Autism spectrum disorder

Research in Developmental Disabilities 107 (2020) 103792

Available online 24 October 2020 0891-4222/© 2020 Elsevier Ltd. All rights reserved.

Barriers and facilitators to treating insomnia in children with autism spectrum disorder and other neurodevelopmental disorders: Parent and health care professional perspectives

Kim M. Tan-MacNeill a, Isabel M. Smith a, b, c, Anastasija Jemcov a, Laura Keeler a, Jill Chorney a, c, d, e, Shannon Johnson a, Shelly K. Weiss f, Esmot Ara Begum a, Cary A. Brown g, Evelyn Constantin h, Roger Godbout i, Ana Hanlon-Dearman j, Osman Ipsiroglu k, Graham J. Reid l, m, n, o, Sarah Shea b, c, Penny V. Corkum a, c, p,* a Department of Psychology & Neuroscience, Dalhousie University, Canada b Department of Pediatrics, Dalhousie University, Canada c IWK Health Centre, Canada d Department of Anesthesia, Pain, and Perioperative Medicine, Dalhousie University, Canada e Centre for Pediatric Pain Research, IWK Health Centre, Canada f Division of Neurology, Department of Paediatrics, University of Toronto, Canada g Faculty of Rehabilitation Medicine, University of Alberta, Canada h Department of Pediatrics, McGill University, Canada i Department of Psychiatry, Université de Montréal, Canada j Faculty of Health Sciences, University of Manitoba, Canada k Faculty of Medicine, University of British Columbia, Canada l Department of Psychology, Western University, Canada m Department of Family Medicine, Schulich School of Medicine and Dentistry, Western University, Canada n Department of Paediatrics, Schulich School of Medicine and Dentistry, Western University, Canada o Children’s Health Research Institute & Lawson Health Research Institute, Canada p Department of Psychiatry, Dalhousie University, Canada

A R T I C L E I N F O

Number of reviews completed is 2

Keywords: Children Insomnia Neurodevelopmental disorders Treatment accessibility

A B S T R A C T

Background/aims: Insomnia is highly prevalent in children with neurodevelopmental disorders (NDDs), yet little research exists on sleep treatment access, utilization, and provision in this population. This study explores barriers and facilitators to access, use, and provision of treatment for sleep problems as experienced by parents of children with NDDs, including Autism Spectrum Disorder (ASD), Attention-Deficit/Hyperactivity Disorder (ADHD), Cerebral Palsy (CP) and Fetal Alcohol Spectrum Disorder (FASD), and health care professionals who work with children with these conditions.

Abbreviations: BNBD, Better Nights, Better Days (name of intervention); BNBD-NDD, Better Nights, Better Days for Children with Neuro- developmental Disorders (name of intervention); TD, typically developing; NDD, neurodevelopmental disorder; ADHD, attention-deficit/hyperac- tivity disorder; ASD, autism spectrum disorder; CP, cerebral palsy; FASD, fetal alcohol spectrum disorder; HCP, health care professional; BCBA, Board-Certified Behaviour Analyst; BIQ, Behavioural Insomnia Questionnaire; SILS, Single Item Literacy Scale; PSQ, Pediatric Sleep Questionnaire; RCT, randomized controlled trial.

* Corresponding author at: Department of Psychology & Neuroscience, Dalhousie University, Life Sciences Centre, Rm 2521, 1355 Oxford Street, Halifax, NS, B3H 4R2, Canada.

E-mail address: [email protected] (P.V. Corkum).

Contents lists available at ScienceDirect

Research in Developmental Disabilities

journal homepage: www.elsevier.com/locate/redevdis

https://doi.org/10.1016/j.ridd.2020.103792 Received 15 May 2020; Received in revised form 22 September 2020; Accepted 5 October 2020

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Barriers Parents Method: Transcripts from online focus groups and interviews, conducted separately with parents

of children with NDDs (n = 43) and health care professionals (n = 44), were qualitatively analyzed using content analysis for key themes. Results: Barriers included limited access to/availability of treatment, lack of knowledge/training, NDD-specific factors (e.g., symptoms, medications, and comorbidities), parent factors (e.g., ca- pacity to implement treatment, exhaustion), and the challenging, intensive nature of sleep treatment. Facilitators included positive beliefs and attitudes, education, support, and ability to modify treatments for NDD symptoms. Barriers and facilitators were similar across all four NDDs. Conclusions: Results highlight a need for more education about sleep in NDDs and to develop accessible interventions, as well as the potential of a transdiagnostic approach to sleep treatment in this population.

What this paper adds

This paper contributes to our understanding of parents’ experiences of seeking, accessing, and using treatments for behavioural sleep problems, such as insomnia, for their children with neurodevelopmental disorders (NDDs). At the same time, this paper provides information on front-line health care professionals’ experiences with providing treatments for insomnia for children with NDDs. By engaging these key stakeholders, this study informs our understanding of unmet needs in the areas of sleep treatment accessibility, delivery, and use, as well as professional development and training needs related to sleep treatment. Findings from this study also add to a growing body of evidence that supports a transdiagnostic approach to treating sleep problem in children with NDDs.

1. Introduction

1.1. Background

Neurodevelopmental disorders (NDDs) emerge in early childhood and are linked to disturbances in central nervous system func- tioning, which can cause impaired cognition, communication, motor skills, and/or behaviour, and functional impairment in a variety of daily life domains (American Psychiatric Association, 2013). Sleep problems are highly prevalent in children with NDD, with rates ranging from 40 to 86% (Robinson-Shelton & Malow, 2016; Romeo et al., 2014). Insomnia, the most common sleep problem expe- rienced by children with NDD, includes difficulty falling and staying asleep (American Academy of Sleep Medicine, 2014). Throughout this paper, we will use the terms insomnia and sleep problems interchangeably.

Sleep problems have been shown to increase the severity of NDD symptoms as well as behavioural and emotional problems, and to have negative effects on children’s daytime functioning (Tudor, Hoffman, & Sweeney, 2012; Goldman et al., 2011; Newman, O’Regan, & Hensey, 2006). Children’s sleep problems occur within a broad psychosocial context and may affect the whole family; for example, parents of children with NDDs and sleep problems experience high levels of stress (Doo & Wing, 2006).

