1) The document summarizes a study exploring the illness experiences of individuals with chronic kidney disease through interviews over one year. 2) A core category of "enabling/disabling" was identified, relating to six health-related life skills that determine whether chronic kidney disease is properly identified, managed, and individuals are supported in learning to live with the condition. 3) Findings showed a lack of awareness and recognition of chronic kidney disease among participants and healthcare providers, and different coping strategies used by individuals to manage their condition.

1. The user’s voice: an instrument for learning about the management of long term conditions Dr. Jane Bridger Research Associate University of the West of England, Bristol

2. Overview of the presentation An overview of the study Presentation of theory developed Discussion of the core category (enabling life skills) identified Application of core category (the patients voice), with illustrations Conclusions

3. Why bother with the users voice? CKD does not follow traditional models of illness cognition; Lay referral, comparison, and subsequent affirmation from self and significant others are key triggers for illness recognition ; There is a paucity of signs & symptoms; We need to explore users experiences.

4. Research Questions What is the illness experience of individuals with chronic kidney disease? How can the insight gained inform future interventions for illness and disease risk reduction with regards to chronic kidney disease?

5. The study Longitudinal study over one year data collection commenced 11/04, concluded 03/06; Grounded Theory methodology; Exploring the illness experience of adults with early to moderate chronic kidney disease; Recruitment from 2 GP practices in south-west England (total lists approximately 28,000 patients); 23 participants recruited from a sample of 119 (Only one with recorded diagnosis of CKD) Age range from 35-84 years, all HT, 48% DM).

6. Data collection Stage One: Semi-structured interviews using a model of chronic illness perception, 5 stage framework (Horne and Weinman, 1994). Journal as aide memoir (23/23); Stage Two: (@ 6 months) Unstructured interviews determined by theoretical sampling with feedback on analysis to date (18/23); Stage Three: (@ 12 months) Unstructured interviews (+/- drawing) with feedback on analysis and theory development to date (19/23).

7. Participants knowledge of CKD 23 Participants 7 had knowledge of kidney problem 6 had knowledge of related issue e.g. protein in urine 10 stated no knowledge of a kidney problem

8. Healthcare centred Collaborative communication Language of illness Affirmation Person centred Personal health role Personal Coping style Language of illness Affirmation Social comparison Collaborative communication Socially centred Social comparison Language of illness Affirmation Phase One Oh what kidney problem? Phase Two Finding out about CKD and more … Phase Three Learning to live with CKD Categories Beginning of the kidney problem; Visibility and recognition of CKD; Diagnosing the problem . Categories Illness experience of CKD.. or not?; Feedback about CKD; Managing and monitoring the situation; Relationships with HCP ’ s; The care environment Categories Learning to live with CKD; Gauging change in status; Individual illness experience of CKD The core category: the enabling<>disabling continuum The illness experience of CKD

9. Affirmation Language of illness Person Centred Healthcare Centred Social world Centred Social comparison Personal health role Personal coping style Collaborative communication Core Category: Enabling/Disabling Jane Bridger © 2008 Six health related life skills inter-relating with the users world

10. “ R no, I don’t think nothing about it, because I have no pains at all, I have nothing that can indicate that at all, that there is something wrong with my kidneys.” (CM Interview Two) Application of Core Category: Enabling/Disabling affirmation; personal health role; social comparison. Visibility and recognition of CKD

11. “ It's hereditary, runs in the family, my grandmother had it, my father’s had it, my brother’s got it….” (LF Interview One) “ I think it’s different than being singled out isn’t it, and coming out of the blue. It wasn’t such a surprise for me really, so.” (LF Interview Three) Application of Core Category: Enabling/Disabling affirmation; social comparison; personal health role, personal coping style; Visibility and recognition of CKD

12. “ I With respect to the kidneys, what have they said about the kidneys R Nothing, only this bit here, check her U&E’s. But I don’t know what they stand for… I know they had checked them, and I take four of these Furosemide each day, I don’t wee if I don’t take them now”. (JJ Interview One)”. “ R I don’t think it has ever been discussed, oh yes, oh your kidney function is not very good or whatever.. She has never said we shall have to keep an eye on this, you’re heading….. I don’t know whether they tested it before, but that was when they started, in May 2004.” (JJ Interview Two) Application of Core Category: Enabling/Disabling affirmation; collaborative communication; coping style; language of illness; personal health role. Diagnosing the problem

