The perceived impact of Covid-19 pandemic on the children with cerebral palsy: the parents’ perspective explored within the “6-F words” framework

In March 12, 2020 the World Health Organization (WHO) declared the spread of the coronavirus infection disease (Covid-19) as a public health emergency and announced it as a pandemic. Covid-19 has been a worldwide health emergency requiring the adoption of several measures of containment, including a period of lockdown, social distancing and isolation to reduce the spread of the virus (WHO see) [1].

The adoption of lockdown measures, albeit necessary at the time, entailed adverse consequences in general health and access to health and social care services, household finances and the psychological well-being of children and their families [2]. The impact has been even more significant for children with physical or mental disabilities and their families, as shown by various studies which focused on this population [3‐7].

Varengue [5] and Sutter [6] found that the physical wellbeing and mental health of children with disabilities was impaired due to the reduced availability of rehabilitative services and worsening of the caregivers’ mental health. For example, Dhiman [7] and Varengue [5] showed that the pandemic increased the stress, depression and the perception of stress on caregivers. The consequences varied depending on variables such as the children’ age and level of independence, whether a parent was the sole caregiver of the child, lack of confidence in telerehabilitation services and so on.

Among different disabilities of childhood, some studies focused on the impact of the pandemic on children and adolescents affected by cerebral palsy (CP) and on their families.

Akpinar [8] found that parents who did not help their children with physical exercises for different reasons, such as lack of self-confidence or older age, reported greater levels of anxiety. Anxiety was also associated with the age of the children, the motor and manual severity, the occurrence of comorbidities and parental income.

The inability of parents to perform home exercises during the reduction of rehabilitation services had a negative impact on the physical functioning of children, as demonstrated by Bashkar [9].

In general, authors found worsening of children's general health, mobility, spasticity, joint motion, social function, communication and mood [10, 11].

The level of activity, participation and environmental factors influenced the impact of the pandemic on body functioning in children with CP [12]. Similarly, Lai [13] found that Covid-19 reduced interactions, exercise participation and interesting in doing things. Moreover, it increased isolation and depression of adolescents and their families.

Many of these authors [14‐16] highlighted the importance of telerehabilitation as a possible solution when regular and direct interventions by professionals are not possible.

During the Covid-19 pandemic Italy was one of the first countries to adopt a nationwide lockdown. On 9 March 2020 the government imposed restrictions on population movement unless for necessity, work and health circumstances. Additional measures included the temporary closure of non-essential shops and businesses.

To our knowledge there are no studies focused on the impact of the Italian lockdown on patients with CP. This paper aims to explore how the quarantine influenced the health of children with CP and their families. To this aim, we adopted the framework of the 6-F words (function, family, fitness, fun, friends, and future). The 6-F words were born in the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) [17] context and they represent how, according to the ICF, we might think about health. The first word, ‘Function’ refers to what people do and considers the role, the job, the occupation of the participants and ‘play’ for children. It involves both ICF ‘Participation’ and ‘Activity’ categories. The second word ‘Family’ refers to the essential environment for children; in ICF terms, the family is the central ‘contextual factor’ in children’s lives. The third word ‘Fitness’ is the physical and mental well-being, and it involves both ‘Body structures’ and ‘Functions’ in the ICF framework. The words ‘Fun’ and ‘Friends’ include activities that people enjoy and relationships established with others; they both concern the ICF aspects of ‘Personal Factors’ and ‘Participation’. The word ‘Future’ considers the dreams and expectations of the parents for their children’s future and it covers all the aspects cited above.

By using a multiple choice questionnaire we aimed to explore the opinion of parents of children with CP on how lockdown measures affected the health of their children according to the ICF framework.

In this paper, parents of more than one hundred children with CP gave their opinion in regard to the global impact of the Covid-19 pandemic on the health of their children as described in the ICF. The group of children was mainly composed of patients aged from 7 to 19 years and the most prevalent diagnosis was hemiplegia, followed by quadriplegia and diplegia. Most of the parents were married or cohabiting (less than 7% were separated, divorced or widowed). In about 95% of cases, one or both parents were employed before the pandemic but about 5% of them lost their job due to the pandemic. More frequently, parents were required to work from home or to accept work scheduling changes whereas less than 15% received job benefits.