Development of effective treatments for insomnia in children with NDDs is important, given the high prevalence and negative effects of sleep problems. Behavioural interventions are the first-line recommendation for pediatric insomnia in both NDD and typi- cally developing (TD) populations (Malow et al., 2012). Research on effective sleep interventions for children with NDDs is expanding, with several recent randomized controlled trials (RCTs) (e.g., Hiscock, Sciberras, & Mensah, 2015). A recent systematic review found support for a transdiagnostic behavioural approach to treating sleep problems in children with NDDs (Rigney et al., 2018), wherein the same behavioural treatment principles are applied across multiple diagnoses, with minor modification of strategies originally developed for TD children (e.g., psychoeducation, healthy sleep practices, extinction).

Emerging research suggests that access to and uptake of behavioural sleep interventions by families of children with NDDs is limited (e.g., Bessey, Coulombe, Smith, & Corkum, 2013; Boerner, Coulombe, & Corkum, 2014). Additionally, front-line health care professionals (HCPs) are generally not well trained to provide sleep interventions (e.g., Boerner et al., 2014), much less for special populations such as children with NDDs. There is a great need to explore factors influencing families’ seeking of, access to, and uptake of treatment for sleep problems in their children with NDDs, as well as the factors influencing HCPs’ ability to provide such treatment. This information will provide a foundation for the development of effective sleep interventions for this population.

Focus groups were conducted (or interviews when participants were not able to attend focus groups) to gather the perspectives of parents of children with NDDs and HCPs on barriers and facilitators to access, uptake, and provision of sleep treatments for children. Four prevalent NDDs that encompass a range of symptoms and functional impairments were included: Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Cerebral Palsy (CP), and Fetal Alcohol Spectrum Disorder (FASD). The results of the study will identify unmet needs in the areas of treatment delivery and use, accessibility, and professional development and training in order to inform the development of a sleep intervention for children with these four NDDs.

1.2. Research objectives

The research objectives were to explore the barriers and facilitators experienced by 1) parents, in seeking, accessing, utilizing, and implementing treatments for sleep problems in children with NDDs; and 2) HCPs, in their access to information about and provision of

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sleep treatments for children with NDDs. We predicted that lack of knowledge, training, and time may be barriers reported by HCPs. We expected that both parents’ and HCPs’ beliefs and attitudes about the nature of sleep problems in NDDs and their treatability would influence responses regarding treatment seeking, access, uptake, and provision.

2. Method

2.1. Participants

This study was approved by the Research Ethics Board of the IWK Health Centre in Halifax, Nova Scotia, Canada. Informed consent was obtained from all participants, who were recruited online via social media, through sharing of recruitment advertisements by NDD-related parent and health organizations, and through the authors’ professional networks. Conducting individual interviews became necessary for some participants, due to difficulty accommodating time zones and schedules.

Fig. 1. Parent study flow diagram.

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2.1.1. Parent participants The final sample included 43 parents or caregivers (hereafter, parents) of children aged 4–12 years with parent-reported diagnoses

of ADHD (n = 9), ASD (n = 20), CP (n = 6), and/or FASD (n = 8), as well as behavioural sleep problems confirmed by a screening

Table 1 Demographic Information for Parent Participants and their Children.

Total Primary NDD Group

Parent Participant Demographics N = 43 ASD (n = 20)

ADHD (n = 9)

CP (n = 6)

FASD (n = 8)

Participants’ relationship to child Biological Mother 32 (74.4 %) 18 (90 %) 9 (100 %) 5 (83.3 %) Biological Father 3 (7%) 2 (10 %) 1 (16.7 %) Adoptive Mother 8 (18.6 %) 8 (100 %)

Participant (Parent/caregiver) Mean Age in Years (SD, range)

38.5 (SD = 7.1, 25− 65)

36.5 (SD = 5.2, 25− 47)

38.2 (SD = 4.7, 32− 45)

38.7 (SD = 8.5, 28− 52)

43.6 (SD = 10.5, 32− 65)

Participants’ relationship status Married/Common-law 33 (75.7 %) 15 (75 %) 6 (66.7 %) 5 (83.3 %) 7 (87.5 %) Single/Never legally married 3 (7%) 1 (5%) 1 (16.7 %) 1 (12.5 %) Separated/Divorced 6 (14.0 %) 4 (20 %) 2 (22.2 %) 1 (16.7 %) 1 (12.5 %)

Community of residence Rural 12 (27.9 %) 5 (25 %) 2 (22.2 %) 1 (16.7 %) 4 (50 %) Town 5 (11.6 %) 3 (15 %) 1 (11.1 %) 1 (16.7 %) 1 (12.5 %) City 26 (60.4 %) 12 (60 %) 6 (66.7 %) 4 (66.7 %) 3 (37.5 %)

Ethnic or Cultural Heritage White/Caucasian 39 (90.7 %) 19 (95 %) 8 (88.9 %) 6 (100 %) 6 (75 %) Aboriginal – Metis 1 (2.3 %) 1 (12.5 %) Other 2 (4.7 %) 1 (5%) 1 (12.5 %)

Highest Level of Education High school equivalent or less 3 (7%) 2 (10 %) 1 (16.7 %) Diploma or certificate from college, university, trade/technical/vocational school, or less

18 (41.2 %) 7 (35 %) 5 (55.5 %) 2 (33.3 %) 4 (50 %)

Bachelor’s/Undergraduate Degree (e.g., BA, BSc, BEd)

13 (30.2 %) 7 (35 %) 2 (22.2 %) 2 (33.3 %) 2 (25 %)

Graduate degree (e.g., MA, MSc, MEd, PhD, DSc, EdD)

8 (18.6 %) 4 (20 %) 1 (11.1 %) 1 (16.7 %) 2 (25 %)

Participant’s Current Employment Status Full Time 21 (48.8 %) 7 (35 %) 6 (66.7 %) 4 (66.7 %) 4 (50 %) Part Time 7 (16.3 %) 6 (30 %) 1 (12.5 %) Unemployed 1 (2.3 %) 1 (12.5 %) Student 1 (2.3 %) 1 (5%) Homemaker 8 (18.6 %) 6 (30 %) 2 (33.3 %) Other 4 (9.3 %) 2 (22.2 %) 2 (25 %)

Estimated Household Income Less than $30,000 3 (7%) 2 (10 %) 1 (16.7 %) $30,000 - $59,999 7 (16.3 %) 3 (15 %) 1 (11.1 %) 1 (16.7 %) 2 (25 %) $60,000 - $99,999 16 (37.2 %) 6 (30 %) 4 (44.4 %) 1 (16.7 %) 3 (37.5 %) $100,000 + 16 (37.2 %) 9 (45 %) 2 (22.2 %) 2 (33.3 %) 3 (37.5 %) $100,000 - $149,999 9 (20.9 %) 6 (30 %) 1 (11.1 %) 2 (33.3 %) $150,000 - $199,999 5 (11.6 %) 1 (5%) 1 (11.1 %) 3 (37.5 %) $200,000 and over 2 (4.7 %) 2 (10 %)

