The dimensions identified in the interview data relating to the ‘Long term regimen’ concept were: compliance with the recommended regimen, and views held about possible future changes of regimen (see Table 7).
TABLE 7: The ‘Long term regimen’ concept: dimensions Dimension 1 - Compliance
Dimension 2 - Future changes of regimen
The dimension o f compliance
Compliance with the various aspects of a prescribed regimen may require high levels of motivation. Although the measurement of non-compliance is problematic, reports in the literature suggest the incidence of failure to adhere to
proscribed regimens is high (Ley, 1988; Roth, 1987). The underlying causes of non-compliance with a medical regimen are likely to be a complex interaction of factors in the lives of the individual, factors such as financial costs, the interference with social and/or psychological events, and the levels of skill required. The level of compliance may depend on the balance of such costs and the perceived benefits of improved health and prognosis.
The data of the present study suggested that the level of compliance of both groups was in line with the low levels reported in published research (Ley, 1988). The routine regimen for those with CAH consisted of taking tablets usually twice a day. Almost half of the CAH group spoke about times when they omitted taking their daily tablets:
Yeah, I quite often forgot now and then, but it doesn't seem to matter (C07)
1 used to keep forgetting fairly often- my God I suffered because o f it!! 1 once gave up taking them fo r three weeks- it took me two months to get back to normal. (C l 5)
I hadn't been taking enough ‘cos I hadn't bothered seeing anyone, I neglected m yself (C34)
The most frequent reason given by those with CAH for this non-compliance was 'forgetting*. However, in line with the previous finding of low levels of understanding the rationale for treatment, almost three-quarters of the CAH group were unsure as to the efficacy of the prescribed medication. Some of the stated reasons for instances of the omission of medication appeared to be related to this low level of confidence; this was construed by the women as 'testing the tablets’:
I don't know what the side-effects o f my tablets are, I wanted to fin d out how serious, how bad it could be [ if I didn't take them],(Cl5).
In addition to efficacy of the medication, those with CAH expressed some concerns about medication side effects. One side effect, attributed by the women to ‘the steroids', was very distressing for those on medication for CAH. The side effect was the commonly seen increase in body weight, and the belief that this was due to the tablets, together with the low level of perceived efficacy of the treatment may have increased the likelihood of non-compliance. Failure to comply with the prescribed regimen for CAH might take some time to show its effects and might also be an additional factor to those already mentioned
Management of diabetes, in contrast to CAH, is a task that requires constant vigilance. It involves the acquisition of new knowledge, new skills and strategies commonly aimed at the correction of both high and low blood glucose levels. These strategies comprise a collection of complex cognitive and behavioural skills, and include the understanding of the action of insulin, food composition and the effects of exercise. The necessity of eating at regular times, and the availability of carbohydrate supplies to avoid hypoglaecemic attacks were given as the most frequent regimen problems, particularly when the women were engaged in sports, social outings or were responsible for children. The women also recalled regular meals and emergency carbohydrates as important demanding requirements during childhood.
It might be anticipated that non-compliance with such a complex regimen might be common. Non-compliance with the proscribed regimen for diabetes is commonly held by the medical profession to be the cause of failure to maintain consistently acceptable levels of blood glucose. The women in the study were aware of the advisability of this goal although it appeared that it was rarely attained:
It's too high [my HBAIC], about thirteen I think. It should be six or seven. It's been unbalanced fo r so long, and not enough exercise. I know what I should do but I can't be bothered. (D26)
I tend to stay on the high side for insurance [against hypos] (D02).
M y control is not wonderful, very up and down cos I'm lazy and don't want it [diabetes] zff^cting things. High sugars are better than having hypos all the time. (D26)
For this group of diabetics, it would seem that the avoidance of hypoglaecemic attacks was considered to be of more importance than the low blood glucose levels advised by the doctors at their diabetic clinics. This avoidance was frequently the major criterion for decisions about eating behaviours rather than the avoidance of long-term complications. It was these considerations which determined blood glucose levels rather than carelessness about, or disagreement with, the goals set by their doctors (Marteau et al 1986).
It is not surprising therefore that experiences of 'hypos' were currently rarely a problem for these women:
not had one fo r eight years (DOI)
sometimes minor ones in the night, I just have a biscuit
The implication of the outcome of persistently high blood glucose levels for the development of diabetic complications was also well understood by those in the diabetic group:
As I've been so uncontrolled fo r so long is it cutting my life span down? (D28).
In summary, it appeared difficult for the women with diabetes to comply with the goal of consistent blood glucose at the level recommended by their doctors. The cost of this in terms of possible hypoglycaemic attacks was seen by the women as too great, especially when other responsibilities or demands were involved. In the short term, failure to comply with the demands of the regimen was less noticeable for the CAH group; for them, compliance would therefore be more likely to depend upon the understanding of their condition and the role of medication in the control of the effects of hormonal imbalance. In particular the self-report of the total omission of the medication by some women with CAH is of concern.
The dimension offuture changes o f regimen
Neither group believed their regimen would materially change in the future. The CAH group believed that there would be little medical progress that might lead to regimen changes:
7don't think anyone will be able to do anything' (C23)
Once again this may have been related to their general lack of information about all aspects of the condition. The lower public profile of CAH than diabetes
would add to the considerable difficulties of the women with this condition in becoming aware of any ongoing and/or proposed research. In contrast, women with diabetes were well informed about research into their condition, and were more positive about future possibilities. They felt that medical research would produce advances in both the prevention and management of the condition, even if they were not optimistic that such advances would be achieved in time to be helpful for them:
With modem technology it's going to get better (D14).
They were confident that there would be improved long-term prognosis, and increased availability of alternative techniques for the management of diabetes:
1 heard about the nasal spray - good idea. 1 would use a
pump, and transplants will be more available - I might have one. (D30).
They believed that advancement was most likely to be made in the area of genetic research, and that this would allow the identification of those at risk:
Don't think there will be a cure - they may be able to
prevent it, give relatives a test to see i f [they are] going to develop it. (D25)
The concept of long term regimen then, contained two dimensions: the levels and difficulties of compliance with the required regimen, and the perceived possibility of fiiture changes in medical management. Both groups of women appeared to have some difficulty meeting the goals set by their medical experts, but the failures of both groups could be attributed to factors other than carelessness or disagreement with goals set.