None listed
Conditions
Brief summary
Stress and mental health difficulties are more common among parents of children with developmental disabilities (DD) compared to parents of children without a known DD. However, there is currently very little research that looks at caregiver stress and mental health impacts in parents of children with a DD in the unique cultural context of New Zealand. We also know little about demographic factors that might be related to parental stress and mental health difficulties in NZ families. This study, and the unusual global setting in which it is happening (the COVID-19 pandemic), also presents an opportunity for us to examine the impacts of COVID-19 on the lives of parents of children with rare genetic neurodevelopmental disorder (RGND) and autism (referred to collectively as developmental disorders [DD] in the rest of this document). An initial survey, completed by parents of children with and without DD, will gather demographic information along with information about the strengths and difficulties of their child with a DD. We will use ecological momentary assessment (EMA) to assess parents' sleep, alcohol use, nutrition, daily activities, stress, coping strategies, exercise, caregiving responsibility, child problem behaviours, and COVID-19-related stressors. A biweekly survey will assess their overall mood and sense of parenting competence. This will include validated measures of depression, anxiety and stress, parenting competency, and social support. Should the COVID-19 alert level restrictions change in NZ, we will ask families to record EMA data again (biweekly for seven weeks), along with the biweekly survey (1x/week for seven weeks to coincide with the weeks of EMA data collection). We aim to recruit a minimum of 75 parents (25 parents of a child with a RGND; 25 parents of a child with autism; and 25 parents of a child with no diagnosed disability). We plan to recruit from throughout NZ. The main hypotheses for the study are listed below: - Having a child with DD in New Zealand will negatively affect parents' wellbeing and mental health. - Having a child with DD in New Zealand will negatively affect parents' physical health - Some social and demographic factors (for example, low income, one-parent household) will be associated with higher levels of stress and increased mental health challenges. - Parents who say they belong to a minority ethnic group will have higher levels of stress, increased mental health challenges, and decreased physical health. Additional hypotheses that can be tested if the COVID-19 alert levels change in New Zealand: - Parents' responses to COVID-19-related stressors are hypothesised to be associated with parents' baseline stress levels and wellbeing, family life, daily habits (healthy eating, exercise, alcohol drinking), social and economic factors (e.g. low income, single-parent households)
Interventions
All participants will complete each phase of the study using the measures outlined below which assess parental stress and wellbeing:
Initial caregiver survey (Phase I): Questions will gather basic demographic information, such as family make-up (how many children with and without disabilities, types of disabilities, age of children, number of adults in the home, location, etc.), ethnicity, etc. The survey will take no more than 20 minutes to complete. Parents will also be asked to complete an o
All participants will complete each phase of the study using the measures outlined below which assess parental stress and wellbeing: Initial caregiver survey (Phase I): Questions will gather basic demographic information, such as family make-up (how many children with and without disabilities, types of disabilities, age of children, number of adults in the home, location, etc.), ethnicity, etc. The survey will take no more than 20 minutes to complete. Parents will also be asked to complete an online version of the Strengths and Difficulties Questionnaire (Goodman et al., 2010); a 25-item assessment children’s emotional regulation, conduct problems, hyperactivity/inattention, peer relationship problems, and prosocial behaviour, and the Social Communication Questionnaire (Rutter et al., 2003). Following completion of the initial survey (Phase I), all participants will be asked to begin Phase II which includes collecting daily data on the ExpiWell app and completing the bi-weekly mood and parenting survey (bi-weekly) for 7 weeks. Phase II is outlined below: Ecological Momentary Assessment Protocol (Phase II): This protocol will be administered bi-weekly, starting Week 1 (e.g. Weeks 1, 3, 5, 7), consisting of a series of very brief (<5 minute) daily EMA surveys 4x/day for 7 days. EMA data will be collected via ExpiWell, an app developed by US researcher Dr. Louis Tay. CEO of ExpiWell (Dr Torres) is an advisor on this project. Families download Expiwell to their personal smartphones, and all data are maintained centrally by our research team. Assessments will be randomly sampled between 7-10AM, 11-2PM, 2-5PM, and 6-9PM. If needed, adjustments can be made based on participant schedules. EMA Surveys include items related to sleep, alcohol use, nutrition, daily activities, stress, coping strategies, exercise, caregiving responsibility, and child problem behaviours. Items were selected from previously published EMA studies and adapted to the current study. Each survey will include fewer than 25 multiple-choice questions to minimize respondent burden. During Phase II parents will also complete a Mood and Parenting Survey. This protocol will be administered biweekly, starting Week 1 (e.g. Weeks 1, 3, 5, 7) to coincide with collection of EMA data. Families will be administered a semi-brief (<15 minutes) biweekly survey once during the same week as EMA data collection, to assess overall mood and sense of parenting competence. This will include validated measures of depression, anxiety and stress (Depression, Anxiety, and Stress Scale; 21 items), parenting competency (Parenting Sense of Competency Scale; 17 items), and social support (Duke Social Support and Stress Scale; 24 items). This data will be collected via an online survey administered using Qualtrics. The overall duration of the observation period is 7 weeks, post-enrolment. All study components can be completed at home. Participants can use a phone or personal computer to complete assessments. Participants are notified about each assessment with a push notification to their smart phone with an unobtrusive message (i.e. "Time to fill out a survey"). These notifications will be provided each time the EMA survey is available (i.e., four times/day). A second notification will be sent for each survey, 45 minutes after the first notification, if participants have not completed the survey. Participants will have one hour from the first notification to respond to the relevant survey. If parents do not complete any surveys over two consecutive days, they will be contacted by a member of the research team via email.
Sponsors
A/Prof. Laurie McLay
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
(1) caregiver of a child 18 years of age or under (2) access to iOS/Android phone with wifi or data connection (3) reside in New Zealand (4) primary language spoken in the home is English. Additional inclusion criteria will apply to sub-groups: (1) We aim for 25/75 participants to be caregivers of a child with a formal diagnosis of autism spectrum disorder, provided by an appropriate healthcare professional (e.g., developmental paediatrician) (2) 25/75 participants will be caregivers of a child with a Rare Genetic Neurodevelopmental Disorder (RGND), determined by a medical professional (e.g., developmental paediatrician). For the purpose of this study, RGND are defined as a group of syndromes characterized by an abnormal structure and number of chromosomes [Davis et al., 2018]. A disorder is considered ‘rare’ if it affects <1/2,000 of the general population [European Commission, 2018]. (3) 25/75 participants will be caregivers of a child without a known developmental disorder.
Exclusion criteria
None
Outcome results
None listed