The competent patient in a paediatric Stem cell Transplant Unit (SCT) and the ethical value of

ensuring therapeutic compliance in adolescents.

Presenter: Monica Bianchi

16th Healthcare Interdisciplinary Research ConferenceDublin, 4-5 November 2015

Annamaria Bagnasco,Department of Health Sciences, University of Genoa, Italy

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.

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

University of Genoa

Background

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

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.

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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.

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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.

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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.

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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.

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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

FRONT BACK

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The Barrows Cards: Examples

Another card presenting a possible behaviour on the front, and the answer on the back of the card

FRONT BACK

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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.

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ResultsBarrows Cards in

Immunosuppressive Treatment

AnnoTrapianti allogenici

Pazienti italiani

Pazienti Stranieri

BarrowsIn italiano

Barrows in Inglesi

2013 18 9 9 12 -

2014 18 11 7 2 2

2015 4 1

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**

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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

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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.

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In addition ...Standard system of therapeutic education for Barrows Cards

Special assistance for foreign patients.

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THANK YOU FOR YOUR KIND ATTENTION

University of Genoa, Italy