Participants' perspective on maintaining behaviour change: a qualitative study within the European Diabetes Prevention Study (original) (raw)
We identified categories for individual (physical and psychological), social and environmental themes and we identified contrasting facets within these. For example, there was temptation, "I like chocolate," and temptation avoidance strategies, "I don't have chocolate in the house." We conceptualised this contrast as, 'props and burdens'. We used props to categorise anything that helped, and burdens to categorise anything that hindered, in maintaining a healthy lifestyle. The word burden was used specifically to emphasise the ongoing nature of the problems that people had. The long follow up period in the EDIPS trial, with participants able to reflect on their experience over three to five years, allowed the consideration of change maintenance over time. Figure 1 summarises the props and burdens we identified and shows these in organisational levels in line with health promotion theory [26]. The key themes are described and discussed in detail below.
Figure 1
Themes for change maintenance in organisational levels (props and burdens).
From further analysis of these first order constructs (props and burdens) and their meaning structure, using an empirical phenomenological approach, with consideration of health behaviour change theories, we identified three second order constructs: 'disruption of habitual equilibrium', 'motivational mix of reassurance and risk', and 'curation of self efficacy'. Prior knowledge of the trial participants helped in the appreciation of their provinces of meaning.
Burdens
Individual physical
The average age of the EDIPS trial participants at baseline was 57 years and most in this study sample were older (mean age 64). Many participants had pre-existing physical conditions, such as arthritis and hypertension and all were overweight or obese (BMI >= 25 kgm-2) at the start of the trial. The occurrence of setbacks, such as deteriorating physical condition or injury, was mentioned by many participants. Where people were struggling to maintain changes in difficult situations, setbacks were particularly unwelcome. The added burden could have led to any progress made being abandoned. Some participants had had medication for co-morbidities which caused problems,
So that (medication) means I put weight on. Everything I eat goes into my weight. (6: male, age 74, control)
Individual psychological
This was a major theme and the successful participants still had problems. Too much or the wrong type of food was a temptation, exercise seemed like a lot of effort and a previous bad experience or lack of ability was a deterrent.
I went to the gym once and kinda thought it was terrible. I didn't want to go back (8: male, age 72, intervention).
In some cases they became resigned to deteriorating health. If they compared themselves with someone who seemed to have had no regard for their own health, but nevertheless managed to stay slim and healthy, it seemed unfair that they were burdened with problems. Sometimes they were disheartened and struggled to maintain the effort.
It still doesn't make any difference, I am still not right. There seems to be
no justice in it. (3: female, age 66, control)
Some referred to media information, which might be an advertisement and thus considered untrustworthy, or to previous problems and confusion with mixed messages.
There is always something coming up that you always thought was good for you and now they tell you that it isn't (13: female, age 68, intervention).
Social
Many of the participants referred to the demands of their work and social situations. A number had caring responsibilities. The nature of caring responsibilities means that the demands vary and where the condition of the people being cared for is deteriorating the demands are likely to increase. One participant described how her husband's progressive dementia meant that, whereas at the start of the EDIPS she could go out running, later on she was restricted by having to stay in to look after him.
That was obviously the beginnings where he was reluctant to co-operate and things like that. But he was still concerned about me going out. (for a run) But I could go and I wasn't worried about leaving him at that point. He could still get out and about and use public transport so I could think about me that year, which was just as well. But it gradually sort of slid.... In the earlier day's stages of the programme where it wasn't quite so essential that I was there with (husband), I used to fit in swimming and other things instead of the Rosemary Connelly stuff. I could do something out of the house, a bit more active. Well, Tuesdays and Fridays when (Husband) is in his day centre, that's the days I go out and I either walk or I jog. (10: female, age 60, intervention)
Another participant described the care of her elderly mother.
She has got me worn out at the minute I feel really tired and it is getting harder and harder to look after her. She is getting hard of hearing and I am having to repeat everything and repeat everything and she forgets (15: female, age 56, intervention).
Some people mentioned work issues and explained how work stress made change difficult whilst others referred to social relationships that hindered their ability to maintain lifestyle changes. There were examples where the person in charge of the family food was not the person directly receiving the intervention advice and some traditional views over portion sizes for men and an association of baking and comfort provision.
