title: Disinterest in local self-help groups amongst patients with inflammatory bowel disease in Leicester.
abstract: An invitation to attend the inaugural meeting of a self-help group and a questionnaire were sent to 2084 patients with inflammatory bowel disease (IBD). Twelve months later 180 patients who had joined the group (n = 90) and a similar number who had not, were sent a second questionnaire seeking why they had or had not, and what functions the group had managed to fulfill. 254 (13%) responded and 138 (7%) joined. Patients with Crohn's disease chi 2 = 5.43, P = 0.02) and women (chi 2 = 3.80, P < 0.05) were more likely to join. These differences were not seen amongst the Asians who responded to the questionnaire (chi 2 = 0.01, ns) who were much less likely to respond (chi 2 = 15.1, P < 0.0001). Responders wanted the group to provide an information service (85%) to give an opportunity to discuss problems with other patients (77%) and to promote the needs of people with IBD to the local community. 88% (n = 159) responded to the second questionnaire, including 83 from joiners and 76 from non-joiners. Forty-seven (57% of joiners) had attended meetings. Answers indicated the group provided useful general information (99%), mutual support (66%), information on medical research (70%) and an opportunity to meet (60%). Amongst non-joiners, 81% (n = 62) thought such a group might be useful. Reasons for not joining included: too busy (40%), too far away (23%), managing without support (28%) and reluctance to broadcast their illness (20%).
authors.affiliation: Gastro-intestinal Research Unit, Leicester General Hospital, UK.
authors.forename: G A
authors.initials: GA
authors.lastname: Moody
authors.forename: P
authors.initials: P
authors.lastname: Bhakta
authors.forename: J F
authors.initials: JF
authors.lastname: Mayberry
mesh_terms: D001208:Asia / Q000208:ethnology; D001294:Attitude to Health; D003093:Colitis, Ulcerative / Q000208:ethnology / Q000523:psychology*; D003424:Crohn Disease / Q000208:ethnology / Q000523:psychology*; D004739:England / Q000453:epidemiology; D005260:Female; D006801:Humans; D007194:India / Q000208:ethnology; D008297:Male; D008875:Middle Aged; D012657:Self-Help Groups; D011795:Surveys and Questionnaires