“Tell me what they do to my body”: A survey to find out what information people with learning disabilities want with their medications

Abstract

Accessible summary We gave a questionnaire to self‐advocates who were attending a conference. The questionnaire asked them how they felt about the information they get with their medicine. Fifty‐eight people completed the questionnaire. Many of them said they did not get enough information about their medicine. Most people wanted easy‐read leaflets and pictures. There are many different places to find easy‐read information on the internet. We think they should be collected and checked. We also think that doctors and chemists need to spend more time with people to explain about medicines. Abstract BackgroundPrevious research has found that people with learning disabilities are not given prescription information that is tailored to their needs. We wanted to find out people’s information requirements. Materials and MethodsA questionnaire was co‐produced by the authors and consultants with learning disabilities. It asked what information people received from their GP and pharmacist about medications. The questionnaire was circulated at a self‐advocacy conference in the North of England. Fifty‐eight self‐advocates completed the questionnaire. ResultsInformation from GPs and pharmacists was mainly instructional, referring to when and how to take the medicine and dosage. Most respondents struggled to read the leaflets and remember verbal information. Many wanted the information in easy‐read format, and some wanted pictures or diagrams as well. A key theme was that health professionals often talked only to carers or support workers rather than involving the patient directly, and some respondents disclosed that they were not informed about side effects or alternative medications. ConclusionsHealth professionals should take time to discuss health issues and medication with the individual rather than only with carers. This could be facilitated by providing information in an accessible format.

Do people with intellectual disabilities understand their prescription medication? A scoping review

“…However, this review suggests that people with intellectual disabilities are not always receiving accessible information about their medication directly from healthcare professionals (Davis et al, 2016;Fish et al, 2017;Flood & Henman, 2015). However, this review suggests that people with intellectual disabilities are not always receiving accessible information about their medication directly from healthcare professionals (Davis et al, 2016;Fish et al, 2017;Flood & Henman, 2015).…”

“…Extending this, Fish et al (2017) found that people would like information presented in ways other than verbally, that is, photos/ videos of how to use their medication (n = 3), mobile alerts/special alarm as a reminder/timetable (n = 4). They also expressed how aids such as hearing loops/braille/sign language and/or interpreters should be utilized when appropriate (n = 5).…”

“…and Fish et al (2017) (Beacroft & Dodd, 2010;Davis et al, 2016Davis et al, , 2014Fish et al, 2017;Huneke et al, 2012;Walmsley et al, 2016). and Fish et al (2017) (Beacroft & Dodd, 2010;Davis et al, 2016Davis et al, , 2014Fish et al, 2017;Huneke et al, 2012;Walmsley et al, 2016).…”

“…information in the most accessible way, which may include using pictures/diagrams, easy-read text, audio, video and braille (Fish et al, 2017;Simpson & Douglas, 2011;Strydom et al, 2001;The Disability Partnership, 2016). This places a particular emphasis on the availability, or creation, of appropriate resources.…”

“…Study designs included a medical records search(Davis et al, 2014), quantitative studies(Beacroft & Dodd, 2010;Huneke, Gupta, Halder, & Chaudhry, 2012), qualitative studies(Davis et al, 2016;Dysch et al, 2012;Fish, Hatton, & Chauhan, 2017;Walmsley et al, 2016), a case study(Flood & Henman, 2015) and two pre-/post-test interventions(Ferguson & Murphy, 2014;Sheehan, Rochester, Hafesji, Kyambadde, & Gravestock, 2017).The intervention in Ferguson and Murphy's study consisted of three training sessions including information on the function of medication, possible side effects, risks, benefits and alternatives to medication.Sheehan et al's intervention was a psychotropic medication educationgroup that took place once a week for eight weeks discussing indications, how medication could help, possible side effects and how to manage them, and where to seek further information.Of the included articles, eight were conducted in the United Kingdom(Beacroft & Dodd, 2010;Dysch et al, 2012;Ferguson & Murphy, 2014;Fish et al, 2017;Flood & Henman, 2015;Huneke et al, 2012;Sheehan et al, 2017;Walmsley et al, 2016) and two in Study designs included a medical records search(Davis et al, 2014), quantitative studies(Beacroft & Dodd, 2010;Huneke, Gupta, Halder, & Chaudhry, 2012), qualitative studies(Davis et al, 2016;Dysch et al, 2012;Fish, Hatton, & Chauhan, 2017;Walmsley et al, 2016), a case study(Flood & Henman, 2015) and two pre-/post-test interventions(Ferguson & Murphy, 2014;Sheehan, Rochester, Hafesji, Kyambadde, & Gravestock, 2017).The intervention in Ferguson and Murphy's study consisted of three training sessions including information on the function of medication, possible side effects, risks, benefits and alternatives to medication.Sheehan et al's i...…”