Again my wife fails me there. She thinks that I should have more than her. She puts a small portion on her plate and a big one on mine. (7: male, age 67, intervention)
There was some criticism of unhelpful or insensitive advice given by GPs.
No disrespect to him like (GP), but all he said was, em, well just watch your diet and that was all I got (3: female, age 63, control).
All he can say to me at the moment is, "Come on lose the weight, you are going to end up like your mother". He annoyed us. (15: female, age 56, intervention)
Looking back, many people were clear that they could not have undertaken major changes when their circumstances were different. Most of the people interviewed were retired and had time to devote to improving their lifestyle, but they were doubtful about the possibility of achieving behaviour change alongside work.
Your health sort of gets pushed further away as your days get filled up with work as it were (10: female, age 60, intervention).
I think in life you can cope with so many things and then it just gets too much for you. You need to deal with some things before you can move on and deal with others. (11: female, age 47, control)
Social occasions, such as Christmas festivities or parties and the associated food sometimes presented challenges.
It was just nice to do a Sunday lunch cause the family was all there so it was nice to do that. (11: female, age 47, control)
Environment
Some participants expressed concern about facilities. One person had difficulty walking and swimming was her best option, but she had transport problems getting to the pool. Another was concerned about the possible closure of a swimming pool.
I love swimming. Since I was 14 I have had a problem with my right leg and it is the one thing that I can do well. I can't walk far and I can't run but I can swim.
I am a bit worried in that Sunderland is talking about a new swimming pool and I am frightened, well concerned, that they will shut this one once the new one is built and it will probably be more like a leisure pool and you can't really swim in them. You can't get the speeds up you know. We usually find that it is best to go about three pm and then the lunch time rush is over and it is before the children come in from school. Sometimes when we go, especially when it is bad weather, there is just us two in the pool. In a way it is lovely but in another it is another nail in the coffin for closing it. I can't see two pools being run within a mile of each other. I can't see it happening. (9 female, age 57, control)
Another participant could have been discouraged from walking by a bad experience in her locality.
It just made us more wary of where I was walking. Instead of going under the underpass, it's not very big but it's an underpass and since that happening [mugged] I have walked the main road way (2: female, age 63, intervention).
Cost was a consideration for many. Even though the most common exercise of choice was walking there were still cost considerations.
I get a pension off it......not very much mind – can't buy a new pair of shoes with it, that's for sure (3: female, age 66, control)
The weather and seasons were regularly mentioned. Walking is often the cheapest and best exercise option, but poor weather can be a deterrent, especially for older people.
Props
As expected with this group, who were selected for their ability to maintain behaviour change, this category was extensive. Stimulus control and substitution, (e.g. not buying tempting foods) reinforcement management (rewards) and helping relationships were emerging themes that were regularly mentioned and anticipated from the literature. Other categories also emerged from the data analysis.
Individual physical
Biological feedback, feeling better or feeling fitter after accomplishing changes, supported change maintenance.
I just always feel good when I come out of the gym (15: female, age 56, intervention).
Being able to get the right professional help and in the example below, timely medication to help cope with a setback was important, especially where people had made the effort to change and this was being undermined by a temporary problem.
The medicine was as a result of talking to your physiotherapist and she said that I should ask for an anti-inflammatory drug, which I did (7: male, age 67, intervention).
Individual psychological
In general the tone of the interviews was positive. Problems were often cited to explain how they were able to overcome difficulties and develop strategies. For example where food was a temptation they might choose not to buy it.
Self efficacy was a theme which was expected from the literature and some participants expressed this clearly and directly.
I have a lot of will power. So I knew I could do it when I started. (2: female, age 63, intervention)
Previous success, such as with smoking cessation contributed to self efficacy and some people had already started to make diet changes previous to joining the EDIPS trial. For some talking to and encouraging themselves was important.
