Support for the elements of the model

(i) Representations

In all studies, people responded positively to questions about representations and held representations of their condition. In addition to providing support for previous research in confirming the importance of identity (Leventhal & Nerenz,1985), this study suggests that consequences appear to serve a similar function in chronic illness to that served by symptoms, with nearly everyone in all studies reporting some consequence. Over half the people in all studies attributed a cause, with fewer believing in a cure or any improvement.

The finding that between 40%-64% of people had accurate disease labels before coming into hospital for tests and investigations for all conditions supports Shober & Lacroix's (1991) statement that people are capable of making informed diagnostic judgments. Results from this study also suggest that limitations, or restrictions in daily activities, provide additional

information upon which people base their diagnostic judgments. Over half the people in all the studies described symptoms, being told one had an illness did not appear to increase

symptomatology (study 1) as found by Pennebaker (1984). In all studies and at all times there was a positive relationship between the number of symptoms and the number of limitations, with a similar increase in limitations to that reported for symptoms being found in the later stages of the illness (study 3).

Approximately half the people in all studies attributed a cause, which ranained relatively constant over time (study 1). This fînding is interesting as the diagnosis of a chronic illness did not set in motion the psychological process of searching for a cause as proposed by Timko & JanofT-Bulman (1985), as this search clearly pre dated diagnosis for a large number of

respondents. As yet lifestyle has not been implicated as a cause in any of the migor neurological illnesses, and in the case of MS and MND, the aetiology of the diseases are still largely unknown. Despite this a substantial proportion of people had postulated a cause.

All reported some consequence, either perceiving their condition to be serious, or resulting in some d^ree of limitation or specific problans and difficulties. In all studies there was a positive relationship between the number of symptoms and the number of limitations reported, one possible explanation for this could be that for chronic, progressive illness, limitations, in addition to symptoms, provide continual and readily available information for monitoring and evaluating the impact of the illness.

Few people believed in a cure or the likelihood of any improvement occurring. Cure has been a more uncertain elonent in the representations and does not feature in Leventhal's (1984) model, but was introduced by Lau & Hartman (1983) who did not study chronic conditions but conditions people recovered from. They have suggested that cure may be a representation of people who have recovered, or for whom recovery is a possibility, and therefore less applicable in chronic illness, this study supports this contention.

(ii) Coping

Nearly everyone was taking some kind of action to manage their condition, the most frequent in the early stages (study 1) being to increase understanding, with only one person at the later stage of the illness (study 3,MS2) reporting having "too much" information. This lends support to the importance of information in the process of self-regulation. There has been considerable discussion in the coping literature about which forms of coping are adaptive (Felton &

Revenson,1984). This study was consistent with Earll et al (1993) in a study of patients with MND in finding no evidence of some coping styles being associated with better «notional outcomes than others. The number and variability of coping actions at all times in this study showed very few people to be using avoidant coping. The results may reflect effective coping with a long-term stressor, as postulated by Suis & Fletcher (1985) and this interpretation would be borne out by the relatively low scores on emotional distress in this population engaged in long-term coping.

While coping actions were varied and numerous, social support became more frequent as a coping resource at the later stages of illness (study 3), both greater numbers and satisfaction with social support was associated with better psychological outcomes, though not better physical outcomes. Perhaps this is not surprising as social support can be seen as «notion focussed coping (Payne & Jones, 1987) which tends to predominate when people feel that the stressor is something to be endured, while problem focussed coping predominates when people feel that something constructive can be done (Folkman & Lazarus, 1989). The correlation between number and satisfaction is consistently high and Sarason et al (1983) suggest that while the two components are conceptually separate, they are frequently correlated. Based on the data from this thesis, it may be that in these diseases people who offer support offer high quality support.

(iii) Evaluation of coping

Nearly everyone evaluated their coping efforts positively, over 90% of people in all studies evaluated themselves as having managed "Very Well". One possible explanation is that, with no standard against which to evaluate that coping, these assessments were simply inaccurate. A

bias towards positive evaluations would serve to bolster self-esteem and possibly enhance coping. However, although this may explain some bias, there is evidence that these evaluations did relate to objective assessments as there was good agreement in all studies between

subjective evaluation of coping and the interviewers evaluation on the GAIS. Other evidence of the meaningfulness of the discriminations made in the evaluation of coping lies in its prediction of outcomes.

Bias to positive evaluations occurs in other types of measures, most notably satisfaction with medical care. It is not clear whether such evaluations imply comparison with some other

standard, coping with MS was good compared with coping with other life events, or whether the results are due to social desirability bias. It is also possible that evaluating coping positively is a coping response.

(iv) Outcome

While the msgority of people in all studies reported feeling n^atively about themselves as a result of their condition, emotional outcomes did not indicate high levels of «notional disorder, the percentage of people classifîed as clinically anxious and depressed for all studies being less than that expected in a medical outpatient population (Zigmond & Snaith,1983). Results from study 3 are consistent with earlier research showing increased severity of disability to be associated with poorer psychological outcomes (Counte et al,1983).