1. The competent patient in a paediatric Stem cell Transplant Unit (SCT) and the ethical value of ensuring therapeutic compliance in adolescents. Presenter: Monica Bianchi 16 th Healthcare Interdisciplinary Research Conference Dublin, 4-5 November 2015 Annamaria Bagnasco, Department of Health Sciences, University of Genoa, Italy Annamaria Bagnasco, Department of Health Sciences, University of Genoa, Italy

2. BACKGROUND Literature shows that Child-Family-Centred-Care (CFCC) represents excellence in paediatric care.* Joint Commission International (Joint Commission International, 2011)** and Council Of Europe (Council of Europe, 2011)** *underline the centrality of the child/family as a synonym of excellence. “Children’s and young people’s health policy audit tool” The “Children’s and young people’s health policy audit tool” (Coles L et al, 2010) ****measures excellence in paediatric care in the UK National Health Service. CFCC is an innovative concept for the Italian context. *Mikkelsen G, Frederiksen K Family centred care of children in hospital - a concept analysis. J of Advan Nursing (2011) 67(5) 1152–1162 **Advancing effective communication, cultural competence and Patient Centered care: a road map for Hospitals - Joint Commission International 2011 *** Guidelines of the Committee of Ministers of the Council of Europe on child-friendly health care and their explanatory memorandum- September 2011 ****Mikkelsen G, Frederiksen K Family centred care of children in hospital - a concept analysis. J of Advan Nursing (2011) 67(5) 1152–1162 University of Genoa

3. Background

4. Developing an educational tool to improve self management of problems linked to the disease Self management of immune-suppressive therapy at home Diet self management Aim of the study University of Genoa

5. The theory we adopted for this study was ‘Problem Based Learning’ applied to patients based on the therapeutic education approach. The tool we chose was the ‘Barrows Cards’ (Barrows & Tamblyn, 1977), a method based on the theory of Problem Based Learning, originally used to test decision-making skills and critical thinking in medical students. University of Genoa

6. 1 The ethical issues of this study The specific needs of the adolescents. Gap between the role of paediatric health professionals and adult care professionals. Health professionals distressed by this role gap. University of Genoa

7. 2 The ethical issues of this study We designed new Barrows Cards on the basis of a rigorous face validation process that involved a thorough evaluation of the pictures on the cards, the contents and the wording of the questions. A specifically trained nurse explains to patients and family members how to use the tool and answer the questions. After using the Barrows Cards, patients and their family members evaluated the tool by answering a short questionnaire on their level of satisfaction with the cards. University of Genoa

8. The Barrows Cards adapted to our patients The Barrows Cards method consists of an initial card (called the situational card) that presents an issue, followed by pack of at least 15 cards each illustrating a different behaviour. Then the patient has to choose which card illustrates the right behaviour to resolve the issue presented in the situational card. The front side of each card describes a behaviour, which could be either right, partially right, or wrong. Instead, on the back of each card it says whether the behaviour chosen is right or wrong, and why. University of Genoa

10. The Barrows Cards: The initial card that presents a situation: You have just been discharged from hospital after hematopoietic stem cell transplantation. At home, you are going to continue with the immunosuppressive therapy taking it orally - soft capsules or syrup - instead of intravenously. In your hospital discharge letter, you will find instructions about formulation, doses and timing. University of Genoa

11. The Barrows Cards: Example One of the 14 Cards presenting a possible behaviour on the front, and the answer on the back of the card YOU ARE TAKING THE MEDICINE IN VIA ORAL SUSPENSION. “EVERY TIME I OPEN A PACKAGE FOR THE FIRST TIME, I WRITE THE DATE ON IT.” CORRECT The medicine can be used within two months after opening the package. Don't freeze it. Store between 15 °C and 30 °C. FRONT BACK University of Genoa

12. The Barrows Cards: Examples Another card presenting a possible behaviour on the front, and the answer on the back of the card YOU ARE TAKING THE MEDICINE IN VIA ORAL SUSPENSION. “EVERY TIME I OPEN A PACKAGE FOR THE FIRST TIME, I WRITE THE DATE ON IT.” CORRECT The medicine can be used within two months after opening the package. Don't freeze it. Store between 15 °C and 30 °C. FRONT BACK University of Genoa

13. Results Between 2013 - 2015, the Barrows Cards were used in 17 adolescents who had undergone bone marrow transplantation to make sure that they adhered to immunosuppressive therapy at home after discharge. Adolescents and their families were very satisfied with the Barrows Cards, because no complications, no convulsions, and no readmissions occurred. Nurses were also satisfied because they received less phone calls for clarifications or problems, and there was a reduced number of blood draws for cyclosporine monitoring. University of Genoa

14. Results Barrows Cards in Immunosuppressive Treatment Anno Trapianti allogenici Pazienti italiani Pazienti Stranieri Barrows In italiano Barrows in Inglesi 2013189912- 20141811722 201541

15. RESULTS From the qualitative analysis emerged the patient & family high level of satisfaction. Nurses received less phone calls of requests for clarification or problems. No complications at home, no readmissions, no convulsions! Reduced blood draws for cyclosporine** University of Genoa

16. Discussion Financial sustainability : no “start-up” costs, No costs “per-year” Savings per year Indicators : Blood draws for cyclosporine, Hospital stay Phones calls for problems Patient satisfaction Nurses’ satisfaction University of Genoa 16

17. Conclusions Our PhD School of Nursing of the University of Genoa performed the first face validation of the pictures and the wording included in the new Barrows Cards designed for this purpose. The results of this pilot study have proved to be extremely positive and promising, both in terms of patient satisfaction and costs. We are already conducting further research on larger and different samples to consolidate these initial results. In the future, a portable computer or tablet would make the tool even more interactive and attractive for adolescents. University of Genoa

18. In addition... Standard system of therapeutic education for Barrows Cards Special assistance for foreign patients. 18

19. THANK YOU FOR YOUR KIND ATTENTION University of Genoa, Italy