ESPU Congress 2018 - Abstract Book

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237
11–14 APRIL, 2018, HELSINKI, FINLAND
10:40–10:45
S5-6 (PP)
LIVING WITH A MITROFANOFF: A GROUP APPROACH
Hannah COLLINS1, Ruth HURRELL1 , Beverley WHITNALL2, Yvie MORLEY2 ,
Raimondo CERVELLIONE2 and David KEENE2
1) Manchester University NHS Foundation Trust, Royal Manchester Children's Hospital, Paediatric Psychosocial
Service, Manchester, UNITED KINGDOM - 2) Manchester University NHS Foundation Trust, Royal Manchester
Children's Hospital, Paediatric Urology, Manchester, UNITED KINGDOM
PURPOSE
To deliver a group offering children with bladder exstrophy and their families the chance to gather
information and share experiences about mitrofanoff surgery and living with a mitrofanoff.
MATERIAL AND METHODS
10 children (six boys and four girls), aged six to 16 years of age, attended with their parents. Seven
had already undergone mitrofanoff surgery and three were considering it. Two group sessions
were delivered three months apart to the same participants. The multi-disciplinary team ran tailored
parent and child sessions in parallel. The format included provision of medical and psychosocial
information as well as time for participant discussion. The Paediatric Incontinence Questionnaire
(PinQ) was used to help identify those who might benefit from additional support around quality of
life (QoL). A qualitative feedback questionnaire was used to evaluate the group.
RESULTS
100 % (n=10) of parents and 90 % (n=9) of children stated that they would recommend the group
to others and rated it as ‘very helpful'. During the group sessions parents developed an information
sheet for families, and children made a film about their thoughts on living with a mitrofanoff to help
other service users. PinQ scores remained largely consistent for children pre and post (two children
were identified as requiring additional psychosocial support). Parents were more likely than their
children to report improved PinQ scores following the group.
CONCLUSIONS
Whilst parents and children both valued the group initiative, parents were most likely to perceive
a measurable change in child QoL following the group. We reflect on this with reference to our
descriptive data.