was really good because I set goals and I achieved every single one of them. I was actually very nervous about coming because I thought it would be like going to the doctors and getting growled at because everything you do is wrong. Instead it turned out to be the complete opposite. My friend and I came to things; we both joined up.” The statement highlights a familiar pattern of the relationship that can sometimes form between the doctor and client: doctor lectures the patient; patient does not respond. The various case studies throw strong light on the many different ways a doctor may relate to his/her client: peremptory, even draconian, consoling, informative without being too didactic, approachable, respectful, understanding and so on. Indeed the different styles of general practice are highlighted as well as the myriad of different levels of responses / receptiveness in the case of the client. In the case of this client, chronic disease self-management became very much a part of her life and hence she could say with some satisfaction, “When did I join? The 19 a lot longer ago than that. I’ve done a lot. There’s only me to do it now.” One of her goals was to investigate strength training options. She currently does strength training at home as mentioned previously and was contemplating joining one of the groups at Women’s Health East. She has also increased the amount of exercise she does to include evenings. “I didn’t feel there was much else I could do…I thought I was doing as good as I could…a lot of people do that but then you just keep pushing the boundaries and you find you can do a lot more. I tend to do more exercise at night now like gardening or walking. My blood sugar is more likely to be normal in the morning, these days with the odd high. See before, sitting with a sick person, I was sitting a lot. I also stand and iron for three hours at my daughter’s one night a week.” Nevertheless when prompted to reflect on the coaching she admitted that her feelings about her experience with coaching were mixed explaining that with her first coach she felt pressure from her coach that whatever amount of exercise she did, it was never enough “With the coaching, I felt that she (the coach) bounced me a little bit. I would tell her about the exercise I was doing and she would say it wasn’t enough and I’d tell her I was doing my best or what was enough for me. I’d have to pick myself up again after I got off the phone afterwards. I felt she didn’t really know me….I told David about it…then after she went overseas, I had a new coach and she was lovely…you know how it is…you can’t get along with everyone in life…” What should be learned from this is that as health professionals aim to do the best for their clients, sometimes they may push too hard. The danger here is that a client may become too despondent and then instead of being motivated to improve, they may give up altogether. Notwithstanding this, her praise of the Good Life Club was high. It strengthened her resolve to go on with her life despite her chronic disease. Certainly the empathetic relationships she formed with others involved in the Good Life Club helped. “The Good Life Club made me realise right from the word go that there were other people interested in diabetes…. like cause you’re with people and out of everyone I’m with there’s not one person that understands I’m diabetic… I’m in choirs and singing groups and we travel and I mean I carry my banana and I have it at afternoon tea time like if we’ve sung for an hour, I’ve got to eat and they all just have a cup of tea. I can’t be worried (about what they think). I’ve just gotta look after myself cause I’m on five injections a day of insulin. So when I came here everyone knew what it was and it was really good cause no one in my family had it. Even getting doctors to understand is hard… … The Good Life Club made me feel like I was not alone.” Finally in explaining what was difficult in managing her diabetes, she declared “Learning to face problems as they turn up….e.g.: the hypos learning to manage them and then next time you’re better. I’ve had to make my house safe cause I’m on my own: there’s no one going to pick me up. I’m careful with my car. I almost never go out if I’m hungry. That’s very important. I make sure I have my jelly beans with me. I have to just make sure I’ve got enough of the right food when I shop. It’s just managing your day. I can’t lead a fancy free life – you just can’t. That’s the way it is. The kids know that it’s time for gran to eat. My poor kids. It’s going to be the cancer or diabetes. I think most families are the same these days – there’s not many families untouched..” Moreover, she reflected that it was less difficult for her. She had been on a holiday and was very positive about the experience. “I went to far north Queensland for nearly three weeks this year. I didn’t find it difficult. I was determined to enjoy it cause I don’t get many chances to have a holiday. I went with a group from Heathmont