Supporting people with an intellectual disability to be an active participant in their own health

Lorraine Keating and Eilish Burke sought to help people with an intellectual disability to take better care of their own health, using a number of innovative methods…

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  • Taking care of your health is important
  • Sometimes going to the doctor or doing health tests can be hard and frightening
  • When things are explained well it is easier to do them
  • People with intellectual disability are the best people to help get this done.

The importance of health and well-being is paramount to having a good quality of life. However, to stay healthy and happy into old age, and to experience good life quality you have to be an active participant in your own health. Policy shifts emphasise this philosophy and, for example, Healthy Ireland’s vision is underpinned with the belief that health is everyone’s responsibility.

 

Challenges and implications

Making that commitment to health is the first step on our health journey. However for people with intellectual disability, engaging with and having medical tests and examinations can pose challenges. Frequently there is a lack of available and appropriate health information – communication perception and interpretation difficulties are common, with literacy and lack of education widespread. Many healthcare professionals have little or no experience communicating with people with intellectual disability and sometimes there is a lack of knowledge of the health needs of people with intellectual disability. Physicality can pose challenges for people to actually perform the required test or often the tests/machinery used can be fear-provoking. Along with this, people with intellectual disability are frequently omitted from health research, often based on the assumption that it would be too demanding for them to take part, or too difficult to recruit.

 

If people with intellectual disability do not engage in regular health assessment for health promotion, or take part in research on their health, the gulf of disparity will continue. There will be a lack of empirical evidence to underpin policy and health inequalities, complex morbidity and earlier mortality will be a feature for people with intellectual disability into the future.

 

What we did to overcome the challenges 

As part of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing, and to provide robust empirical evidence of health, a suite of health assessments were included in the second wave of data collection. These assessments were specifically chosen to be transportable, provide a comprehensive overview of health and be comparable to the general population study, TILDA. The assessment suite was called ‘A Health Fair’ to remove the connotation of being tested and, it was decided that the Health Fair would go to the people themselves at a place and time that would best suit, where possible.

 

An easy to read information booklet about the Health Fair was developed. The authors, working together, gathered pictures that would represent the process, wrote short plain-language explanatories and both authors reviewed the booklet for accessibility. They then created easy-to-read explanations, in a step by step manner, for each of the health assessments involved. The developed material was then reviewed by a wider group of advocates, the study Primary Investigators and the scientific advisory group of the IDS-TILDA study.  The Health Fair was then further pilot tested and, from the feedback, any other amendments to the process were applied.

 

The results

Over 85% of all the people who were asked took part in the Health Fair, (n=604/708). People found it easy to understand and enjoyable. People said they would do it again and that it was explained clearly to them – the following quotes demonstrate these points: ‘I really thought that was absolutely great, it was very interesting really, I really liked It’; another noted ‘Ah, I’d stay here all day that was lovely and easy’. Some said they were apprehensive but when the explanations were given clearly this helped them understand what was going to happen and they were happy with things, ‘it was good, it was excellent and I wouldn’t mind doing it all again’.

 

Learning from our lessons

Keeping in mind ‘nothing about me without me’, this result of having easy-to-read information included demonstrates that, with the right inclusive approach, the correct accessible tools and being prepared to reasonably adjust inadequate built environments, impairing attitudes and other barriers to engaging people with intellectual disability in health assessment and research can be overcome. The design developed and used in this study is one that can lend itself to the healthcare field. Healthcare professionals who ensure personhood is core to their delivery of care will support people with intellectual disability to engage, become more confident consumers of health and ultimately promote best health and happiness as we all grow older in Ireland.

Lorraine KeatingLorraine Keating is an advocate for people with intellectual disability. She has supported the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing for a number of years, reviewing questionnaires, accessible material, building accessible tools and assessing fieldworkers training. She has given talks on her life experience to students in a number of health professions from nursing to psychiatry and sports sciences. She  enjoys crafts and is a keen knitter. She is very interested in the rights of people with intellectual disability and has carried out a lot of work in this area to ensure people with intellectual disability are properly included in research.

 

Eilish BurkeEilish Burke is a nurse and is the Ussher Assistant Professor in Ageing and Intellectual Disability at Trinity College Dublin. She has worked in the area of intellectual disability for over 25 years. She was previously project manager of IDS-TILDA promoting the health and wellbeing of adults with intellectual disability. As part of her PhD work in IDS-TILDA she conducted the full objective health assessment element in the second wave of data collection. Her area of research interests is bone health, health indicators and health promotion, accessibility and inclusion.

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