Patient view and medication management in chronic illness

Transcription

1 Patient view and medication management in chronic illness Insights from a qualitative longitudinal study Dr. Jörg Haslbeck Careum Patientenbildung The study presented here was part of the Nursing Research Network Patients perspectives in chronic illness new concepts of health care funded by the German Federal Ministry for Education and Research (support number: 01GT0315) and was conducted at Bielefeld University, School of Public Health

2 Overview Background research on patient view and medicines Study: design method sample Findings Implications for self-management support /research Careum Patientenbildung Seite April 2010

3 Traditional perspectives on medication Hippocrates: [The physician] should keep aware of the fact that patients often lie when they state that they have taken certain medicines. In: Trostle (1988, p. 1300) Careum Patientenbildung Seite April 2010

4 Adherence a global issue Adherence averages 50% in developed countries Differences and commonalities across countries, e.g. in spending on pharmaceuticals Medication taking a major challenge in chronic illness (self-)management Strauss/Glaser (1975), SVR (2002, S. 22), WHO (2003) Careum Patientenbildung Seite April 2010

5 Medicines and (chronic) illness Concepts Sackkett/Hayes (1976), RPSGB (1997), WHO (2003) Careum Patientenbildung Seite April 2010

6 Studies on patient view and medicines in chronic illness 1970/ Since 2000 # of Studies Countries 1 US, UK, DK UK, US, DK, CA, NZ UK, US, AU, DK, SE, CA, CN, CH, DE, FI, NO, BW, ZA Disciplines 1 (Medical) Sociology, Anthropology, Public Health, Medicine, Nursing Medical Sociology, Nursing, Medicine, Pharmacology, Medicine, Pharmacology, Nursing, Public Health, Sociology Examples Stimson (1974), Trostle et al. (1983), Conrad (1985), Hunt et al. (1989) Thorne et al (1990), Britten (1994), Adams et al. (1997) Britten et al. (2002), Tolmie et al. (2003), Stevenson (2004), Pound et al. (2005) * Haslbeck (2010a,b) 1) Arranged in order of quantity *) First meta-ethnography of studies on chronically ill peoples perspective on medication taking Careum Patientenbildung Seite April 2010

7 Research focus in studies on patient view and medicines in chronic illness Patient - Provider- Relationship Process of management Dynamics* Beliefs / Meaning of medication Everyday life and medicines** Decisionmaking and medicines Haslbeck (2010a,b) * ) Few **) Some Careum Patientenbildung Seite April 2010

8 Qualitative study: through patient s eyes Part of research network ( ) Qualitative longitudinal design Grounded Theory orientation Data collection with follow-up approach In-depth interviews at three different points in time Data analysis Theoretical sampling, constant comparison Sample overview (n=27): 13 men, 14 women 11 living alone Average age: 62 (35-81) Heart diseases: n=21 HIV/Aids: n=6 Chronically ill since 8.5 yrs Medications/day: 6 (3-13) Sensitizing concept Strauss chronic illness trajectory Careum Patientenbildung Seite April 2010

9 Findings Overview Everyday medication management closely related to chronic illness trajectory Phases: 1. Onset of medication taking 2. Restabilisation 3. Balancing medication management in illness trajectory 4. Increasing complexity Key challenge: development and adjustment of routines in medication (self-)management Careum Patientenbildung Seite April 2010

10 Onset : development of routines disregarded Illness crisis shock and helplessness Passive patient role, acceptance of medication, following instructions Limited receptiveness for medication-related information No idea of illness and medication- related chronicity Quotes I knew I had to take those pills. You re not going to make it without the pills. At least, that is what the doctors said (P04, male, HIV/Aids) Otherwise, I have never taken any medication, not at all! Not against headache, because I hardly suffer from headaches or anything like that. Only when I had my coronary bypass surgery, since then I have to take those pills. (P15, male, heart disease) Careum Patientenbildung Seite April 2010

11 Balancing medication in illness trajectories Awareness of chronicity, illness will stay Hoping for routines to sort out themselves Intuitive development of sustainable routines: pills become second nature Drawbacks and dilemmas Poor response from health care professionals Towards the self managing person leaving traditional patient role behind Quote This daily pill taking, mornings and evenings I have been taking pills of one sort or another since It becomes so regular. I take the pills, turn around and I have forgotten that I have taken them. Yes, the process itself has become so much second nature that I do not notice it. That is a problem, because I have made it into such a ritual. (P01, male, HIV/Aids) Careum Patientenbildung Seite April 2010

12 Increasing complexity : adapting and re-adjusting routines Distraction, feelings of loosing track horror vision of medication-trip Anxiety, objections and feelings of dependency towards medication Looking for a way out of complexity adapting and adjusting medication management Quote I had no problems with my stomach at all and then those stomach problems began once I started taking several medicines together. Then I did not know any more, is it the Diclofenac sodium or is it the other medicines. I can t tell the difference any more. (P16, female, arthritis) Careum Patientenbildung Seite April 2010

13 Self-management and chronic illnesss Cooper (2004) Non-Compliance as problem-solving strategy for limited fit between everyday requirements and medication regimen Challenges Implications Addressing patient view to identify specific needs in phases of chronic illness trajectory Providing support for integrating medication regimens into everyday life Providing knowledge and skills Acting as the ill person s advocate in vulnerable moments From patient to person personcentered approach In-depth research needed focus on illness trajectory and generic challenges in chronic illness management Careum Patientenbildung Seite April 2010

14 Additional Information English Haslbeck J, Schaeffer D (2009): Routines in medication management: the perspective of people with chronic conditions. Chronic Illness, 5(3), German Haslbeck J (2010): Medikamente und chronische Krankheit. Selbstmanagementerfordernisse im Krankheitsverlauf aus Sicht der Erkrankten. Bern: Huber Haslbeck J (2010): Medikamentenmanagement aus Sicht chronisch Erkrankter Forschungsbedarfe und -trends. Public Health Forum, 18(66), 30, e1-3 Haslbeck J, Schaeffer D (2010): Selbstverantwortung im Gesundheitswesen, diskutiert am Medikamentenmanagement aus Sicht chronisch kranker Patienten. Das Gesundheitswesen, 2010 (in press) Careum Patientenbildung Seite April 2010

15 Careum Patientenbildung Pestalozzistr. 3 CH-8032 Zürich Fon: Fax: patientenbildung@careum.ch Careum Foundation Page April 2010 Careum Patientenbildung

16 Backup Careum Patientenbildung Seite April 2010

17 Chronic Illness and the Quality of Life BACK Elements of Strauss and Glaser s theoretical framework Figure after Strauss/Glaser (1975) Careum Patientenbildung Seite April 2010

18 Dimensionen des Managements von Regimen Nach Strauss/Glaser (1975), eigene Darstellung Careum Patientenbildung Seite April 2010

19 Sampling BACK As sampled in study phase I of the Nursing Research Network North Rhine-Westphalia ( ) Careum Patientenbildung Seite April 2010