Road to recovery: Understanding the impact of COVID and recovery phases on children and young people with Intellectual Disabilities and their families
Lead Research Organisation:
University of Edinburgh
Department Name: Sch of Health in Social Science
Abstract
Intellectual disabilities (ID) are characterised by social, and cognitive difficulties that are often associated with challenging behaviours. Increased levels of mental health issues have been reported in children and young people with Intellectual Disabilities (ID) and their caregivers. The COVID-19 response strategy entailed limiting access to education, respite care, and specialist services, therefore reducing the available support for families, with unknown consequences.
The relative vulnerability of children with ID was highlighted by a recent report by the Children's Society (2020) which indicated that children with ID are more susceptible to wellbeing and mental health issues as a result of COVID and require urgent support in adapting to routine changes and understanding what is going on. These routine changes and reduction in access to services will continue for some time despite the recent implementation of the UK wide vaccination programme, further compounding mental health outcomes in children with ID and their parents.
As we move into COVID transition phase, the current project will:
1) identify the family structure and social demographics of families who have a child with ID who are at greater
risk of parent and child negative mental health outcomes;
2) explore the lived experiences of CYP with ID and their caregivers during COVID and transition phases
3) understand the CYP's and parent's experience of the recovery phase, including the lasting effects of COVID.
The relative vulnerability of children with ID was highlighted by a recent report by the Children's Society (2020) which indicated that children with ID are more susceptible to wellbeing and mental health issues as a result of COVID and require urgent support in adapting to routine changes and understanding what is going on. These routine changes and reduction in access to services will continue for some time despite the recent implementation of the UK wide vaccination programme, further compounding mental health outcomes in children with ID and their parents.
As we move into COVID transition phase, the current project will:
1) identify the family structure and social demographics of families who have a child with ID who are at greater
risk of parent and child negative mental health outcomes;
2) explore the lived experiences of CYP with ID and their caregivers during COVID and transition phases
3) understand the CYP's and parent's experience of the recovery phase, including the lasting effects of COVID.
Organisations
Publications
| Title | The experiences of Covid - by parents of children with Intellectual Disabilities |
| Description | A video was created with two parents from the Road to Recovery project outlining the positives and negatives during Covid and the recovery phase. This is the parents stories in their own words. |
| Type Of Art | Artistic/Creative Exhibition |
| Year Produced | 2021 |
| Impact | The video was uploaded to the project website as well as being released via social media. This helped to further engage participants, charities and other networks. |
| URL | https://media.ed.ac.uk/media/Road+to+Recovery+projectA+parents%27+experiences+of+the+pandemic+/1_qq7... |
| Title | The images of Children - a video exhibition of some images created and captured by children during Covid. |
| Description | A video was created showing images taken and created by children with Intellectual Disabilities (ID) during covid times. This video is shown with a researcher talking about photovoice as a method and how images are a way that children with ID can express their insights and thoughts. |
| Type Of Art | Artistic/Creative Exhibition |
| Year Produced | 2021 |
| Impact | This video was uploaded to the website and also circulated via social media. This helped to engage more parents and charities to take part or help promote the project. |
| URL | https://media.ed.ac.uk/media/Road+to+Recovery+projectA+what+is+photovoiceF/1_uoimzgi4 |
| Description | This project aimed to 1) identify the family structure and social demographics of families who have a child with ID who are at greater risk of parent and child negative mental health outcomes; 2) explore the lived experiences of CYP with ID and their caregivers during COVID and transition phases; 3) understand the CYP's and parent's experience of the recovery phase, including the lasting effects of COVID. The project comprised of a survey (to be completed by parents who have children with and without Intellectual Disabilities) to understand the family structure and social demographics of families who have a child with Intellectual Disabilities and parental mental health. The project also carried out parental interviews with parents and photovoice sessions with the children who have intellectual disabilities. Analysis is still ongoing for the photovoice sessions and parental interviews. The survey asked parents about their coping behaviours, an indicator of child distress (i.e. poorly controlled emotional reactions, e.g. anger, irritability and frustration) as well as parental mental health at two time points - Time 1 (T1; Phased Lockdown, August-December 2021) and Time 2 (T2; Eased Lockdown, January-March 2022). The results have been analysed and these show that levels of child distress, parental stress, anxiety and depression were all significantly higher in T1 compared to T2. This indicates that both parent and child mental health improved as Lockdown eased. High levels of child distress was found to be related to high