key: cord-0813458-ssji21ke
authors: Rogers, Gemma; Perez‐Olivas, Gisela; Stenfert Kroese, Biza; Patel, Varsha; Murphy, Glynis; Rose, John; Cooper, Vivien; Langdon, Peter E.; Hiles, Steve; Clifford, Clair; Willner, Paul
title: The experiences of mothers of children and young people with intellectual disabilities during the first COVID‐19 lockdown period
date: 2021-03-23
journal: J Appl Res Intellect Disabil
DOI: 10.1111/jar.12884
sha: 8b70c031e74dd2fc239f5ad13913d5d7a53a56cd
doc_id: 813458
cord_uid: ssji21ke

BACKGROUND: Recent COVID‐19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. AIM: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. METHODS: Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. RESULTS: Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. CONCLUSIONS: All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well‐being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

The first lockdown during the COVID-19 pandemic in England involved measures of social distancing, social isolation and staff redeployment from mental health and disability services. This resulted in reduced access to educational institutions and medical and social care for those with intellectual disabilities and their carers at a time of enhanced need (UK Parliament, 2020; Cullen et al., 2020; Gulati et al., 2020) . Several news stories published in the early weeks of lockdown, when access to professional support and services such as respite were much reduced (Mind, 2020) , corroborate how difficult it was for family carers of those with intellectual disabilities. Some reported being on the brink of collapse, at breaking point and forgotten and ignored (Couglan, 2020; Hill, 2020; Youssef, 2020) . In addition, a short report using mixed-methods highlights that many UK families with children with special education needs and disabilities (SEND) had a wide variety of unmet support needs during the initial phase of lockdown . Families of children and young people with autistic spectrum disorder in the UK also reported that their family needs had not been adequately addressed. Although more than half of these families had access to at least one type of specialist support, this was not always timely or sufficient (Pavlopoulou et al., 2020) .

Family and other unpaid and informal carers play a key role in caregiving for individuals with intellectual disabilities (Griffith & Hastings, 2014; Mansell & Wilson, 2010) , and the COVID-19 pandemic has led to a heavy reliance on informal home care provision. Insight into the challenges informal carers are currently facing is still limited (Chan et al., 2020) . A substantial body of evidence highlights the difficulties that family carers experience in 'normal' times when supporting a child with intellectual disabilities including experiences of depression, stress and carer burden and the need they have of a supportive environment, particularly if economically disadvantaged (Hastings, 2002; Resch et al., 2012; Willner & Goldstein, 2001) . A recent study asking parents of children with SEND in the UK how COVID-19 affected their own mental health and that of their child found that both parents and children experienced loss (loss of routine, loss of support network and structures, loss of specialist input and, for a minority, financial loss), worry and changes in mood and behaviour, with some parents reporting feeling overwhelmed with the new demands placed on them without extra support or respite .

Social restrictions implemented to manage the first-wave and subsequent peaks of COVID-19 have the potential to threaten the mental health not just of family carers but also of their children with intellectual disabilities (Brooks et al., 2020; Fegert et al., 2020) which is likely to lead to an increase in challenging behaviours (Alexander et al., 2020; Courtenay & Perera, 2020) , adding to caregivers' stress. An online parental survey found that children with an autism spectrum disorder who are highly reliant on established relationships and routines experienced a worsening of behaviour problems when their daily routines were disrupted during the lockdown period (Colizzi et al., 2020) .

However, anecdotally, a minority of families reported that COVID-19 had had little impact on mental health or even led to improvements for children who struggled at school and felt safest at home , suggesting that the predictability of their life under lockdown lead to a reduction in challenging behaviours .

The high prevalence of mental and physical health multimorbidity in people with intellectual disabilities (Kinnear et al., 2018) is likely to heighten many carers' worries about the health of those they care for during the pandemic . Data from the 2017-2018 influenza epidemic underscore the increased risk of illness for those with intellectual disabilities (Cuypers et al., 2020) , and the COVID-19 pandemic has therefore left many informal carers with extra responsibilities. In many cases, they had to deal with the potential contamination of their homes and with increased demands of care in the absence of school or day-service provision (Coyne et al., 2020) . In June 2020, Carers Trust Scotland, 2020, surveyed 214 young carers aged 12 to 25 providing unpaid care at home for family/friends. These young carers reported that since the pandemic their mental health had worsened, they felt less connected to others and had extra caring responsibilities and worries about the future. Willner et al. (2020) also concluded that the strict lockdown during the first COVID-19 peak had a detrimental effect on the mental health of parents of children with intellectual disabilities.

