Heart disease research marks Patient Experience Week

A Glasgow Caledonian University (GCU) psychologist has had her research paper exploring psychological trauma of adults with congenital heart disease (CHD) during COVID-19 published in a peer-reviewed journal, which coincides with Patient Experience Week (April 25-29).

Applied Psychology lecturer Dr Liza Morton, who suffers from a lifelong heart condition, is lead author of the paper ‘An exploration of psychological trauma and positive adaptation in adults with congenital heart disease during the COVID-19 pandemic’ published in the Patient Experience Journal.

The research was in collaboration with Strathclyde University Senior Lecturer Dr Nicola Cogan, and students Calum Calderwood and Claire Murphy, Dr Jacek Kolacz and Evan Nix from Indiana University, and partner charity The Somerville Heart Foundation.

Dr Morton is a researcher in the School of Health Sciences’ Research Centre for Health (ReaCH) - Improving Health and Wellbeing for All. Her research makes a direct and significant contribution to Sustainable Development Goal 3 – Good Health and Wellbeing - and Goal 10 – Reduced Inequalities – issued by United Nations in 2015 as a blueprint for peace and prosperity across the planet, and is fitting with GCU's University for the Common Good mission.

She said: “I am delighted this study has been published in the Patient Experience Journal and it fits perfectly with Patient Experience Week which aims to provide a voice for patients about their healthcare experiences.  Those of us living with an underlying health condition (UHC) have been disproportionately affected by the COVID-19 pandemic, with many of us having to shield.

“As someone with a lifelong heart condition myself, who was in the shielding group, I am passionate about making sure the experience of those of us with UHCs is heard to improve healthcare provision, social inclusion and mental health.”

One of the key findings in the study suggests that the CHD population are at increased risk of post-traumatic stress disorder (PTSD) which may be exacerbated by the COVID-19 pandemic.

Dr Morton, a Chartered and Registered Counselling Psychologist, explained: “The growing population of adults with CHD often have lifelong experience of dealing with potentially traumatic health crises and medical uncertainty whilst facing increased vulnerability to PTSD.

“The COVID-19 pandemic presents additional challenges for this population including increased risk of health complications, shielding and strict social distancing, changes to medical care provision and social stigma.

“Despite these challenges, adults with CHD have the potential to also experience positive changes, yet little is known as to what helps cultivate positive adaptation and post-traumatic growth (PTG) within this context.

“This study was a cross-sectional, anonymous, online study exploring psychosocial measures of traumatic experiences as well as protective factors that mitigate the risks to the mental health of adults with CHD during the pandemic.

“The survey was online between May and August 2020 involving 236 participants in the UK who had been identified as extremely clinically vulnerable and were asked to socially ‘shield’ by staying at home by the government.”

Over half of participants (55%) reported that they had experienced changes to their usual cardiac care due to the pandemic, 86% reported the pandemic had made them more aware of their condition while 68% reported feeling that their CHD made the current COVID-19 pandemic more difficult for them. However, 30% of participants met the cut-off for a screening measure for PTSD.

Dr Morton added: “Consistent with a growing body of research, these findings suggest the CHD population are at increased risk of PTSD which may be exacerbated by the COVID-19 pandemic.”

On a positive note, 57% reported feeling that living with CHD helped them deal with the pandemic, while the study also found that “positive adaptation may promote post traumatic growth, specifically emotional regulation is associated with post-traumatic growth”.

Participants detailed a variety of anxieties and concerns about the impact of COVID-19 in relation to their CHD and beyond including concerns about infection, disruption and delays to healthcare provision.

Some of the comments include “delaying my surgery has caused me distress”, "it’s all very distressing and I wish GP or cardiologist had been in touch with specific advice".

Others said “my mental health feels worse now and I feel we have all been forgotten about”, "it’s (COVID-19) shut me off from my usual support networks which in turn has made me feel alone” and "it feels like people with underlying health conditions are to blame for their increased risk, like the condition is their fault and like they are unimportant in society."

Dr Morton concluded: “We recommend a growth-focused, psychologically and trauma-informed approach to medicine and public health, recognising the importance of supporting mental health and promoting living well with CHD during the COVID-19 pandemic and beyond.”