As part of the work we are doing with the team in Children’s Health Ireland, Dr Bronagh Kennedy (Senior Clinial Psychologist), has kindly put together some advice for families caring for a child or adolescent with EB.

Since March 2020 the Covid-19 pandemic has become an unprecedented additional source of stress for all and an added layer of challenge for families already coping with the demands of caring for a family member with EB. Coping with EB can bring with it periods of high anxiety and stress due to the complex, unpredictable medical nature of the
condition. Families may already be contending with providing high levels of physical care at home, pain management and varying degrees of social isolation.

Dr Bronagh Kennedy (Senior Clinial Psychologist) from the Psychology Department in Crumlin’s Children’s Hospital, has kindly put together some suggestions on how families caring for someone with EB can go about looking after their own emotional well being during the pandemic.

  • Pay attention to your own eating, sleeping and exercise pattern. Try to prioritise regular healthy meals, good quality sleep or rest as well as one form of exercise each day.
  • Give yourself permission to take breaks during the day (even if only a short break is
    possible) and shelve any guilt associated with this. Where possible try and alternate tasks
    between parents and caregivers, e.g. taking it in turns to go to the supermarket or
    pharmacy or help with the homeschooling.
  • Bring to mind healthy ways you have managed stressful situations before, e.g. pursuing a hobby, walking, reading, spiritual practice, relaxation strategies, exercise, calling a friend.
    Following hobbies/activities online or virtually may seem very strange initially but try to persist as this can become more rewarding over time.
  • Be patient with yourself. It is understandable and expected that parents and caregivers will experience good and bad days in coping with the additional stress caused by the impact of the pandemic. Try and notice and pay attention to the all the changes that you and your family have coped with. Compliment and encourage each other with this. Acknowledge all the efforts that you have been making, e.g. to homeschool, queue at the supermarket, adhere to cocooning, maintaining social distancing and hand hygiene etiquette, keeping up to date with our Government guidelines.
  • If you are having a particularly bad day try altering your expectations a little for that day, e.g. let go of not getting the laundry done but compliment yourself for having made it through the long queue at the supermarket!
  • Try and find humour and laughter wherever you can. Be patient with your children and dependents. They too are experiencing good and bad days. Notice and praise the efforts they are making to adjust to all the new routines and restrictions.
  • Stay in touch with family and friends and work colleagues. Talk to people you trust about what you are going through. Talk about your day and how you are feeling. Try not to minimise the importance of your everyday experiences no matter how mundane they may seem to you.
  • Stay in touch with your health care support services and child’s school or preschool. Continue to discuss any medical or emotional concerns you may have. Phone lines are in operation and services are actively developing alternative safe ways of providing their support.
  • When things get tense, take a break, pause for as long as possible to allow for tensions to calm. When things are calm, try to talk openly about how you are getting on with your family or with a trusted friend.  Acknowledge and support each other’s feelings and experiences but try not to dwell on them.
  • Do personal check-ins. Do not put up with prolonged periods of sadness, sleeping difficulties or feeling hopeless. Contact your GP if this happens and your usual coping strategies don’t seem to be helping. Likewise if you are concerned about prolonged periods of tension in your home or the emotional well being of anyone in your family contact your GP in the first instance. Your regular support services in the community and at the hospital or through DEBRA Ireland are also contactable.

Recommended links and resources:

The DEBRA international “Covid Information contains approved medical recommendations and
has a section for adults and children on minimising the psychosocial impact of the pandemic.
https://www.debra-international.org/covid-19

CHI resources: Helping children and adolescents cope with Covid and its impact:
https://www.olchc.ie/Children-Family/COVID-19-Message-for-Families-/CHI-at-Crumlin-Psychology-Dept-Supporting-Children-and-Adolescents-a-Guide-for-Parents-During-COVID-19.pdf

https://www.olchc.ie/Children-Family/COVID-19-Message-for-Families-/My-COVID-19-Time-Capsule.pdf

Practical self help for adults: Practical article on “coping with worry and anxiety a midst global
uncertainty”
https://www.psychologytools.com/articles/free guide to living with worry and anxiety amidst global
uncertainty/

If you have significant concerns about your child’s well-being/ mental health please contact your GP.