Epidermolysis bullosa and pain. The day-to-day experiences of those affected and recommendations for the development of a care concept in Germany

Transcription

1 . The day-to-day experiences of those affected and recommendations for the development of a care concept in Germany Dissertation for the Master s Degree in Nursing Care (M.Sc.) at the University of Witten/Herdecke

2 Epidermolysis bullosa Genetic, rare skin disease Germany: approximately 2,000 patients affected Frequently confronted with insufficient nursing and medical care Characterised by the massive formation of blisters and permanently-impaired wound healing Only a few studies deal with nursing care management 2

3 EB theoretical frame Curriculum for nurses Focusing on pain (acute, chronic) 3

4 Research question To date, no study has been found which has examined the experiencing of pain and a strategy to deal with it How do those affected by EB experience their pain and what strategies have they developed during the course of their illness to deal with it? The aim of this research was to make some recommendations for a nursing care concept in Germany 4

5 Methodical steps Qualitative research approach Modelled on the Grounded Theory and using the Modell der Pflege chronisch Kranker (Care Model for the chronically ill) by Mieke Grypdonck 9 interviews, open questions During research, writing minutes from memory / diagrams Transcription of 8 interviews Using MAXQDA 10 to analyse data The interviews were evaluated as per the Strauss / Corbin Grounded Theory 5

6 Sample 9 patients aged between 18 and 65 5 women, 4 men o Affected by EBD (7) o Affected by EBS (2) Social background: o attending school (1), in employment (2), early retirement or pensioner (6 patients) o single, married or divorced 6

7 EB - Results The results clearly show that those affected distinguish clearly between physical pain and other pain Physical pain occurs as a result of the illness, during activity or when changing dressings Other pain is triggered by the patients environment: o stigmatisation from a sense of exclusion because of being different o from the demoralising struggle with service providers o the isolation caused by their limited physical capabilities o a lack of nursing and a lack of specialist medical knowledge 7

8 Dealing with blisters, pain and itching Symptom reduction during distraction, increase in symptoms during stress or relaxation Medication: taking medication versus the anxiety of this becoming habit-forming, following isolation To feel cut out; fear of loss Tendency to endure pain instead of undertaking something 8

9 Action strategy regarding physical and psychological pain To fight for themselves To hide To do everything which is possible in their daily life To deal with suffering because they know they are chronically ill and to do the best which is possible in their situation 9

10 Recommendations for the development of a care concept in Germany A special further-training course for nurses The additional promotion of non-medical pain therapy Interdisciplinary care, including psychosocial care and which caters for the whole family environment Paying much more attention to a patient group which - because it is relatively rare - is largely neglected Inclusion of action strategies into the daily care routine of those affected Extension of psychosocial support 10

11 Limits 9 interviews No junctional EB (EBJ) Based on Grounded Theory 11

12 Prospects What psychological long-term conditions have developed in adults with EB and to what degree do these influence the course of the illness? Does an all-embracing, sustained psychosocial prevention lead to a reduction in the cost of the treatment of secondary diagnoses? What is the physical and mental state of the healthy siblings or the healthy parents of the affected children and what sustainable effects do these have on the whole family structure? Which prevention should be implemented in order to prevent any negative consequences? In the case of a genetic rare disease is it necessary for the parents to develop a new model for coping to help them? 12

13 Dass wenn man nach außen hin genau so zerbrechlich wäre wie die Haut ist, dann würde man wahrscheinlich, [ ] dann würdest du wahrscheinlich jeden Tag zusammenbrechen. Und deswegen baust du so eine Art Schutzmauer auf und hast so eine etwas härtere Art nach außen, die ja nach innen gar nicht so wiederspiegelt. 13

14 If you were just as fragile on the surface as your skin is, then you would probably, [ ]then you would probably collapse every day. And for that reason you build up a sort of protective wall around yourself and present a somewhat harder impression to the world at large, which in no way reflects how you really feel inside. 14

15 Thank you for listening! IEB e.v. DEBRA Deutschland Bundesgeschäftsstelle Mühlweg Biedenkopf Tel.: 06461/ Fax: 06461/ Mail: 15