levels of caregiver stress, anxiety and depression in both parent groups (parents who have children with and without Intellectual Disabilities) during T1. High levels of child distress continued to be related to high levels of parental anxiety in both parent groups and high levels of stress in parents of children with Intellectual Disabilities only in T2. This shows that child's levels of distress was more related to parent's mental health outcomes in T1 which may have been caused by the increased time spent together within close proximity. The easing of lockdown may have allowed more time to be spent separately either by returning to the workplace, school, or engaging in more lone leisure time. Parental coping was shown to be a crucial predictor of poor mental health outcomes in both parent groups at both time points. Specifically emotion-focused coping (i.e. venting, use of emotional support, self-blame and acceptance) predicted parent stress and anxiety at both time points. Avoidant coping (i.e. denial, substance use, self-distraction and behaviour disengagement) predicted all parental mental health outcomes Stress, Anxiety and Depression at both time points. This shows that how parents react during times of stress contributes to their mental health. These coping behaviours can be targeted and improved to reduce poor mental health outcomes. Demographic data showed that the only significant predictor was parent's qualification level during T1 for the parents of children with Intellectual Disabilities only. This showed that those parents with higher qualifications reported lower levels of child distress. No other demographics including child age, number of siblings, parent marital status or parent employment was related to child distress, parent coping and parent mental health. |
| Exploitation Route | The outcomes from the grant can be taken forward by parliament and government, as well as social and clinical services. The research shows that demographics had little effect on child distress, parent coping and parental mental health. Instead child distress, and parent's coping contribute significantly to poor parental mental health. Therefore measures must be taken to continue to support the family as a whole to improve mental health for both parents and children. In addition parental coping behaviours were significant predictors of parent mental health. Social and clinical professionals can provide interventions or psycho-educational materials to target and improve coping strategies in parents leading to positive mental health outcomes. |
| Sectors | Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice |
| Description | The results collected as part of this project has contributed to policy briefs, parliamentary reports and government inquiries. These parliamentary reports and inquiries have went on to provide recommendations to governments on how best to support mental health in children and young people as well as families following Covid-19 Lockdown. |
| First Year Of Impact | 2022 |
| Sector | Education,Healthcare,Government, Democracy and Justice |
| Impact Types | Policy & public services |
| Description | Health and Wellbeing of Children and Young People; Scottish Parliament. |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://digitalpublications.parliament.scot/Committees/Report/HSCS/2022/5/13/bcc3be8f-4d1c-41c1-9036... |
| Description | Parliamentary response to Health and Social Care Committee |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://business.senedd.wales/documents/s120794/COV%2009%20-%20Dr%20Karri%20Gillespie-Smith.pdf |
| Description | Parliamentary response to Inquiry into the Health and Wellbeing of Children and Young People |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://yourviews.parliament.scot/health/cyp/consultation/view_respondent?uuId=953932002 |
| Description | University of Edinburgh's ESRC Impact Accelerator Grant scheme |
| Amount | £2,100 (GBP) |
| Funding ID | EDI-21/22-E0048 |
| Organisation | University of Edinburgh |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 11/2021 |
| End | 11/2021 |
| Description | Covid Survey can help young lives, experts say. |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | A press release to communicate preliminary findings, outline objectives of next study stage (i.e. photovoice sessions and parent interviews) and encourage participation. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.ed.ac.uk/news/2021/covid-survey-can-help-young-lives-experts-say |
| Description | Hope Academic Joins Covid-19 Research Team' |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | A press release to communicate the study, outline objectives and encourage participation. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.hope.ac.uk/news/allnews/hope-academic-joins-covid-19-research-team.html |
| Description | International Public Policy Observatory - IPPO Action on Inequalities: What should be in post-COVID recovery plans? |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Took part in the International Public Policy Observatory - IPPO Action on Inequalities: What should be in post-COVID recovery plans session to outline the key findings of the research at that time and add some expert opinion about key concerns of post-Covid recovery strategies on children with ID and their families. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Key Study gauges covid's impact on young lives. |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | A press release to communicate the study, outline objectives and encourage participation. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.ed.ac.uk/news/2021/key-study-gauges-covid-s-impact-on-young-lives |
