A family friend once remarked how lucky I am that my parents brought me home from hospital considering not so many years ago I’d have been destined for life in a home for ‘invalid’ children. Whilst this comment came as a shock, leaving no room for complaint, as I’ve got older I’ve recognised that while progress has thankfully been made the world is not quite ready to fully include those of us with congenital medical conditions. Today discrimination can be nuanced, complex and often born from ignorance rather than malice. The shades of oppression can be faint and hard to distinguish from any limitations imposed by the health condition, especially when it is invisible. Yet, lack of inclusion persists in the nuances of everyday life; lack of understanding, failure to accommodate needs, having to fight for adequate care provision, the 9am-5pm (or longer) Monday-Friday working week, lack of representation in films, TV or the media (or sensationalised mis-representation), unnecessary lost chances and compromises. Institutionalised rejection of difference adds to the psychological burden of living with a congenital condition evoking shame, low self-esteem, anxiety and low mood and imposing unnecessary barriers for people who already have to overcome more than most (Morton, 2018; 2019).
'There is no standard normal. Normal is subjective. There are seven billion versions of normal on this planet.'
Matt Haig, Reasons to Stay.
I like to think of myself as a pretty ‘normal’ person (let’s face it none of us are normal) who just happened to be born with a heart condition. Dependant on a cardiac pacemaker and pioneering medical treatment I’ve required surgical intervention approximately every few years since birth. I’ve always taken responsibility for managing my condition studying hard for many years to create a career that allows me to work flexibly. I accept having less choices and make the most of those available. I learnt as a young child that getting frustrated about things you have no control over only robs you of what life can offer (no gym at school but time in the library instilled my love of books, no active play instilled my love of drawing and writing). At least I’ve never been caught in the rat race having to find my own slow, meandering path. But there is a fine line between taking responsibility for managing your condition and accepting unnecessary limitations imposed by inflexible societal expectations to be like everyone else.
'Being able to feel safe with other people is probably the single most important aspect of mental health: safe connections are fundamental to meaningful and satisfying lives'
Bessel van der Kolk.
We need to develop a more sophisticated understanding of health so people living with lifelong medical conditions are better included (one of the motivations behind our photography exhibition Scarred FOR Life). It is simply not the case that people are either sick or well and this false dichotomy lets us all down. We don’t want to be labelled, just understood and given a chance. My health condition is not who I am, but it can affect how I function, more so when I have to push myself to meet societal norms. A growing number of people are living with complex health conditions and often our experiences have honed resilience, determination, empathy and a greater appreciation of life. We have much to contribute given the chance:
A few years ago, at an international cardiology conference, I attended a presentation celebrating the 50th anniversary of Christiaan Barnard performing the first heart transplant. The speaker took us on a journey through the history of cardiology from the development of open-heart surgery, via the heart-bypass machine and pacemakers to sophisticated contemporary surgical interventions including keyhole techniques. At the end, the mostly medical audience stood giving a standing ovation to the pioneers in their field, the shoulders on which they proudly stood, and rightly so.
I remained seated, paralysed with emotion unable to control the tears streaming down my face. While I felt gratitude, I was overwhelmed by the human stories behind the pioneering advances. They included baby Fae, born with hypoplastic left heart syndrome, the recipient of a baboon heart in 1974 who survived for just 21 days post-surgery and a young mum who was left brain damaged after being a human ‘heart-lung machine’ to provide cross-circulation for her young child who underwent early heart surgery in the 1950s. While the mother spent the rest of her life in an asylum her child died. I thought of the friends I've met through congenital cardiology patient groups; survivors on paper faced with a lifetime of navigating the many additional challenges of living with a complex medical condition from ‘cradle to grave’. Survivors can pay a heavy psychological price, often silent lest they seem ungrateful.
Arguably, as someone who has felt the psychological and emotional impact of being dependant on pioneering medical treatment since birth, I'm not objective. But research suggests I’m far from alone. Medical advances over the last century have been remarkably successful with people living longer and surviving with conditions they would have succumbed to in infancy less than half a century ago. Of course, this should be celebrated. Yet, at times medical treatment pushes the boundaries of what is humanely tolerable while research suggests the psychological impact is not being addressed. Medical interventions can be painful, overwhelming and may cause feelings of hopelessness and life threat. The psychosocial impact of being dependant on lifelong medical care is extensive.
