Learning from patients and families during a pandemic

21 Jun 2021, 11:38 a.m.

Alexia and Henrietta - patient survey.jpg

Researchers at Great Ormond Street Hospital have worked with a patient support group - Tracheo-Oesophageal Fistula Support (TOFS) - to better understand the wide range of parenting experiences brought about by the COVID-19 pandemic while caring for a child with complex needs, publishing their results in BMJ Paeds Open.

Oesphageal atresia and tracheo-oesophageal fistula (known as OA/TOF) occurs in approximately 200 babies a year in the UK. These conditions occur when the oesophagus (food pipe) and, or, trachea (wind pipe) don’t form or don’t connect properly. The result is that children are either unable to swallow food or they swallow food into their lungs instead of their stomach. Babies born with this condition need surgery in the first few days of life to allow them to eat. While surgical advances have led to excellent survival, infants can often have difficulty swallowing and can experience ongoing difficulties with digestion, breathing and respiratory infections.

The team at GOSH wanted to understand more about how the past year had impacted these families and what they could teach us about steps to come out of the pandemic for all patients at GOSH.

Over 100 parents joined a research-specific Facebook group to share their life experiences during the pandemic while caring for a child with oesophageal atresia/tracheo-oesophageal fistula. Topics discussed were mainly on access to health care and protecting their child from COVID-19.

At Great Ormond Street Hospital, we put research at the heart of everything we do. This work, reaching out to our patients to understand their experiences, led by speech therapists, is a perfect example of how we can work together to improve the care and outcomes for children with rare and complex diseases.

Dr Jenny Rivers, our Deputy Director of Research and Innovation

Accessing health care

Alexia is the mum of Henrietta, age 1 (pictured), who has been treated at hospitals throughout the pandemic "As parents, we felt the study provided a valuable opportunity for us to give an insight into the day-to-day reality of the impact of COVID-19, (including the rules implemented by hospitals), on patients and their families.

"Remote access to healthcare brought with it some benefits, not least the reduction in circuits of the hospital car park searching for a space! However, as parents of a young baby with a long term health condition, the COVID-19 experience was isolating and at times unnecessarily frightening. Remote healthcare created a 'disconnect' between patient/parent and consultant... here were times when we felt abandoned by the healthcare professionals, and we experienced delays to urgent healthcare needs."

"Even when seen in person, hospitals’ “one parent rule” left one parent excluded from life-changing decisions. Meanwhile the other was left to multi-task – juggling a needy baby/toddler whilst trying to process complex and important information in order to have a serious and focussed discussion with medics – all at a time when their mind should have been entirely devoted to achieving the best treatment and prognosis for their child.

"Taking your seven month old baby in for her sixth trip to theatre on your own is heart-breaking. Life on a ward is lonely. You and your child are separated from your partner and your other children. There is no respite; there is no support. In some hospitals, we have been required to wear a mask even when with our baby, causing additional distress to a vulnerable baby in pain."

Henrietta in front of a car

Henrietta's mum was part of the GOSH research working with patients and families

Without exception, parents like Alexia described changes to how they accessed their health care. Many reported delayed and cancelled appointments, with a rapid shift to video or phone consultations replacing ‘in-person’ appointments. While many parents found the virtual-appointments convenient and effective, others felt disconnected from their healthcare teams, struggled to get answers to their questions and described feeling abandoned. Access to community care appeared to be particularly hard hit, particularly speech and language therapists but health visitors, dieticians and GPs were also singled out as hard to reach.

The impacts felt by families ranged from feeling like they were making no progress and uncertainty regarding advice to the need for emergency admissions to manage problems that could have been managed in advance. The reduction in health care access didn’t just impact the child’s health and development, but also caused deterioration to parents’ mental health due to the associated anxiety of caring for a vulnerable child in a global pandemic.

Shielding their child

With a child vulnerable to respiratory infections, the emergence of a new respiratory virus created understandable fear for many parents. One of the challenges of having a child with a rare disease is feeling confident that you are getting the right advice, as parents often feel that they know more about their child’s condition than health professionals who may not often come into contact with a particular rare condition. During the pandemic, parents described the invaluable information obtained through the disease-specific support group.

Parents described doing whatever necessary to keep their child safe, shielding whenever they thought necessary, even if there was limited official advice to do so.

Parents described having to make difficult decisions about when to stop shielding but they started to get concerned about the negative impact of isolation on the child’s development - whole family well-being had to be balanced with avoiding infection. Information from health professionals, support group and the news led some families to stop shielding and start to return to “normal” life where allowed. For some, virus-related anxiety was over-whelming, resulting in mental health difficulties that even prevented them from working.

Alexia added: "Advice on shielding varied with no apparent logic or consistency, increasing anxiety and leaving many parents unnecessarily isolated and afraid, often suffering significant mental and/or financial harm as a result of shielding. Some even avoided going to hospital, perceiving the risk to their child of doing so to be higher than remaining at home.

"Nor is there any respite for that parent now. We had a very young, breast-fed baby at the start of COVID-19. As her mother, I had to accompany her and have therefore acquired a depth of knowledge that is now all but impossible to pass on. Accordingly, one consequence of the one-parent rule is that COVID-19 will have an ongoing detrimental impact on my work-life balance, and a significant impact on our family income."

What can we improve after the pandemic?

Rarely have medics acknowledged these impacts on us as parents, or made adjustments. This survey offered the opportunity for us, and other parents, to convey our experience. We hope that medical professionals can take the opportunity to reflect upon the impact on real children, and real families, of the decisions they made, and use that knowledge base when determining future models of care.

Alexia sums up the experience of working with specialists to learn from her experiences of the pandemic

The experiences described are likely common to others managing rare diseases and chronic illnesses. They highlight the collateral damage and the opportunities of the pandemic:

Telehealth: There were examples of accessing the right help from the right people at the right time, even in the most extreme of circumstances. Virtual and telephone appointments have the potential to more easily allow families to access specialist services from geographically distant locations.

Infection control: Nationwide lockdowns have led to extremely low levels of respiratory viral infections. This, coupled with the relative sparing of children from severe COVID-19 infection, has given some children with OA/TOF long periods of good health, allowing them to develop and grow.

Co-design: The process of involving parents and children in service redesign will support the best ways to integrate telehealth into care, when face-to-face services are indispensable and what advice families need to make their own decisions when navigating new situations.

Alex Stewart

In providing holistic, patient-centred care, healthcare teams can acknowledge the difficult decisions parents are making, balancing the risks and benefits of isolation as society reopens. We must ensure that surveillance and access to health care is restored effectively to ensure that there is not further damage to vulnerable children, particularly as other respiratory viruses re-emerge.

Alex, Stewart - NIHR Clinical Doctoral Research Fellow, Specialist Speech and Language Therapist and lead researcher

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