Uniting Church. I’m with that group for quite a few things. It didn’t bother me. I always took my pen in my pocket and wherever we were eating a meal – I’d always start eating before I went and had an injection. It worked out really well. I don’t think half that crowd knew I was diabetic. I was the only one. I always go to the ladies to do my injections; I’m not going to embarrass anyone. People wouldn’t even know what you’re on about. I always buy slacks with pockets so I can carry my jelly beans and needles. That’s a difficulty. A lot of pants these days don’t have pockets. I went with my heart in my mouth cause I didn’t know how I’d manage. There was plenty to eat with all the fruit. I did everything. We were in four wheel drives and it was great!” It is evident after speaking with this client, that she feels positive about her own ability to cope and manage her own health. Diabetes has now become another element that she copes with in daily life. She does not lament having diabetes. It is quite apparent that she sees diabetes as another challenge to deal with. In her own words she says, “I’m an absolute optimist and I’m a trier. If there’s a way around anything, I’ll figure it out” Rather than bemoan the fact that she cannot live “a fancy free life”, her attitude is one of acceptance. Indeed what is remarkable about this client is her joie de vivre. Her tone is one of gratefulness in saying, “I have a friend with cancer and another with motor neurone disease – how good does that make diabetes! You can manage diabetes but you can’t manage motor neurone disease…so how can you be anything but enjoying your life.” CLIENT 4 The second female client was a retired, 59 year old Australian with Type 2 diabetes. The client was taking Diaformin for her diabetes management. When she joined the Good Life Club in August 2002 she was wanting assistance in setting short term goals, and especially “wanting a little bullying to make a commitment and maintain it and lose weight and not put it back on again” once she’d achieved the goal. In addition to this, she aimed to check her blood glucose more regularly. The coach consultation maps that recorded her progress in working towards her goals and her interview indicated that she had periods of success where she had lost some weight but then slumps where she had put it back on again – not having regular meals then snacking on junk foods and eating on the run. Her blood glucose monitoring did not improve throughout the coaching period with the client testing before breakfast but never remembering to test after meals. At one point she conceded that her blood sugar was 10 or greater before breakfast. Sometimes she would skip breakfast altogether. This longer fasting time would facilitate unstable blood sugars. There was an indication that she was in denial due to the fact that she didn’t test regularly or kept forgetting. She also confessed to feeling a lack of will power towards improving her eating habits and blood glucose monitoring. She had been given a suggestion by her coach to keep a diary of her blood glucose testing and her snacking but the client to date had not done this. In the interview she acknowledged, “I’ll have to do that actually.” At one point, the client had not been to the GP for five weeks or more despite a letter to her from the GP expressing concern about her consistently high blood sugar levels and asking her to attend the surgery to discuss treatment options. Eventually in July 2003, the client visited her GP and made an effort to take the medication prescribed to her for her diabetes but she was still not testing after meals. All of these factors showed that she was a non-adherent case who needed a lot of support from various health professionals and even her family. When asked about her how her diabetes management was going, she responded that she thought it was “going alright….I now remember to take my blood sugar reading every day before breakfast. I forget during the day, a lot. I think at least if I do it the once, at least it gives me a bit of a guide and I’m hoping to keep doing that. I sort of think to myself, I’m not really sick. Do you know what I mean? I think it’s nothing major type of thing. I tend to be a bit blasé about it….” This self-denial coupled with her own health beliefs prevented her from adhering to taking her medication as prescribed. “I take Diaformin. I’ve only just started doing that regularly in the last six months I s’pose. I sort of have this resistance to taking tablets. I have this thing in my head, it’s probably not right: if you take a tablet, your body gets dependent on it and you can’t ever go back, you’ve always got to have it or maybe increase it sort of thing…so I resisted that for a while and was only taking half a tablet morning and night. I’d take one and then my daughter and son in law said “Why don’t you take your tablets?” and I’d say oh I dunno….the doctor says I should have one morning and night which I’ve started doing now but at first I thought I’d