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N003. Adolescent focus groups

M. Hamzawi

Our Lady's Children's hospital, Dublin, Ireland

The Paediatric Gastroenterology service in Our Lady's Children's Hospital, Crumlin (OLCHC) provides care to children from all over Ireland with Inflammatory Bowel Disease (IBD). The number of new referrals has increased by 250% in the past 3 years, thereby significantly increasing patient numbers to 304. Members of the multidisciplinary care team at the GI unit, a Clinical Nurse Specialist, Dietician, Psychologist and Social Worker, reflected on how best to continue to provide patient support and education to this large group of patients with IBD. A decision was made to run focus groups to address the needs of teenagers and their families.

The aims of this new programme were (i) providing multidisciplinary support to children and their families, (ii) giving them an opportunity to meet other children and families with IBD, (iii) building a strong rapport between child and team members, (iv) educating children and parents about IBD and its management, (v) providing this support in a cost neutral manner.

Subject: Our subject is 140 teenagers between the ages of 12–17 years selected from a national cohort of 304 with a diagnosis of IBD.

Method: Starting in December 2009, a purposeful selection of teenagers based on age, gender, demographics, diagnosis, +/− previous surgical procedures was invited to attend a focus group held in two multipurpose rooms in the Medical Tower of OLCHC. A structured format for the day was formulated for the teenagers to address issues likely to be of concern, e.g. compliance with medication, coping skills, nutritional advice. A concurrent group was run for parents/guardians facilitated by the medical social worker.

Results: Since December 2009 we have held 7 focus groups with 50% attendance. 98% of those who attended enjoyed the meeting, though 46% felt it was not what they expected. 75% felt the meeting was of benefit .97% said there was no part of the meeting they would omit and 81% said they would like to attend a follow on meeting. Following each meeting there was a follow up phone call to the parents to obtain their feedback. No extra staff or room rental costs were incurred and light refreshments were provided by a donor.

Summary and Conclusion: Overall the focus group is achieving our aims. It is a fun, cost effective way of linking families, ensuring adolescents and parents are more informed about IBD and how best to manage their illness. The following areas need to be addressed: (i) how to reach out to non attendees; (ii) how to measure parental satisfaction with the focus groups and the benefits for their child; (iii) how to incorporate different age groups such as the pre-teens and those in transition.