Abstract
Aims Research regarding adolescents’ with Down syndrome (DS) is limited. The majority of previous studies have been undertaken in either the UK or USA but none in Ireland. This study sought to address this gap by exploring the experience of growing up in Ireland for adolescents with Down syndrome and their aspirations for the future.
Methods The study was conducted using two questionnaires designed for administration to adolescents with Down syndrome and self-completion by parents. Areas explored in detail included health, service provision, education, living circumstances and future aspirations.
Results Forty seven adolescents with DS participated, aged 12-18 years (23 female) and 49 parents. The frequency of health comorbidities were assessed, 87% felt they had good health with eyes, hearing and heart. Further detail was obtained in key specific health areas. Daily medication was taken by 44%. A large proportion of parents (45%) and adolescents (98%) were unaware of the DS medical management guidelines. Parents were asked if their adolescent received satisfactory services across the domains. Parental reported satisfaction with care received in vision (92%), hearing (90%), medical care (86%) dietetics (55%) and speech and language therapy (39%). Dissatisfaction related to access rather than care received. There was limited use of respite services (30%). There was a negative perception of respite amongst some parents (17%) although those who availed of respite had largely positive experiences (92%). Transition of care from paediatric to adult services is an area of concern for the majority of parents (63% (n=31)) but not for adolescents. Most adolescents (79%) were unaware of transition to adult services and were unconcerned by it. Parents felt transition could be improved by additional information (61%), increased preparation (51%) and planning and discussion with adolescents (63%).
Conclusion The study showed overall satisfaction in relation to health and service provision but highlighted concerns regarding access to critical time sensitive services. Of particular concern there was poor awareness of the Medical management guidelines.
