The impact of COVID-19 on parents of autistic children with a particular focus on access to respite care

Introduction

Autism is a neurodevelopmental condition characterised by deficits in social communication and social interaction in addition to restricted and repetitive patterns of behaviour and interests (American Psychiatric Association and Association, 2013). Approximately one in every 100 children worldwide are diagnosed with autism with prevalence estimates increasing over time (Zeidan et al., 2022).

In March 2020, the World Health Organisation (WHO) classified COVID-19 as a pandemic which saw numerous measures and restrictions implemented to curtail the spread of infection. Characteristics of autism place autistic children at greater risk for being negatively impacted by the pandemic as they can experience difficulties with social communication and they often cope better with structured daily routines and predictable environments (Hyman et al., 2020). In addition, the lack of routine and uncertainty can make autistic children feel more anxious and develop unpleasant feelings (Patel, 2020) resulting in significant challenges for an autistic child.

The pandemic has had a significant impact on the lives of autistic children and their families (Cassidy et al., 2020; Nonweiler et al., 2020; Pachner and Aranyi, 2021). Measures put in place to limit the spread of COVID-19 such as suspension of in-person education and social activities, closures of essential services such as respite care, social distancing rules and the requirement to stay at home have greatly impacted families of autistic children (Bellomo et al., 2020; Patel, 2020). As many essential services closed, the pandemic required parents to take on multiple roles extending their responsibilities, while adding increased pressures and causing stress (Dalton et al., 2020). Families of autistic children have experienced additional challenges with children presenting with increased behavioural problems for parents to navigate (Colizzi et al., 2020; O’Sullivan et al., 2021). Emerging evidence suggests that high levels of stress and anxiety in parents, especially during the pandemic, can “spill over” to their autistic children leading to increased behavioural challenges, and decreased mental well-being of these children (Russell et al., 2020). Consequently, there is a greater need for respite services for these parents as caring for their autistic child can become increasingly stressful (Eshraghi et al., 2020).

Respite care can be defined as the provision of care to children with complex care needs for a specific period of time with the intent of providing temporary relief to the main carers and their family (Brenner et al., 2016). Respite care has been cited as one of the greatest unmet needs of families caring for autistic individuals (Cooke et al., 2020; Dyches et al., 2016; Whitmore and Snethen, 2018). Respite has a positive impact on the well-being of caregivers and is associated with lower levels of stress, reduced levels of depression and anxiety and more time for rest (Mc Grath, 2019). However, accessing respite can often be difficult and contribute to this stress (Hodgetts et al., 2014). Furthermore, respite services available for autistic children may be inappropriate or inadequate (Gadd, 2019). Without respite, those caring for autistic individuals can be at risk of burnout (Woodgate et al., 2015) as they take on complex care tasks such as behaviour and emotional challenges. Respite care is not without its own challenges with research often citing issues around transitioning of care, which has been described as service-driven rather than person-centred (Ryan et al., 2020), lack of choice around the type and frequency of respite received and inadequate capacity to support individuals with complex care needs (Gadd, 2019). Research has found that the lack of access to specialised resources such as respite was perceived as very difficult by parents during the pandemic (Jacques et al., 2021).

Problem statement

There is limited research within an Irish context on how the COVID-19 pandemic has impacted access to respite for autistic children. This research provides a unique insight, through its qualitative design, into the lived experiences of parents of autistic children during the pandemic in Ireland with a particular focus on how the pandemic impacted on access to respite care. The timing of this research also contributes to its originality as data was collected at a particular time period of the pandemic (July 2021 to October 2021) when despite restrictions being eased in wider society, many parents were still fighting to have their child’s respite reinstated. The study highlights adverse consequences as a result of inadequate access to respite. Findings from this study are timely from an Irish perspective with the development of an autism innovation strategy that is intended to identify and develop steps to address gaps and challenges in existing service provision in which this research outlines.

Aim

This paper describes how the COVID-19 pandemic impacted a small group of parents of autistic children in Ireland with a particular focus on how the pandemic has impacted their access to respite care. The findings of this research form part of a wider study that explores access to respite care from the perspectives of parents of autistic children through the acute care services.

Methods

A hermeneutic phenomenological approach underpinned the collection and analysis of data. This methodology enabled a deeper level of understanding to emerge from parents’ experiences of how the pandemic impacted their child’s access to respite care.

Results

Parents’ experiences were largely unanimous resulting in the identification of four main themes. These are: world gone; alone and isolated; constantly fighting for help; and negative and positive impact of COVID-19 on child and family. The four themes interpreted from the data, each with a number of categories and codes, can be seen in Table 2. These themes are discussed in further detail below with a sample of quotations from parents.

