Bray, Lucy

Cigan, Greg

Jack, Barbara

Kaehne, Axel

Background: Children and young people with an intellectual disability are among the most frequent visitors to healthcare settings where they undergo clinical procedures that can be painful and invasive. There is currently little empirical evidence to investigate how clinical procedures are experienced by children and young people with an intellectual disability and their parents. Methods: This ongoing study has adopted a qualitative research design underpinned by Classic Grounded Theory methodology. To date, 26 semi-structured interviews have been conducted with a convenience sample of children and young people who have a mild to moderate learning disability and are between the ages of 6-15 (n=11) and their parents (n=15). Results: Preliminary data analysis suggests that children/young people and their parents often feel worried and upset before and during clinical procedures. Children/young people report that they dislike being physically held still for procedures and that they prefer to be told about what will happen before a procedure takes place. Parents report other factors which contribute to the worry that they and/or their child experiences such as prolonged waiting periods and unclear communication between themselves and healthcare practitioners. Conclusions: Clinical procedures are challenging events for children and young people with intellectual disabilities and their parents. Where possible, practitioners should aim to make reasonable adjustments that respond to the concerns of children and young people and parents as highlighted by this study

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   “It Was Kind of Scary”: The Experiences of Children and Young      People with an Intellectual Disability of Undergoing Clinical  Procedures in Healthcare Settings Greg Cigan, Dr Lucy Bray, Professor Barbara Jack, Dr Axel Kaehne Faculty of Health and Social Care, Edge Hill University, United Kingdom                Background  Clinical procedures are activities performed by healthcare practitioners for the purpose of diagnosing, monitoring and/or treating an illness such as blood pressure testing and scans.  Children and young people with an intellectual disability frequently visit healthcare settings; however, there is currently little empirical evidence to determine how these individuals and their parents experience clinical procedures (Oulton et al., 2015; Peninsula Cerebra Research Unit, 2016). Research Question  How do children and young people with a mild to moderate intellectual disability and their parents experience non-urgent clinical procedures? Methodology and Methods  This ongoing study has utilised a qualitative research design underpinned by the principles of Classical Grounded Theory (Glaser and Strauss, 1967; Glaser, 1978).   To date, 26 semi-structured interviews have been conducted with a convenience sample of 11 children and young people who have a mild to moderate learning disability and are between the ages of 6-15 and their parents (n=15).   Communication in some interviews with children and young people has been aided by the use of the tool known as “Talking Mats”™ (Murphy, 1998) which is essentially an A1 sized surface on which a person arranges symbol cards in response to questions.   Completing a Talking Mat increased the amount of information conveyed by children and young people.  Results Preliminary analysis of data shows that:  Children, young people and parents often feel worried and upset before and during clinical procedures “Sometimes I’m a bit  agitated because, although I’ve had a number of blood tests before, I’m not sure if something is like going to be a bit dangerous or something like that.” John — Aged 15 “[Ben] had to have an MRI [scan]... I got the head end, my sister got the feet end... and I just cried all the way through it.” Jenny — Parent  Children and young people report that they dislike being physically held still for procedures and that they prefer to be told about what will happen beforehand “Remember when you pinned me down...? I hated it when you did that.” Tabatha — Aged 12 “Regularly now we would wait for three hours… The whole procedure would on average take at least two hours in general, or if not three, by which time [Edward] is beside himself and will not cooperate at all.”  Neville — Aged 11  Parents report that other factors contribute to the worry and upset that they and/or their child experience during a procedure “It was kind of scary and you don’t want it to happen, so you like try and move.” Ben — Aged 11 “Professionals find it very difficult… to talk to [John] as simply as possible. Sometimes I struggle to understand them as well in respect of the language they use.”  Rachel — Parent “Interviewer: And you didn’t like arriving at the hospital either? Neville: No. Interviewer: No. Can you tell me a bit more about that? Neville: Because Mum wouldn’t tell me what I was doing.” Emma — Parent Conclusions  Clinical procedures are challenging events for children and young people with intellectual disabilities and their parents.   Practitioners should aim to make reasonable adjustments that respond to the concerns of children and young people with intellectual disabilities and their parents such as attempting to book early appointment times to minimise waiting periods.  Children and young people with intellectual disabilities can and should be consulted about their healthcare whenever possible. Acknowledgements  Thanks is given to the Eaton Fund and the Professionals Aid Council for generously providing external funding to support this study.  Thanks is also given to the many individuals, schools, charities and parent/carer support groups who have aided recruitment for the study such as Twinkle House Sensory Centre, The Fragile X Society, South Manchester Down’s Syndrome Support Group, Newfield School, Williams Syndrome Foundation, The Down’s Heart Group and Bolton Parent Carer Consortium.  The symbols in this poster are taken from the Hospital Procedures© pack created by Widgit Software. Widgit Software 2002-2016 (www.widgit.com) own the copyright on the Hospital Procedures pack. The pictures and symbols within the pack have been reproduced here with permission.  References GLASER, B. G., 1978. Theoretical Sensitivity. California: Sociology Press. GLASER, B. G. and STRAUSS, A. L., 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine. MURPHY, J., 1998. Helping People with Severe Communication Difficulties to Express their Views: A Low Tech Tool. Communication Matters, 12(2), pp. 9–11. OULTON, K., SELL, D., KERRY, S. and GIBSON, F., 2015. Individualizing Hospital Care for Children and Young People with Learning Disabilities: It’s the Little Things that Make the Difference. Journal of Pediatric Nursing, 30(1), pp. 78-86. PENINSULA CEREBRA RESEARCH UNIT, 2016. What’s the Evidence? Reducing Distress & Improving Cooperation with Invasive Medical Procedures for Children with Neurodisability. Exeter: University of Exeter.   Contact Details       Correspondence to: Greg Cigan Email: Cigang@edgehill.ac.uk Tel: (+44) 01695 654313 Twitter: @gregciggs  

“It Was Kind of Scary”: The Experiences of Children and Young People with an Intellectual Disability of Undergoing Clinical Procedures in Healthcare Settings

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“It Was Kind of Scary”: The Experiences of Children and Young People with an Intellectual Disability of Undergoing Clinical Procedures in Healthcare Settings

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