People with intellectual disabilities and the medication use process. Themes from Grounded Theory analysis of interviews with six process 'experts'.

Background: Medication use is the major therapeutic intervention in the population with intellectual disabilities. The quality of the medication use process is of vital importance. Aims: We need to determine if people with... [ view full abstract ]

Background:
Medication use is the major therapeutic intervention in the population with intellectual disabilities. The quality of the medication use process is of vital importance.

Aims:
We need to determine if people with intellectual disabilities can provide information about the quality of the medication use process in their population. Insight into the 'patient experience' is required to ensure a quality medication use process in this vulnerable population.

Methods:
The researcher a practising pharmacist received Ethics approval from the university Ethics Committee. The project was facilitated by a national support organisation for people with intellectual disabilities. Six people who consented to participate, were interviewed using a semi-structured tool. The interviews were transcribed and analysed using Grounded Theory. Literature review was undertaken post research to avoid contaminating emerging theory.

Findings:
Grounded Theory focuses on explaining the persons main issue of concern and how the person continually resolves this concern. Themes identified in this project included -complexity of process, autonomy, health literacy, information provision, diabetes distress. People with intellectual disabilities may not know about 'side effects' of medicines but can provide information about 'bad things' and 'good things' about medicines.

Conclusion:
People with intellectual disabilities are ‘experts’ in the complex medication use process in their population. Their voice should be heard to ensure their safety.

Implications:
Pharmacists and others have a responsibility to make information on medication and the medication use process readily available to people with intellectual disabilities and their carers.
Clinicians and policy makers must open their eyes and ears to 'real life' situations.