Exploring The Information Needs And Experiences Of Caregivers of People With Autism Regarding Complementary and Alternative Medicines
HK Lim, S. Semple, M. Angley. Quality Use of Medicines and Pharmacy Research Centre, Sansom Institute, School of Pharmacy and Medical Sciences, University of South Australia
In 2007, Jimmy Lim, a pharmacy honours student under the supervision of Drs Susan Semple and Manya Angley conducted research exploring the information needs of caregivers with autism regarding the use of complementary medicines and dietary interventions. The results are outlined below and will be used to inform a ‘resource’ that is being developed by the Autism Research Group at the University of South Australia.
Introduction: In recent years, the use of complementary and alternative medicines (CAMs) in autism has increased. There is a need for a resource to guide caregivers in evidence-based selection of these treatments. It is important that the information needs of caregivers are determined to ensure their needs are met. The aim of the current study was to investigate the information needs and experiences of caregivers of people with autism surrounding the use of CAMs.
Methods: Sixteen caregivers of people with autism participated in four focus groups where questions were structured to explore their information needs and experiences when seeking information regarding CAMs and deciding whether to implement these treatments. Data was analysed using NVivo qualitative software.
Results: Themes that emerged were classified as information caregivers regarded as ‘essential’ on CAMS (including evidence for efficacy, safety, dosage and frequency, access to product and credentials of provider) and ‘desirable’ (including cost, rationale, interactions and administration tips). Themes that emerged around experiences included: challenges faced when seeking information, difficulty in deciphering information and the importance of the therapeutic relationship between health care professionals and caregivers. Multi-modal presentation and information presented at two levels of complexity were preferred formats for the resource.
Discussion: The information needs identified in the focus groups and what is available in the literature have been combined and applied to information on the efficacy, rationale and safety of various CAMS that was revealed during a recent systematic review of the literature conducted by our research team.
Acknowledgements: Many thanks to Autism SA and to the caregivers who participated in the study.