Individualised hospital care pathways for children with autism
Date First Published:
September 9, 2013
Last Updated:
October 28, 2013
Report by:
R Morgan, K Pope, Professional Lead for Occupational Therapy, Senior Lecturer ( Central Manchester University Hospitals/University of Salford)
Search checked by:
Jane Johnstone , Central Manchester University Hospitals/University of Salford
Three-Part Question:
In [children with autism] does an [individualised hospital pathway][reduce patient anxiety and increase cooperation with interventions]?
Clinical Scenario:
A young person with autism comes to hospital for an intervention and the procedure is cancelled as a result of the patient’s challenging behaviour and distress. You wonder if an individualised care plan would have reduced patient anxiety and improved cooperation with the intervention.
Search Strategy:
AMED, BNI, CINAHL, EMBASE and MEDLINE 1995 – 2013. Search History - autism AND spectrum AND disorder, hospitalised AND child. All children; 0-18 years.
Relevant Paper(s):
| Study Title | Patient Group | Study type (level of evidence) | Outcomes | Key results | Study Weaknesses |
|---|---|---|---|---|---|
| Using Picture Schedules in Medical Settings for Patients with an Autism Spectrum Disorder Chebuhar A, McCarthy AM, Bosch J, Baker S. 2013 USA | Autism | Descriptive feasibility study Parents and professionals surveyed Level 3 (NICE) |
Picture schedules made hospital procedures more tolerable for most patients | Picture schedules and increasing autism awareness for children with autism attending hospital are useful in optimising communication and relieving anxiety and distress behaviours | Small number of surveys returned |
| Evaluation of Coping Kit for Children with Challenging Behaviours in a Pediatric Hospital Drake J, Johnson N, Stoneck A, Martinez D, Massey M 2012 USA | Children aged 2-18yrs with developmental disability | Nursing cross-sectional post-test survey Level 2- (NICE) | Use of a distraction kit reduced stress for patient and staff | A distraction kit is one part of an intervention package required by children with autism in hospital | Small sample of nurses Outcome measures for anxiety & behaviour were not used |
| Ensuring Successful Admission to Hospital for Young People with Learning Difficulties, Autism and Challenging Behaviour: a Continuous Quality Improvement and Change Management Programme Pratt K, Baird G, Gringras P. 2012 UK | Children with autism spectrum conditions | Audit Parents’ focus groups Staff interviews Level 2- (NICE) |
Pre-admission planning and autism awareness raising improves the patient experience from family and staff perspective and can optimise access to health care | Completion of a structured checklist by a key worker in hospital reduces distress for children with autism | Small number of parents and staff audited |
| The Anaesthetic Management of Autistic Children Rainey, L and van der Walt JH. 1998 Australia | Autistic children requiring anaesthesia | Case reports Level 3 (NICE) |
Pre-admission planning minimises stress for child and family | Early identification of autistic children requiring anaesthetic essential including use of electronic database | Limited descriptive opinion |
| Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting Scarpinato N, Bradley J, Kurbjun K, Bateman X, Holtzer B, Ely B. 2010 USA | Children with autistic spectrum disorders | Audit of patient database Clinical case studies Parent survey Level 2- (NICE) | The best plan of care is agreed with parents and contains strategies that are individualised to the needs of patients to optimise the quality of patient care | Autism awareness training and resources to meet patients’ individualised needs are needed in health settings to improve access and deliver safe / consistent care | Limited case studies Small sample size No control group Participants limited to parents |
| Perioperative Psychosocial Interventions for Austistic Children Undergoing ENT Surgery Seid M, Sherman M, Seid AB. 1997 USA | Children with autism undergoing surgery | Clinical case studies Level 2- (NICE) | Greater patient/parent satisfaction, better clinical outcomes and cost savings can result from using individual management plans with children with autism undergoing surgery in collaboration with parents | Operative course for children with autism may be improved by use of an individualised perioperative care plan | Limited case studies |
| Caring for Children and Adolescents with Autism who Require Challenging Procedures Souders MC, DePaul D, Freeman KG, Levy SE. 2002 USA | Children with autism undergoing healthcare procedures | Descriptive findings from previous randomised crossover double blind trial Level 2 (NICE) | Individualised strategies incorporated in a care plan can optimise quality of care and achieve the healthcare goal | Preparation and behavioural interventions may help meet the unique needs of children with autism to successfully undergo medical procedures | Limited case studies Limited sample |
| An Audit of Peroperative Management of Autistic Children van der Walt JH and Moran C. 2001 Australia | Children with autism receiving anaesthesia | Prospective audit of a patient database and management programme Level 3 (NICE) | Pre and post operative planning and a flexible approach for children with autism maximises compliance with anaesthetic procedures | Early discharge Less frequent use of sedation/restraint Less stress for patient continuity of care | Relatively small number Uncontrolled research conditions |
| Visual Symbols in Healthcare Settings for Children with Learning Disabilities and Autism Spectrum Disorder Vaz I 2013 UK | Children with autism spectrum disorder and learning disabilities | Health professionals in healthcare settings survey Level 3 (NICE) | Visual symbols applicable to healthcare settings increased patients understanding of verbal explanations in medical settings reducing stress/anxiety for children and more productive for healthcare staff | Visual symbols help explain tests and treatments before and during medical appointments | Small sample used in school medical setting not hospital |
Author Commentary:
Challenges posed by children with autism accessing hospital services are reported internationally.
Recommendations from published literature would suggest a positive benefit but are limited to audit and case study evidence.
Recommendations from published literature would suggest a positive benefit but are limited to audit and case study evidence.
Bottom Line:
Currently there is insufficient good evidence to recommend for or against the use of an agreed individualised care pathway for this group of patients. Local policy should be followed taking into account the specific needs of the patient and their family.
References:
- Chebuhar A, McCarthy AM, Bosch J, Baker S. . Using Picture Schedules in Medical Settings for Patients with an Autism Spectrum Disorder
- Drake J, Johnson N, Stoneck A, Martinez D, Massey M. Evaluation of Coping Kit for Children with Challenging Behaviours in a Pediatric Hospital
- Pratt K, Baird G, Gringras P.. Ensuring Successful Admission to Hospital for Young People with Learning Difficulties, Autism and Challenging Behaviour: a Continuous Quality Improvement and Change Management Programme
- Rainey, L and van der Walt JH. . The Anaesthetic Management of Autistic Children
- Scarpinato N, Bradley J, Kurbjun K, Bateman X, Holtzer B, Ely B. . Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting
- Seid M, Sherman M, Seid AB. . Perioperative Psychosocial Interventions for Austistic Children Undergoing ENT Surgery
- Souders MC, DePaul D, Freeman KG, Levy SE. . Caring for Children and Adolescents with Autism who Require Challenging Procedures
- van der Walt JH and Moran C. . An Audit of Peroperative Management of Autistic Children
- Vaz I . Visual Symbols in Healthcare Settings for Children with Learning Disabilities and Autism Spectrum Disorder