Psychologically Informed Care
Yet, this need not be inevitable and psychology has much to offer the medical profession. I attended this conference to present my work on improving psychologically informed medical care. Often, when I present attendees note that while they understand, from a patient perspective, why medical care needs to become more psychologically informed medics and particularly surgeons can't do their job if they focus too much on ‘seeing the person’. This attitude seems to be culturally ingrained and widely accepted. I firmly believe it is a myth that needs to be challenged. Of course professional boundaries are appropriate. There is no need for a surgeon to fully immerse themselves in a child’s (or adults) story as they yield a scalpel to them. But the patient must always be seen, fully as a person, by everyone entrusted with their care. Feeling as safe as possible, respected and validated is fundamental to building resilience, recovery and wellbeing and to prevent medical trauma. Compassionate care and good communication skills are key to this. While this comes naturally to many healthcare professionals we cannot risk leaving it to their individual ‘bedside manner’. Rather psychologically informed care must be embedded from hospital design, ward routines, practices such as clinical holding, patient clothing, to training all medical staff in communication and the provision of psychological support for patients and healthcare professionals alike.
If you want to change the world , start by making people feel safer - Stephen Porges
As medical care marches forward psychological understanding must run to catch up lest we risk leaving survivors unable to make the most of lives, often hard won, that so many have invested in.
Morton, L. (2019) Using Psychologically informed care to improve mental health and wellbeing for people born with a heart condition. Journal of Health Psychology.
Hospital Gowns leave patients feeling open and vulnerable - their time is up, The Conversation, January 2019.
People born with a heart condition are at increased risk of mental health problems, The Conversation, June 2018.
Liza Morton, University of Strathclyde ; Emmanouil Georgiadis, University of Suffolk, and Nicola Cogan, University of Strathclyde
Most of us feel vulnerable when hospitalised, and being told to strip off and put on a pre-worn, revealing, backless gown does nothing to improve matters. Being escorted in this attire, often through public areas of a hospital, pretty much completes the humiliation.
What you wear affects how you feel about yourself. Studies suggest that clothing affects self-esteem, and getting dressed is a process of self-expression. What you wear informs others of your social standing, your ambitions, emotions, motivations and even your employment status.
So what role does clothing play when you find yourself in a vulnerable situation, such as in a hospital, awaiting medical treatment? If you are what you wear, what impact does wearing a backless hospital gown have on how you perceive yourself and how others perceive you?
Do we really need to bare all?
Arguably, there are advantages to hospital gowns. They are functional, allow doctors to gain easy access to the patient to conduct a physical examination. They are also cheap and easy to clean. But researchers in Finland have argued that wearing a hospital gown is often unnecessary and can even be traumatic for some patients. A recent study found that patients are often asked to wear hospital gowns even when there is no medical reason for them to do so.
Although research on this topic is scant, the limited findings so far suggest that the hospital gown is undignified and adds to a sense of disempowerment and vulnerability. And this is made worse by the professional, authoritarian, white coat worn by doctors, which can further increase the power imbalance.
The healthcare hierarchy often plays out in the power dynamic between the patient and medical staff. Despite efforts to empower patients with so-called patient-centered care, the institutionalised acceptance of the hospital gown persists.
It is important to challenge these sorts of cultural norms as dehumanising aspects of care can increase a patient’s risk of further episodes of hospitalisation. Loss of control, loss of the power to make decisions and loss of autonomy may increase a patient’s vulnerability to psychological distress which could have a negative effect on well-being and recovery. As such, patients need to be given a say in hospital clothing, with more humanising and dignified options explored, for example, limiting the use of hospital gowns to when they are needed for medical reasons, allowing patients to wear their own clothes when possible (especially when they are in public areas) and by redesigning gowns so they are less revealing and more dignified.
