COVID‐19 in Western Australia: ‘The last straw’ and hopes for a ‘new normal’ for parents of children with long‐term conditions

Abstract Background Children with long‐term conditions are vulnerable due to the treatments required for their conditions. Since the start of the coronavirus disease 2019 (COVID‐19) pandemic, Western Australians experienced restrictions that changed daily life activities but were able to return to some of their previous routines due to the restrictions. Aim The study explored the stress experiences of parents caring for children with long‐term conditions during COVID‐19 in Western Australia. Design and Participants The study was codesigned with a parent representative caring for children with long‐term conditions to ensure essential questions were targeted. Twelve parents of children with various long‐term conditions were recruited. Ten parents completed the qualitative proforma, and two parents were interviewed in November 2020. Interviews were audio‐recorded and transcribed verbatim. Data were anonymised and analysed using reflexive thematic analysis. Findings Two themes were produced: (1) ‘Keep my child safe’ describes the children's vulnerabilities due to their long‐term conditions, the adjustments parents' made to keep their children safe and the various consequences faced. (2) ‘COVID‐19's silver lining’ covers the positives of the COVID‐19 pandemic, including their children having fewer infections, the availability of telehealth appointments, relationship improvements and the parent's hopes for a new normal where behaviours prevent transmission of infectious (e.g., hand sanitising). Conclusion Western Australia provided a unique context for the COVID‐19 pandemic due to no transmission of the virus severe acute respiratory syndrome coronavirus 2 at the time of the study. The tend and befriend theory aids in explaining the parents' stress experiences, and the application highlights a unique aspect of this theory. Parents tended to their children during COVID‐19, but many could no longer rely on others for connection, support and respite, and became further isolated in attempting to protect their children due to COVID‐19 consequences. The findings highlight that some parents of children with long‐term conditions need specific attention during times of pandemics. Further review is recommended to support parents through the impact of COVID‐19 and similar crises. Patient or Public Contribution This study was codesigned with an experienced parent representative who was part of the research team and involved throughout the research process to ensure meaningful end‐user engagement and ensure essential questions and priorities were addressed.

distancing 8 and masks. 10 WA enforced the strongest COVID-19 border controls in Australia. 9 In May 2020, all school students were required to return to school, and restrictions started to ease. 9 COVID-19 has significantly affected how everyone lives. 11 Previous research has confirmed that since the COVID-19 crisis, parents have experienced stress regarding social distancing, remote learning, financial difficulties and space for themselves. 12 Yet, there is a lack of literature on parents' experiences caring for children with long-term conditions, which is already known to cause stress. 13,14 Long-term or chronic conditions among children are rising 15 and refer to a wide range of conditions, illnesses and diseases that tend to be long-lasting with persistent effects. 16 Children with long-term conditions are a vulnerable population dependent on health and education services that have been impacted by the pandemic. 17 Their parents already face higher mental health burdens as well as higher rates of work loss and financial strain due to COVID-19. 13,18 These families and children have been affected as most services required often cannot be delivered outside of a specialist setting, and it is difficult for parents to replace the support their children usually receive. 19 Families with a child with disabilities are already marginalised. Therefore, consideration of the study context is essential. 20 For example, it has been stated that the pandemic has further challenged the already difficult situations experienced by parents and their children. 18 Stressful events may cause discomfort or trigger a stress response, but may also promote family strength and resilience. 21,22 COVID-19-related restrictions have been considered as potentially enhancing stressful events. 22 Many families have had to learn new ways of adapting to further isolation and profound unpredictability. While many will adapt and grow in resilience, others may experience stress-related disorders that are previously unknown. 23 Over time, an accumulation of financial loss, poor sleep, social isolation and unresolved fear may overload the neurobiological pathways that help people adapt to stress. 24,25 As a result of this overload, the anticipated mental health burden due to COVID-19 is vast, described as a new type of mass trauma with unprecedented public exposure. 23 Research is therefore needed to gain insight into the impact of COVID-19 on the lives of parents caring for children with long-term conditions and their needs. WA provided a unique context to investigate the effects of COVID-19 as there was no sustained community transmission at the time of this study, but the threat had been experienced.
This study was conducted in November 2020, just before the controlled interstate border was introduced, allowing very low-risk states and territories in Australia to travel to WA. 26 WA, at this time was operating at some level of normality with no community spread. Therefore, this study aimed to explore the experiences and needs of parents caring for children with long-term conditions concerning the COVID-19 pandemic and provide recommendations to improve services in preparation for possible future pandemics and crises.

