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To examine the relationship between frailty status, family functioning, and quality of life in adolescents with congenital heart disease (CHD).
Frailty is a rarely assessed health outcome in adolescents. Despite advances in paediatric CHD treatment, potential complications may cause frailty, affecting family dynamics and quality of life. Family support and early screening are vital to managing the symptoms of frailty associated with CHD.
Cross-sectional study.
During the period from July 2022 to August 2023, 302 adolescents aged between 12 and 18 who had received a diagnosis of CHD were assessed for frailty using criteria that included slowness, weakness, exhaustion, shrinkage/body composition, and diminished physical activity. Data were collected from assessments of grip strength, the 6-min walk test, body mass index, triceps skinfold thickness, the PedsQL Multidimensional Fatigue Scale Adolescent, Physical Activity Questionnaire for Adolescents, the Family Adaptability, Partnership, Growth, Affection, and Resolve scale, and the PedsQL 3.0 Cardiac Module. All data were subjected to multiple linear regression analysis.
Frailty, as measured by exhaustion and diminished physical activity, was significantly more prevalent in adolescents with severe symptoms of CHD than in those without symptoms. Of the participants, 56.6% were prefrail, and 8.3% were frail. Adolescents who were frail and lived in dysfunctional families experienced a worse quality of life than participants with robust health and those with positive family functioning.
Frailty and family dysfunction negatively affect the quality of life in adolescents with CHD.
Developing programmes that detect frailty early and improve family functioning for adolescents with CHD is critical. Establishing guidelines for identifying frailty in this population can minimise adverse health effects and enhance familial relationships.
No patient or public involvement.
To explore how adults with congenital heart disease (ACHD) experience and express grit in the workplace.
Qualitative study using Husserl's descriptive phenomenology.
Between March 2022 and June 2023, semi-structured interviews were administered to 18 ACHD recruited from two medical centre outpatient departments. The collected data underwent analysis utilising Colaizzi's 7-step analysis method, coupled with Lincoln and Guba's framework, to ensure credibility and trustworthiness.
The analysis revealed five prominent themes derived from the data: (a) career choices amid constraints; (b) adjustments to one's work environment for reasons of fatigue; (c) crises in the workplace arising from exceeding one's physical limits; (d) supportive networks for better health and job stability; (e) resilience at work for balance and fulfilment in life.
Grit significantly influences life satisfaction and job performance among adults with congenital heart disease, highlighting its profound impact on their experiences. Patients exhibit perseverance in job pursuits, adapt work methods to manage physical fatigue, confront challenges during work crises, value family and societal support and aim for self-satisfaction. These findings highlight the impact of grit and mental health on ACHD's lives and work, providing insights for better psychological support and interventions.
This study clarifies the need for healthcare professionals to incorporate workplace grit training and assessment into ACHD care.
Recognising grit as a key factor in ACHD patients' lives informs holistic care, workplace inclusivity and policies that enhance their long-term well-being.
This study was performed in accordance with the COREQ guidelines.
No patient or public involvement.
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