Australian parents and caregivers of children aged 2–17 years with a NDD were invited to complete a cross-sectional self‐report survey as described in the study by Masi and colleagues (4). The online questionnaire included study‐specific, fixed‐response questions. The survey questions were piloted with clinicians, researchers, and a small group of parents (n = 20), with feedback resulting in adjustments to the survey. The survey was promoted through different service providers and support groups as described in our previous study (4). The survey was open for approximately 6 weeks between May and June 2020. Survey questions included socio‐demographic characteristics of children (age, sex, culturally and linguistically diverse background) and parents (relationship to child, single‐parent household, employment, urban vs. rural location), along with questions and standardised instruments on child symptom severity and well-being, and parent well-being.
Child symptom severity and well-being
Caregivers were asked to report their child's NDD diagnosis/es (e.g., ADHD, Autism, Cerebral Palsy, intellectual disability, rare genetic condition, Tourette syndrome) along with any diagnosed comorbid mental health conditions (e.g., anxiety, obsessive compulsive disorder). A composite variable called ‘number of diagnoses’ was calculated, summing the number of diagnoses/conditions that a parent endorsed. For each NDD condition and comorbid mental health disorder, parents indicated how much their child's symptoms changed from before the pandemic to when the pandemic was at its worst on a 5-point scale with 1 ‘symptoms much improved’, 2 ‘symptoms somewhat improved’, 3 ‘symptoms the same’, 4 ‘symptoms somewhat worse’, and 5 ‘symptoms much worse’. Responses of ‘somewhat’ or ‘much worse’ symptoms were combined as a single ‘symptoms worsened’ group. If parents endorsed any diagnostic/comorbid symptoms worsening, this was recoded to a single binary variable called ‘child symptoms worsened’ (any worsening yes/no).
Questions about child well-being asked the parents to rate the extent to which COVID-19 had led to: reductions in sleep quality; exercise decreased; a poorer diet; increased TV viewing or digital media use increased video-game use. These questions were responded to on a 5‐point (1–5) Likert scale: ‘strongly agree’ to ‘strongly disagree’. Responses to these questions were then summed to give a single scale for ‘child well-being’ (range 5–20, with lower scores indicating poorer well-being). The scale had a Cronbach’s alpha for internal consistency of α = 0.648.
Parent well-being
Caregivers reported on their current distress levels and well-being using three standardised instruments. Psychological distress was measured using the 6-item Kessler Psychological Distress Scale (23). This is a non-specific Likert scale covering: (1) feelings of nervousness, (2) hopelessness, (3) restlessness, (4) feeling that everything takes too much effort, (5) sadness, and (6) worthlessness. Scores greater than or equal to 14 were considered in the clinical range on this measure (24). Quality of Life was captured using the 5-item WHO Well-being Scale – WHO-5 (WHO-5, 1998), which ascertains subjective well-being in the past 2 weeks using 5 positively worded items on a scale from 5 (all of the time) to 0 (none of the time) for a total range of 0–25, which was then multiplied by 4 to get a score out of 100. Items include: (1) I have felt cheerful and in good spirits, (2) I have felt calm and relaxed, (3) I have felt active and vigorous, (4) I woke up feeling fresh and refreshed, and (5) my daily life has been filled with things that interest me. Scores equal to or above 50 were considered in the low well-being range on this measure (25). Finally, Generalised Anxiety was captured with the 2-item General Anxiety Disorder Scale – GAD-2 (24). These items are: (1) Feeling nervous, anxious, or on edge, and (2) Not being able to stop or control worrying. GAD-2 total range from 0–6, with scores ≥ 3 suggesting anxiety symptoms are within the spectrum of clinical severity (24).
Additional questions were asked about whether parent’s pre-existing mental health conditions had worsened due to COVID-19, whether pre-existing physical health conditions had worsened, whether changes due to COVID-19 had created financial problems for them or their families, and whether COVID-19 had caused a decrease in caregiver supports and services. Questions were answered on a 5-point Likert scale, from ‘1’ indicating Strongly Agree through to ‘5’ indicating Strongly Disagree. These variables were also dichotomised for analyses, with Strongly Agree or Somewhat Agree categorised as indicative of COVID-19 impacts.
Ethical approval
All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Ethical approval for this study was provided by the human research ethics committee at South West Sydney Local Health District (2020/ETH00975).
Analysis plan
Data were analysed using SPSS (v25). To examine the rates of parental psychological distress, anxiety and poor well-being (Objective 1), descriptive data analyses were conducted. To examine whether parental psychological distress (K6) was associated with parental socio-demographic (parent age, urban/rural settings, parent education and relationship status) and child factors (child sex and age), chi-square tests were conducted (Objective 2). To examine whether parent psychological distress was associated with the worsening of diagnostic/comorbid symptoms, a two-step logistic regression model was conducted (Objective 3), with the independent variables of parental psychological distress (K6), controlling for family socio-demographics and child factors (parent age, number of child diagnoses, child sex, single vs two parent family, metropolitan vs rural location, financial problems, decreased supports). These variables were selected as covariates given they have established relationships with children’s mental health. The K6 was selected as the predictor variable as it indexed parental distress in the sample. Similarly, a linear regression predicting a worsening of child health-related behaviours (composite variable) was conducted to examine Objective 4.