| Design
This study used a rapid qualitative approach. [27][28][29] The study was codesigned with L. J., a parent representative who is a parent caring for children with long-term conditions. Codesign in this research study included L. J. being part of the research team and involved throughout the research process to ensure meaningful end-user engagement 30 and essential questions and priorities were addressed for this parent group. The importance of collaborating with parents caring for children with long-term conditions has been described previously. 13,31 L. J. did not participate in the study.

| Participants
A purposive sample was recruited from an existing study on parents' experiences of stress caring for a child with chronic conditions, 13 conducted before COVID-19 was known and a prominent threat in WA. Parents had been previously recruited via a recognised family support organisation they were registered with. 13 Inclusion criteria were the parents' children: (a) had at least one long-term condition, (b) were aged 0-19 years, (c) diagnosed/ started treatment within the last 5 years and (d) 6 months postdiagnosis/treatment. Parents were contacted via email and offered the option to complete the open-ended proforma attached to the email, or if they would prefer to be contacted by telephone and be asked the same questions by a researcher (Box 1). If no response from the email was received within 1 week, a follow-up telephone call and email were made. If no response was received from the follow-up, it was assumed that it was not a possibility for the parent to take part. An email template and telephone interview script were used to ensure the participants were provided with standardised guidelines.
Twenty eligible parents were invited to participate; one declined and seven did not respond. A final 12 participants took part in the study. A 'parent' was defined in this study as a person with the care responsibilities of the child.
The parents (seven mothers and five fathers) were aged between 31 and 63. One parent identified as Aboriginal Australian, nine as White Australian and two as White British. Two parents were a married couple, and three parents lived in regional WA. Three parents worked full-time, three worked part-time and six were full-time carers. Four parents had more than one child with long-term conditions. All names have been changed and do not link to the previous article's pseudonyms 13 to further protect the parent's anonymity. The children's conditions are also categorised for anonymity purposes. A range of diagnoses was provided; most included more than one health diagnosis and required specialist care from two or more specialist health teams. Table 1 outlines the participants' profiles.

| Data collection
Data were collected using a proforma that consisted of three openended, text-box survey/interview questions (Box 1). This approach was the best option to collect rapid qualitative data before the interstate borders opened and not overburden parents. Proformas have been used successfully in other qualitative research 32,33 and are designed to encourage expansive answers from participants. 33 Interviews were also offered. The questions were developed by S.

| Data analysis
The data were analysed using Braun and Clarke's 34,35 reflexive thematic analysis. This is a method for identifying, analysing and reporting themes and patterns within data and is an appropriate approach for qualitatively exploring the life experiences of underrepresented groups. 36 This study is positioned within the interpretivist paradigm, using a reflexive approach. 37 Since the lived, subjective experiences of parents caring for children with long-term conditions was an interest, and understanding the meanings that participants attributed to their stress experiences, and the subjectivity of the researchers' perspectives is acknowledged, 34  impressions. An inductive approach was followed with semantic (surface, obvious, overt) and latent (implicit, underlying, hidden) meanings generated from the data. 37

| Fewer infections
Keeping the children out of daycare and minimising contact kept the children healthier due to fewer infections and colds. This was a positive side of COVID-19 and something the parents mentioned as a welcoming change: We did notice that while our child wasn't attending daycare it has been the best health we have ever seen him have. He didn't have any cold or flu symptoms, and no sickness. (Ella) It also helped that more people washed their hands regularly and used hand sanitiser and masks, as outlined by Emma: The positive impact was seeing the general public using hand gel as they walk into hospitals. We all hope that this becomes the norm, as it should be.
Parents felt it was okay to now talk about hand hygiene and encourage and remind guests to use hand sanitiser before entering their home, which had been a difficult conversation before. My daughter…was meant to have a follow-up for her dental surgery she had, and they wanted to do the dental over the phone. And I said, well, 'how are you going to see?' you know, cause obviously it's a follow-up to having teeth removed and gums cut into to remove teeth…I said how you gonna see anything wrong over the phone, when you're not even doing a video call?

