The frequencies for the agreed codes are shown in Table 3. It is clear that a large proportion of families report that COVID-19 has affected their mental health, often leading to an increase in anxiety and fear. Smaller numbers also reported increases in distress, low mood and stress. The data suggests that more parents than children have experienced increased anxiety (44% vs 25%) and stress (12% vs 5%), although it is important to note that this is parent-reported data, but frequencies for parent-reported fear, distress and low mood were similar for parents and children.
Our final 35 codes were organised into six categories that represent the impact of COVID-19 on mental health as reported by these SEND families: Worry; Loss; Mood, Emotions & Behaviour; Knowing what is going on; Overwhelmed and Minimal or Positive Impact. Table 4 shows that codes were organised into categories—groups of codes that clustered together. For example, the category of worry is made up of three sub-categories (worry for self, worry for others and general worry) which, in turn are made of clusters of codes e.g. worry for self represents four codes, namely, parent and child anxiety for self and parent and child fear for self. Clustering codes into categories is the process via which the researchers identified patterns in the data (Bengtsson 2016).
Worry was sub-divided into three sub-categories: worry for self, worry for others and general worry. Although some of the worry described is likely to be shared by parents and children in general, the majority was specific to families with a child with SENDs. The examples given in Table 4 illustrate the point that participants often described extreme anxiety reactions that are not likely to be commonplace in the general population, and that are characterised by known features of SENDs e.g. restricted food preferences. Also, parental worry for others, particularly concern for their child’s future, focused on their children falling even further behind in school because they did not know how to meet their needs, and worries about who would look after them if they (the parent) died as a result of COVID-19. The level of worry many SEND families report appears to be substantial and serious, and supporting these families in ways that will help to alleviate or reduce their anxiety should be a priority for education, health and social care professionals.
Loss was also described by many participants as a result of COVID-19, and these losses were organised into four sub-categories: loss of routine, loss of support network and structures, loss of specialist input and, for a minority, financial loss. Some of these losses are likely to be widespread in the community, such as loss of access to support networks, changes in routine and financial losses. However, the data suggests that, in some cases, the effects of these widespread losses are amplified in families with a child with SENDs because the challenge of meeting the child’s needs is simply greater. Also, for some children with SENDs it is not possible to explain why these losses have occurred, creating further difficulties. We have several examples in the data of lone parents who are isolated with a child who displays very challenging behaviour without access to any of the support and respite that usually helps them to fulfil their parental role effectively. These lone parent SEND families appear particularly vulnerable in the current situation. Furthermore, there is a suggestion that some parents feel that during the first fortnight of school closures their children were insufficiently supported. In some cases this was because no tailored support was offered (e.g. children in mainstream classrooms being provided with the same input as the rest of the class). Parents also mentioned a pressing need for some children to see familiar faces, such as those of their teacher or teaching assistant, a need that while shared by some neurotypical children is likely to be amplified for children with SENDs such as ASCs.
Moods, emotions and behaviour, including low mood, acting out and behaviour change, were mentioned by many participants. While low mood and distress are likely to be widespread the data suggests they may be experienced more severely within the SEND community. The types of challenging behaviour described in Table 4 are clearly difficult for both parents and children to cope with, involving police, violence to self and others and a level of destructiveness that is likely to be uncommon among children of equivalent ages without SENDs. The distress this causes suggests that support is needed before crisis point is reached in some families.
Knowing what is going on was a key element of some participants’ responses. Parents described situations in which a child’s low level of understanding led to distress because they could not understand why everything had changed. In the cases of minimally verbal children their disorientation was sometimes expressed in challenging behaviour. The data suggests that better understanding was associated with better outcomes. One way to address this issue may be to prioritise children known to have limited understanding and to create resources that may help to enhance their understanding, such as social stories, while working to ensure that those aspects of life that can stay the same (or similar) do stay the same (or similar) e.g. providing remote face to face support. Child awareness of the situation was described as having both positive and negative effects in that while some children seem oblivious to COVID-19 and have not minded the changes, others are frustrated for the reasons described above.
Overwhelmed was the penultimate category used to describe participants’ responses. A substantial minority of parents described themselves as being stressed by the new demands that were placed on them, including meeting all of their child’s special or additional needs without support, a break or respite, often alongside working and meeting the needs of others in the family. Given that this data was collected within two weeks of school closures we might expect this situation to worsen over time although it also remains possible that, as families become more acclimatised to the situation, they may become less overwhelmed or there may be no discernible change.
Minimal or positive impact was described by a substantial minority of families for whom the impact of COVID-19 was not perceived as harmful. It was notable that positive emotions were often expressed in families where the child has a hard time at school and feels safest at home. For these children, self-isolation and social distancing may lead to a period of calm respite, creating a more relaxed environment for them and their families.