To better understand these issues we are engaged in a collaborative research project that aims to explore people’s experience of wearing hospital gowns. By drawing on their experiences, we hope to better understand how hospital gowns affect their identity, well-being and recovery, with the aim of influencing change to policy and practice in hospitals.
Clothes serve more than function. Rather than having to bare all, let a little dignity, choice and humility be at the forefront of our thinking about hospital clothing.
Liza Morton, Counselling Psychologist, University of Strathclyde ; Emmanouil Georgiadis, Senior Lecturer in Sport and Exercise Psychology, University of Suffolk, and Nicola Cogan, Lecturer in Psychology, University of Strathclyde
Much has been written about the symbolic function of the white coat; its implications of purity; its representation of authority and professionalism and its role in consolidating medical hierarchy. By contract the medical literature has paid almost no attention to the patient gown" Wellberry & Chan, 2014.
To better understand the impact of hospital clothing on wellbeing I am leading a collaborative study. We are focusing on people with a congenital heart condition because this is a population who often require medical treatment throughout their lives.
If you were born with a heart condition we are interested in hearing of your experience of hospital clothing and its impact on your feelings, identity and the impact of design on perceptions of wellness. We plan to use the findings from the study to enhance the patient experience and to inform the development of hospital clothing to positively impact on wellness and mobility.
Where & When?
This study is run in collaboration between researchers at Strathclyde University, The University of Suffolk’s Congenital Heart Research Centre and Inga Wellbeing. The study will be run in both Strathclyde University, Glasgow and at the University of Suffolk. The study will be conducted in September/October in Glasgow and Suffolk.
What does the study involve?
The study involves taking part in a 90 minute focus group in which you will be asked to discuss you experience of hospital clothing, its impact on your patient journey as well as its impact on your emotions and identity. You will be required to attend a focus group at either Strathclyde University in Glasgow or at the University of Suffolk in Ipswich (depending on where you live). You will be in a group with up to 5 other participants who have had experience of a congenital heart condition.
In the second part of the focus group you will be provided with an item of patient wear clothing from INGA Wellbeing. You will be asked to discuss how the garment: the way it feels, the finish, the cut, the look and the way it makes you feel.
Focus groups will be led by a member of the research team for this study. Participants will be asked to fill out a consent form highlighting their willingness to participate in a focus group and have that focus group audio recorded. The recordings will be anonymized and kept in locked storage.
To take part in the study you need to be:
What are the potential risks to you in taking part?
Some questions may be about the way in which you view yourself and your experience of having a congenital heart condition. Should you feel ongoing discomfort at any time, you may elect to remove yourself from the focus group for a few moments, or you can decide to stop participating entirely. In the event that emotional distress should continue, you can contact The Somerville Foundation's Mental Health Helpline run by Anne Crump, Mental Health Support Worker. Anne will know about the details of the study.
What happens to the information in the project?
Only the team working on the research project has access to the audio recordings. The information will be stored on electronic files and password protected. The interviews will be audio recorded and transcribed. You will be able to request a copy of the transcription should you wish to do so. Copies of the transcription and audio will be kept up until the research has been published. Your participation in this research will be kept in the utmost confidence. Short extracts from the interviews will be used in the final report but your identity will be protected by not including your name or any information that would make you identifiable.
Participants will also receive a small gift of a canvas tote bag and a discount for INGA Wellbeing for taking part in the study and refreshments will be provided.
Both the University of Strathclyde and the University of Suffolk are registered with the Information Commissioner’s Office who implements the Data Protection Law, GDPR, 2018. All personal data on participants will be processed in accordance with the provisions of the Data Protection Law, GDPR, 2018.
What happens next?
If you are interested in taking part in this study please contact the lead researcher nearest you by email.
Lead Researcher contact details Scotland:
Dr Liza Morton, Chartered Counselling Psychologist / Teaching Fellow, School of Psychological Sciences and Health Graham Hills Building University of Strathclyde, 40 George St, Glasgow G1 1QE
Lead Researcher contact details Suffolk:
Dr Manos Georgiadis, Senior Lecturer in Sport & Exercise Psychology, University of Suffolk, School of Science, Technology and Engineering, Waterfront Building, Suffolk, IP4 1QJ
This investigation was granted ethical approval by the University of Strathclyde Ethics Committee and The University of Suffolk’s Ethics Committee.