The longer the hours of care dedicated to a child with intellectual disabilities and the higher their level of dependency, the higher the levels of strain experienced by the carer (Tsai & Wang, 2009 ). In addition, financial concerns and social isolation also contribute to caregivers' perceived burden of care and well-being (Resch et al., 2012; Thompson et al., 2014) . Poor social support and challenging behaviours in children with intellectual disabilities are associated with increased psychological morbidity and distress in parents (Gallagher et al., 2008; Rose et al., 2016) yet it was found that during the first lockdown social support was poorest for carers dealing with the most challenging behaviours and who had least resources .

There is no doubt that the COVID-19 pandemic triggered significant changes in the lives of many informal carers of children with intellectual disabilities and the impact of those changes is yet to be fully determined (Courtenay & Perera, 2020) . The concern of many families is that people with intellectual disabilities may be forgotten as the pandemic unfolds (Silverman, 2020) . It is therefore important to gain insight into the ways informal carers coped during the first lockdown period to better anticipate their needs as further restrictions are required. As part of a larger survey study , which looked at the impact of lockdown on carers of children and adults with intellectual disabilities mental health compared with parents of children without disabilities, we conducted qualitative interviews with a small subsample of informal carers of children with intellectual disabilities to explore their narratives in order to gain in-depth knowledge of what they found challenging and what they found useful when the first lockdown measures were in place. 

Eight carers of children with intellectual disabilities were recruited and interviewed. For inclusion in this study participants required to (1) be aged 18 or over, (2) live in the UK, (3) have access to the Internet and comfortable with answering questions over the phone or using video conferencing, (4) be the primary care provider for a child with intellectual disabilities (<18 years). See Table 1 for participants' demographic details.

Carers of children with intellectual disabilities (n = 100) who completed an online survey presented via the RedCap online platform as part of a larger study were invited to participate in an interview. From those that expressed an interest in being interviewed (n = 56), 37 were selected at random by a member of the research team and invited to take part ( Figure 1 ). In addition to the consent already obtained for taking part in the main study , participants gave their verbal consent for this study after being read the information sheet by the researcher, this detailed what their participation entailed.

Response and recruitment details are presented in Figure 1 below.

Semi-structured interviews were conducted by a member of the research team during the months of May and June 2020, when a strict national lockdown regime was in place. The interview schedule is presented in Table 2 . Prior to interviewing, the schedule was practised to ensure consistent delivery. Interviews were not conducted face to face due to the lockdown restrictions. Seven interviews were recorded telephone calls as per carers' preference, and one interview was a recorded video call using the platform Zoom. The median interview time was 22.

The Halcomb and Davidson (2006) , they only provided data for the child whose details are included above.

56 out of 100 study parƟcipants expressed an interest in taking part in an interview 37 potenƟal parƟcipants were randomly selected and invited to take part via email 11 responses were received Two potenƟal parƟcipants did not reply to follow-up emails. One was deemed not eligible for interview Eight parƟcipant interviews were scheduled and conducted

recordings. This method is argued to be a valid and cost-effective means of data management, particularly suitable for mixed-method investigations. It involves making field notes during interviews, reviewing them and carrying out a content analysis to identify themes and sub-themes. The interviews were conducted by GR who also undertook the content analysis using NVivo, a qualitative data analysis software package which helps organise and structure findings within the data.

The interviews were not transcribed for reasons described by Halcomb and Davidson (2006) . The following steps of analysis were conducted.

•

Step 1: Audio taping of interviews and concurrent note taking 

Three main themes were identified: (1) Carrying the burden; (2) A time of stress; and (3) Embracing change and looking to the future.

Each of these themes comprised three subthemes (Tables 3 and 4 ). TA B L E 3 Reasons for using the Halcomb and Davidson (2006) method The Halcomb and Davidson (2006) method was adopted as it has the following advantages: • The costs associated with transcription (time, physical and human resources) are significant. • The process of transcription is open to a range of human errors, including misinterpretation of content, cultural differences and language errors. • The use of field notes taken during an interview and immediately afterwards has been found to be superior to the exclusive use of audio recordings that are subsequently verbatim transcribed. • Field notes capture researchers' thoughts and interpretations during the process of listening to audio recordings. • Audio recordings can be beneficial in assisting interviewers to fill in blank spaces in their field notes and check the relationship between the notes and the actual responses. This can reduce interviewer bias. • Audio recordings allow supervisors certify that data reported by a researcher are true and accurate. • Where there is ambiguity of meaning, the audio recording can clarify the intended meaning from the original source. • Using the original recording of the conversation allows researchers to recreate the nuances of the conversation, such as voice, tone and the specific language of participants, which may assist in more complex analysis. 

This theme is about the mother's subjective experiences caused by the extra burden imposed upon them as carers during the lockdown period. The additional demands of caring during this period resulted in increased levels of stress. 

