Ethical clearance was obtained from Western University and Wilfrid Laurier University Research Ethics Boards prior to secondary data analyses of the interRAI ChYMH and ChYMH-DD data set.
All data analyzed were gathered using the interRAI ChYMH and ChYMH-DD between 2012 and 2016. These assessments were completed at health care agencies to which children are often referred by family doctors, pediatricians, parents, or other health care professionals. All individuals administering the assessments completed 2.5 days of intensive training. Assessments aimed to gather as much information from all available sources, including parents, clinical records, other services, as well as the children themselves, with appropriate consent. It is important to note that assessments cannot be submitted into the database unless complete; therefore, assessments do not consist of any missing data. The assessments are then entered into a database where they are de-identified and encrypted. The assessments were then entered into a database where they were de-identified, password protected, and encrypted.
interRAI Instruments: ChYMH and ChYMH-DD
The ChYMH and ChYMH-DD use a semi-structured assessment format with the child and family/guardian/caregiver to collect information across a broad range of areas known to affect child and youth mental health (Stewart, Hirdes et al., 2015; Stewart, LaRose et al., 2015). With parent consent, additional information can be collected from clinical files and other health care agencies. The ChYMH is designed for children without ID, suggesting their intellectual functioning is above 70, while the ChYMH-DD is specific for children and adolescents with developmental disabilities, such as autism, with ID, suggesting their intellectual functioning is under 70 (Stewart, Hirdes et al., 2015; Stewart, LaRose et al., 2015). Both tools consist of approximately 400 items regarding multiple areas known to affect health and wellbeing (e.g., independence in daily activities, health conditions, family and social relations, communication abilities) (Stewart, Hirdes et al., 2015; Stewart, LaRose et al., 2015).
interRAI is a not-for-profit international group that develops clinical instruments for vulnerable populations. The interRAI instruments are a validated and reliable comprehensive, needs-focused suite of tools to improve continuity of care, provide early identification of issues, and suggest possible interventions (Carpenter, 2006; Fries et al., 2019; Gray et al., 2009; Hirdes et al., 2002, 2008, 2020; Lau et al., 2018; Lau et al., 2019; Poss et al., 2008; Stewart et al., 2019; Stewart & Hamza, 2017; Stewart, Celebre et al., 2020). Within this suite of instruments are the ChYMH and ChYMH-DD tools, which are comprehensive, multidisciplinary mental health assessment systems for children and youth from 4 to 18 years of age who are referred to either community-based (outpatient) or residential (inpatient) services (Stewart, Hirdes, Curtin-Telegdi, Perlman et al., 2015; Stewart, LaRose, Gleason, Nicolson et al., 2015; Stewart, Theall, Morris, Berg et al., 2015; Stewart, Theall, Morris, Berg et al., 2016). These tools provide clinical information to assist with clinical decision-making, early intervention and identification of areas of risk. Within the assessment system are collaborative action plans, which are used to 1) maximize the young person's functional capacity and quality of life, 2) address physical and mental health problems, and 3) enhance the young person's level of independence (Stewart, Hirdes, Curtin-Telegdi, Perlman et al., 2015; Stewart, LaRose, Gleason, Nicolson et al., 2015; Stewart, Theall, Morris, Berg et al., 2015; Stewart, Theall, Morris, Berg et al., 2016).
A completed assessment has trigger areas that indicate collaborative action plans (CAPs) are warranted, which are supported by evidence-based practices (Stewart, Theall, Morris, Berg et al., 2015; Stewart, Theall, Morris, Berg et al., 2016). For each CAP triggered, the tool provides evidence-based approaches to guide interventions for a child or youth who could benefit from care intervention. Guidelines aim to minimize the specific concern targeted, thus enhancing quality of life. Responses from one or several items in combination will trigger specific CAPs. For example, the Injurious Behaviour CAP is composed of the following four items in a multiple-choice format: self-injurious behavior in the last three days, physical abuse in the last three days, destructive behavior toward property in the last three days, and violence to others in the last seven days (Stewart, Theall, Morris, Berg et al., 2016). Should one or more of the issues addressed in these items be present, the Injurious Behaviour CAP will be triggered. CAPs are categorized into the five following domains: 1) safety, 2) health promotion for the ChYMH and health and wellbeing for the ChYMH-DD, 3) functional status, 4) service and supports, and 5) family life and social integration (Stewart et al., 2015; Stewart et al., 2016).
Individuals with autism experience multiple health concerns; however, a study assessing the multiple domains affected by autism is lacking. The purpose of this study was to assess the multiple domains affected by autism through the analysis of the ChYMH and ChYMH-DD. By doing so, the overall health and health needs of children and youth with autism, with and without ID, were revealed, allowing for the development and implementation of specific interventions required to minimize such concerns.
Description of Data and Data Analysis
Participants consisted of 378 individuals with autism between the ages of 4 and 18 years. Of this sample, 272 individuals did not have ID, while 106 individuals had ID. For this particular analysis, individuals with ID (IQ less than 70) and individuals without ID (IQ greater than 70) were analyzed separately given the variability between these groups. Regarding those without ID, 212 were males and 80 were females with a mean age of 12.77 years (SD = 3.16). For those with ID, 81 were males and 25 were females and the mean age was 11.8 years (SD = 3.29). Table 1 describes additional demographic information.
Descriptive statistics for all CAPs on the ChYMH (a total of 30 CAPs), and all CAPs from the ChYMH-DD (a total of 23 CAPS) were examined using Statistical Package for Social Sciences (SPSS) 24 (IBM Corp., 2016). Results were then summarized to determine the overall health needs of children and youth with autism. CAPs were re-coded into 'not triggered' and 'triggered,' even if additional categories were available. Collapsing response options avoided cell counts less than five, therefore reducing the potential of revealing the identity of participants. Some CAPs on the ChYMH and the ChYMH-DD differed, and therefore, could not be compared.
In addition to descriptive statistics, CAPs were chosen for cross-tabulations based on the literature. Cross-tabulations were conducted on these CAPs to determine the number of children and youth who triggered two specific CAPs. The output was then analyzed to determine how many individuals triggered both of the selected CAPs.
Pediatr Nurs. 2020;46(2):83-91. © 2020 Jannetti Publications, Inc.