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COVID-19 pandemic experiences of parents of OA/TOF children published

Research on the COVID-19 pandemic experiences of parents caring for children with oesophageal atresia/tracheo-oesophageal fistula has been published by Alex Stewart, Christina Smith, Simon Eaton, Paolo De Coppi & Jo Wray.

Alex Stewart, speech and language therapist at Great Ormond Street Hospital and University College London shares some more information on the study here.

The aims of the research were:

  1. To describe parent experiences of medical care during the pandemic
  2. To describe and understand what parents did to keep their children safe during the pandemic
  3. To understand what impact “shielding” or social isolation had on children born with OA/TOF and their families
  4. To learn from these experiences and make recommendations for healthcare professionals to improve care

What did we do?:

Along with TOFS and a group of OA/TOF parents we wrote 6 questions to answer the aims of the project. Using a private, research-specific Facebook group we asked parents of children born with OA/TOF to share their experiences.

Who took part?:

109 parents from across England, Scotland and Wales joined the Facebook group. 65 parents completed an “about me” survey, so we know that most of the group were mothers (89%). 72% were parents of children under 5 years old.

What did we find out?:

We split the results into information about getting medical care and information about coping during the pandemic.

Getting medical care

  • Almost everybody’s appointments changed to phone or video appointments.
  • Lots of people found this positive. No travel, no waiting, less time off work or school were all positive changes. Some parents felt that there were now able to speak to their healthcare team more easily than before the pandemic.

    One parent said.
    “They switched it to a telephone appointment. I was really impressed! The consultant was clearly liking the format too, because he suggested the same next year! Oh, and we were ‘seen’ early – no hanging around for an hour in Clinic 6. It was actually a much better experience than normal”

    However, many people felt that video or phone appointments were limited. They felt their child didn’t get properly assessed, they didn’t have their questions answered or that progress was slower because it wasn’t face-to-face.

    For example, one parent said, “I am concerned that her health has deteriorated slightly over the last month of two and I really would have liked next week’s TOF clinic to be face to face as I think the respiratory consultant needs to listen to her chest.”

  • On the whole parents felt that it was easier to get hold of doctors/nurses/therapists in hospital than it was in the community. It seems that community Speech and Language Therapists were particularly difficult to see.

    One parent said, “Community seem to have washed their hands of us.”

  • Appointments delays and difficulty getting hold of healthcare teams also led to some children needing emergency care, when it could have been dealt with as a non-emergency if they were seen sooner.

    One parents said, “We had to wait months for an elective scope and dilatation, this became an emergency procedure as was not carried out on time and symptoms persisted.”

  • A number of parents described being very careful so as to avoid going into hospital. Parents described that health professionals had also advised against being seen in hospital if at all possible because of worries about infection.
  • But, all parents described feeling safe when they did need to go into hospital, either for a ward admission or an out-patient appointment.
  • Hospital admissions were made much more difficult by restricting visiting to just one parent. Caring alone was psychologically and practically difficult.

    One parent said, “the one parent for hospital stays is incredibly hard. To expect parents not to be with babies when they go in for surgery is really harsh.”

    While another said, “When you have a child to care for, then the “one parent” rule means you’re trying to do multiple jobs at the same time, which is not efficient for the medics, and not good for ensuring your child gets the care needed.”

Coping during the pandemic

  • Almost all parents described being very scared for their child at the start of the pandemic. Most people “shielded”, although whether or not you got official advice to shield was very mixed. Most people cut off all contact with others for the first few months.

    One parent said, “In 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.”

  • As time went on, some parents described feeling reassured by information from TOFS, other parents, healthcare professionals or reading the news. Some parents described becoming less worried about the health risks but more worried about the effect that not socialising was having on them and their child. Parents described balancing the benefits of mixing with others with the risks to their child’s health. This meant that some parents started to see others and their child returned to nursery or school, and others felt that it was safer to continue to isolate.
  • Some parents have stayed very worried about their child catching COVID-19. The stress and worry has meant that they haven’t been able to work. Difficulties getting medical advice has also affected some parents’ mental health.

    “For the last six weeks I have been signed off because the pressure overwhelmed me. I have been signed off for a further month and referred for counselling by HR.”

  • Some parents felt grateful for the time they have had as a family because of lockdown. However, a number of parents described the difficulty juggling work and home-schooling or caring for children. Having lots of people in the house all day was also stressful.

    One parents said, “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.”

  • Many parents felt that their child had never been healthier than during lockdown. They noticed that their children were eating better and made good developmental progress as they had not had any of the usual infections that come along with coughs or colds.

    One parent said, “On a positive note she is thriving…not had any illnesses has meant she has been able to develop and grow and become a healthy toddler”

What are we doing with this information?:

The results have been published in the BMJ Paediatrics Open medical journal

One of the key points made in this research is the need to improve telehealth (video and phone appointments).

With TOFS we have developed some top tips for parents to help get the most out of video appointments. We have also recommended services involve parents and children when setting up telehealth services. Involving parents and children can help make sure the way that health care is provided meets the needs of those using it.

We also recommend that community services, such as Speech and Language Therapy and Health Visiting, are not stopped during future “lockdowns”. It is clear that stopping these services effects a child’s health and development as well as parental well-being. Stopping community services should only happen as a last resort.

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