just take a half; I hate taking tablets. I just have this idea in my head once you take a tablet you can never reduce it, you can’t have half a tablet in six months……if my blood sugar was well over the 8 all the time, then I would be probably brought to attention more but because I do it every morning and it basically is under 8, I feel that I’m okay….I keep forgetting to take it two hours after lunch or dinner then I might have a piece of bread or a biscuit or whatever and then I remember and say I’ve mucked that up again. It’s because I’m not very regular when I eat and that throws me bit. I’ve got into the habit now of when I wake up the first thing I’ve got to do is take my blood sugar so I can remember that but then later in the day it just goes right out of my head. I think I don’t want to do it. I mean I don’t like having it (diabetes). It’s the sort of thing that I know will never go away and it just drives me mad that I’ve got that nagging in the back of my head all the time. I just put my head in the sand and hope it goes away. Probably the only reason I’m taking the tablets now is I don’t want to get to the point where I’ll have to use a needle……I’m like a kid in a way with a big stick over my head….I think somewhere in your mind you think you’re invincible and I know you’re not but you think that will happen to someone else; it won’t happen to me…..I tend to listen to other people more than myself…that’s me- as bad as that is, I can’t help it…I’m a follower..I’ve never in my life been a leader….you can’t help your nature, I’m afraid.” The need for “a little bullying” (to use the client’s own words) or to have to be accountable to someone else rather than herself comes through very strongly in these comments and in her explanations about her involvement as a participant in some national research. “I’m hoping when this survey thing is finished, I’ve still got the motivation to do it (checking her blood sugar and walking)- that’s what I’m a bit worried about. I find my personality is if you know someone’s checking on you, I do it …[the research] has kept me on the straight and narrow a bit as well and I need something like that. I’m just that personality that needs something to know well if I’m a bit naughty, in a couple of weeks I’ve got to go see somebody.. Her eating habits and weight management were a big issue for her. “Diet is the big problem with me; it’s an ongoing battle…has been all my life. I was sick last week and I thought oh good, I’ll lose a couple of kilos – now that’s a ridiculous attitude to have…but I’m trying really hard at the moment….being much more conscious of what I’m eating like having the different rices. I put in veggies, a bit of soy sauce, some parmesan cheese and maybe even a blob of sour cream just to give it something…and I like it and if I’m cooking something for myself it’s better to do that than just throw something together. I love food so I’ve gotta look forward to something. I’m trying not to eat biscuits or chocolates or stuff like that. I can’t trust myself with a chocolate. The other day there was a big special on for something I liked and I thought I’ll get them and I won’t touch them and I went for probably six weeks without looking at them and then all of a sudden something must have upset me and I thought I just want something., you know. It’s comfort food…then I thought I shouldn’t have had them in the house…… I find when I’m occupied I barely eat. If I’m home I’m bored and I’m looking for something.” The client’s comments display a certain amount of self awareness as to what contributed to her erratic eating patterns and poor choices. Setting time aside to cook something that she enjoyed instead of just “throwing something together” or snacking on the run, cutting out high fat and high sugar snacks and removing the stimulus (unhealthy snacks) so that she is not tempted are all mentioned. Moreover she acknowledges that she eats these treats if she is emotionally upset or bored not because she is hungry. This insight however has not motivated her to change. She accepts with a certain amount of self defeat that “I’m very weak willed; you’re going to hear all my faults I’m afraid…” This is echoed in her earlier comments: “you can’t help your nature, I’m afraid.” Nevertheless, she is able to pinpoint what will motivate her to improve. “I feel I’m much better when I have a goal in front of me it might be like when I went interstate a couple of months back, I’ll say to myself I’ve got to lose some weight, that to me has more impact than just saying I’m going to do it…I want to do it for myself but I have to have some sort of a goal. I went off the rails last year, then lost 10kgs and loved it…it was because I was going overseas and then I came home and thought I’m going to continue this and then someone upsets me or something and then I think, I don’t want a carrot stick, I’m going to have a chocolate….. I’m going to go to Norfolk Island next year so I’ve got that goal in front of me. I need something