It's part of who I am: The impact of congenital heart disease on adult identity and life experience

Steiner, Jill M.; Dhami, Alysha; Brown, Crystal; Stout, Karen; Curtis, J. Randall; Engelberg, Ruth A.; Kirkpatrick, James N.

doi:10.1016/j.ijcchd.2021.100146

Cited by 7 publications

(3 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This suggests that despite experiencing rejection and enrichment, these individuals feel increasingly overwhelmed by their illness. As expected, individuals with a complex heart defect were strongly represented in this class, as they experience a greater impact of their illness on their functioning and daily life (Steiner et al, 2021). Combined, our findings seem to indicate that enrichment can coexist with acceptance as well as with rejection and engulfment.…”

Section: The Development Of Illness Identity Over Timesupporting

confidence: 77%

Illness identity and well-being in congenital heart disease: Directionality of effects and developmental trajectories.

Campens,

Van Laere,

Vanderhaegen

et al. 2024

Health Psychology

View full text Add to dashboard Cite

Objective: This longitudinal study explores the relationship between illness identity and well-being in emerging adults with congenital heart disease (CHD), aiming to understand the factors contributing to well-being in individuals with CHD. Method: Dutch-speaking emerging adults with CHD (N = 254, age range = 24–28 years) participated in a three-wave study, which is part of the I-DETACH 2 project. Cross-lagged analyses examined the directionality of effects between illness identity and well-being. Multivariate latent class growth analysis identified developmental trajectory classes of illness identity. Multigroup latent growth curve modeling investigated differences in the development of well-being among these classes. Results: Bidirectional associations were uncovered between illness identity and well-being. For instance, acceptance predicted better quality of life and less depressive symptoms over time. Three trajectory classes of illness identity were identified: high (i.e., as compared to the sample mean) acceptance and enrichment with low rejection and engulfment (Class 1), high rejection with low levels in the other dimensions (Class 2), and high rejection and engulfment along with high enrichment and low acceptance (Class 3). Individuals in Class 3 experienced the worse well-being. In addition, individuals with complex heart defects were strongly represented in this class. Conclusions: This study demonstrates the significance of illness identity in understanding individual differences in well-being among emerging adults with CHD. Additionally, this study provided valuable insight in the development of illness identity and its longitudinal relationship with well-being.

show abstract

Section: The Development Of Illness Identity Over Timesupporting

confidence: 77%

Illness identity and well-being in congenital heart disease: Directionality of effects and developmental trajectories.

Campens,

Van Laere,

Vanderhaegen

et al. 2024

Health Psychology

View full text Add to dashboard Cite

show abstract

“…In our study, scores were higher in patients with moderate as compared to complex lesions, and we wonder whether this reflects the temporality of living with ACHD. For example, a patient with stable complex ACHD may reflect restrictions during their early or teenage lives when they had less control and were ill-equipped to cope with their illness and the resulting impacts on their adult 25 or illness identity. 26 It is also possible that demographic differences between those with moderate and complex ACHD influenced these findings: those with moderate ACHD were older and more likely to be married or partnered.…”

Section: Discussionmentioning

confidence: 99%

Key Psychosocial Health Outcomes and Association With Resilience Among Patients With Adult Congenital Heart Disease

Steiner,

Nassans,

Brumback

et al. 2024

JACC: Advances

View full text Add to dashboard Cite

“…Interviews of patients with ACHD have shown that their illness has affected their identity, created emotional distress, and influenced their adult decision-making with greater effects on those with the most complex lesions. 75 From the psychological effects of the prolonged experience of chronic illness from early childhood to the financial stress of debilitating illness in early adulthood, patients with complex ACHD have specific challenges affecting their quality of life. Some ACHD experts have recommended involving specialist palliative care at 18 years of age to develop longitudinal goals of care, including making decisions about career, family planning, and end-of-life preferences.…”

Section: Palliative Care For Quality Of Life In Adult Congenital Hear...mentioning

confidence: 99%

Expanding the Paradigm for Cardiovascular Palliative Care

Godfrey,

Kirkpatrick,

Kramer

et al. 2023

Circulation

Self Cite

View full text Add to dashboard Cite

Cardiovascular disease (CVD) is the leading cause of death worldwide. Despite medical advances, patients with CVD experience high morbidity and mortality rates, affecting their quality of life and death. Among CVD conditions, palliative care has been studied mostly in patients with heart failure, where palliative care interventions have been associated with improvements in patient-centered outcomes, including quality of life, end-of-life care, and health care use. Although palliative care is now incorporated into the American Heart Association/American College of Cardiology/Heart Failure Society of America guidelines for heart failure, the role of palliative care for non–heart failure CVD remains uncertain. Across all causes of CVD, palliative care can play an important role in all domains of CVD care from initial diagnosis to terminal care. In addition to general cardiovascular palliative care practices applicable to all areas, disease-specific palliative care needs may warrant individualized palliative care models. In this review, we discuss the role of cardiovascular palliative care for ischemic heart disease, valvular disease, arrhythmias, peripheral artery disease, and adult congenital heart disease. Although there are multiple barriers to cardiovascular palliative care, we recommend a framework for studying and developing cardiovascular palliative care models to improve patient-centered goal-concordant care for this underserved patient population.

show abstract

It's part of who I am: The impact of congenital heart disease on adult identity and life experience

Cited by 7 publications

References 24 publications

Illness identity and well-being in congenital heart disease: Directionality of effects and developmental trajectories.

Illness identity and well-being in congenital heart disease: Directionality of effects and developmental trajectories.

Key Psychosocial Health Outcomes and Association With Resilience Among Patients With Adult Congenital Heart Disease

Expanding the Paradigm for Cardiovascular Palliative Care

Contact Info

Product

Resources

About