Average Number of Other Children in Home (mean; SD; range)

1.95 (.90, 1− 5) 1.85 (.49; 1− 3) 2.44 (1.13, 1− 5) 1.50 (.55, 1− 2) 2.00 (1.41, 1− 5)

Child Demographics N = 43 ASD (n = 20) ADHD (n = 9) CP (n = 6) FASD (n = 8) Child Sex

Male 29 (67.4 %) 15 (75 %) 6 (66.7 %) 3 (50 %) 5 (62.5 %) Female 14 (32.6 %) 5 (25 %) 3 (33.3 %) 3 (50 %) 3 (37.5 %)

Child Mean Age in years (SD, range) 8.5 years (SD = 2.5, 4.3–12.6)

9 years (SD = 2.5, 4.8–12.6)

6.9 years (SD = 2.3, 4.3–11.4)

8.3 years (SD = 2.3, 4.9–11.7)

9 years (SD = 2.3, 4.8–11.5)

Years Since NDD Diagnosis (SD, range) 4.2 (2.5, 1− 10) 4.1 (SD = 1.8, 2− 8)

2.6 (SD = 2.3, 1− 7)

5.8 (SD = 1.9, 4− 9)

5 (SD = 3.6, 1− 10)

Comorbid Diagnoses: Additional NDD, Mental Health, and Physical Disorders (may have multiple diagnoses) Presence of Parent-reported Diagnosis 30 (69.8 %) 12 (60 %) 5 (55.6 %) 5 (83.3 %) 8 (100 %)

Another NDD (ADHD, ASD, CP, or FASD) 9 (20.1 %) 2 (10 %) 1 (16.7 %) 6 (75 %) Learning Disability 7 (16.3 %) 2 (10 %) 1 (11.1 %) 2 (33.3 %) 2 (25 %) Intellectual Disability / Developmental Delay 9 (20.9 %) 3 (15 %) 2 (33.3 %) 4 (50 %) Mental Health disorder (e.g., at least one of: anxiety, mood, obsessive compulsive disorder, oppositional defiant disorder)

26 (60.5 %) 10 (50 %) 5 (55.6 %) 4 (66.7 %) 7 (87.5 %)

Note: One participant did not complete; multiple participants missed or skipped questions.

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questionnaire; only participants whose children’s diagnoses were made by a physician or psychologist (self-reported) were eligible to participate. In cases where children had comorbid ADHD with ASD, CP, or FASD, the ASD/CP/FASD diagnoses were considered primary for assigning them to a disorder group (e.g., comorbid FASD and ADHD = FASD group). As such, children of parents in the ADHD group could not have comorbid ASD, CP, or FASD. Parents were required to live in Canada, have access to a computer, internet, web-camera and microphone (or telephone), and be comfortable speaking/reading English. Parent-reported formal diagnoses of sleep disorders other than insomnia (e.g., sleep apnea or sleep-disordered breathing) were an exclusion criterion due to the potential confound with behavioural insomnia. Information about children’s comorbid diagnoses (e.g., NDD, neurological, physiological, mental health) and medication use was recorded but not used as exclusionary criteria.

Fig. 1 depicts parent participation, and Table 1 contains demographic information. Twenty-seven parents participated in focus groups (which ranged from 2 to 5 participants each) and 16 parents completed individual interviews. Most parents were biological mothers (74.4 %). The mean age of parents was 38.5 years (SD = 7.1, range = 25− 65), and most parents were married/common-law (n = 33, 75.7 %). Most lived in cities (n = 26, 60.4 %), were of Caucasian heritage (n = 39, 90.7 %), and had completed high school and some post-secondary education (n = 39, 90.7 %). The average reported number of other children in the home was 1.95 (SD = .9, range 1–5). Most parents were from Ontario (n = 17, 39.5 %), British Columbia (n = 8, 18.6 %), and Alberta (n = 7, 16.3 %), with the remainder from Nova Scotia (n = 4), New Brunswick (n = 2), Newfoundland and Labrador (n = 2), and Prince Edward Island, Manitoba, and Quebec (each n = 1).

Fig. 2. HCP study flow diagram.

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Most children were male (n = 29, 67.4 %) and mean age was 8.5 years (SD = 2.5, range 4.3–12.6). Most children had at least one other parent-reported diagnosis (n = 30, 69.8 %), including other comorbid NDDs (ASD, ADHD, CP, or FASD; n = 9, 20.1 %) or mental health diagnoses (n = 26, 60.5 %); anxiety was common (n = 16, 37.2 %). Children also had a range of parent-reported physical health conditions (n = 19, 44.2 %), most frequently epilepsy/seizure disorders (n = 5, 11.6 %), other neurological disorders (n = 7, 16.3 %), gastrointestinal disorders (n = 6, 14 %), and respiratory disorders (n = 4, 9.3 %).

In terms of behavioural insomnia (Anders & Dahl, 2007), fifteen (34.9 %) children met criteria for bedtime resistance/sleep onset problems, six (14 %) met criteria for night waking problems, and 18 (41.9 %) met criteria for both. Four children (9.3 %) were below threshold for behavioural insomnia, but were included as their parents reported high severity/impact of sleep problems. Twenty parents (46.5 %) reported that their children woke too early in the morning. Frequently reported problems were: problems falling asleep (n = 38, 88.4 %), lying awake in bed after lights out for more than 20 min (n = 38, 88.4 %), problems staying asleep (n = 34, 79.1 %), getting out of bed once expected to stay in bed for the night (n = 32, 74.4 %), and waking during the night with difficulty falling back asleep (n = 32, 74.4 %).

2.1.2. Health care professional participants The final sample included 44 credentialed Canadian HCPs who practiced with 4- to 12-year-olds with NDDs. As many HCPs

practiced with more than one NDD group, they were asked to choose the NDD with which they worked most often for the focus group/ interview. The breakdown of HCPs by NDD was as follows: ADHD (n = 8), ASD (n = 21), CP (n = 8), and FASD (n = 7). Eligible professions for participation included physicians, psychologists, nurses, social workers, occupational therapists, and Board-Certified Behaviour Analysts (BCBAs; certified behaviour analysts who primarily work with children with ASD and provide behavioural in- terventions). Fig. 2 depicts HCP participation. HCPs required access to a computer/internet, web camera and microphone (or tele- phone), and fluency in English. To ensure a diverse sample of HCPs, no minimum percentage of practice time was specified for working with children with NDDs or with sleep problems.