Findings in relation to how the COVID-19 pandemic impacted access to respite care

Overall, findings revealed variation in relation to the frequency of respite received pre-pandemic to time of interview as reported by parents. Of the 12 parents who participated in the research, five parents (42%) reported an increase in their access to respite. Three parents (25%) reported a decrease. Four (33%) parents reported no change in their access to respite. However, findings must be interpreted with caution as there was variation in the type, frequency and timing of access to respite.

Although five parents reported an increase in the amount of respite received, the type of and frequency of respite received varied for these parents and their children. Of these five children, two children had since entered full-time residential care which had been sought for before the onset of the pandemic and the remaining three children did not access respite pre-pandemic but were now in receipt of respite. Of these three children, one child had accessed respite for the first time due to a change in family circumstances but parents had not sought respite prior to this as they reported that they were coping up until this change in family circumstance. This child was in receipt of two nights residential respite per week. Another child received less than 3 h key worker support every second Saturday and the final child was in receipt of 1–2 h respite per week in the form of a family support worker.

Three parents reported an overall decrease in the amount of respite their child received. Of these decreases, one parent described how their child was in receipt of respite one week every month but this had now been changed to one week every two months due to the pandemic. Another parent reported how their child’s respite went from one night every week to one night every three weeks. Both parents reported that the service cited reasons attributed to the pandemic for the decrease such as the requirement to reduce respite capacity in order to adhere to COVID-19 restrictions. The third parent reported a reduction in respite from once a week to once every two weeks.

Four parents experienced no change in relation to the amount of respite received.

Discussion

The pandemic has been particularly challenging for many autistic individuals (Cassidy et al., 2020; Di Renzo et al., 2020; Kim et al., 2020; Pfefferbaum and North, 2020). In this study, parents reported mostly a negative impact of the pandemic on their child’s behaviour, mental health and overall progression associated with school, ability to communicate and regulate their feelings and behaviours. Parents described how the pandemic resulted in increased challenging behaviours for their child, such as more restricted, repetitive behaviours, sleep problems, anxiety, depression and aggression.

Colizzi et al. (2020) found that autistic children experiencing behaviour problems pre-pandemic were twice as likely to experience them more frequently or with higher severity. Findings from this study are similar to that of other recent studies that have explored the impact of the pandemic on autistic people and their families and found increased problematic behaviours and intensity of autistic characteristics in autistic children as well as more emotional and behavioural problems (Colizzi et al., 2020; Di Renzo et al., 2020; Lee, 2020; Nonweiler et al., 2020). Research highlights that autistic individuals are experiencing higher levels of psychological distress, anxiety and chronic loneliness compared with the general population during the pandemic (O’Sullivan et al., 2021). In this study, feelings of isolation dominated parents’ narratives with parents describing how they felt alone in different ways throughout the pandemic. These feelings were exacerbated as a consequence of having lost access to essential services such as respite at the outset of the pandemic with some parents experiencing prolonged isolation as their child’s respite had yet to return to pre-pandemic service levels.

Autistic people demonstrate high rates of service utilisation compared with other disabilities (Zerbo et al., 2018). During the pandemic, many countries introduced restrictions to contend with the threat of COVID-19 which resulted in the closure of many non-acute health-care services. While it was recognised that such extreme measures were required for the safety of everyone, many of these restrictions left autistic people without access to essential services. One of the biggest challenges reported by parents within this study was the loss of support services, in particular, respite. The closure of respite care was perceived as very difficult with adverse consequences for the child and family which further added to feelings of isolation. Many parents described taking on physically and mentally demanding roles 24 h a day with no additional help resulting in higher levels of stress. Some parents were of the opinion that the closure of respite services occurred at a time when families with autistic children needed it the most. Notably, some of these families were struggling to access services before the pandemic. These findings are also consistent with several studies reporting the loss of access to essential services during the pandemic for families of autistic individuals (Ameis et al., 2020; Eshraghi et al., 2020; Jeste et al., 2020; Manning et al., 2021; Wong, et al., 2021).

A study from the UK found that 86% of parents of autistic children felt a lack of government support during lockdown with 70% reporting that their daily routines were still significantly different since the pandemic began (Pavlopoulou et al., 2020). While many countries dealt with the pandemic in their own way, there were however criticisms of some countries who did not have adequate representation from mental health experts on COVID-19 advisory panels at the very beginning of the pandemic (Karekla et al., 2021; O'Connor et al., 2021). Notably, the initial contribution of mental health science was lessened relative to other areas of expertise such as virology and epidemiology; however, as the pandemic continued the mental health implications were becoming increasingly apparent. Historically, mental health services in Ireland have been poorly funded receiving approximately 6% of the overall health budget (compared to 12% in New Zealand and UK) (College of Psychiatrists of Ireland, 2020). Consequently underfunded mental health services have not been able to respond to the demand for mental health services during COVID-19. Many governments have increased mental health funding in the wake of the pandemic; however, more sufficient investment is needed (Latoo et al., 2021). Furthermore, research advocates for mental health experts such as psychologists as integral partners in response teams when dealing with problems with a demonstrable behavioural component, either in their emergency or in their intervention phases (Karekla et al., 2021).