like that to get me to a certain point like say I want to lose 4 kilos in two months, something like that rather than just ongoing.” The need for a goal and a companion to motivate her is also echoed in her comments about her walking. “I go for a walk – three times a week I go with a friend. I find too if I’m listening to something and I’m by myself, I’m not as bored. ..so I quite enjoy that and I try to walk…and I like to walk for a purpose like if I have to go up the street and get something from the chemist, I’ll make sure I walk up so that I’m not aimlessly walking around the streets. I promised to do a half an hour with this lady and I try to keep that up….I went out this morning because I sell Avon and I thought right, I’ll deliver a few pamphlets so I’m not just aimlessly walking so that gave me 25 minutes and a sense that I’m doing something while I’m walking. I’ve got to go to the podiatrist after here and after he pulls your feet around or whatever, you’re supposed to do another five minutes walk …. so I think anything above that, I think I’ve done well…but I try to make sure I’ve done my promise of half an hour….sometimes I might walk for an hour with my friend. We don’t sort of power walk, we amble along but it’s better than nothing but it’s quite hilly so occasionally you huff and puff.” Another motivating force was fear. The reader should recall that the client asserted that: “Probably the only reason I’m taking the tablets now is I don’t want to get to the point where I’ll have to use a needle…… every so often someone will say you’ll have your leg off or you’ll die and that sort of tends to pull you up for a while.” The client is also regularly seeing a podiatrist, having her eyes checked annually and having her blood pressure checked every time she visits the doctor. Again she indicates fear as an instigator of her self-help actions. “My mother can’t walk because of arthritis and I don’t want to end up like her…so I’m having some work done on them and I have my three monthly check up”. She had no knowledge of the Hba1C and micro albuminuria tests and could not confirm if they had ever been done. When the level of helpfulness of the Good Life Club was discussed she commented, “I like having the newsletter from here. I like reading about that. …..I don’t tend to do a lot of what’s in the newsletter but I keep an eye on it cause a lot of it is computers and stuff and I’m just illiterate when it comes to computers so it doesn’t interest me. I’d rather read a book. The walking activities – well I walk with a friend. But I like reading the newsletter cause I like to know what’s going on just in case I do decide. I just find belonging to a club, you feel sort of not on your own; even if you don’t do a lot with the club, you know it’s there.” The client tends to view the Good Life Club as a bit of a crutch and there seems to be a certain amount of comfort in the knowledge that it is there and that there are others in “the same boat”. This notion was reiterated by the other female case study when she said, “The Good Life Club made me feel like I was not alone.” The need for empathy from other people with diabetes is strong. The issue of personality resurfaced when discussing the coaching. The client admitted that it was easy for her to lie. “The coaching hasn’t really been the right thing for me…because I’m not talking to that person face to face I can tell them what I want rather than tell them the truth if I feel like it. If she said to me one week, will you promise to not to eat any chocolate or something like that, I could say yeah and then she would ring up a month later and ask well have you eaten any chocolate and I could easily say no and she’s none the wiser but I know I’m cheating myself but I know I’m saving face with her.” “Saving face” was more important for this client. The impact of not making the necessary changes i.e.: increasing her risk of complications was not something that she considered. Moreover, earlier, she had declared that she thought her diabetes was “nothing major” and that she tended to be “a bit blasé about it….” In responding to what she had found difficult in managing her diabetes, she reflected “I don’t like taking the tablets…it’s just annoying because I’ve never had to do it before…..The real difficulties are having to remember to take the tablets, remembering to take your blood all the time….especially when no one else in the family that lives with me has it ….so there’s nothing to remind me….no one there to keep a check on me …… When there’s no goal to aim for like the wedding or my trip away you just tend to say “oh I can’t be bothered today”, that also makes it hard.” Clearly for this client having diabetes was all too much. In contrast to the predominantly adherent female case study whose optimism and zest for life could not be dampened by her condition; who was “determined to enjoy” her holiday, and indeed her life, despite her diabetes, this client felt encumbered by her diabetes to the point where it