5 This study followed a cross-sectional qualitative descriptive design. Qualitative description is often used when researchers seek to understand a phenomenon but wish to interpret the findings without moving too far from the surface data (Sandelowski 2010). Qualitative description is particularly useful when researchers seek to learn from participants’ descriptions and use this knowledge to influence interventions and promote policy change (Bradshaw et al. 2017; Sullivan-Bolyai et al. 2005; Kim et al. 2017).

6 We recruited caregivers and care providers responsible for the health and social care of children and/or youth with CCN in New Brunswick. For the purpose of this study, a caregiver is defined as a child’s legal guardian or another family member who is primarily responsible for meeting their care needs. A care provider is defined as a health professional, allied health professional, or other care worker responsible for coordinating or delivering health or social care to children/youth with CCN. Participants were recruited online through social media channels (e.g., Facebook) as well as targeted emails and newsletters from organizations providing support to families of children and youth with CCN (e.g., Ability New Brunswick). Recruitment for the survey took place over a six-month period (May 2020 to September 2020). All participants were required to be nineteen years of age or older, residents of New Brunswick, and capable of communicating in English. Individuals who participated in this study were entered into a draw to win one of two $100 Amazon gift cards.

7 This study was approved by the University of New Brunswick’s Research Ethics Board (REB # 015-2020). Participants were directed via a weblink to the Qualtrics online survey platform, which hosted the study materials. Participants began by completing an informed consent form and a demographic questionnaire. Next, they were asked to answer several qualitative, open-ended questions about their experiences caring for children and youth with CCN during the pandemic. These questions broadly addressed topics such as changes in care, challenges experienced, and service needs (e.g., “What changes, if any, have been made to your child/youth’s healthcare services?”). Questions were presented in a written questionnaire format (i.e., no in-person or virtual interviews were performed). Questionnaires were used for data collection given that other research methods were restricted and/or impractical in the early stages of the pandemic when the study was conducted.

8 Once the data collection was complete, the information was entered into NVivo (Version 12) for analysis. The information was examined using thematic analysis, which is often used to search for and identify common themes across a data set (Braun and Clarke 2006). This study was guided by Braun and Clarke’s six phases of thematic analysis: (1) become familiar with the data; (2) generate initial codes; (3) search for themes; (4) review themes; (5) define and name themes; and (6) report findings. To ensure that analysis of the transcripts was conducted with the appropriate rigour, two co-investigators each coded 20 per cent of the transcripts to generate preliminary codes and working definitions, which then guided the subsequent analysis.

9 The caregiver sample consisted of forty-five individuals aged twenty-eight to sixty-two years (M = 41.75 years; SD = 7.95). Most participants identified as female (N = 41). The sample included twenty caregivers from urban areas, thirteen caregivers from suburban areas, and twelve caregivers from rural areas of New Brunswick. Most of these individuals lived in Health Zone 2 (Saint John area; N = 35), and the remaining caregivers lived in Health Zone 1 (Moncton area; N = 7), Health Zone 3 (Fredericton area; N = 2), and Health Zone 6 (Bathurst area; N = 1). Twenty-six participants reported being employed, and the rest of the sample consisted of nine homemakers, three students, five people receiving social assistance, and two individuals who were otherwise unemployed. Notably, eighteen caregivers (40 per cent) reported loss of employment within their household due to COVID-19 restrictions.

10 In terms of caregiver roles, almost all participants indicated that they were the mother of a child or youth with CCN (N = 40). Most caregivers (N = 38) reported having one child or youth with CCN in their household, while the rest of the sample reported either two (N = 5) or three (N = 2) children or youth with CCN. In addition, nineteen caregivers reported that they were the primary caregiver for someone other than their dependent(s) with CCN. The ages of their children or youth with CCN ranged from less than one year to twenty-one years (M = 11.46 years, SD = 4.63), and just over half were reported to be male. Children and youth had a wide variety of diagnoses, although the most common ones reported by caregivers were autism spectrum disorder (N = 23), attention deficit hyperactivity disorder (N = 11), and an anxiety disorder (N = 7).

11 The care provider sample was made up of seven individuals aged twenty-seven to thirty-eight years (M = 31.5 years, SD = 4.0). All care providers identified as female. The sample consisted of four care providers practising in urban areas and three in rural areas of New Brunswick. Care providers had been practising for an average of 6.1 years, and none of them reported a loss of employment due to COVID-19 restrictions. Six of the seven care providers shared their professional background: youth care worker (N = 3), certified behaviour analyst (N = 1), human service worker (N = 1), and physiotherapist (N = 1).

12 The most common themes identified in the data were: (1) a loss of support for caregivers and their children/youth; (2) a negative impact on the mental health of caregivers and their children/youth; and (3) struggles to balance safety and quality of care.