Twenty-one HCPs participated in focus groups (ranging from 2 to 4 participants each), whereas 23 participated in individual in- terviews. Table 2 shows demographic information. Professions included occupational therapists (n = 15), clinical psychologists (n = 10), general paediatricians (n = 1)/developmental paediatricians (n = 6), nurses (n = 4), BCBAs (n = 4; ASD only), family physicians/ general practitioners (n = 2), and social workers (n = 2). The majority of HCPs were from Ontario (n = 16, 36.4 %) and Nova Scotia (n

Table 2 Demographic Information for Health Care Professionals (HCPs).

Total Primary NDD Group

(N = 44) ASD (n = 21)

ADHD (n = 8)

CP (n = 8)

FASD (n = 7)

HCP Sex Male 3 (7%) 1 (4.8 %) 0 0 2 (28.6) Female 41 (93 %) 20 (95.2 %) 8 (100 %) 8 (100 %) 5 (71.4 %)

Highest Level of Education Bachelor’s Degree 9 (20.9 %) 3 (14.3 %) 2 (25 %) 3 (37.5 %) 1 (14.3 %) Master’s Degree 18 (41.9 %) 12 (47.1 %) 1 (12.5 %) 3 (37.5 %) 2 (28.6 %) MD 5 (11.6 %) 2 (9.5 %) 2 (25 %) 1 (14.3 %) PhD 8 (18.6 %) 3 (14.3 %) 2 (25 %) 1 (12.5 %) 3 (42.9 %)

Years of Practice (Mean, SD, range) 14.5 (SD = 10.9, 0.5–38)

12.7 (SD = 10.8, 1− 33)

13.9 (SD = 9.2, 1.5–31)

19.0 (SD = 13.8, 2− 38)

15.4 (SD = 9.8, 0.5–30)

Practice Area Primarily health 27 (61.4 %) 12 (57.1 %) 5 (62.5 %) 7 (87.5 %) 3 (42.9 %) Primarily mental health 9 (20.5 %) 7 (33.3 %) 1 (12.5 %) 1 (14.3 %) Evenly split between health/ mental health

3 (6.8 %) 1 (4.8 %) 2 (28.6 %)

Practice Setting Private practice 9 (20.5 %) 3 (14.3 %) 3 (37.5 %) 3 (42.9 %) Community health or mental health centre

7 (15.9 %) 5 (23.8 %) 2 (28.6 %)

Hospital 14 (31.8 %) 11 (52.4 %) 1 (12.5 %) 2 (25 %) University 1 (2.3 %) 1 (12.5 %) Other (e.g. non-profit, rehab, treatment centre)

8 (18.2 %) 1 (4.8 %) 1 (12.5 %) 5 (62.5 %) 1 (14.3 %)

Years of Experience Working with Children with NDDs (Mean, SD, range)

13.9 (SD = 9.9, 2− 35)

10.5 (SD = 6.5, 2− 30)

15.0 (SD = 11.7, 2− 30)

16.2 (SD = 31.1, 2.5–33)

20.3 (SD = 10.9, 8–35)

Self-reported estimated percentage of practice time working with children with NDD (Mean, SD, range)

48.6 % (SD = 31.1, 0.2–100)

59.7 % (SD = 28.6, 3–100)

25.4 % (SD = 30.3, 0.2–75)

38.6 % (SD = 22.5, 5− 70)

47.0 % (SD = 36.7, 5− 90)

Specialize in NDDs? Yes 34 (77.3 %) 19 (90.5 %) 3(37.5 %) 6 (75 %) 6 (85.7 %) No 10 (22.7 %) 2 (9.5 %) 5 (62.5 %) 2 (25 %) 1 (14.3 %)

Note: Three participants did not complete and one only partially completed the demographic / background information questionnaires.

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= 13, 29.5 %), followed by Alberta (n = 5, 11.4 %), British Columbia (n = 4, 11.4 %), New Brunswick (n = 3, 6.8 %), and Quebec (n = 3, 6.8 %). Most HCPs were female (n = 41, 93 %), had a Master’s or higher degree (n = 31, 70.5 %), and practiced primarily in healthcare settings (n = 27, 61.4 %), most commonly in hospitals (n = 14, 31.8 %). HCPs averaged 13.9 years of experience working with children (SD = 9.9, range 2–35 years); most specialized in working with children with NDDs (n = 34, 77.3 %).

2.2. Screening, eligibility, demographic, and background information measures

2.2.1. Parents Two-step screening was completed online: 1) Parents completed an author-made questionnaire targeting inclusion and exclusion

criteria. 2) Parents who met initial inclusion/exclusion criteria then completed a questionnaire consisting of general diagnostic in- formation, the Behavioural Insomnia Questionnaire (BIQ; Anders & Dahl, 2007; modified by authors) to assess the presence of behavioural sleep problems, and the first six items of the Pediatric Sleep Questionnaire (PSQ; Chervin, Hedger, Dillon, & Pituch, 2000) to screen for sleep apnea. The BIQ provides a cut-off score to determine presence of sleep onset and night-waking problems over the previous month; author additions included parent ratings of the perceived severity and impact of their children’s sleep problems across multiple domains (e.g., school, fatigue, family life), as well as reports of co-sleeping. Eligible parents then completed a Demographic Information Questionnaire (author-developed; based on Canadian census).

2.2.2. Health care professionals Health care professionals completed an author-made questionnaire that asked about inclusion and exclusion criteria, identifying

their professional group and the NDD group(s) with which they worked. Eligible HCPs completed a Health Care Professionals’ De- mographic Information and Training Questionnaire (author-adapted from measures in Meltzer, Phillips, & Mindell, 2009), which collected information on HCPs’ professional practice with NDDs, sleep-related training/education, practice setting, and self-rated competence in treating sleep problems.

2.3. Focus groups and interviews

After eligible parents and HCPs were enrolled in the study and scheduled for a focus group session or interview, participants were instructed in using the video-conferencing software and required to test the software prior to participation.

