Research in practice

An exploratory study of the experiences of children and young people with an intellectual disability undergoing clinical procedures

Being held still and not being informed about why a procedure was being carried out are some of the upsetting experiences children with a learning disability decribed to Greg Cigan and colleagues in this groundbreaking study. This article is part of a series of extended abstracts of research undertaken by nurses in practice

Being held still and not being informed about why a procedure was being carried out are some of the upsetting experiences children with a learning disability decribed to Greg Cigan and colleagues in this groundbreaking study. This article is part of a series of extended abstracts of research undertaken by nurses in practice

Clinical procedures are activities such as blood pressure testing, radiological investigations and blood tests performed by healthcare practitioners for diagnosing, monitoring or treating an illness.


Reasonable adjustments should be made for children with an intellectual disability
undergoing clinical procedures. Picture: Alamy

Children and young people with an intellectual disability – learning disability is the term used in the UK – are prone to developing physical illnesses including epilepsy and congenital heart disease, and are therefore frequent visitors to healthcare settings for clinical procedures (Short and Calder 2013, Iacono et al 2014).

Clinical procedures can cause anxiety, fear and resistance among children and young people (Coyne and Scott 2014). Studies show that if children and young people without an intellectual disability become uncooperative during a procedure they are sometimes held still by adults, which can be upsetting for all involved (Brenner 2013, Bray et al 2016). It was identified that more research was needed to determine how children and young people with an intellectual disability, and their parents, experience clinical procedures (Peninsula Cerebra Research Unit 2016).

Design and methods

This study adopted a qualitative research design underpinned by the principles of grounded theory to explore how clinical procedures are experienced by children and young people with an intellectual disability, and their parents. Grounded theory is the discovery of emerging patterns in data.

Semi-structured, audio-recorded face-to-face interviews were conducted with 13 children and young people age 7-15 with a mild-to-moderate intellectual disability, and 19 parents. The communication tool known as Talking Mats (Murphy 1998) was used during some of the interviews with children and young people to help increase engagement and the amount of information that the child or young person could convey (Figure 1). Data were coded and categorised, and subjected to constant comparative analysis in accordance with grounded theory. Ethical approvals were obtained from the university and a national research ethics committee.


Figure 1. Example of a Talking Mats completed by a child
(Reproduced with permission from Widgit Software)

Findings

Parents reported taking a range of actions to ensure that a procedure was completed, including preparing their children in advance, offering rewards for their children’s cooperation and holding their children still if they were uncooperative. Some parents described how they sometimes withheld information about an upcoming procedure from their children to try and reduce anticipatory upset. Children and young people reported that they did not always understand why a procedure was being carried out and what would happen during a procedure. Holding was reported by parents and children and young people as being upsetting, although some parents said that their children forgot about ‘being held’ soon after a procedure had been completed.

Reflections

Despite historically being excluded from participating in research, children and young people with an intellectual disability can provide valuable and important first-hand reports of their experiences of healthcare. Future healthcare research should recognise the developing agency of this group of children and young people, and ensure their views are solicited wherever possible.

Implications for practice

Clinical procedures can be challenging and upsetting events for children and young people with an intellectual disability, and their parents. Healthcare practitioners should aim to make reasonable adjustments when children and young people with an intellectual disability undergo clinical procedures, such as offering longer appointment times. Future research should look examine the effectiveness of interventions such as targeted preparation and distraction with these children and young people, and how these interventions influence their experiences of procedures.

References


Greg Cigan is a lecturer in nurse education, PhD candidate and is the 2017 winner of the Research Award provided by Nursing Children and Young People supported by the RCN’s Research in Child Health community; Lucy Bray is a professor child health literacy; Barbara Jack is a professor of nursing, director of the evidence-based practice research centre and the head of research and scholarship; Axel Kaehne is a reader in health service research.

All work in the faculty of health and social care at Edge Hill University, Ormskirk, Lancashire, England. On behalf of the RCN’s Research in Child Health community

Acknowledgement

This study was funded through a PhD studentship from Edge Hill University and external grants from the Eaton Fund and the Professionals Aid Council. The authors wish to thank these organisations, schools, charities, parents and carers support groups for their help with this study

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