Table 3

Further illustrative quotes relating to disease containment

Fear of risk of the childIn the beginning we were extremely concerned and worried about our son catching the virus as months before we had been In hospital for just a cold.
At the beginning, I think like most people, seeing people on ventilators with respiratory issues was extra concerning for TOFs.
Cutting all contact with othersIt was extremely stressful, we completely cut off contact with friends and family and shielded, which was difficult and upsetting.
We completely shielded too to be safe so none of us at home left the house (apart from me walking the dog) March to August.
Transition to worry about socialisation/developmentNow my main worry is him getting the care and support he needs to develop during the crisis.
Risk versus benefitMy son is 3 and I personally think he needs to social interaction with other kids and family members. It’s a risk- but keeping him cooped up is not natural.
Feeling reassuredI was relieved when his respiratory consultant explained he no longer needed to shield.
TOFS was ever a great source of support and information by direct posts of latest information and from other parents and their experiences. My son’s two consultants were very helpful in putting my mind at rest too.
Moving out of isolationNow we are back to normal and he is going to nursery we are as careful as possible in terms of hygiene but are living as normal now.
It was a worry with our little boy starting Reception… It did ease our minds a little to know the school was doing everything they could.
Ongoing fear and isolationI’m not sure if he should be in school or not but I’m keeping him home.
We weren’t advised to shield but did anyway until August and remain cautious. Our TOF is 10 months now - his grandparents have only held him twice and he has yet to meet Uncles and cousins.
Parental mental health impactI had finally (after poor care at the outset meant we were never seen by the counsellor) started getting help for PTSD.
For the last 6 weeks I have been signed off because the pressure overwhelmed me. I have been signed off for a further month and referred for counseling by HR.
Impact on work and work–life balanceMy husband’s ability to work was affected since he was at home with a screaming child usually with him (I was entertaining the 2 year old).
More work, less time, more pressure to do housework and make the meals due to being at home - and having to create time to make sure we were getting lots of exercise- all his health needs are managed by me.
  • HR, human resources; PTSD, post-traumatic stress disorder; TOF, tracheo-oesophageal fistula.