During the pandemic, the Italian government made mandatory the use of certain measures in order to protect people from the spread of the virus. The adoption of these precautions may have been difficult to follow for certain groups of patients; among the participants 16% of parents reported their children had difficulties in adopting protective measures whereas about 50% of the group encountered no difficulty. About one third of children were excluded from these mandatory precautions due to the incompatibility of their disability with the use of precautions such as masks or gloves. More often, parents observed that their children had difficulties in respecting rules, independently from the age range.

The age range together with the difficulty in respecting rules were the two significant predictors of the perception of impairment due to Covid-19 pandemic.

For about six children out of ten aged between 7 and 12, parents reported a general impairment due to the pandemic; this rate reduced for children aged 13- 19 (four out of ten) and further reduced when considering the youngest, aged between 0 and 6 (three out of ten). The age of children with CP has been studied only in relation to the parents’ mood during the pandemic but with opposite results: Akpinar [8] found a positive relationship between the child’s age and the State Anxiety (STAI-1 Scale) whereas Dhiman [7] found that parents of children younger than 6 years experienced more depression and anxiety when compared to parents of children older than 6 years.

About 9 parents out of ten who observed their children having difficulties in respecting rules, then claimed a negative impact on the child’s physical and mental health due to the pandemic.

Concerning the children’s abilities (motor, speech, manual and behavior) the Covid impairment score reached higher levels in children with more extended motor impairment (quadriplegia), thus suggesting that these patients could be more affected by the interruption of health services. This is in accordance with Biyik [12] who found that children scoring Gross Motor Functioning Classification Scale (GMFCS) [19] levels IV and V (children with limited self mobility or transported in a manual wheelchair) presented increased tonus and a decreased range of motion. Moreover, Akpinar [8] observed that parents of children with higher levels of GMFCS claimed greater levels of anxiety. Considering the children’s abilities, behavior and the motor functioning were more affected during the pandemic. In accordance with this, different authors found a decrease in the general mood [13] or an increase in irritability, aggressiveness and anger [9] and, more generally, behavioral problems [5, 10, 12]. This was true also for children with other disabilities [20]. Similarly, motor functioning was reported as one of the more affected areas in children with CP [9, 10, 12] as well as other disabilities [6].

The impact of the pandemic on the health of children as intended in the ICF was explored. One child out of two was forced to change their daily routine both at home and at school. One child out of two also suffered some reduction in rehabilitation, even if temporary. Only one parent out of ten reported being able to find alternative ways to maintain the physical activities of their children. More than half of parents wished that their children’s fitness level and their rehabilitative activities returned to levels prior to Covid-19. In most cases the time that families spent together increased and this represented a positive aspect for several families, as demonstrated by the fact that about one third of parents were satisfied with this situation and would like to maintain it. Faccioli et al. [21] in their study exploring a population with disabilities found that “the increased time spent with family members was judged positively by 27.2% of parents and by 64.2% of adolescents”.

In opposition to these results, the opportunities of children to meet friends was reduced for many children, so much that about one child out of two would like to increase the number of relationships or at least to recover them after the pandemic, as reported by parents.

One parent out of two observed some impairment due to COVID-19 in the health of their children with CP, but most parents claimed low levels of impairment (low Covid impairment scores). This occurred mainly on motor and behavioral abilities. This study also suggests that the pandemic has had a different impact on children and their families on the basis of certain characteristics such as age and type of motor impairment. Therefore, in the case of another pandemic, there can be increased awareness regarding the child's diagnosis and severity of impairment. Parents of children with CP and other disabilities should be made aware of other available resources that can be used to blunt the impact of the pandemic on their health. Increased awareness of telehealth, pamphlets that help parents perform exercises with their children, virtual support groups are all suggestions that can lighten the burden. Moreover, it would be useful to differentiate the rehabilitative proposal on the basis of child’s characteristics and to give some support to promote the acceptance of new rules and measures required by the pandemic.

This study has the following limitations: we did not consider the potential spread of Covid-19 in the families; we did not use specific scales in order to measure the levels of abilities (as for example, GMFCS); we initially had a drop out of 80% of participants who, for several reasons, did not agree with the participation. Furthermore, the sample might not be representative of the general population of families with children with CP as it only included children under the care of a tertiary rehabilitations service. Finally, the study was conducted 1 year after the first wave of Covid-19 in Italy and our results can therefore represent the long-term perception of Covid-19 pandemic on participants.