Healing Hearts and Minds: thriving with a lifelong heart condition

Activity: Talk or presentationOral presentation

Description

"...Just reading the 'table of contents' loosened something in my chest and made me feel understood...It is beautifully written and you'll notice the care and thought they've put in every word. Their incredible work will probably help many people to understand their struggles, their feelings and themselves" - Good Reads Reviewer

The session will comprise a short book reading (10 mins) followed by an interview led by a psychologist colleague and opened up to the audience. To begin, I will set the scene by reading some short extracts from my new co-authored book ‘Healing Hearts and Minds: A holistic approach to coping well with congenital heart disease (CHD)’ published by Oxford Uni Press in January. Starting with my story, I will share my journey as someone who has depended on experimental cardiac treatment from birth since being fitted with a cardiac pacemaker, in a world first at the time, at 11 days old in 1978. I will share the motivation behind writing the book, co-authored with Tracy Livecchi, LCSW from
Connecticut. We are both ‘dual expert’ therapists with CHD, who met online through our advocacy efforts. Despite the ocean between us, and still having never met in person, we have written the book that we have both been looking for and could not find. Our book is the first to focus on the psychosocial, emotional, and practical challenges in living with a heart condition from birth and we explore our collective story as a medically new population and the potential psychological and emotional impact of living with a lifelong heart condition.
Thanks to medical advances, over the last 50-60 years, survival to adulthood for babies born with a heart condition has improved by 75 percent. The most common birth defect, CHD affects nearly 1 percent of babies, and an estimated 12-million-people globally. Living with a lifelong heart condition can involve exposure to medical procedures, unique life stressors and hidden barriers,
often from infancy. Fifty percent of adults with a CHD experience anxiety, depression, or posttraumatic stress during their life, much higher than the general population, yet access to psychological support is poor.
In our book, we aim to promote hope, connection and to normalise an understandable response to the often-cumulative life challenges we can face from infancy, grounded in the most recent evident base, clinical expertise and lived experience. The book helps to create a plan for healthy coping strategies to support people living with CHD, their families, and healthcare professionals and
provides the empowerment tools necessary to move forward. I will also briefly share my campaign work, in partnership with The Somerville Heart Foundation,
petitioning the Scottish Government for healthcare standards in 2012 and sitting on NHS boards since to raise awareness of CHD among politicians, policy makers and the media to improve the care people can expect from birth and into adulthood.
Period14 Oct 2023
Event titleThe 7th Community Psychology Festival, Seriously Lets Play
Event typeConference
LocationEdinburgh, United KingdomShow on map
Degree of RecognitionInternational

Keywords

  • congenital heart disease
  • community psychology
  • advocacy
  • activism
  • healthcare
  • patient experience