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S 19 Parallel session

S 19 Care of the child with CKD
Saal 2, 28^th September 2015, 9:00 – 10:30

Programme of the Session:

GS:
Renal transplant in very young children: a big challenge

O 47
The pediatric kidney transplant experience: analysis of the parent’s meanings
Giorgio Pozziani (Italy)

O 48
Peritoneal dialysis patients with Prune Belly Syndrome - a case report
Ksenija Valentak (Croatia)

O 49
Nursing relationship with parents in a Pediatric Renal Unit
Ilaria De Barbieri (Italy)

Abstracts:

O 47
The paediatric kidney transplant experience: analysis of the parents' meanings
G. Pozziani¹, F. Sinatora¹, E. Benetti², G. Longo², C. Cattelan², L. Murer^2
1Servizio di Psichiatria Infantile e Psicologia Clinica - DAI - Dipartimento di Salute della Donna e del Bambino, Azienda Ospedaliera di Padova - Università degli studi di Padova, Padova, Italy; ²Servizio di Nefrologia pediatrica Dialisi e Trapianto- DAI - Dipartimento di Salute della Donna e del Bambino, Azienda Ospedaliera di Padova - Università degli studi di Padova, Padova, Italy

Background: Kidney transplant overwhelms childhood’s understanding capabilities. Children and their family need to be prepared and supported throughout every stage of the transplant process.
Objectives: This work studies affective and communicative representations related to transplantation, as described by transplanted children’s parents, in order to assess resources and criticalities and develop better care pathways.
Methods: During a residential psychoeducational event parents were invited to compose a text by the title "Transplantation: my experiences and perspectives", and to complete a questionnaire about some personal/clinical data. 30 texts (16 Mothers/14 Fathers) were processed with T-Lab – text analysis software – in order to study content occurrences related to 6 variables: sex parent, child’s age, child's age at transplant, dialysis length; deceased/living donor.
Results: Considering Sex Parent variable we note a strong contents’ symmetry between mothers and fathers, i.e.: mothers focus on "life before transplant" ; fathers focus on "open up to the future". According to the Age-related Variables about children: in both ranges "42-60 months - actual age" and "Age at the time of transplantation:12-36 months" relevant topics are "need to believe" and "feel the little child".
Dialysis Length Variable:in range 0-12 months the topic "to integrate illness experience" resulted significant, in range 13-24 months the "need for certainties", in range 25-53 months the "awaiting for kidney".
Conclusion/Application to practice: Collected data suggest the possibility to isolate significant affective-communicative topics related to the transplant process. A better comprehension of this topics could be useful in order to relieve both children and their parents and siblings from transplant traumatic dimensions.

Disclosure: No conflict of interest declared

O 48
Peritoneal dialysis patients with Prune Belly Syndrome - a case report
K. Valentak¹, S. Dejanović¹, A. Tomas Valentović^2
1Department of pediatrics nephrology, dialysis and transplantation, University Hospital Centre Zagreb, Zagreb, Croatia; 2Kirkomerc d.o.o., Zagreb, Croatia

Background: Prune Belly Syndrome (PBS) means a group of congenital abnormalities whose main characteristics are: underdevelopment of the abdominal muscles and part wrinkled skin,  that ahven't lowered or testicular agenesis, anomalies of the urinary tract, and worsening chronic kidney disease (CKD). The incidence is estimated between 1 out of 50000 born alive and the condition affects mostly boys with a prevalence of 95%. In our Department between 2000.g -2015.g we had one PBS patient with CKD.
Results: In the present report we describe the case of our experience with chronic ambulatory peritoneal dialysis for a four year old boy, with PBS and with one functioningl kidney. In the neonatal period he received a right nephrostomy for possible outflow of urine due to the underlying diagnosis megaureter. The patient had several laparoscopic insertions of a peritoneal catheter, plastic abdominal wall and lowering testicles. During his stay in the hospital the mother of the boy was educated about the procedures and the implementation of the PD. In our patient the most serious complications were peritonitis, infections of the exit site and tunnel catheter. 
Conclusion/Application to practice: Deficiency of abdominal musculature in PBS are potential problems for the use of PD, in particular, catheter placement, exit-site healing, and leakage of dialysate. The aim of this case is on providing good quality of  life for the boy with a rare syndrome, conduct peritoneal dialysis at home, and enabling normal growing up for the child.
Disclosure: No conflict of interest declared

O 49
Nursing relationship with parents in a Pediatric Renal Unit
I. de Barbieri^1
1Women’s and Children’s Health Department, Padua University Hospital, Padua, Italy
The peculiarities of working as a nurse in paediatric field are many: we don’t have standard drug doses, but each patient has a personalised dose according to their weight, we deal with little lines and catheters. Children as patients are much more vulnerable than an adult, and above all, children usually have parents and a whole family around them.
The relationship with parents becomes often the pivotal activity of nursing care. Nurses must develop their relational skills to enhance communication with parents because health care is provided through relationship. A good relationship and effective communication are linked to a high quality of care, a safer environment for patients, better outcomes, eg. better pain control, better patient compliance (Street, Makoul, Arora, Epstein, 2009; Stewart, 1995).
The Relationship-based model (RCB) care is a model for transforming nursing practice, focusing on the value of relationship. “We experience the essence of care in the moment when one human being connects to another: When compassion and care are conveyed through touch, a kind act, through competent clinical interventions, or through listening and seeking to understand the other’s experience, a healing relation in created. This is the heart of RCB” (Koloroutis, 2004).
RCB is comprised of 3 relationships: care provider’s relationship with patient and family, care provider’s relation with self and care provider’s relation with colleagues.
Health care professionals can create a healing environment for children, enhancing and developing these 3 relationships. This will lead to a less stressful experience for those parents hospitalised together with their children.