If you have any questions/concerns, during or after the investigation, or wish to contact an independent person to whom any questions may be directed or further information may be sought from, please contact:
Secretary to the University Ethics Committee
Research & Knowledge Exchange Services
University of Strathclyde
Graham Hills Building
50 George Street
Telephone: 0141 548 3707
I was really looking forward to attending the annual conference of The British Psychological Society’s Counselling Psychology Division last weekend in Newcastle, both to meet up with other psychologists and present my work. Unfortunately, as often happens when you are living with a medical condition, life had other ideas! A few weeks before the conference I found out that my pacemaker & leads are faulty & need to be replaced - soon! Prior to being hospitalised (where I am writing this now, on telemetry, awaiting surgery) I had the opportunity to pre-record my presentation enabling me to present (virtually) at the conference. Since it’s been recorded I thought I may as well use the opportunity to share it with you here too.
The presentation draws on personal experience & contemporary psychological theories of attachment, trauma & neuropsychology. I hope to contribute to improved awareness & understanding about this hidden population while supporting improved care, feelings of connectedness & safety. Of course, given the common ground, much of this work is applicable to other life long medical conditions.
I hope it is of interest to people, like me, who are navigating the complexities of life with a medical condition & those who share this journey with us, as family, friends, our medical team & wider society.
Liza Morton, Strathclyde University
One in every 125 babies is born with a heart condition – but thanks to modern medicine more infants are surviving than ever before. In the developed world, 90% will now live into adulthood, compared with just 20% in the 1940s. However, there is no cure for these conditions and the person needs lifelong medical monitoring.
Congenital heart disease (CHD) doesn’t just affect the body – it affects the mind, too. A growing body of evidence shows that people with CHD are more likely to suffer from mental health problems, such as anxiety, depression and post-traumatic stress disorder.
To date, this psychological impact has been understood as a consequence of the additional stressors that living with a serious lifelong medical condition can bring, such as missed schooling, spending lots of time in hospital (from childhood), and having to undergo frequent surgery. I know from personal experience how challenging this journey can be.
But a relatively new understanding about how our bodies regulate feelings of safety, risk and social connection may help to make sense – from a biological perspective – of this increased risk of mental health problems.
Flight, fight or freeze
Polyvagal theory, which draws on the latest developments in neuroscience, psychology and biology, proposes that one of the body’s most important jobs is to avoid threats in order to keep us safe. To this end, the body flits between three different “systems”, depending on how safe we feel. When all is well, we stay in our social engagement system. This is our most evolved and healthy way of being. In this mode, we feel safe and sociable, and we are best placed to grow, develop, learn, recover and heal.
When we feel under threat, the fight or flight system is activated. The nervous system is called to action and we feel compelled to either fight or run to safety. This is felt as anxiety. However, if we feel like our life is at risk, we switch to our most primitive system by “playing dead”. Physiologically, this system is deactivating – we become immobilised, feel numb or dissociate. Afterwards, we may struggle to recall what happened to us because the parts of our brain that make sense of events and store memories are shut down.
To feel healthy we need to be able to assess and adapt to our environment when we are both safe and unsafe. How well we can do this is partially shaped during our early years. If we experience a lot of trauma when we are growing up, we may be more likely to interpret situations as threatening. This affects how we manage stress. As social animals, it can also influence our relationships, as we need to be in the social engagement system, most of the time, for social connection.
Since the heart is central to our nervous system, any heart problems may affect how efficiently our bodies respond to threats. This could, in part, explain why people with congenital heart disease are at greater risk of anxiety, depression and post-traumatic stress disorder. This risk is further increased by exposure to potentially traumatic early life events, such as surgery and being separated from parents due to periods of hospitalisation.
This has important implications, from cradle to grave, for people living with a heart condition. This understanding could better inform medical care by focusing on establishing feelings of safety, for example, by promoting the importance of the parent’s presence, touch and soothing voice to the child while supporting the psychological health of the child’s family.