13 Caregivers reported a loss of support for themselves and their children/youth with CCN during the COVID-19 pandemic. This loss of support included several subthemes, the first of which was the loss of personal support. Support within this subtheme referred to the informal support that caregivers received from their extended family, as well as formal childcare and in-home support (e.g., respite care). For example, one caregiver disclosed: “Our home is closed to visitors, so we are very limited socially and in terms of support. Our family and friends can only offer limited verbal support from a distance.” Other caregivers said: “We lost all physical social supports until the bubble¹ was allowed” and “There isn’t a network for me anymore.” Caregivers emphasized how this loss of support increased their caregiver burden. One caregiver declared: “Our support worker wasn’t able to help, respite care wasn’t an option, there is never a break”; while another reported: “I wish I had more physical support. A break.”

14 Caregivers also described a loss of health care support for their children/youth with CCN. Many caregivers reported either a reduction in services or a complete loss thereof (i.e., cancellation of health care appointments). One caregiver stated: “Any support such as mental health counsellor appointments had to be done over Zoom [video conferencing platform].” Other caregivers said: “He had appointments with his doctor cancelled as well as his mental health counselling stopped” and “My son receives in-home ABA [applied behavioural analysis] therapy twenty hours per week; these in-person services were unavailable.” Care providers recognized these difficulties. For instance, one care provider noted that her clients experienced “increased care/therapy needs due to decreased face-to-face services.” Care providers also acknowledged that some caregivers had to take a more direct role in the health care of their child/youth. One care provider reported that caregivers were “delivering therapy usually done by professionals, [like] speech [therapy].” Several caregivers expressed a desire for continued support from care providers during lockdowns. One caregiver said: “I feel that all physiotherapy should have stayed available. Having a long break in therapy can lead to regression”; while another declared: “[They] would benefit from continued routine and support from [their] speech therapist.”

15 Another major challenge for caregivers was the loss of school or educational support. Caregivers reported that their children and youth had difficulty adapting to home-schooling and a virtual learning environment. For example, one caregiver stated that their child “has had a hard time dealing with school by way of telephone and email”; while another reported: “[Child] was unable to do any online learning at school, which he missed.” Loss of school and educational support placed a major burden on caregivers. For example, one caregiver acknowledged this difficulty by stating:

Along the same lines, another caregiver noted:

Caregivers wanted to have more educational support during the pandemic, although they tended to be vague or nonspecific on what form of support would be best. For example, one caregiver said that they would benefit from “more resources for home-schooling”; and another stated: “Finding help for myself and for my daughter [who has] learning disabilities would make it a lot easier.”

16 The loss of support across so many domains seemed to have a disruptive influence on the routines of caregivers and their families. For example, one caregiver stated: “The lockdown was very difficult because it turned [the child’s] routines upside down.” Another shared similar concerns: “Getting them to keep any sort of routine has been incredibly hard.” The closure of daycares and schools during lockdowns seemed to be the largest contributor to this loss of daily structure.

17 In their reports, caregivers indicated that the loss of support described in the previous section had a negative impact on their mental health. One caregiver stated: “I was asked to work from home. I then had to work forty hours from home with a child who has special needs and taking a meltdown almost every hour. I have fallen behind in work, and my stress level is at an all-time high.” Another said: “I feel stress regularly but it’s a part of our lives, and we always manage…. With COVID, it has been very difficult, and truly the most challenging time in my life.” Other caregivers echoed this sentiment with respect to their children: “[The biggest challenge is] dealing with their anxieties and fears for this pandemic and just generally”; “My daughter is bored and depressed. It’s been harder than normal”; “During the pandemic … we dealt with self-injurious behaviours from both of our children.” Several caregivers indicated that increased access to mental health services is needed for families caring for children and youth with CCN. Specifically, they expressed a desire for “more support mentally for us [caregivers]” and “free therapy for those who need it.”

18 Reinforcing caregiver reports, care providers perceived that families were experiencing increased mental health symptoms such as stress and anxiety during the pandemic. For example, one care provider reported “increased mental and emotional stress/burden on parents,” whereas another acknowledged that “youth are more prone to bad mental health days.” Some care providers expressed frustration at the lack of mental health support for these families: “Therapy and face-to-face counselling could have kept going but with proper social distancing and glass.” Others indicated that increasing mental health support would be helpful: “I think counselling programs specifically for parents with children who have complex needs would be extremely beneficial especially during this time where parents might be with their child 24/7 and not be able to see any other adults.”

19 Like caregivers, care providers experienced challenges caring for children and youth with CCN during the pandemic. Care providers reported that their biggest challenge was balancing safety and quality of care. One care provider found it challenging to “keep everyone healthy while still providing a quality service,” and another expressed difficulty “ensuring ongoing access to services while balancing the health/safety risk of children/families.” Care providers were also mindful of the risks associated with limiting care: “I have now witnessed multiple children in crisis who are self-harming, hurting others, and need immediate intervention, but youth care workers don’t want to get too close because of COVID-19 risk.” Several caregivers found it difficult to manage the increased safety protocols that this balance required. For example, one caregiver explained: “When [the youth] went to the [hospital] for skin treatment three days a week, they would try to make him go on his own and I would have to explain each time why [they] couldn’t.” Another specified: “[I] was not able to stay in hospital with her, it was her first time alone and for two weeks.” When considered in conjunction with the first two themes, these latter results suggest an interesting dichotomy: many caregivers were forced to play a greater role in the day-today care of their children or youth, while also having less direct involvement in their formal health care.