In this study, five parents reported an increase in their access to respite since the onset of the pandemic to the time of interview; however, these findings must be interpreted with caution. Parents reported variations in the type and frequency of respite accessed with some parents reporting delays in accessing residential respite because of the pandemic. Some parents who reported an increase in access to respite outlined a requirement for further additional respite or a different type of respite but were grateful to be in receipt of some form of respite considering that other families may not have respite. Moreover, four parents experienced no change and three parents experienced a decrease in respite services at a time when they needed it the most. Despite the variations in the type and amount of respite received, there was a consensus among all parents regarding the importance of having access to respite services for all autistic children clear and accessible pathways to services such as respite care to meet the needs of Irish parents raising an autistic child (Gadd, 2019).

Parents whose children were living in full-time residential care before the pandemic reported feelings of isolation and helplessness as their contact with their child was restricted for prolonged periods of time. Research suggests that the pandemic has been extremely difficult for people living in institutions (Danis et al., 2020; Schuengel et al., 2020) as government measures restricted contact to contain the virus which resulted in visits from family or friends curtailed, access to outdoor spaces restricted and greater powers given to the institutions. There is increasing evidence that individuals living in care homes experienced greater depression and loneliness and demonstrated more behavioural disturbance during the period that included visitor bans (Liu et al., 2021). Consequently, research suggests that a commitment to inclusion means responding to COVID-19 in a way that is sensitive to our most vulnerable communities (Berger et al., 2020). While a limited number of parents within this study described how their respite service adapted their service to provide some form of respite during the pandemic, findings highlight the need for service providers to devise more innovative respite options that are responsive to the needs of autistic children and their family. These findings are similar to research exploring the experiences of autistic adults during the pandemic by highlighting the need for services to be responsive and flexible (Riese and Mukherjee, 2021).

Limitations

There are some limitations that can be found within this study and the chosen methodology. Noting that the use of a hermeneutic phenomenological approach enables participants to share their own experiences, it is recognised that parents may have been more motivated to take part if they had a negative experience. Furthermore, as the reported findings are based on a small sample of parents’ experiences these findings cannot be considered generalisable or representative of other parents’ experiences. However, noting that findings are largely consistent with findings from other studies, it would be reasonable to suggest a degree of transferability.

Conclusion

Research is only beginning to present the impact of the pandemic on autistic individuals. To date, research has highlighted that the pandemic and its subsequent measures have proven to be extremely difficult for autistic individuals living at home and in institutions, noting that autistic children are a particularly vulnerable population (Cassidy et al., 2020; Nonweiler et al., 2020; Pachner and Aranyi, 2021; Russell et al., 2020). The present study adds to these findings by providing a qualitative analysis of the lived experiences of the pandemic on parents of autistic children with a particular focus on how the pandemic has impacted their access to respite. Findings have demonstrated that the challenges experienced by many parents of autistic children before the pandemic were compounded by an overall lack of support and inadequate access to services, in particular respite. Prolonged impacts of this pandemic such as loss of or inadequate access to essential services like respite has disproportionately affected autistic people and their families. This study highlights the need to ensure the continuity of respite services at times when parents need it the most and the need for services to ensure the mental health needs of autistic children and their families are being met. Further research is needed to examine the prolonged impact and associated outcomes of not having access to support services like respite for autistic children and their families. Research exploring the effectiveness of alternative respite interventions provided by some services during the pandemic would be beneficial in the event of restrictions being reintroduced.

Respite services need to be better developed and made accessible to families of autistic children who require this service. Equally, the importance of having access to the right type of respite at the right time was highlighted repeatedly by parents. Another key finding from this study is the requirement to ensure mental health needs of autistic children and their families are addressed as we deal with the impact of the pandemic.

Overall, these findings are consistent with much of the research carried out across Europe and the UK in relation to the impact of the pandemic on autistic individuals and their families (O’Sullivan et al., 2021; Riese and Mukherjee, 2021; Pavlopoulou, 2020). Findings highlight the need for policymakers and service providers to find appropriate ways to meet the needs of autistic children and their families as we emerge from the pandemic. To this effect, mental health and autism experts should be included in the decisions concerning service organisation and delivery particularly in the context of respite service provision. In addition, respite services need to be designed in a flexible and way to meet the short- and long-term needs of families while ensuring the necessary capacity is available to respond to emergency or unplanned respite requirements.