Background
Achieving participation and self-management: the role of empowerment
‘the patient as expert and partner in care is an idea whose time has come, and has the potential to create a new generation of patients who are empowered to take action to improve their health in an unprecedented way’ [4].
An enabling process or outcome arising from communication with the health care professional and a mutual sharing of resources over information relating to illness, which enhances the patient’s feelings of control, self-efficacy, coping abilities and ability to achieve change over their condition.
The need for a measure of patient empowerment
Aims of the current study
Methods
Study 1: qualitative study
Participants
Interviews
Data analysis
Study 2: quantitative study
Item generation and pilot testing
Validation survey
Statistical methods
Constructed meaning
Self efficacy in long-term conditions
Patient assessment of chronic illness care (PACIC)
General practice patient survey (GPPS)
Patient enablement instrument (PEI)
Patient demographic and clinical characteristics
Predictor | Predicted relationship with: | Supporting empirical and theoretical references | |
---|---|---|---|
Total score
|
Dimensions
| ||
Presence of depression as a long-term condition |
-
|
-
| |
Number of long-term conditions |
-
|
-
| [31] |
Duration of long-term condition |
+
|
+
| |
General health |
+
|
+
| |
Identity (Constructed Meaning scale) |
+
|
+ (I)
| |
Self-efficacy (Self-efficacy in Long-Term Conditions Scale) |
+
|
+
| |
Patient enablement (PEI) |
+
|
+
| |
Quality of chronic care (PACIC) |
+
|
+
| |
Continuity (GPPS) |
+
|
+
| |
Continuity (GPPS preference) |
+
|
+
| |
Interpersonal care (GPPS) |
+
|
+ (KU)
| |
Interpersonal care (GPPS confidence) |
+
|
+
| |
Gender | 0 | 0 | |
Age | 0 | 0 | |
Ethnicity | 0 | 0 | |
Living arrangements | 0 | 0 | |
Education |
+
|
+
| |
Current work |
+
|
+ (KU, EO)
|
Results
Study 1: qualitative study
Sample characteristics
Understanding empowerment from the patient perspective
Identity
I’m still working the same. I have the same thoughts and I just carry on. If it hurts stop, have a rest then carry on. But don’t just, I never er just pack up doing a thing. If I can’t do it, I’ll sit down and think of ways around it and explore all avenues. So that’s just the natural thing you know. I don’t know if a lot of people if they got the arterial problem, they’d say ‘oh I won’t do anymore’ well that’s not me, it’s ‘right, I’m getting pain here so let’s see what we do about it, let’s see how much I can do’ work things out you know. But I don’t let things get me down like that. I seem to be good at that. I’m in charge of me self, I control me body and I say you know, you’re going, and we do (P06, type 2 diabetes/arterial sclerosis).I have to accept it is part of my life, it would be foolish to pretend it wasn't, but I try not to let it dominate it, it becomes more a feature of it, like exercise ought to be the part of everybody's life and it is a part of mine. Eating sensibly and healthily ought to be what everybody does and that’s what I am, that's what I try to do you know (P16, asthma/angina/chronic back pain).
Knowledge and understanding
I: Have you ever looked at any health information online?R: No.I: Have you ever thought about it?R: No. I think I know enough about me. So that’s the way I work (P12, type two diabetes/irritable bowel syndrome).
My first port of call probably would be the Internet, because it's the greatest source of knowledge… If I saw something that I would want to look into and check it out I make sure it's valid information… I'd probably go to the internet first and then I would probably go, if I did have a burning issue or anything, then I would email - there is a diabetes nurse - or I'm trying to think who else I know, because I lived in America for a while, and there are Diabetes Educators they call them there (P04, type 1 diabetes).
Personal control
I don't let it run my life for me. It hasn't really impeded what I do. I don't automatically think ‘I can't do that because I have diabetes’. I am much more likely to think ‘is it possible for me to do that?’ You know, if I fancy doing something, I'll do that. Like as you would do with anything - weigh up the benefits of it against the downside and we all have some sort of, risk management and how we engage with our lives, whether you choose to do something or not (P14, type 2 diabetes/chronic back pain).I take some pills in the morning and some in the afternoon, some after lunch and some in the evening. So I’ve got it spread on different tables. The pills on that table are for the morning, and on another table are for the evening, it’s because I’m on a lot of pills, unfortunately I’m on about sixteen a day… when my memory fails me I will have to write it down but so far it’s good just by placing them in different rooms (P11 type 2 diabetes).