was easier for her to deal with if she put her “head in the sand” hoping that if she ignored it, it would “go away”. Similarly the client felt that without some kind of incentive, there was nothing to encourage her to make the changes necessary to live a good life with diabetes. Nevertheless she was able to recognise the importance of setting goals for herself in achieving a level of success. Additionally, the idea that she felt she had to cope on her own is significant. Her character, she believed, stopped her from doing things independently and she felt that she needed someone familiar with her as a security blanket. “…. I think having this club here and every so often if people could meet maybe that might help. I’m happy to go with anyone that drags me along. I won’t go by myself because I don’t know any one. Once you join a club and you know someone it’s easier; it’s just that initial thing of going into a room and never having met anyone…I hate it.” Note too, that her use of the phrase, “drags me along” reinforces the point raised earlier about the inconvenience of having diabetes; about how “annoying” it is and how “It’s the sort of thing that I know will never go away and it just drives me mad that I’ve got that nagging in the back of my head all the time.” The idea of self help; of taking control of her diabetes management for her own sake is not something at the forefront of this client’s mind. Doing something about her condition is generally something instigated by others. She is happy to ‘follow” but as she herself says, “I’ve never in my life been a leader”. CONCLUSIONS The four case studies provide wonderful insight into the many significant elements of self management. Notably, the interviews with the females were lengthier than those conducted with the males; the females tended to be more forthcoming in their comments and reflections on their thoughts and feelings regarding their chronic disease. In different ways, the male and female case studies highlight the importance of: • the support of family and friends; • social connectedness; • good mental health and wellbeing; • having a positive attitude; • spirituality and faith and how this strengthens their ability or resolve in being able to cope with their condition; • beliefs attached to medications and how they might affect adherence / nonadherence; • diabetes related knowledge such as hypoglycaemia and hyperglycaemia; • the role of diet and exercise and how knowledge and attitudes related to them impact on the client’s ability to self-manage his/her diabetes; • the relationship between the client and his/her health professionals involved in his/her care. This relationship between the client and health professional (particularly their doctors) tended to be determined by the style the health professional adopted in administering health care to his/her clients. For example some health professionals mentioned by these clients adopted a dictatorial or authoritarian approach; others seemed to have fostered a partnership with their clients and cultivated a relationship that spoke of a collegiate determination to work together on managing the client’s diabetes. The latter approach was more successful (as demonstrated in client 3’s case) in terms of empowering the person with diabetes so that their self efficacy was increased and their diabetes control was at a point where they were able to enjoy good quality of life. Moreover, these health professionals understood that having a chronic condition requires daily maintenance but sometimes, for various reasons, it becomes difficult – other health conditions, family stresses, work pressures and bereavement may interfere with the client’s diabetes management. Equally, the client’s self perception of his/her diabetes and how that may differ from the reality plays an enormous role in his/her self management. This includes notions of the level of severity of the disease, feelings of fear, anger, frustration and acceptance. Possessing a certain amount of assertion also appears to play a vital role in diabetes self management. Indeed personality, character traits and self-improvement are recurring themes in the case study interviews. The effectiveness of telephone coaching in self-management is varied. Whilst in one case the coaching strengthened a client’s resolve to make the changes to improve his health and quality of life, in another the lack of face to face contact did not increase her capacity to motivate herself towards change. The feeling of belonging to a club and the regular contact with other people with diabetes via the activities and regular newsletters were important to all the clients interviewed. These aspects, along with the security that comes with the knowledge that the club was “there” for them when they needed it, were clearly consistently successful elements of the Good Life Club intervention.
th August 2002? It’s only just over a year. Gosh it seems
Credit:ivythesis.typepad.com
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