2.3.1. Description of focus groups/interviews Separate focus groups and interviews were held for parents (10 focus groups, 16 interviews) and HCPs (8 focus groups, 22 in-

terviews). Groups/interviews were separated by NDD (e.g., ASD-only parent focus group). Within HCP focus groups, HCPs of different disciplines were combined. Groups/interviews were conducted using encrypted video-conferencing software (Blackboard Collabo- rate/Collaborate Ultra) that displayed PowerPoint slides showing discussion questions for the participants. A minority of participants (parent n = 5, HCP n = 7) required teleconferencing (i.e., integrating a phone without video into the software) due to technical difficulties. One local HCP was interviewed and recorded in-person (at their request). Due to software constraints, the present study set a maximum of 5 participants per group plus a moderator, which is consistent with online focus group guidelines (Tuttas, 2014). Each focus group (approximate duration 1.5 hours) was facilitated by the first author (K.T.M.). Volunteer research assistants acted as second moderators and were available for technical support during focus groups. All interviews (approximate duration 1 hour) were con- ducted solely by the first author using the same software as the focus groups.

2.3.2. Topic guides Semi-structured topic guides for focus groups/interviews focused on the experience of treatment, from seeking to implementing.

Parent topics included knowledge of sleep in children with NDDs, experience of seeking treatment for insomnia, uptake/use of treatments (separated into medications, over-the-counter treatments such as melatonin/natural remedies, and behavioural treat- ments). HCP topics included familiarity with and extent of involvement with sleep treatment for children with NDDs, knowledge about and access to sleep treatments, and provision of sleep treatment. At the end of each session, participants were asked what they felt was the most important issue discussed and if anything had been missed. Participants were not asked to review transcripts.

2.4. Analysis

Focus group/interview sessions were audio-/video-recorded, transcribed, and de-identified. Transcripts were analyzed in NVivo software (QSR International, NVivo for Mac, version 12.4.0), using qualitative content analysis (Schreier, 2012). The first author (K.T. M.) developed separate coding frames for parents and HCPs in consultation with authors I.S. and P.C. and trained a second coder (L.K.). Transcripts were reviewed and recoded multiple times to ensure coding agreement and that the coding frames were suitable. Parent and HCP data were coded separately.

As transcripts were reviewed, the smallest units of analysis that contained a coherent meaning (typically a sentence, group of sentences, or a single response from a participant) were identified as separate codes. Given the complexity of responses, some sections of text yielded several different codes. Following the initial round of coding to identify individual barrier and facilitator codes, the codes were grouped into broader themes and sub-themes. These themes constituted the final barriers and facilitators and are presented in Tables 3–6. Frequency data (i.e., number of participants who endorsed each code) are available upon request. To examine group

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differences, complete lists of codes and frequencies were generated for all parent data and all HCP data respectively, then separate lists were generated for each NDD group (e.g., parents – ASD, ADHD, CP, FASD). Similarities and differences were noted in the presence of codes across NDD groups (within parent or HCP data overall).

3. Results

3.1. Parents

3.1.1. Barriers Four barriers were identified for parents, consisting of 34 individual codes (see Table 3): 1. Access to and Availability of Services, 2.

Experience with Service (HCPs) and Treatment Implementation, 3. Parent Factors (a. Beliefs and attitudes, b. Experience and impact of sleep problems, c. Knowledge), and 4. NDD-Specific factors.

Lack of knowledge about sleep, combined with limited availability of services and difficulty accessing available treatments, were frequently reported barriers by parents. When parents were able to access treatment, some reported negative experiences with HCPs such as feeling unheard or perceiving their HCPs as not knowledgeable about sleep and NDD. For example, a parent commented, “I

Table 3 Parent Barriers and Codes.

Barrier Codes

1. Access to/Availability of Services 1 Long wait times 2 NDD specialists difficult to access or not available 3 Need to access multiple HCPs or disciplines 4 Not able to attend appointments 5 Sleep treatment not affordable 6 Lack of available information & resources

2. Experience with Service (HCPs) and Treatment Implementation

7 HCPs lack knowledge about sleep & NDD 8 Perceptions of HCPs as not helpful 9 Negative interpersonal experience with HCPs 10 Behavioural treatment can lead to a behaviour burst or dysregulation (unwanted) 11 Inconsistent response to treatment 12 Individualization – no one size fits all treatment 13 Treatment not working 14 Trial and error (don’t know what will work / why) 15 Treatment is hard (challenging)

3. Parent Factors 3A. Beliefs & Attitudes

16 Reluctance to stop using what works even if problematic (e.g., co-sleeping) 17 Reluctance to use medication for sleep 18 Reluctance to use melatonin for sleep 19 Cultural beliefs – co-sleeping acceptable 20 Expectation of negative outcome 21 Belief that child’s brain is wired differently in NDD 22 Belief that sleep tips for TD don’t apply for NDD

3B. Experience and Impact of Sleep Problems 23 Parental guilt/self-blame/anxiety for sleep problem 24 Feeling judged/stigmatized by others 25 Sleep is not first priority 26 Caregivers have different perspectives about sleep 27 Negative impact on family 28 Parental exhaustion & stress

3C. Knowledge 29 Lack of awareness about sleep in NDD 30 Lack of knowledge of underlying cause of sleep problem 31 Lack of knowledge of where to go for help or what to ask

4. NDD-Specific Factors 32 Complexity and comorbidity associated with NDD complicates sleep treatment (e.g., child

anxiety, attachment concerns, trauma history, physiological issues) 33 NDD medications negatively affect sleep 34 NDD symptoms make sleep problems harder to treat (e.g., needing to wind down; limited communication ability; pain/physical symptoms in CP; difficulty taking medication; level of functioning; rigidity/difficulty with transitions; sensory sensitivities)

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don’t think there’s a lot of information available to doctors around this. It seems to be an area that doesn’t have a lot of research” (P32, ADHD). Some parents reported that HCPs only seemed to offer melatonin and medication as treatment options, and other parents expressed reluctance to use such treatments for sleep. A parent shared, “our doctors just automatically wanted to medicate [for sleep problems]” (P31, CP). Another parent stated, “The pediatrician who diagnosed my daughter with ADHD simply said as an aside, ‘Oh for sleep, you know you can give her melatonin and you can do it long term,’ and that was all that was ever said by him in the course of discussing her treatment” (P28, ADHD).

The negative impact of sleep problems on parents and families also acted as a barrier that influenced parents’ decision to seek treatment and ability to implement treatment, as did their own feelings of self-blame, anxiety, and exhaustion. One parent felt that implementing strategies was difficult because, “we’re kind of empty. We have no more gas left in the tank after five years of sleep deprivation” (P39, ADHD). Another parent said that it was hard to “be consistent with anything initially because you’re just so tired that, even though you know what you should do, and you know what needs to be done […] you just do whatever you can to […] get them to bed, or get them to go back to bed in the night. It’s kind of hard to be logical” (P20, ASD). Furthermore, addressing sleep problems was not always described as a priority; a parent shared, “My child’s needs are so high and it’s so intense all of the time […] we’ve never just made an appointment for sleep because we’re really in the throes of the crises every day” (P29, FASD). For some parents, the complexity and comorbidity associated with their children’s NDD diagnoses was reported to act as a barrier, especially NDD symptoms, NDD medications (especially stimulants and seizure medications), children’s anxiety, attachment concerns, trauma history, and medical issues (e.g., seizures, feeding problems).