Well I have this little thing in me, I used to be fatter and now I'm thinner 'cause I have cut down my dinner, by a third. I would say now that it's a child's portion. (2: female, age 63, intervention)
Some had routines, such as an afternoon walk which they felt good about completing or rules for themselves about portion size which they were pleased to achieve. Some were clearly orientated to goals and others expressed a more general desire to stay on track or avoid ill health. Many mentioned the time it took, usually about two years, to absorb the changes and routines into their lifestyles.
Enjoyment of a new lifestyle, feeling pleased and rewarding themselves for maintaining a beneficial change was a strong theme. Many mentioned the satisfaction of achieving a goal, ['satisfied since you have done it'] and the way it made them feel good to have accomplished a task, ['good to be alive']. They took pride in staying on track. It was clear that in many cases the changes had become a way of life and part of their routine which they would miss if discontinued.
I look forward to them [walks] now. It gives you time to reflect on different things as you walk... ...Yes, I would miss it and I think I would be restless to get out again (8: male, age 72, intervention).
The ways in which people monitored themselves, and gave themselves permission to deviate from the norm for special occasions or made allowances for changing burdensome circumstances were recurrent themes within the data. Most people set themselves rules or routines with allowances. This emphasised the ongoing nature of change maintenance and the quite complex systems people used to maintain an equilibrium or balance between best practice and realistically achievable changes.
I think that target has pushed me or pulled me, or kept me going... ...where I might have slipped and thought I wont do this exercise today (10: female, age 60, intervention).
Many mentioned the impact of the original diagnosis of IGT as a motivating factor. Even after some years, the shock of finding out was still with them and they were usually able to recall a cautionary tale of a friend or relative, who had diabetes.
He [GP] suddenly, out of the blue came out and said, "Well you know Mrs X you are glucose intolerant". Well I didn't know and nobody had told me till then, so I was taken quite by surprise you know. Once he told me about that I walked home in a daze, I was so amazed (3: female, age 66, control).
Social
Many referred to social relationships which helped in making and maintaining change Sometimes the new regime would be keenly adopted.
So she [wife] takes an interest in what I have been told and whatever. It's good for us both, 'cause everything I do or am told to do she does (8: male, age 72, intervention).
There was appreciation of the individual professional support and the way in which this had helped them to develop self regulation strategies. Intervention group participants appreciated the motivational interviewing process.
I always feel guilty. Always, I think that she (dietician) will tell me off but she never does. She will just say "come on J what went wrong?" She will say "what went wrong?" She doesn't tell me off, but I always think I will get told off today for putting weight on. It is something in my head, but no she is lovely. We usually sit and reason it out and think well I did this or I had that. I went a bit overboard on something else you know and she would say, "What have you learnt from that?" and I will say well I shouldn't have done this and I shouldn't have done that. She gets you thinking about your food, thinking about what you eat and it's ...you know. I mean if you are going to come in thinking you are going to get wrong all the time, I mean you aren't going to come are you? We just analyse it out. It just gets you thinking about what you have done. (15: female, age 56, intervention)
Some control group participants had been helped by their GP, referred to a dietician, or independently joined a weight loss group.
The timescale for professional support reflected the time needed to absorb lifestyle change and the timeliness of the intervention in relation to life course was a strong theme.
I need somebody to keep me going, to keep me on track and make sure that I am not drifting off. I think that was the first year, but it probably rolled on into the second year. (10: female, age 60, intervention)
The trial monitoring was sometimes expressed explicitly as a motivating factor that contributed to maintaining lifestyle change.
...but, because I know that I have to come back in I have to stick to the rules so that you can check up to see if I am doing what I was told to do (7: male, age 67, intervention).
The control group only attend once a year for their review, but monitoring may contribute to control group success. This was an important finding in this study.
'Cause I get a good MOT every time I come here (6: male, age 74, control).
Quite often participants would refer with pleasure to ways in which their lifestyle changes influenced people round them. For example how visiting grandchildren would eat fruit if that is what was available and would stop looking for biscuits, or a friend or partner might be persuaded to join the gym or go walking.
Environment
A stimulating environment, ['walks along the coast'] and good facilities, ['It is a heated pool and that would be better'] encouraged exercise. Cost issues were mentioned. For example the newly introduced free bus passes helped in accessing facilities and made it easier for people to find nice places to walk.