Autism Comes to the Hospital: Perspectives of Child Life Specialists

Background: Children with Autism Spectrum Disorders (ASD) often have complex health needs and therefore are likely to visit a variety of health care settings, including acute care hospitals. Pervasive social, communication, behavioral, and sensory challenges associated with ASD are likely to be amplified in a hospital setting.  Given these difficulties, it is important to understand the ways in which health care providers can appropriately care for these vulnerable patients.

Objectives: Child Life Specialists are pediatric health care professionals trained to help children cope with the social and emotional aspects of the hospital experience, especially through play-based interventions. In a previous investigation, Child Life Specialists were generally touted as helpful health care providers through a series of in-depth interviews with children with ASD, their parents, and other health care providers.  Therefore, the purpose of the current study was to understand the unique perspectives of Child Life Specialists who provide hospital care to pediatric patients with ASD in the hospital.  The ultimate objective of this study is to use these findings to inform best practices throughout the hospital for child patients with ASD.  

Methods: Two focus groups were conducted with Child Life Specialists (N = 21) at a large urban Canadian pediatric hospital.  Participants described their experiences working with children with ASD in the hospital setting, strategies they found helpful or unhelpful, and their recommendations to improve patient care.

Results: Findings from our focus groups revealed that given their developmentally-focused training, Child Life Specialists perceived themselves to be well-equipped to provide highly competent care to pediatric patients with ASD.  Participants reported listening to and communicating with parents openly for suggestions on how to provide appropriate support given his or her child’s specialized needs.  Participants recognized that parents were often strong advocates for their children, and therefore supported parents regarding advocacy issues as needed.  Overall, Child Life Specialists reported a variety of skills, strategies, tools, and resources they use in supporting children with ASD who are hospitalized.  Participants also stressed the importance of a strong multidisciplinary team and the need to recognize Child Life Specialists’ valuable role in supporting these patients proactively, before challenges arise.

Conclusions: Results from our previous investigation of the experiences of pediatric patients with ASD who were hospitalized revealed that health care providers wanted specialized expertise regarding ASD and perceived that as an important component of building competence to appropriately support these patients.  However, findings from this study revealed that Child Life Specialists already possess many of the skills, tools, and resources to appropriate support the special needs of these children.  Child Life Specialists provided their perspectives of the hospital experiences of children with ASD and their families.  Participants’ recommendations from this study have been used to further refine family- and staff-friendly resource toolkits that will be implemented at this hospital in the near future.