Decision making
I: Have you heard about self-management programmes that you can go to?R: I've heard of it like, you know, I've got the leaflet from me GP, to go for breathing exercises and all that.I: Would you ever, is that something that you would ever go to later on, do you think?R: Like if I got worse I'd probably go I think because they'd show you how to take inhalers proper, and this and that, and your breathing and all that, well at the moment, I do all that me self (P02, silicosis/back pain).When I go to the lung clinic, if they say something, then I’ll try it and if it doesn’t suit, then I’ll tell them that I can’t do it and that’s the end of it… you can only do so much can’t you (P07, asthma).They [HCPs] packed me off to see a physio and he gave me a series of exercises and I have carried on doing them every single day since, because they help me mobilise and move about. So it is just part of the routine (P14, type 2 diabetes, chronic/back pain).
Enabling others
Because of life’s experience of what I’ve done, people who say ‘I can’t do such a thing’, ‘well have you had a go?’, ‘No’, ‘well how do you know you can’t do it?’, ‘well I don’t think I can do it’, ‘well have you tried?’ ‘well no’, ‘well try it’, ‘well what if I can’t do it?’ ‘Then sit down and think is there a way around it’. You know ‘you keep the brain going’. And ‘what was the problem?’ ‘well it was this…’, ‘right well I have found a way around that, so try such a thing…’ (P06, type 2 diabetes/arterial sclerosis).
That's me lists of tablets [picks up a ring-binder file containing colour coded charts for each condition] and then that's the daily tablets and that's me stats. I find this works for me, I mean, it shows what I take, so I take that into the Friday club to show um, but I never say, you should do that… but that, that works for me. Some thought it was very good; some thought it looked very difficult (P09 type 2 diabetes/COPD/recent lung transplant).
Study 2: quantitative study
Sample characteristics
Number (%) | |
---|---|
Mean (SD) | |
Range | |
*Demographic characteristics: | |
Female | 102 (52.8) |
Age (years) | 62.8 (14.3) |
22–88 | |
White | 172 (89.7) |
No qualifications | 71 (37.5) |
Retired from paid work | 102 (53.1) |
Home owner | 110 (57.3) |
Long-term characteristics: | |
Diabetes | 91 (46.2) |
Chronic obstructive pulmonary disease | 26 (13.2) |
Coronary heart disease | 33 (16.8) |
Irritable bowel syndrome or abdominal (tummy) problems | 43 (21.8) |
Chronic fatigue syndrome, myalgic encephalomyelitis or fibromyalgia | 6 (3.0) |
Arthritis or painful joints, back trouble, osteoporosis | 103 (52.3) |
Heart problems or high blood pressure | 104 (52.8) |
Anxiety, depression or stress | 53 (26.9) |
Multiple sclerosis | 2 (1.0) |
Asthma | 31 (15.7) |
Other long-term condition (not listed) | 49 (24.9) |
Number of long-term conditions | 2.8 (1.5) |
1–5 |
Factor structure
Empowerment factor label and item (tested empirical dimension) | Factor 1 | Factor 2 | Factor 3 |
---|---|---|---|
Positive attitude and sense of control
| |||
I feel useful in my daily life despite my condition (I) | .814 | ||
I feel I have a very good life despite my health problems (I) | .802 | ||
I feel like I am actively involved in life despite my health problems (I) | .790 | ||
I can live a normal life despite my condition (I) | .785 | ||
I am still doing interesting things in my life despite my health problems (I) | .744 | ||
I have plans to do enjoyable things despite my health condition (I) | .739 | ||
*My health problems stop me from enjoying my life (I) | .703 | ||
I have a positive outlook towards my condition (I) | .701 | ||
I find my health problems take over my life (I) | .673 | ||
I feel a sense of control over my condition (PC) | .672 | ||
I have a hopeful outlook towards my condition (I) | .668 | ||
I am capable of handling my condition (PC) | .661 | ||
I can minimise the impact of my symptoms on my life (PC) | .655 | ||
