1. The work of nurses at the Immunology Institute ward Bc.Dita Růčková Charles University Immunology Institute 2 nd Medical Faculty and University Hospital Motol

2. Our patients Immunodeficiency: primary secondary

3. Most frequent types of Dg. CVID ( common variable immunodeficiency) Atopic eczema (more severe cases, methylprenisolon i.v.) Bruton agammaglobulinemia Selective IgA deficiency Selective Ig G subclass deficiency Hereditary angioedema type I.,II. T ransient hypogammaglobulinemia in childhood

4. Main clinical symptoms in immunodeficiency Increased predisposition to bacterial infections and frequent relapses Increased inclination to infections caused by viruses, bacteria, fungi, parasites i.e. persistent sinusitis, temperature, productive cough, chronic fatigue Frequent otitis Weak or no response to vaccination Lack of progress

5. Treatment on the ward Immunoglobulins informed consent is required prior to the first application on our care centre immunoglobulin therapy is paid by insurance company

6. Treatment on the ward. Intravenous immunoglobulin (IVIG) regularly once every month ● m easuring physiological functions, ● control blood samples, (M+S,KO, immunology, biochemistry), ● bioassay ● Infusion takes approximately 2-4hours,

7. Treatment on the ward Subcutaneous immunoglobulin (SCIG) ● abdomen area 15 ml may be administered into one place application time ½ h – 1 h the speed depends on the child’s age, the quality of the subcutaneous and the amount of the medicine (Newborn baby– 5ml/h) u sing a special infusion pump or rapid push up metod ● can be delivered once a week or twice a month

8. S.C. application education for home care training parents for treating the child at home using an infusion pump parents receive written step-by-step instructions how to work at home individual approach to training parents, min. 3 appl. on our care centre control patients on home therapy is every three month

9. S.C. application patients get material for home therapy we have a plan monitoring the skill of application technology on home therapy one or twice a year we focus on the psychological work with patients and their family

10. Our capacity

11. s.c. application

12. Subcutaneous infusion set, especially, for small children,

13. Measuring physiological functions

14. i.v.application

15. Working with parents and children Written informed consent is required before going ahead with therapy Parents collected the prescribed quantity of Immunoglobulin at the pharmacy (based on a prescription), they don’t pay anything and store in our fridge. During the first meeting at the ward, while the medicine is warming up, we perform psychological work characterised by compliance – we eliminate the motive of power – using empathy, mirroring and dialogue. Reduces fear We have videos of fairytales for children to watch. We help parents entertain infants throughout the application process. Power with as opposed to power over.

16. Frequent concerns of parents The sterile preparation of the actual drug Administering to their own child (we guide by hand for the 1 st application.)

17. Anatomy of the communication Factual content Self-disclosure Challenge Relationship

18. Factual content The content of the communication comprises one fourth (1/4 ) of what takes place between the speaker and the listener (for instance: a husband is eating a sauce and spots something green swimming inside and observes: “There’s something green in here (he enquires about factual content)”.

19. Each communication not only hides information about the factual content conveyed but also self- disclosure about the person confessing. “I don’t know what it is” (self-disclosure)  Said in an exasperated fashion i.e. I’m tired.  In a curiously manner................I’m surprised that you have neglected something  Ironically.................I don’t respect you. Self-disclosure

20. Relationship Or rather how I judge you and how we work together. The report reveals how the speaker relates to the listener, what kind of relationship they have. We learn about the mutual relationship in communications by means of gestures, tone of voice and its gradient, the suitability or unsuitability of timing assertions, facial expressions and other accompanying signals of a non-verbal nature. In terms of these aspects of the report, the recipient has especially sensitive hearing because he feels like a person who is being treated in a certain way. (I’m relying on the fact that you know. I trust that you wouldn’t put anything bad in the sauce because we care about each other.)

21. Conclusions Or rather what I’d like to encourage you to do. We rarely say something just for the sake of it. Almost every communication assumes the role of influencing the listener to do or not to do something. This attempt at influencing may be more or less clear or hidden, we then talk of handling (I want you to tell me what it is.)

22. A piece of communication took place in our examples which involved a relationship of trust between the speaker and the listener (wife), but also involved a relaxed moment eating. If this information is conveyed in a offended voice, it will come out entirely differently. The communication: “There’s something green here”, reveals that the speaker doesn’t like the sauce (self-disclosure), that he considers his wife to be a bad cook (relationship) and he wants the sauce to be removed from the table (challenge).

23. Thank you for your attention