| Description | Lockdown stresses worse for parents and their children with intellectual disabilities. Things haven't improved since. |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | A blog was written, summarising initial findings and outlining the next step in the project (photovoice sessions with Children who have Intellectual Disabilities and interviews with their parents). This was written for the Special Needs Jungle which is a parent led website which features guest blogs, newsletters, information and resources for children who have Special Educational Needs (SEN). |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.specialneedsjungle.com/lockdown-stresses-worse-parents-their-children-intellectual-disab... |
| Description | Podcast interview - Dr Kathy Weston's Get a Grip |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Podcast interview with Kathy Weston talking about the main findings from the grant including the continued impact of lockdown on children with Intellectual Disabilities and their parents. There is a brief overview of the UKRI-ESRC funded project - the main aims and methods employed in the study. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://podcasters.spotify.com/pod/show/dr-kathy-weston/episodes/Episode-94---Dr-Weston-Talks-with-D... |
| Description | Road to Recovery Project - Understanding the impact of COVID and recovery phases on children and young people with Intellectual Disabilities and their families. |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | A website was created that is hosted by the University of Edinburgh, Clinical Psychology pages. This website informs the public about the current findings of the research, outputs from the research so far and also tells the public how to take part in the research. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.ed.ac.uk/health/subject-areas/clinical-psychology/research/research-groups/road-to-recov... |
| Description | Road to Recovery Roundtable Discussion Event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | This roundtable event was held bringing together four key stakeholder groups including parents and carers, charity and advocacy groups, clinical practitioners, and representatives from the education sector. The aim of this event was to bring together key stakeholder groups to discuss how the COVID-19 pandemic had impacted families with children with intellectual difficulties (ID) and how best to support these families now the United Kingdom was in the recovery phases, whereby nations were transitioning out of their imposed lockdown restrictions. The outcomes have been excellent connections including links with large parent and charity organisations including - National Autistic Society, MENCAP, Council for Disabled Children and Disabled Children's Partnership. There are ongoing discussions to link up with these organisations to apply for further funding to develop and implement an e-resource for parents and carers dealing with children's challenging behaviours (i.e. indicators of distress). There was also a total of three outputs have been produced from this event, this includes a full report, a policy brief, and an easy-to-read version of the report that is accessible to children and young people with ID.Full roundtable report - Gillespie-Smith, K., Christie, H., Goodall, K. E., McCanchie, D., Gallagher-Mitchell, T., Van Herwegan, J., Outhwaite, L., Ballantyne, C., Crawford, C., Moss, J., Richards, C., Steindorsdottir, F., & Khawam, G. (2021). Road to Recovery Project Rountable Discussion Event: Summary Report. Edinburgh: School of Health and Social Science Research, University of Edinburgh. https://www.ed.ac.uk/files/atoms/files/road_to_recovery_-_roundtable_report_nov21.pdf Policy brief - Gillespie-Smith, K., & Christie, H. (2021). Having to jump off a bridge for help: Parent and Stakeholder perspectives of what continues to impact children with Intellectual Disabilities (ID) and their families across the UK. Edinburgh: School of Health and Social Science Research, University of Edinburgh. https://www.ed.ac.uk/files/atoms/files/gillespie-smithchristie_policy_brief_2021.pdf Easy to read summary - Khawam, G. (2021). Impact of Covid 19 and recovery phases on children with intellectual disabilities and their parents. Road to Recovery Roundtable Talk Summary. Edinburgh: School of Health and Social Science Research, University of Edinburgh. https://www.ed.ac.uk/files/atoms/files/khawam2021_easy_read_-_r2r_roundtable_talk.pdf These policy briefs provided some information that was used in a recent report submitted to a Westminster Debate Disabled Children's Partnership (DCP) and Young Minds briefing on mental health of disabled children, young people and parent carers, Disabled Children's Partnership Report, submitted to the Special Educational Needs and Children's Mental Health Services, Westminster Hall Debate, 9th February 2021. |
| Year(s) Of Engagement Activity | 2021 |
| Description | The story so far - how covid 19 has impacted and continues to impact children with intellectual disabilities and their families |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The team was invited to present current findings from the project as well as findings from the roundtable event to the Special Educational Consortium, Council for Disabled Children. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Video summary of initial findings - Road to Recovery |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | This video captured the lead researcher outlining the importance of the current study, presenting preliminary findings and outlining the next steps (i.e. photovoice sessions and interviews). |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://media.ed.ac.uk/media/Road+to+Recovery+projectA+what+do+we+know+so+farF/1_qi3z3g0x |