Teaching medical staff how to manage distress, how to communicate compassionately and the importance of encouraging the presence of loved ones would also be beneficial. This understanding also suggests possible interventions, specifically touch, play and music therapies for children.
For adults, a focus on safety and emotional regulation may be more beneficial than talk therapy. This seems particularly important for a population who may have grown up during a time when parents were discouraged from visiting their children in hospital and who may have endured illness and difficult medical experiences without the soothing presence of their parent. People living with this condition might also benefit from mindfulness, meditation and breathing techniques to help them feel safe.
We should also look to improve awareness and understanding about this hidden population – doing so would support social inclusion and feelings of connectedness and safety within wider society.
Back in 2012 The Somerville Foundation appointed me as their (voluntary) Campaign Manager in Scotland after seeing me present evidence to The Scottish Public Petitions Committee at the Scottish Parliament. I had submitted a petition to the Scottish Government to ask for Healthcare Standards and improved care provision for adults born with a heart condition following various critical challenges with my own adult care and after reaching out to others to find I was far from alone. Congenital Heart Disease (CHD) is the most common birth defect, affecting 1 in 125 babies. 90% will now survive into adulthood compared with just 20% in the 1940s. We can thank advances in modern medicine for this growing population. This is a heterogeneous group including people with a wide variety of different cardiac conditions of varying complexity. Currently, there is no cure for more complex CHD with treatment and lifelong monitoring required. For today’s adult survivors, treatment has often been experimental while their care provision has all to often not evolved in time to meet their needs and many patients are lost to follow-up. There is an estimated 16,500 such adults in Scotland, although worryingly around half are lost to the system. At least a further 135 patients each year make the transition from paediatric services in Glasgow (NHS National Waiting Times Centre, 2012).
You don’t have to be a fashionista to know that what you wear impacts how you feel about yourself. Yet, fashion is unrepresented in contemporary psychology. Of the studies that have been done we know that clothing impacts self-esteem (e.g. Creekmore, 1974). Getting dressed is a process of self actualisation in which the individual strives to achieve fusion between the self and the outfit. Yet, hospital clothing can be the opposite, a distinctly failed fusion of self and dress (e.g. Topo and Iltanen- Tähkävuori, 2010). The instruction to wear a backless gown for medical interventions (e.g. for x-rays or theatre) may add to a sense of disempowerment. We know from psychological literature that such loss of control and autonomy can increase vulnerability to post traumatic stress, anxiety and depression. The clothing worn by the attendant medical provider may further any power imbalance between patient-medical professionals which is inconsistent with the ‘Person Centered’ approach advocated by NHS policy to safeguard patients from depersonalised care (Morton, in Press, 2015a, 2015b, 2012). Hospital clothing can also impact on physical health. The recent #EndPJparalysis social media campaign led by NHS-trained nurse, Brian Dolan focused on encouraging patients in hospitals, where possible, to stop wearing their pyjamas or hospital gown based on the idea that wearing pyjamas can reinforce the ‘sick role’ and prevent a speedier recovery.
This book (left) is now available to pre-order (click the image) & it will be published in June (USA) & July (UK). In my chapter, I explore how The Polyvagal Theory can provide an embodied understanding of living with a heart condition from birth.
The Polyvagal Theory & Neuroception of Safety
Neuroscientist Professor Stephen Porges’ Poly Vagal Theory (PVT) offers an embodied understanding of our nervous system, senses, emotions, social self & behaviours. He proposes that one of the most fundamental jobs of our body’s nervous system is to keep us safe, a task he calls Neuroception. To this end, three systems have evolved over time; each controlled by a different branch of the vagus system (hence, The Polyvagal Theory). This enables us to self regulate & respond to threat (including social threats like rejection or physical threats).
"Your chapter provides new information for those of us, who have studied the bidirectionality of brain and body. As a scientist, I have frequently talked about the bidirectionality between heart and brain and between visceral states and mental function. However, your chapter truly provides a personal narrative of these concepts that has been missing from the scientific literature and specifically from Polyvagal Theory." Prof Stephen Porges, Neuroscientist.