The continuous threat of challenging behaviour in a confined space induced a sense of powerlessness and surrender (Participant C08), with one mother describing …knowing when to pick my battles (Participant C04) . For some, an uncertain future due to COVID-19 became overwhelming especially for those caring for children who struggle with change and a lack of routine:

The fact there is no certainty, that vague voidness of not knowing is difficult for him and the lack of concreteness.

In contrast to the severely challenging experiences described above, this theme concerns some of the mothers' positive experiences, directly related to the lockdown conditions.

The elimination of many daily pressures (e.g. getting ready for school) resulted in a reduction in some children's challenging behaviours. Improvements were also reported in mood, sleep, seizures, obsessive and compulsive routines, speech, and a number of children generally appeared more relaxed. Participants attributed these improvements to the removal of task demands:

She wasn't her usual self, she was really happy all the time because I wasn't asking anything of her.

(Participant C08) Moreover, some mothers reported experiencing a reduction in their own stress levels during lockdown, which they associated with having more time:

I was a lot more stress free because we had nowhere to go so I was able to give her more time.

(Participant C08) Life has calmed down considerably we were on the go a lot and now we're not so that's a positive thing.

We've had more family time which helps so actually although it's been quite an anxious time, from a family point of view we've benefited massively … going forward I won't take work as seriously I won't put as much clubs in and more family time.

(Participant C05)

Participants were able to reflect on their resilience during this difficult time:

Participant C07 reasoned that future school holiday periods (previously considered challenging) would not seem so daunting, given their proven ability to get through ( surrounding social environment has a greater impact on parents'

well-being than the severity of the child's disabilities. It is therefore of concern that family carers of those with the greatest needs and most severe challenging behaviour reported least social support from their immediate environment during lockdown .

Our analysis contextualises Willner et al. (2020) findings; the withdrawal of services and support systems that were in place for mothers of children with intellectual disabilities prior to lockdown in addition to the social restrictions placed on them created additional caring responsibilities for them. They describe the difficulties of juggling home schooling and work and how lockdown increased their child's challenging behaviours, contributing in turn to their burden of care and mental health problems.

Some mothers in our study described how they were offered but declined support from family and friends as they did not want to impose on others and because they perceived their caring tasks as their own responsibility. These descriptions complement research that found that individuals with depression were reluctant to seek help from family and friends as they were concerned about what others would think, ashamed about others knowing of their problems, and not wanting to be a burden (Griffiths et al., 2011) . Mothers of children with intellectual disabilities who perceive high levels of stigma have been found to interact less frequently with their peers in informal settings of homes and neighbourhoods (Green, 2003) .

Narratives of doubt, guilt and despondency are prevalent in our sample and confirm findings of our quantitative study ) that these negative cognitions and feelings underscore the There are several limitations to the study. We recruited a sample of mothers with caring responsibilities for a child with significant and relatively complex needs. They were also a relatively affluent sample and this may account for the fact that financial pressures affecting their well-being were not voiced during any of the interviews. Greater care needs of informal carers in relation to financial pressures during the first national lockdown were found detrimental to their mental health . Thus, it is important to also explore the experiences of informal carers from economically disadvantaged backgrounds as the pandemic continues. Moreover, our findings are based on a small (n = 8) sample and the views and experiences of those who chose not to take part may be different. There may also be a sampling bias towards those mothers who were most able to cope during the lockdown restrictions.

Alternative routes for recruitment, for example contacting local selfadvocacy groups, should be considered for future studies. Including the voices of the fathers, the children with intellectual disabilities and their siblings could also shed further light on the struggles these families experience when social restrictions are reinstated. There are many reasons to further investigate how different ethnic groups experience lockdown conditions, not least because they have varying levels of susceptibility to COVID-19 (Otu et al., 2020) .

The current study combined the voices of mothers of primary and secondary school-age children and future research may want to hone in on these groups separately in order to identify possible differences between their experiences. At the time of writing, a second national lockdown is in place, leaving people with intellectual disabilities and their families feeling that they are in a perpetual cycle of lockdown (Evans, 2020) . Following up on their experiences would provide further valuable insights into the long-term difficulties these families are facing.

A strength of the study is its qualitative nature by which the voices of mother of children with intellectual disabilities can be heard. This is to our knowledge the first study that explores the narratives of mothers of children with intellectual disabilities by means of a variety of open-ended questions that tap into how social distancing and isolation have affected their well-being and that of their children. Because the interviews took place in May and June 2020 and it was only from 15th June onwards that the first lockdown restrictions were gradually eased, it is fair to assume that their experiences were fresh in their mind and allowed them to provide us with rich and detailed data.

