A Nordic study of adolescents experiences of living with a parent having heart disease

Abstract

Abstract Funding Acknowledgements Type of funding sources: Private company. Main funding source(s): Novo Nordic Foundation Background An estimated 35% of heart disease occurs in individuals between 35 to 54 years of age, which is the prime child-bearing and parenting years. Even though heart disease often has a good prognosis, its treatment and symptoms can cause changes in everyday life within the family. Existing research shows that adolescents who live with a parent having serious illness are to a higher degree at risk of psychosocial, behavioural, and emotional challenges than peers if they are not accommodated. To our knowledge, limited research exists about adolescents´ experiences of living with parental heart disease. Purpose To explore how adolescents experience having a parent with heart disease. Methods This qualitative study is performed with semi-structured individual interviews guided by relevant theory. Interviews of 33 adolescents from 13 to 19 years old, who either had a mother or father with one of the diagnoses: ischemic heart disease, arrhythmia, heart failure, or cardiac arrest were conducted. Their parent had been ill for at least six months and up to 5 years and the study was carried out in Denmark, Norway, and Sweden from 2019 until 2022. The analysis was inspired by Reflexive methodology. Results The findings of the present study highlighted three central themes: Response to parental heart disease, Strategies in a changed life situation, and Altered relationships. While the heart was experienced as the most vital organ for adolescent’s feelings of fear of losing their parent both physically and mentally appeared and led to a range of different reactions. Adolescents pursued normality as a strategy to overcome their new life situation with parental heart disease where they prioritized a safe space to seek away from the disruption. Adolescents took adult responsibility at home, and through the process, enhanced maturity and new practical skills were developed. Conclusion(s) This study has contributed to new knowledge in regard to how parental heart disease changes everyday life as experienced by their young relatives. In order to reconstruct the adolescent’s new lives and cope with parental heart disease the adolescent’s pursued normality, which is a significant coping strategy that must be taken into account in relation to supporting them. To expand our knowledge more research is needed to explore what adolescents’ needs from healthcare professionals are.