3.1.2. Facilitators Three facilitators were identified, comprised of 24 individual codes (see Table 4): 1. Experience with Service (HCPs) and Treatment

Implementation, 2. Parent Factors (a. Beliefs and attitudes, b. Education), and 3. Support. Overall, parents were able to identify some aspects of their experiences with HCPs and treatment that had facilitated their seeking or use of treatment: supportive and caring HCPs, a behavioural approach to treatment, and consistency with treatment implementation were particularly helpful. Some parents also reported that individualization of treatment (i.e., tailoring treatment to both child and parent needs) was helpful. Trying out different types of treatment was also reported to be helpful; one parent noted, “You just try different things, I guess. See what works” (P43, CP). Specific parental beliefs and attitudes were also reported to be facilitators, including being persistent, hopeful, self-advocating, and experiencing success. Parents reported self-education to be a facilitator, with some either doing their own research on sleep or drawing on their own specialized experience. One parent offered this perspective, “The books and the education and the establishing routines, those have all been quite helpful, or helpful to varying degrees. […] none of them have been perfect, but […] picking away at it from all

Table 4 Parent Facilitators and Codes.

Facilitator Codes

1. Experience with Service (HCPs) and Treatment Implementation 1 Supportive, caring HCPs 2 Behavioural approach to treatment 3 Consistency 4 Incorporating medication 5 Incorporating melatonin 6 Incorporating sensory or physiological components 7 Individualization of treatment to child’s needs 8 Involving child in treatment 9 Nutrition 10 Practicing healthy sleep habits 11 Same strategies work for TD 12 Trying out different treatments 13 Understanding what’s comfortable for both child and parent 14 Using bedtime routines

2. Parent Factors 2A. Beliefs and Attitudes

15 Hope or past experience of success 16 Persistence or keeping going 17 Willing to try anything 18 Self-advocacy

2B. Education 19 Discovering cause of sleep problem (e.g., by assessment) 20 Drawing on own specialized experience 21 Getting psychoeducation about sleep 22 Self-education & doing own research

3. Support 23 Having support 24 Support from other parents

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directions has helped” (P15, ASD). Finally, support, especially from other parents, was identified as a key facilitator, with a parent sharing, “The parents are the people who help you the most. Because you learn from them. […] You learn not to give up” (P3b, ASD).

3.1.3. Differences across NDD groups Most themes were common across all four NDD groups, and most differences were reported within the NDD-Specific Factors

barrier. Some parents of children with FASD reported believing that sleep problems in their children were more complex to treat than in other NDDs, whether due to a history of trauma and attachment concerns, or because they perceived their children as less responsive to behavioural treatments due to neurological impairment. Parents of children with CP reported pain and medical problems (e.g., muscle tightness, limited mobility) as barriers to sleep more often than did parents of children with other NDDs; for example, some parents reported that pain appeared to cause their children’s sleep problems.

Table 5 HCP Barriers and Codes.

Barrier Codes

1. Access to/Availability of Services 1 Lack of/limited specialist evidence-based sleep treatment & NDD services 2 Lack of information and resources

2. HCP Factors 2A. Education, Training & Experience

3 Lack of experience or training with sleep 4 Limited awareness of importance of sleep 5 Perceived self-efficacy – not sleep experts

2B. Beliefs & Attitudes 6 Different approaches from different HCPs 7 Relying on anecdotal data rather than functional behaviour analysis 8 Some strategies work, some don’t (hit or miss)

3. Individual Practice Factors 3A. Time

9 Lack of time and availability to provide treatment 10 Lack of time to access information and educate self

3B. Supporting Families 11 Unable to provide adequate or direct support

3C. Nature of Role/Practice 12 Nature of role/service = limited involvement or capacity for sleep treatment 13 Outside scope of practice

4. Parent Factors 4A. Parent Ability to Implement & Follow Through with

Treatment 14 Caregivers lack support 15 Challenging to get parents to implement strategies/follow through consistently 16 Concern that parents to not have capacity to implement treatment (treatment not

feasible) 17 Lack of stable home environment 18 Parental mental health concerns 19 Parents are exhausted/stressed/burned out

4B. Parents’ Access to Treatment 20 Language & communication are treatment barriers 21 Parents not able to physically attend appointments 22 Treatments not affordable/cost too great

4C. Parent Beliefs & Attitudes 23 Cultural norms conflict with recommended behavioural strategies (e.g., co-

sleeping) 24 Parents not ready for treatment 25 Parents don’t know that sleep problems can be treated/think they are normal 26 Medications are preferred/more frequently used 27 Parents are concerned about/resistant to using medication/melatonin 28 Parents are desperate for immediate solution 29 Sleep is not parents’ main priority for treatment

5. NDD-Specific Factors 30 Complexity and comorbidity associated with NDD complicates sleep treatment 31 Medication for NDD symptoms negatively impacts sleep 32 NDD symptoms make sleep problems harder to treat

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3.2. Health care professionals

3.2.1. Barriers Five barriers were identified for HCPs, comprised of 32 individual codes (see Table 5): 1. Access to/Availability of Services, 2. HCP

Factors (a. Education, training, and experience; b. Beliefs and attitudes), 3. Individual Practice Factors (a. Time, b. Supporting families, c. Nature of role/practice), 4. Parent Factors (a. Parent ability to implement/follow through with treatment, b. Parents’ access to treatment, c. Parental beliefs and attitudes), and 5. NDD-Specific Factors.

Health care professionals reported that both their own limited access to resources needed to provide sleep treatments, as well as their patients’ limited access to sleep- and NDD-related services, could act as barriers to treatment provision. One HCP noted that a “lack of resources” about sleep and NDD meant there was “nowhere for parents to get […] help when they need it” (H34, CP). Some HCPs also highlighted their lack of experience and training with sleep as potential barriers, saying: “It doesn’t really feel like we’re experts in sleep… [because we] weren’t trained through school to think about sleep as a targeted intervention or a targeted goal” (H8, ASD). Lack of time and availability to provide treatment and conduct follow-up appointments was another barrier. An HCP noted, “Continued support I think is the most important thing, but it’s the hardest thing to do, given […] a clinic setting and availability of clinicians” (H11, ASD).

