The power in being together for young adults who have heart disease e the photoshoot experience Robyn Gallagher, RN, PhD a, b, * , Ellen Potter, BSc a , Linda Thomson Mangnall, RN, MN (Hons) a, c , Laila Ladak, RN, MN a , Patrick Gallagher, BLaws, BSocSci e , Lis Neubeck, RN, PhD a, d a Sydney Nursing School and Charles Perkins Centre, University of Sydney, Rm 2210, Lvl 2, Bld 17, Camperdown, NSW 2007, Australia b Faculty of Health, University of Technology, Sydney,15 Broadway, Ultimo, NSW 2007, Australia c Cardiac Telemetry Unit, Sydney Adventist Hospital,185 Fox Valley Rd Wahroonga, NSW 2076, Australia d The George Institute of Global Health, Lvl 3, 50 Bridge St, Sydney, NSW 2000, Australia e School of Public Health, University of Sydney, Australia article info Article history: Received 6 April 2016 Received in revised form 12 February 2017 Accepted 16 February 2017 Available online xxx Keywords: Congenital heart disease Cardiac disease Automatic implantable cardioverter defibrillator (ICD) Young adult Experiences Photoshoot Social support abstract Objectives: The study aimed to determine perceived motivations and benefits of photoshoot participation for young adults who have heart disease. Background: Feeling isolated and different can have lifelong affects on quality of life in heart disease survivors. Photoshoots, where people create a photographic image of themselves, promote positive interpretation of their cardiac illness experience, but participant experiences remain under-investigated. Methods: Young adult heart disease support group members completing a photoshoot were interviewed and data were thematically analyzed. Results: Seven females and one male aged 20e47 years participated. The main theme, People Like Me, emphasized feelings of being different, isolated and uncertain due to the heart disease. Other themes related to support gained from people who were not like them, gaining and providing support to their peers. The photoshoot enabled a highly valued collective feeling. Conclusions: For young adult heart disease survivors, the photoshoot provides a fun, social opportunity to reduce isolation and share experiences. Ó 2017 Elsevier Inc. All rights reserved. Introduction Approximately 85e90% of the children with congenital heart disease (CHD) are expected to survive to adolescence or adult- hood, 1 primarily due to earlier diagnosis and advances in surgical, device and pharmaceutical treatments. Survival is however, accompanied by the need for young people to persist with self- management over a much longer lifespan. CHD survivors must cope with further surgery, treatment sequelae, residual symptoms and uncertainty of outcome as they live increasingly longer lives. 2 Furthermore, new treatments and devices may be developed that meet the clinical needs of their cardiac condition but can create other issues. This is particularly the case for recipients of an automatic implantable cardioverter defibrillator (ICD). 3 The ICD impact includes scarring and deformity from insertion, as well as anxiety related to fear of an arrhythmia event, which may be witnessed by others. 4 The health needs of young adults with acquired heart disease and CHD survivors may then include managing physical limita- tions, clinical symptoms and devices as well as uncertainty about their future. 4,5 Functional status (Atz et al) and exercise capacity is lower than the general population for many patients (Hager et al). Hospital admission for CHD survivors is common, with causes including arrhythmias (34.24%), coronary artery disease (25.85%), heart failure (18.72%), pulmonary hypertension (8.98%) and bacte- rial endocarditis (1.1%). 6 Many struggle to cope and experience depression (23%), mood and anxiety disorders (30%) as adults. 7 In qualitative studies, common issues faced related to employment and pregnancy, 8 child bearing/rearing, mood disturbances, body Abbreviations: congenital heart disease, CHD; automatic implantable car- dioverter defibrillator, ICD. Conflicts of Interest: None. * Corresponding author. Sydney Nursing School and Charles Perkins Centre, University of Sydney, Rm 2210, Lvl 2, Bld 17, Camperdown, NSW 2007, Australia. E-mail address: robyn.gallagher@sydney.edu.au (R. Gallagher). Contents lists available at ScienceDirect Heart & Lung journal homepage: www.heartandlung.org 0147-9563/$ e see front matter Ó 2017 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.hrtlng.2017.02.004 Heart & Lung xxx (2017) 1e6