EACD COVID-19 SURVEYS REPORT

EACD COVID

The COVID-19 pandemic has in many parts of the world made it necessary to impose strict restrictions to reduce the spread of the disease and to avoid overwhelming healthcare services. These restrictions and the concerns regarding the COVID-19 illness have had an immense impact on individuals with a childhood disability and their families, and on the professionals working with them.

In order to gain insight into the impact of the COVID-19 pandemic on children with disabilities, their families and service providers/professionals across Europe, EACD performed an online survey among 1663 professionals working in the area of childhood-onset disability, and an online survey among 1790 families with one or more individual(s) with a childhood-onset disability in April–May 2020.

The survey aimed to better understand how to support individuals with a childhood disability, not only during future pandemics or serious global events, but also during their everyday lives, by being better prepared to provide the best possible care and support as society recovers.

To reduce the spread of COVID-19 and ‘flatten the curve’ to avoid overwhelming healthcare services, many restrictions and measures have been implemented by most European countries. They include among recommendations on the practice of other isolation and the practice of social distancing. However, unintentionally these measures and restrictions reduced the availability and access to health care services and treatments provided to people with a childhood disability.

70% of the families reported a reduction in the amount of treatment/therapy received during the period March-May 2020. 49% even reported that the individual with a childhood-onset disability did not receive any treatment/therapy at all in this period.

The COVID-19 crisis has led to an extreme burden being placed upon the (family) caregivers, in which 69% of the families reported the burden being placed upon them to be very high in the period March-May 2020. 40% even scored it as extremely high. On top of that, 51% of the families reported to have experienced a financial impact due to the COVID-19 crisis.

Taking this altogether, there are clear indications that the COVID-19 crisis is having an enormous impact on the mental health of individuals with a childhood-onset disability and their families. 62% of the families reported increased levels of stress and anxiety during the COVID-19 crisis, and 77% of the professionals reported to have noticed a mental health impact on individuals with a childhood-onset disability/disorder due to the COVID-19 crisis.

Interested in more detailed information about the initial outcomes of the EACD COVID-19 Surveys? Please click here to download our Initial Report.

Preliminary update on analyses of open-ended survey questions:

In-depth, qualitative analyses of the free text comments to the open-ended survey questions are being performed to further increase our insights on the experiences of families and professionals, to better understand how to provide the best possible care to people with a childhood disability in these difficult times. Please find below an overview of the first preliminary update to these qualitative analyses:

Reported barriers to optimal treatment provision:

  • No alternative method sufficiently can replace regular treatments/therapies/ consultations as very often assessments or diagnoses are very difficult to impossible without face-to-face meetings or physical contact
  • Less contact moments with patients and limited number of face-to-face meetings
  • Difficulties in getting in contact with some families, and with maintaining contact/follow-up with patients.
  • Communication with patients and families more difficult using remote methods due to the loss of body language and non-verbal communication.
  • Contacts were hindered due to various technological issues or a lack of resources by either the therapist or the family (e.g. financially, equipment availability, time-wise, space-wise).
  • Everyday activities taking more time, with less support available from supportive services (administration, IT, etc.), and less team discussions. 
  • Implemented measures led to being redeployed to another area; being only allowed to provide acute/urgent/emergency treatments; practice being closed or services severely limited; postponement of treatment decisions.

Reported methods to support families:

  • Provide emotional support and/or listening ear, reassure the patients and family caregivers where possible; 
  • Try to schedule regular contact moments; 
  • Try to be flexible/accessible/creative (e.g. by providing (on loan) equipment/resources to homes; teaching parents how to perform therapy at home; etc.)
  • Use of patient-led problem solving
  • Support the patients and family caregivers in prioritizing, and assist in providing structure to patient/family

Main concerns by professionals and families:

  • The mental health impact on families.
  • The long-term effects on patients, and fear of worsening of conditions due to lack of treatment.
  • Patients not coming back to the health care setting out of fear of contagion, and worries about families who are difficult to contact out of fear of missing children who need referral.
  • Worries about the immense burden being placed on families.
  • Feelings of uncertainty about the future and loss of income, often accompanied with feelings of fear, anxiety, stress and/or frustration.

Advice to policy-makers:

  • Put the needs of children and young people with a disability at the forefront and keep in mind the impact of guidelines/restrictions on people with a disability.
  • Provide clear, consistent and realistic guidelines and information, and follow expert advice from clinicians, researchers, frontline works, and families.
  • Provide resources and support to mitigate the mental health impact on families and professionals, and to mitigate the impact on health care services for chronic and long term conditions.
  • Ensure the provision of adequate socio-economic and financial support for (less-resourceful) families, and to not implement austerity measures in healthcare in the aftermath of the COVID-19 crisis.

Other survey initiatives at national level across Europe:

Netherlands (Dutch Academy of Childhood Disability):

Alsem MW, Engelbert RHH, Knoester H, Buizer AI. (2020). Revalidatieaspecten van COVID-19 bij kinderen: kinderspel? Nederlands Tijdschrift voor Revalidatiegeneeskunde. Juni 2020
https://nvfk.kngf.nl/binaries/content/assets/bi/nvfk/onbeveiligd/actuee…

Alsem MW, Berkhout JJ, Buizer AI. (2020) Letter to the Editor: Therapy needs and possibilities in paediatric rehabilitation during the COVID‐19 lockdown in the Netherlands. Child: care, health and development. DOI: 10.1111/cch.12797
https://onlinelibrary.wiley.com/doi/10.1111/cch.12797

COVID-19 pandemie voor kinderen met zorgbehoeften en hun gezinnen: Geen kinderspel!
https://kindenzorg.nl/covid-19-pandemie-kinderen-zorgbehoeften/

France (Enquête ECHO)

This survey was developed and is supported by BEaCHILD, FRISBEE, R4P, MPR CHU-Les Capucins-Angers , SFERHE, SOFMER, la Fondation Paralysie Cérébrale, l’IFRH and AFM-Telethon,  Institut cerebral motricité-formation-et-documentation , FFAIMC, FIRAH https://enqueteecho.fr/solutions/

Cacioppo M, Bouvier S, Bailly R, et al. Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey [published online ahead of print, 2020 Aug 18]. Ann Phys Rehabil Med. 2020;S1877-0657(20)30157-3. doi:10.1016/j.rehab.2020.08.001.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434423/

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