Health care professionals also identified parents’ exhaustion, stress, and capacity for implementing treatment as barriers, noting that when children do not sleep, neither do their parents. An HCP indicated that if parents “don’t identify [sleep] as a problem, then it’s not really something I’m gonna tackle at that point for them,” because treatment depended on parents “going through a pretty rough sleep to improve sleep behaviours” (H4, ASD). An HCP said, “It’s not an easy fix and it’s also not something that is fixed quickly, so that’s difficult when parents are exhausted by the time they bring these problems to light […] their ability to cope is compromised from the get go” (H25, ADHD). Finally, some HCPs noted that specific NDD-related factors could be barriers to treatment, including comorbidities (mental health and medical) and use of medications that target NDD symptoms but may compromise sleep.

Table 6 HCP Facilitators and Codes.

Facilitator Codes

1. HCP Factors 1A. Education, Training, &

Experience 1 Professional development or formal training in sleep 2 Self-education 3 Accessing evidence-based literature 4 Accessing & using pre-existing resources

2. Individual Practice Factors 2A. Supporting Families

5 Ability to provide direct support to families 6 Ability to work in-home (e.g., BCBAs)

2B. Collaboration 7 Consultation with other colleagues 8 Multidisciplinary team approach

3. Treatment Approaches and Experience

3A. Family-Centered Approach 9 Accommodating and understanding that caregivers may be on different pages 10 Making treatment manageable for parents and preparing them for difficulties 11 Taking into account family values and parents’ perspective and understanding of sleep 12 Help families experience success & positive affirmation

3B. Helpful Treatment Strategies 13 Behavioural approach to treatment 14 Consistency (helping families maintain) 15 Generalization of strategies across diagnoses 16 Psychoeducation about sleep to parents 17 Using assessment to inform sleep treatment 18 Using coaching, modelling, and teaching of strategies to parents

3C. Modifications to Treatment 19 Addressing physiological or physical factors affecting sleep 20 Individualization of treatment to the child 21 Modifying NDD medication regimen 22 Modifying treatments for NDD symptoms is helpful (e.g., accommodating functional level, adapting

strategies for NDD severity, addressing rigidity/difficulty with transitions, helping parents adjust expectations, addressing feeding/swallowing issues, focusing on routines, modifying environment, accommodating sensory sensitivities, using visual supports)

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3.2.2. Facilitators Three facilitators were identified, comprised of 22 individual codes (see Table 6): 1. HCP Factors (a. Education, training, and

experience), 2. Individual Practice Factors (a. Supporting families, b. Collaboration), and 3.Treatment Approaches and Experience (a. Family-centered approach, b. Helpful treatment strategies, c. Modifications to treatment). In general, facilitators were related to HCPs’ acquisition of knowledge and education about sleep problems in NDD, working collaboratively with colleagues, their perceived ability to adequately support families, and a variety of specific approaches to treatment (including strategies and treatment modifications). Some HCPs reported that self-education was very helpful. Several mentioned using sleep/NDD resources such as the Autism Speaks Sleep Toolkit (https://www.autismspeaks.org/sleep). One HCP commented, “I don’t have any formal training or education in [sleep]. It’s more what I’ve learned through experience and what I’ve picked up in supporting families” (H2, ASD).

A family-centered treatment approach that incorporates parents’ values and perspectives was recommended as facilitating pro- vision. One HCP described treating sleep problems as “a partnership with parents” (H27, CP). Health care professionals reported that a behavioural approach to treatment could be a facilitator, particularly when psychoeducation about sleep was combined with the use of coaching and modelling strategies for parents. One HCP expressed that education was extremely important, saying, “Many families these days under-value sleep and under-appraise the importance of sleep and what the implications of lack of sleep are for children,” and noting that the “number one” recommendation would be “educating families on how to better set up sleep hygiene and routines to accomplish that” (H38, ADHD). Finally, some HCPs noted that in addition to individualizing treatment to the child, addressing medical factors, adjusting children’s NDD medication regimens (e.g., stimulants and anti-epileptics), and modifying treatments to accom- modate NDD symptoms such as rigidity and other factors such as children’s functional levels and feeding/swallowing problems were helpful.

3.2.3. Differences across NDD groups Few differences across NDD groups were reported. Some HCPs suggested that more resources are available for sleep problems in the

context of ASD than other NDDs. Similar to parents, a few differences emerged for FASD and CP. For example, some HCPs felt that sleep problems were harder to treat in children with FASD, because of the presence of dysregulation, brain damage, and history of trauma/ attachment problems. Professionals working with children with CP also identified sleep problems as being primarily related to pain and medical factors, compared to the behavioural factors endorsed by the other HCPs.

3.3. Similarities and differences between parent and health care professionals

Lack of information, awareness, and accessible services for sleep were reported to be barriers by both parents and HCPs. Parents and HCPs expressed concerns about each other, with some parents reporting that their experiences with HCPs could act as barriers or facilitators, and HCPs reporting concerns about not wanting to burden parents with unfeasible treatments or commenting on parents’ inconsistent implementation. Both parents and HCPs acknowledged the difficulty of sleep treatment, emphasizing parental stress and exhaustion as potential barriers. Both parents and HCPs reported that in some cases, sleep problems were not prioritized for treatment amongst children’s other behaviour problems (e.g., disruptive behaviours).

Knowledge and education were endorsed by both parents and HCPs as facilitators to treatment. Both also found the same treatment approaches helpful – primarily behavioural approaches, emphasis on consistency, use of bedtime routines, and healthy sleep habits, with incorporation of melatonin or medication as needed. Individualization of treatment also emerged as a theme amongst both parents and HCPs; for example, some parents reported needing to take an individualized, trial and error approach to treatment (i.e., trying out multiple treatments to find one that worked). From HCPs’ perspectives, the ability to individualize and modify treatments to children’s and parents’ needs facilitated treatment provision (e.g., using more visual supports, addressing environmental sensitivities, accommodating functional level, adjusting time expectations). Similar core behavioural treatment strategies and modifications were identified as helpful across all four NDDs by parents and HCPs.