13. “ The previous consultant realised I had a problem, and started to see me every three months, and each time the problem was there, and then he was the one that referred me.” (FW Interview Two) Application of Core Category: Enabling/Disabling affirmation; collaborative communication; coping style; language of illness; personal health role. Diagnosing the problem

14. There was a lack of awareness of kidney problems amongst participants, who also did not know others with CKD; Where identified, signs and symptoms were commonly not recognised (self, others, HCP), not revealed to the concerned individual (HCP), or not managed appropriately; Active strategies by HCP to identify CKD are essential. Findings

15. “ R I have been told what has happened I do not really want to know what is wrong with me. They have said if they can hold things in this way, and I have said thank heavens for that. I hope this is going to be all right, give me some tablets, and that’s it. I take the tablets and go back for checkups, and that’s fine.” (JH Interview One) Managing and monitoring the situation Application of Core Category: Enabling/Disabling collaborative communication; coping style; personal health role.

16. “ The Professor sent a letter to everybody saying he had got me where he wanted me with regards to my BP.” (FW Interview Two) “ I actually believe that physical exercise does help bring the BP under control. I believe it does because I haven’t looked back for some time now.” (FW Interview Three) Managing and monitoring the situation Application of Core Category: Enabling/Disabling Affirmation; collaborative communication; coping style; language of illness; personal health role.

17. “ I have to re-affirm that every time I see them, and they say about putting me on tablets. I say look, I don’t like taking tablets because this is how I got in this position in the first place, I wouldn’t be here if it wasn’t for taking tablets that you guys gave me. I just feel that every time I have to say that which is quite sad really.” (RW Interview Three) Application of Core Category: Enabling/Disabling Affirmation; collaborative communication. Relationships with healthcare professionals

18. “ R oh yes, he goes through the whole lot, it’s a worthwhile chat, he talks to you about the situation….and you have got trust. You feel he is doing something for you. Well he has, its not you feel it, you know he has.….” (FW Interview Two) Relationships with healthcare professionals Application of Core Category: Enabling/Disabling Affirmation; collaborative communication; language of illness; personal health role.

19. “ In fact I didn’t know I had one until you came (laughs). In fact I said to the Doctor about it and he said oh you know when you give them a urine sample, there are bits and pieces floating about in there, and according to the letter, my condition was deteriorating, but nothing much to worry about, it was just deteriorating. Until that I didn’t know I had a kidney condition (laughs). No I never talk about that, I don’t think about it.” (DF Interview Three)

20. “ I have a great facility for throwing things to the back of my mind and not thinking about it, and therefore whether that is the right attitude or not I don’t know.” (JH Interview Three) Application of Core Category: Enabling/Disabling Coping style; personal health role; Learning to live with CKD

21. “ R: I check my blood, I check my sugar I: That’s right R: I can know if it’s up or down, but I can’t check if my kidneys are up or down, there is no physical check I can do, it’s only when you take your urine, they tell you whether there is a bit more protein. Actually last time they told me it was actually down, there was an improvement.” (FW Interview Two) Application of Core Category: Enabling/Disabling Affirmation; collaborative communication; coping style language of illness; personal health role; Gauging change in status

22. Participants sought means to gauge status about kidney function and prognosis; Participants used different coping strategies to cope with living with CKD, denial, compromising, grieving, maintaining control, and seeking to retain a normal life; A lack of general awareness of CKD limited support available from external sources which resulted in no formal psychological support for those with CKD. Findings

23. Furosemide 160mg/day

25. Conclusions Chronic Kidney Disease (CKD) (excluding dialysis and transplantation) generally has an ‘invisible’ personal, public and professional profile; The enabling/disabling processes determine whether CKD is identified, recognised, and actively managed leading to control and regression of disease (FW, HJ, PW), or whether there is continuing deterioration (RW, JH, LF, JJ) and how ‘enabled’ the affected individual is with regards to learning to live with their CKD.

26. Affirmation Language of illness Person Centred Healthcare Centred Social world Centred Social comparison Personal health role Personal coping style Collaborative communication Core Category: Enabling/Disabling Jane Bridger © 2008 Six health related life skills inter-relating with the users world