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‘Psychological Well Being Among People Attending the
Better Health Self Management Course.’
Georgina Bancroft
Interdisciplinary Research Centre in Health
Health Intervention Team School of Health & Social Sciences
Coventry University
Interdisciplinary Research Centre in
Health
Self-management projects
Arthritis self-management programme for self-referred arthritis patients
Chronic Disease Course (LILL Project) Chronic Disease Course for Bengali speaking
participants Non-attendance on the CDSMC Exercise on the CDSMC Chronic Disease Course for heart attack patients Chronic Disease Course for MS patients Tutors self management Arthritis self-management for GP referred OA
patients
Study rationale
Studies have not compared outcomes across illness groups
UK government initiative
Group processes
Vicious Cycle Disease
Fatigue
Depression
Vicious cycle
Stress/anxiety
Tense muscles
Difficult emotions
Phase I:
A comparison of five chronic illness groups
Aim
To compare the five chronic illness groups (CFS, DM, ENDO, OP and PPS) in terms of illness symptoms, psychological well-being and self-efficacy.
Study design
Time 1 (Baseline)
CDC Time 2 (12 -
months)
CDC
CDC Assessment
Study Measures
Visual Analogue Scale (Pain)
Visual Analogue Scale (Fatigue)
Self-efficacy for Disease
Hospital Anxiety/Depression Scale
Health Distress
Sample (n=162)
Mean Age 53Disease duration (years) 16
Gender: Female 81%Ethnic origin: White/Eur. 97%Comorbidity: yes 67%
Main chronic condition
Illness
N
CFS Diabetes Mellitus Endometriosis Osteoporosis Post-polio syndrome
46
17
20
41
38
Fatigue
CFS DM ENDO OP PPS
Illness group
0.0
2.0
4.0
6.0
8.0
10.0
Pain
CFS DM ENDO OP PPS
Illness group
0.0
2.0
4.0
6.0
8.0
10.0
Anxiety
CFS DM ENDO OP PPS
Illness group
0.00
5.00
10.00
15.00
20.00
Depression
CFS DM ENDO OP PPS
Illness group
0.00
5.00
10.00
15.00
Self-efficacy: disease
CFS DM ENDO OP PPS
Illness group
5.00
10.00
15.00
20.00
25.00
30.00
35.00
Self-efficacy: symptoms
CFS DM ENDO OP PPS
Illness group
5.00
10.00
15.00
20.00
25.00
30.00
35.00
Phase II:
A qualitative study
Aim
To gain a greater insight into the group processes among participants attending the CDSMP, focusing on social comparisons.
Design, sample & analysis
The study employed a cross-sectional design, exploratory in nature. Data for Phase II was collected at one point in time following course attendance (four-months post-baseline).
A total of 15 respondents (13 women and 2 men) who had enrolled on a CDSMP were purposively selected. Interviewees had the following illnesses: CFS (n=3), DM (n=3), ENDO (n=3), OP (n=3) and PPS (n=3).
Qualitative data were analysed using content analysis (CA) and drew on some of the principles of Interpretative Phenomenological Analysis (IPA).
Social comparison theory
“Our quest to know ourselves, about the search for self-relevant information and how people gain self-knowledge and discover reality about themselves” (Mettee and Smith 1977)
“People wish to perceive themselves as superior to others and they will in fact construct perceptions of themselves and social reality that support this wish to the maximum degree that physical and social reality permit” (Goethals et al. 1991)
Social comparison theory: Health research
69% of women with breast cancer thought their prognosis was better than that of other women (Stanton et al. 1999)
73% thought they were better adjusted than other women (Stanton et al. 1999)
80% thought they were better adjusted than other women (Wood et al. 1985)
Social comparison theoryDownward comparison Downward comparisons are
overwhelmingly more frequent than upward comparisons among chronic disease populations and are related to positive affect and self-esteem
Downward comparisons may also serve to increase anxiety as they serve to highlight potential future worse deterioration
Social comparison theoryUpward comparison
Upward comparisons are a preferred source of information about effective coping and a source of inspiration and hope
Upward comparisons may also be de-motivating serving as a reminder that one is not coping as well one could or should
Themes that emerged from interview analysis:
Comparing and learning Self-evaluation Self-enhancement Personality and social
comparison
Comparing and learning (I): “You know I realised how important it is to keep it
[Diabetes] under control because I was the only one that didn’t have complications. I mean I was just on one tablet, I mean some of them were on all sorts of tablets and a lot of them didn’t have it under control and they’d got so many different complications. I felt, gosh, I felt so different when I came out I thought well, good grief, you know. I mean there was one lady who just forgot to take her tablets and you know I mean stupid things like that. But I mean others struggling with diets. So yes, it was ‘ah, if I don’t look after myself, this is where you’re going to end up you know’. I don’t know if I’ve been the lucky one and they’ve been the unlucky ones, I don’t know. I don’t know but they all seem to have a lot more problems then I had and, I just thought, that does stick in my mind”. [P4, DM]
Comparing and learning (II):
“I mean before I came back to England I didn’t even know what post-polio syndrome was. I wouldn’t necessarily have realized that such and such could be down to a post-polio thing and I would put it down to something else. Certainly being on the course, you know kind of highlighted that for me”. [P15, PPS]