4. Discussion

The main purpose of this study was to identify barriers and facilitators experienced by parents and HCPs in accessing and utilizing treatment for sleep problems in children with NDDs, in order to better inform our understanding of treatment needs from both parents’ and HCPs’ perspectives, and to inform the development of a sleep intervention for children with NDDs. Key themes that emerged from the data were similar for both parents and HCPs. There is a general lack of knowledge and awareness about sleep problems among both parents and HCPs, combined with inaccessible or limited services and evidence-based treatments. Sleep problems and their treatment appear to be especially challenging, demanding, and intensive due to the negative impact on parents and the need to individualize treatment to children’s needs within a complex array of NDD symptoms and comorbidities. Treatments often require already-tired parents to implement difficult strategies consistently night after night with tired, uncooperative children and little support from professionals. However, parents who had implemented sleep treatments and HCPs who provided sleep treatments for their patients with NDDs reported that perseverance with behavioural treatment, particularly consistent use of bedtime routines and healthy sleep habits, combined with melatonin or medication as needed, were effective and helpful. Given the intensity of sleep treatments, ensuring that families feel supported by their HCPs, motivated, and hopeful before beginning and throughout treatment is critical.

When the four NDD groups were compared, very few differences in barriers and facilitators emerged. The primary differences related to specific aspects of FASD and CP that could act as barriers to sleep treatment. However, across all NDD diagnoses, the same core behavioural strategies were reported to be used, with modifications to accommodate specific NDD symptoms. Although this

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transdiagnostic use of strategies initially appears to contradict the need for individualization of treatment, it should be noted that parents and HCPs understood individualization as tailoring treatment to a child’s needs. The actual treatment approaches and specific strategies that they used and recommended were the same across all four disorders. This suggests that exploring a transdiagnostic approach to treatment may be useful, consistent with existing literature on sleep interventions for children with NDDs (Rigney et al., 2018).

4.1. Clinical implications

Canadian parents of children with NDDs and HCPs working with these children reported that neither sleep treatments nor in- formation and education about sleep are easily accessible. In particular, standard face-to-face treatment modalities may not be accessible or feasible, with HCPs sharing that they are not able to follow up adequately with parents. Online intervention delivery (i.e., eHealth) may offer a solution to these barriers, as it is more accessible and wider reaching than conventional face-to-face interventions (Breitenstein, Gross, & Christophersen, 2014). Another solution to reducing HCP time and involvement is parent-implemented in- terventions, wherein parents are trained to deliver treatments to their children directly. Such interventions have been shown to be effective for a wide range of NDD concerns (e.g., Althoff, Dammann, Hope, & Ausderau, 2019). Self-directed eHealth parent-implemented interventions may be an ideal vehicle for delivering sleep psychoeducation and behavioural strategies directly to parents. However, given the challenges that both parents and HCPs noted about being stressed and having difficulty following through with intervention implementation, it will be important to explore how to provide adequate support to parents. Although we asked participants in the present study about their experiences of seeking and using treatment from a range of sources, future research could explore the barriers and facilitators affecting parents who are actively seeking treatment from a specific service or intervention program.

Given emerging evidence that effective sleep treatment strategies are transdiagnostic across NDDs (Rigney et al., 2018), a modular transdiagnostic eHealth intervention likely has great potential (e.g., Sauer-Zavala et al., 2017). For example, such an intervention could offer general psychoeducation about sleep in the context of NDD, and recommend core behavioural strategies, healthy sleep habits and bedtime routines (e.g., Rigney et al., 2018). If more specific NDD diagnostic information is required, parents could choose to access a module specifically about sleep in the context of their child’s diagnosis.

The results of the present study have been used to inform the modification of the Better Nights, Better Days (BNBD) intervention for TD children with insomnia (Corkum et al., 2018) into Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD). The original BNBD was recently the subject of a Canada-wide RCT (NCT02243501, clinicaltrials.gov). Based on the current research, along with the extant literature (see Rigney et al., 2018), BNBD-NDD was developed as a modular transdiagnostic parent-implemented eHealth intervention for parents of children with ASD, ADHD, CP, and FASD (see Tan-MacNeill et al., 2020 for results of usability testing).

4.2. Limitations

This sample of participants may have been more interested in or knowledgeable about sleep than other parents and HCPs, given their willingness to participate in an online study about sleep. Likewise, the study may have appealed to participants with greater internet literacy. Although we aimed to recruit a diverse and representative sample, parents of children with more severe sleep problems or other behavioural symptoms may have been less able to participate. Additionally, our sample was largely Caucasian, reflecting lack of diversity. Difficulties in scheduling necessitated the administration of interviews, as well as focus groups that varied in size, in order to accommodate participants. While emergent themes were consistent across interviews and focus groups during coding, nevertheless different information may have been gained from these two approaches. The themes that emerged from the data may also have been influenced by the questions asked in the topic guides. Finally, the study was expanded from originally only including ASD-specific participants to include the other three NDDs to inform the development of the BNBD-NDD intervention. As such, ASD-specific participants are overrepresented in the sample and recruitment of groups was non-concurrent (but all completed within a two-year window).

4.3. Conclusion

Overall, these findings suggest a great need for more awareness about the importance of healthy sleep for children with NDDs, more education about how to treat sleep problems, and more evidence-based interventions that are readily accessible. Similar barriers, facilitators, and effective treatment strategies were identified across all four NDDs, suggesting that a transdiagnostic approach to treatment would be helpful. An eHealth intervention would address many of the reported barriers to treatment.

Funding

This research was supported in part by scholarships and funding to Kim Tan-MacNeill from the Social Sciences and Humanities Research Council (SSHRC), the Nova Scotia Health Research Foundation (NSHRF), the Nova Scotia Graduate Research (NSGS) pro- gram, the Autism Research Training (ART) Program, and the Better Nights, Better Days Trainee Program. Dr. Isabel Smith was sup- ported by the Joan & Jack Craig Chair in Autism Research. The study falls under the umbrella of both the Better Nights, Better Days (BNBD) study (supported by the Canadian Institutes of Health Research Team Grant FRN-TGS 109221), and the Better Nights, Better

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Days for Children with Neurodevelopmental Disorders (BNBD-NDD) project, supported by the Kids Brain Health Network (formerly NeuroDevNet), a Canadian Network of Centres of Excellence.

Declaration of Competing Interest

Should the Better Nights, Better Days (BNBD) or Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) interventions prove to be effective after being tested in randomized controlled trials, we plan to pursue commercialization of the interventions to ensure their sustainability and accessibility.

Acknowledgements

The authors thank all families and health care professionals who participated in the study. A very special thank you to all those who assisted in recruitment, management, transcription, data collection, and data analysis, especially Nicole Ali, Sydney Dale-McGrath, Jason Isaacs, Amanda Young, Josh Mugford, Braeden Jennings, Sarah Campbell, and Ainsley Lofstedt.

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