I feel there is purpose and meaning in my life despite my health problems (I) | .623 | ||
*I live my life one day at a time because of my condition (PC) | .581 | ||
I actively manage my condition (PC) | .553 | ||
I am satisfied with my control over the symptoms of my condition (PC) | .553 | ||
Knowing more about my condition helps me to manage it (KU) | .521 | ||
I have the skills that help me feel in control of my condition (PC) | .518 | ||
I try to make the most of my life despite my condition (I) | .493 | ||
Without my health problems I could achieve more (I) | .489 | ||
Knowledge and confidence in decision making
| |||
I know enough about my condition (KU) | .747 | ||
I have all the knowledge I need to manage my condition (KU) | .704 | ||
I understand my condition (KU) | .657 | ||
I would feel able to refuse a decision made by my doctor concerning my treatment (DM) | .590 | ||
I know how to handle difficulties related to my condition (PC) | .582 | ||
*I find it difficult to ask my doctor to change my treatment (DM) | .543 | ||
I have information to handle difficulties related to my condition (KU) | .425 | .517 | |
I know how to control my health problems (PC) | .448 | .494 | |
I participate in decisions concerning my health care (DM) | .493 | ||
I am confident choosing among different treatment options related to my condition with my doctor (DM) | .490 | .430 | |
I know what my test results mean (KU) | .442 | ||
I know where to go to find something out about my condition (KU) | .426 | ||
I can talk to my doctor if I change my mind concerning my treatment (DM) | .407 | ||
Enabling others
| |||
I need to know what is happening to me and why (KU) | .686 | ||
I have helped people who have similar conditions find different ways to cope (EO) | .627 | ||
I have shared my experience of managing my condition with other people with health problems (EO) | .627 | ||
I feel frustrated for other people who are struggling with similar conditions (EO) | .611 | ||
I have shared with others how I keep myself well (EO) | .585 | ||
I would acquire more health information when needed (KU) | .558 | ||
I am aware I can change my mind about a treatment (DM) | .541 | ||
I am aware I can choose different treatment options (DM) | .406 | .506 | |
*I’m not bothered about understanding health information (KU) | .498 | ||
I often request additional health information from my doctor (DM) | 487 | ||
I would refuse a treatment if I thought it was not the best thing for me (DM) | .458 | ||
I have shared my understanding of my condition with people who have similar conditions (EO) | .423 | ||
People who are struggling with similar conditions often ask me for advice (EO) | .421 |
Reliability
Construct validity
Predictor | Predicted relationship with total score |
β, 95% CI, P | Empirical relationship with total score |
---|---|---|---|
1. Presence of depression as a long-term condition |
-
| −6.98, (−15.92, 1.96), 0.13 | 0 |
2. Number of long-term conditions |
-
| −4.96, (−7.95, -1.97)** |
-
|
3. Duration of long-term condition(s) |
+
| 0.46, (0.07, 0.85)* |
+
|
4. General health |
+
| 11.65, (7.92, 15.38)** |
+
|
5. Identity |
+
| 4.64, (3.96, 5.33)** |
+
|
6. Self-efficacy |
+
| 1.76, (1.44, 2.08)** |
+
|
7. PEI |
+
| 2.09, (0.85, 3.33)** |
+
|
8. PACIC |
+
| 0.65, (0.42, 0.87)** |
+
|
9. Continuity (GPPS) |
+
| 6.49, (−2.87, 15.84), 0.17 | 0 |
10. Continuity (GPPS preference) |
+
| 22.72, (11.57, 33.86)** |
+
|
11. Interpersonal care (GPPS) |
+
| 0.91, (0.28, 1.54)** |
+
|
12. Interpersonal care (GPPS confidence) |
+
| 16.09, (−1.83, 33.99), 0.08 | 0 |
13. Gender | 0 | −0.01, (−0.04, 0.02), 0.49 | 0 |
14. Age | 0 | −0.00, (−0.03, 0.02), 0.51 | 0 |
15. Ethnicity | 0 | 15.25, (0.54, 29.97)* |
+
|
16. Living arrangements | 0 | −17.73, (−26.63, -8.83)** |
-
|
17. Education |
+
| 19.18, (9.83, 28.54)** |
+
|
18. Current work |
+
| 14.41, (−8.21, 37.03), 0.21 | 0 |