Returning Home after Hospitalization - Insights from Parents of Adolescents with Autism Spectrum Disorder and Intellectual Disability

Background: Adolescence is a difficult period in one’s life, particularly for adolescents with Autism Spectrum Disorder (ASD) and their family. It is in this period of their lives that youth with ASD are the most likely to be hospitalized in a mental health unit, especially if they have intellectual disability (ID). Disruptive and aggressive behaviors, which include self-injury, are the leading reason for hospital admission and emergency department visits. Moreover, studies show that the inaccessibility or lack of specialized services cause these adolescents to consult emergency services on more occasions than youth without disabilities. Along the same line, repeated hospital admission can occur due to the lack of appropriate services, even with well-planned discharges.

In Canada, several services are currently offered to children with ASD and their family. More specifically in the province of Quebec, those services are divided as primary (first-line), specific (second-line) and specialized (third-line) services. However, literature on the effectiveness of these services after hospitalization is sparse, and no study has yet explored the experience of parents using those services for their children in Quebec. Therefore, to adjust services and reduce re-hospitalization rates, it is important to assess the experience of parents of adolescents with ASD and ID after hospitalization throughout first-, second- and third-line services.

Objectives: To explore the experience of parents of adolescents with ASD and ID after hospitalization in a child psychiatric unit across the first-, second- and third-line services.

Methods: In this qualitative research, a descriptive and exploratory form was used. A total of six face-to-face semi-structured interviews were conducted with nine parents (six mothers and three fathers) of six adolescents (five boys and one girl) with ASD and ID. To be eligible, each participant had to live in the greater region of Montreal, speak French and have a child with ASD and ID who was hospitalized in a child psychiatric unit between the age of 12 and 17 years old.

Results: Results show that the experience of these parents consists of a succession of disappointments as the offered services were unable to address their needs and expectations. Indeed, their biggest desire —keeping their children at home— could not be met as five out of six adolescents were separated from their families and put in a residential or institutional placement. Their struggles can be summarized in four main themes: 1) the expectations expressed, 2) the encountered difficulties, 3) the solutions put in place, and finally 4) the feeling of failure, which is related with the out-of-home placement.

Conclusions: In light of these findings, changes need to be made in the follow-up services offered to these families after the discharge of their adolescent. Among other things, the return home must be better prepared by appointing a health care professional as a reference person to each family and by offering uninterrupted services across the lifespan based on the true needs of these families and their adolescent.