“I hadn’t realised that the symptoms I had was part of the ENDO”. [P8, ENDO]
Self-evaluation (I):
“When you want to go out but you can’t and you say ‘oh my god I get that, I didn’t realise it was because of the endometriosis’. Because there are so many different aspects of the disease you start to worry if it’s the endometriosis that’s making me feel this way. And then when you have 12 people that are all saying, yes, I feel that then you feel better already, and you know you’re not the only one. So I think the sharing yeah, that’s a great benefit. The sharing and the understanding that we all have these certain things. [P9, ENDO]
“I didn’t feel as if I was mad anymore because every doctor I’d ever been to made me feel as if it was all in my head. But I was in a room full of women who had exactly the same problems as me”. [P8:ENDO]
Self-evaluation (II): “I think there are a lot of people that were on the course
who got a lot out of it because they realised that they weren’t the only ones with similar types of problems. I think collectively you get something out of it don’t you, whereas individually you perhaps don’t gain so much. You sort of say ‘oh yeah, that’s a good idea’”. [P13, PPS]
“Well, yes, in so much as they've [doctors] been asking me to change my insulin for quite a while and it was only speaking to other people [on the CDSMP] and realising that the insulin I was using was getting a bit out of date and I needed updating with it. It was only by speaking to other people and saying well yes, ‘I'm alright even though any change you are rather feared a bit’. Going into the unknown, changing from one machine to another but yes, I did do it and I think it was through gaining confidence on the course that gave me the well you must do it”. [P5, DM]
Self-enhancement (I): Comparison
“Well again I felt incredibly lucky because I could actually use incredibly simple things to manage the pain, whereas a lot of them seemed to be totally intolerant to just about everything, which is disastrous. I mean I don’t know what I’d do if I was still waking up and feeling like someone was stabbing me in the legs. So it’s like a dreadful nightmare”…lt made me feel sort of better, you know, what are you complaining about, all these people, in wheelchairs or whatever”. [P2, CFS]
“Well some were wheelchair bound, you know, so obviously I’m better then that. I felt I was at the very top because of all the things, that I’ve kept up”. [P12, OP]
“I’d always been recommended to go on an exercise course, which is what I do. I have a relatively good amount of movement, which is good. A lot of other people actually weren’t doing anything, so they didn’t have very much movement, and they looked to me, I mean in the six-weeks that we had the course, it looked to me they hadn’t fully maintained their upright stature, you know. I know, I know, I try to sort of relate it just to myself, and sort of say but for the grace of God I could be like that, I’m jolly well going to make sure I exercise all the time and not give in to it and I want to sort of maintain as much of a healthy lifestyle as is possible, you know”. [P10, OP]
Self-enhancement (II): Comparison
“I mean there was a couple of people there you know, who’d got HIV from being given infected blood and how somebody like that can stay so positive and optimistic and forward looking and you know not be bitter. You know somebody like that can be happy and positive, for goodness sake so can I”. [P3:CFS]
Self-enhancement (III): Not all comparisons are beneficial!
“In some ways I envied them because they often lived with someone and obviously that meant there was help”. [P1, CFS]
“People had goals for example of filling the freezer up with meals and I said I can have that as a goal but I can’t cook the meals and I haven’t got any home help and they couldn’t relate to somebody not even having a family to help them”. [P7, ENDO]
“I was one of the worst because I have to walk with 2 sort of sticks and there were ladies there that were walking not too bad, they were in their first stages. They were interested in the fact I’d had it so long and I’d got to the stage I was and they wanted to prevent getting like I am”. [P11:OP]
Self-enhancement (IV):Finding something to focus on
“Well I think there were some that were better physically but actually having coped not that well. I realised how mentally strong I was, but then again I’ve had it for longer then a lot of people now, so I’ve adjusted a bit more I think. Physically though, I was a bit more conky than a lot of them, but mentally I was doing a bit better”. [P9, ENDO]
Social comparison and personality:
“I always felt, people will say, that people who have had polio are more resilient and have got more sort of determination about them and they have got that sort of get up and go sort of attitude. Not one of the participants with polio actually said they had suffered at all from the effects of depression. That was an interesting talk, but whether that has anything to do with the symptoms of disease I am not sure, but whether or not we are more optimistic than most disabilities I don’t know, but it’s an interesting thought”. [P13, PPS]
Conclusions
The current results confirm that a self-management course can provide a unique opportunity for people with chronic illness to compare themselves with each other.
