Five minutes with… Dr Vuokko Wallace

Ella Rhodes hears about oesophageal atresia.

Dr Vuokko Wallace is a clinical psychologist, lecturer and clinical tutor on the University of Bath’s Clinical Psychology doctorate course, who also works as a patient-led researcher exploring the congenital birth defect oesophageal atresia (OA) after being born with the condition herself. OA is a rare congenital condition of the oesophagus and trachea that requires surgical repair in infancy as the upper part of the oesophagus does not connect with the stomach. Dr Wallace has recently published a study in the Journal of Pediatric Nursing on anxiety and depression in parents of children born with OA (known in America as esophageal atresia or EA).

Could you tell me about your experience as a patient-led researcher – what led you down this path?
I have a long-term interest in health psychology and my clinical experience includes working with children with complex health needs and their families. One of the reasons why I am interested in the paediatric health field is my own experience of living with a rare health condition. This has led me to work with a patient charity Tracheo-Oesophageal Fistula Support (TOFS) and to be involved both as a patient member of the charity and a professional member in the charity’s Medical Advisory Group. I am also a member in the International Network of Esophageal Atresia (INoEA) Transition Working Group, which works to develop multidisciplinary treatment guidelines for the transition from paediatric to adult health care for patients born with OA. Again, I am in the group both as a patient member and as a professional clinical psychologist.

It is recognised that living with a rare health condition can impact on people’s mental health. The TOFS charity is committed to engaging with health professionals and supporting research in OA. I realised that I could use my research skills together with my expertise as a patient to help the TOFS charity to develop a better understanding of the psychological needs and mental health of families affected by OA. This has led to my own research focussing on the psychological impact of OA on families and starting a PhD in the University of Eastern Finland. I have also supervised two MSc projects looking at psychological wellbeing and mental health in adults born with OA and I am currently supervising a DClinPsy student research project on people’s experiences of transition from paediatric to adult health care in OA.  

Could you tell me about your study on anxiety and depression in the parents of children born with OA/EA please?
It was an international online survey study, recruiting parents of children born with OA. A total of 240 parents from 17 countries took part in the study. We found that it was common for parents whose children were born with OA to experience both anxiety and depression and that anxiety and depression were more common in younger parents, and in parents who felt they had less support for caring or experienced more stress related to caring, and those who had financial difficulties.

These findings show that parents of children born with OA need more support. Interestingly, we also found that anxiety and depression were more common in parents whose child had OA-related feeding difficulties, which suggests a need for more research on the unique challenges related to the feeding problems and their emotional impact for parents of children born with OA. 

What are your research plans for the future?
I am currently analysing qualitative data from the same survey to investigate the parents’ experience of feeding their young child born with OA, many of whom have swallowing problems. Understandably, swallowing problems can cause anxiety and psychological interventions could potentially be helpful for this. There are currently some research developments for adapting psychological interventions for swallowing problems in adults but very little research on the impact of children’s swallowing problems on families.

To read Wallace’s open access paper see: tinyurl.com/3rj8s6af

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