| Telehealth
The parents also emphasised the importance of using equipment that the parents could access from home instead of equipment that had to be accessed at the local healthcare clinic. The necessity to go to a healthcare facility instead of accessing telehealth from home hindered them from keeping physical distance:  39 In the current study, additional stresses were found to be caring for their child while home-schooling, working from home and having increased parenting demands (e.g., absence of partners who could not return to WA due to the border restrictions and/or support services stopped).
The 'tend and befriend' theory 40 is an interesting approach applicable to the current study's context. It focuses on children and states that when faced with a perceived threat, people tend to their young and rely on others for connection and support. It was initially stated that females tended to their children and sought social connection, 40 whereas males were more likely to follow the fight-orflight response. 41 There is much debate about gender and stress when caring for children with long-term conditions. 13,42 The current study did not aim to study gender differences. However, participating fathers and mothers both tended to their children by attempting to keep them safe, as noted previously. 13 The theory implies that stress levels may decrease when social interactions are comforting. 43 It is well known that parents caring for children with long-term conditions can experience a lack of support from family, friends and healthcare services. 13,44 Social isolation was a common theme on the impact of COVID-19 with family caregivers of individuals with end-stage heart failure and lifestyle changes were noted in the United States study. 45 The parents in the current study were limited in befriending others due to COVID-19 consequences, which caused further feelings of isolation. Despite many parents feeling that border restrictions were needed to protect their children, the impact of this was that families were alienated from their key social support which they relied upon. This theory aids to highlight the greater level of stress parents experienced. To keep their children safe, they were unable to access vital social support via friends and family. Yet, a few experienced unexpected support from healthcare professionals (e.g., obtaining medications) and professionals (e.g., teachers help in home schooling) who assisted them during stressful times. These positive experiences were helpful to parents and beneficial in moving forward at this time of crisis.
While the parents described that others now had a better understanding of their daily lives, the fear of their child getting COVID persists. The parents provided many recommendations, including separate entrances and exits at the hospital to avoid unnecessary queues, having hand sanitisers and masks available and staff monitoring who was entering. Procedures and staff were unprepared at the start of the pandemic, and these recommendations have since been implemented at the children's hospital. More than ever during COVID times, additional support is required to access healthcare online or at the hospital to ease the burden for these parents. 13,14 Parents also need to protect themselves to prevent passing COVID to their children and to be able to care for their children, especially when support may be limited. Similarly, the implications of long COVID need to be considered. Further research into parents' COVID experiences and long COVID is necessary to explore parents' stress experiences when caring for children with long-term conditions to assist this group.
Telehealth was a benefit for some of the parents and something they would like to continue. Telehealth assisted with prompt appointments and reduced the travel and difficulties most encounter when taking their child to the hospital. It also enabled parents and their children to keep safe from COVID. In support, telehealth has been found to improve the provision of health services and be a critical tool. 46 However, the current study highlights that not all appointments were suitable for telehealth.
Previous research has also noted reduced hospital admissions for children with long-term conditions in paediatric wards. 47 The current study highlights that suitable adjustments need to be in place for parents caring for children with long-term conditions (e.g., appropriate telehealth appointments and allowing a support person to assist a parent at hospital appointments) for future outbreaks and pandemics.
The current study suggested that some children had become distressed with the threat of COVID and the changes to their routines. Child and family distress have been noted to be heightened due to the messages about the use of handwashing, sanitisers, mask use, social distancing and so forth. 48 Children and young people's experiences in WA and internationally have been explored during COVID-19 through open-ended surveys and drawings. 48,49 An international study exploring the experiences of lockdown through children's artwork created an ebook reflecting children's experiences during COVID-19. 48 It was recommended that healthcare professionals need to support the child's health literacy, make them feel secure and take into consideration their hopes, fears and worries. 48 The authors suggest that the ebook may assist with starting conversations with children about the impact of COVID-19.
Communication is key for keeping children informed and to promote wellbeing, but how best to do this for children with long-term conditions requires further investigation.
Each family in the current study is unique with personal backgrounds/histories and stressors. Still, their collective experiences at the start of the COVID-19 pandemic and support needs are alike.
This is in agreement with previous research from WA, where families of children with medical complexity describe their support needs similarly despite the complexities. 13,14 SMITH ET AL.