Phase III:
12-month follow-up
Aims (i) To compare the change over time across five
chronic illness groups on illness symptoms, psychological well-being and self-efficacy, 12-months following attendance on the CDSMP.
(ii) To determine whether there are differences in personality traits across five chronic illness groups.
(iii) To explore whether personality is associated with change over time on illness symptoms, psychological well-being and self-efficacy.
Fatigue (Scale 0-10, =better)
CFS DM ENDO OP PPS
Illness Group
-2.5
-2.0
-1.5
-1.0
-0.5
0.0
0.5 Mean
upper limit 95% CIlower limit 95% CI
mean change score
Fatigue
Pain(Scale 0-10, =better)
CFS DM ENDO OP PPS
Illness Group
-2.0
-1.0
0.0
1.0 Mean
upper limit 95% CIlower limit 95% CI
mean change score
Pain
Anxious mood (Scale 0-21, =better)
CFS DM ENDO OP PPS
Illness Group
-2.0
-1.0
0.0
1.0
Mean
upper limit 95% CIlower limit 95% CI
mean change score
Anxiety
Depressed Mood (Scale 0-21, =better)
CFS DM ENDO OP PPS
Illness Group
-3.0
-2.0
-1.0
0.0
1.0 Mean
upper limit 95% CIlower limit 95% CI
mean change score
Depression
Self-efficacy: Disease(Scale 5-35, better)
CFS DM ENDO OP PPS
Illness Group
-2.0
0.0
2.0
4.0
6.0
8.0 Mean
upper limit 95% CIlower limit 95% CI
mean change score
Self-efficacy: Disease
Self-efficacy: Symptoms (Scale 5-35, better)
CFS DM ENDO OP PPS
Illness Group
-2.0
0.0
2.0
4.0
6.0
8.0 Mean
upper limit 95% CIlower limit 95% CI
mean change score
Self-efficacy: Symptoms
The “Big-Five” Neuroticism- Characterized by negative affectivity,
nervousness and often refers to maladjustment
Extraversion- Refers to energy or enthusiasm, which is often displayed interpersonally in sociability and dominance in high activity level and cheerfulness
Openness- Refers to individuals who are imaginative, aesthetically sensitive and intellectually curious
Agreeableness- or altruism is a dimension that determines trust, sympathy and cooperation
Conscientiousness- refers to control and encompasses a sense of competence and sense of duty, need for achievement, organization, planning and self-discipline
Neuroticism
CFS DM ENDO OP PPS
Illness group
20
30
40
50
60
70
80
90
Extraversion
CFS DM ENDO OP PPS
Illness group
20
30
40
50
60
70
80
90
Openness
CFS DM ENDO OP PPS
Illness group
20.00
30.00
40.00
50.00
60.00
70.00
80.00
90.00
Associations: personality & change over time
Personality/Outcome
N E O A C
Fatigue .00 -.10 -.04 -.12 .03
Pain .02 -.15* -.07 -.08 -.07
Anxiety .05 .04 -.14* -.06 .11
Depression -.13 -.13 -.26** -.09 .08
Self-efficacy: disease
.02 -.01 .09 .05 .05
Self-efficacy: symptoms
-.01 .06 .21** .20** .03
Limitations
Small sample size
Floor effects
Volunteer bias
Conclusions Results showed that 12-months following attendance on the CDSMP, there
were differences both within and across illness groups on illness symptoms, psychological well-being and self-efficacy. Reassuringly, most groups improved in the expected direction. Participants tended to report improvements across the study variables that were most pertinent to their specific illness. For example, participants with CFS reported significant improvements in fatigue; likewise participants with ENDO, for whom pain is the greatest symptom, reported significant improvements in pain.
This is the first study to examine the ‘big five-factors’ of personality among participants attending the CDSMP. Results showed that there were statistically significant differences both within and across illness groups on the ‘big five-factors’ of personality. Moreover, significant associations were evident with regard to illness symptoms, psychological well-being and self-efficacy. Of interest was that personality was associated with change over time. These findings are unique in that they extend the current evidence base by comparing CDSMP participants from five chronic illness groups by focusing on personality.
Future research suggestions
Personality and the CDSMP
Overall conclusions from PhD:
The findings clearly suggest that a generic intervention that focuses on common illness related problems (such as fatigue and pain) might be effective in terms of change over time on illness symptoms, psychological well-being and self-efficacy among participants from five chronic illnesses groups, attending illness specific courses.
Social comparison and personality may mediate outcomes following attendance on the CDSMP
Self-management opportunities @Arthritis Victoria
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