Some of our findings may be used to inform future service responses to these families amidst the COVID-19 crisis, for example, by having a care plan in place based on the carers' and children's needs and preferences (Alexander et al., 2020) . Some elements of the care plan could include local online support groups or helplines, respite options, remote professional advice and ensuring that children have easy access to education tailored to their needs. To make sure that families with greater care needs feel socially included and supported, neighbourhood schemes could be developed. During the first lockdown, neighbours were encouraged to support older people (Age UK, 2020) and similar support for families caring for children with intellectual disabilities could be encouraged through national and local media. Community education targeting de-stigmatisation could also be of benefit.

The use of IT was not raised by the mothers in this sample although this topic was discussed by participants of its sister study of family carers of adults with intellectual disabilities, who mentioned it as a useful source of support for keeping in touch with friends and family and other parent-carers of adults with intellectual disabilities (Patel et al.,, in preparation) . Patel et al's findings are consistent with a review highlighting the usefulness of Internet-based support groups for carers of adults with intellectual disabilities as a way of keeping socially engaged (Perkins & LaMartin, 2012) . For parents of children of school age, IT will have further relevance in terms of home schooling and communicating with educational and other professionals involved in their child's care (Lee et al., 2020) .

Finally, the voices of children with intellectual disabilities and their families need to be continuously listened to as the pandemic unfolds in order to become more sensitive to their needs by means of care plans that make them feel included, appreciated and respected, instead of overlooked and marginalised.

The team would like to thank the British Institute of Learning Disabilities, the Challenging Behaviour Foundation, MENCAP and all who assisted in the recruitment process for this study. We would also like to thank the mothers who took part in this study, without you this would not be possible.

Neighbourly volunteering

Guidance for the treatment and management of COVID-19 among people with intellectual disabilities

How is COVID-19 affecting the mental health of children with special educational needs and disabilities and their families?

Psychological impact of Covid-19 pandemic in Italian families of children with neurodevelopmental disorders

The psychological impact of quarantine and how to reduce it: Rapid review of the evidence

Our survey on the impact of Coronavirus on young carers and young adult carers in Scotland

Informal home care providers: The forgotten health-care workers during the COVID-19 pandemic

Psychosocial and behavioral impact of COVID-19 in autism spectrum disorder: An Online Parent Survey

Coronavirus Act England and Wales Regulations

Coronavirus: Parents of disabled children 'cut off and ignored

COVID-19 and people with intellectual disability: Impacts of a pandemic

First things first: Parent psychological flexibility and self-compassion during COVID-19

Mental health in the COVID-19 pandemic

Mortality of people with intellectual disabilities during the 2017/2018 influenza epidemic in the Netherlands: Potential implications for the COVID-19 pandemic

Why people with learning disabiltiies and their families fear another COVID-19 lockdown

Challenges and burden of the Coronavirus 2019 (COVID-19) pandemic for child and adolescent mental health: A narrative review to highlight clinical and research needs in the acute phase and the long return to normality

Predictors of psychological morbidity in parents of children with intellectual disabilities

What do you mean 'what's wrong with her?'": stigma and the lives of families of children with disabilities

he's hard work, but he's worth it'. The experience of caregivers of individuals with intellectual disabilities and challenging behaviour: A meta-synthesis of qualitative research

Seeking help for depression from family and friends: A qualitative analysis of perceived advantages and disadvantages

People with intellectual disabilities and the COVID-19 pandemic

Is verbatim transcription of interview data always necessary?

Parental stress and behaviour problems of children with developmental disability

Brink of collapse': Parents of disabled children buckling under 24-hour care

Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: Cross-sectional study

Impact of COVID-19 on the mental health and wellbeing of caregivers and families of autistic people: A rapid synthesis review

It terrifies me, the thought of the future': Listening to the current concerns of informal carers of people with a learning disability

The mental health emergency: how has the coronavirus emergency impacted our mental health

One country, two crises: what Covid-19 reveals about health inequalities among BAME communities in the United Kingdom and the sustainability of its health system?

Impact of Covid-19 on the experiences of parents and family carers of autistic children and young people in the UK. UCL Institute of Education

The Internet as social support for older carers of adults with intellectual disabilities

Evaluating a dynamic process model of wellbeing for parents of children with disabilities: A multi-method analysis

The relationship between challenging behaviour, cognitions and stress in mothers of individuals with intellectual disabilities

The effect on and experience of families with a member who has Intellectual and Developmental Disabilities of the COVID-19 pandemic in the UK: Developing an investigation

People with intellectual disabilities may be denied lifesaving care under these plans as coronavirus spreads

Caring for a family member with intellectual disability and epilepsy: Practical, social and emotional perspectives

Supporting families with children with special educational needs and disabilities during COVID-19

The relationship between caregiver's strain and social support among mothers with intellectually disabled children

Mediation of depression by perceptions of defeat and entrapment in high-stress mothers

Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities

Life as a parent carer during lockdown

The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period