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Title: Parental experiences of the Berlin Heart as a bridge to cardiac transplant
Author: Clisby, Holly
ISNI:       0000 0004 8499 0522
Awarding Body: Royal Holloway, University of London
Current Institution: Royal Holloway, University of London
Date of Award: 2016
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Due to advances in the identification, treatment and monitoring of end-stage heart failure in children, survival rates are increasing. Consequently, devices such as the Berlin Heart, a mechanical circulatory support device, are being used to support children in cardiac failure whilst they wait for a suitable donor heart. Although the medical benefits of these devices over other forms of mechanical support have been established, studies have neglected the psychological impact of this experience on parents and their children. This study aimed to explore parents' experiences of supporting a child on a Berlin Heart as a bridge to cardiac transplant. Secondly, this study aimed to understand the impact these experiences had on parental quality of life, parental adjustment to their child's condition and family dynamics. Semi-structured interviews were completed with eight parents of children who were supported on the Berlin Heart as a bridge to transplant. Interpretive Phenomenological Analysis (Smith, Flowers & Larkin, 2009) was used to identify themes and connections across parents' accounts. Three superordinate themes were identified: 'Loss of Control on the Berlin Heart', 'Life in the Berlin Heart Bubble' and 'Transitioning Forward'. The findings highlight the complex process of decision-making for these parents and difficulties managing distress in a restricted and isolated environment. Loss of control was a defining feature of parents' experience. The importance of their support system in transitioning forward to a more positive and hopeful position with their child, was also emphasised. Impact on parental quality of life, adjustment to their child's condition and family dynamics throughout the experience are discussed. Several research and clinical implications are recommended for healthcare professionals working with this unique client group.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psy.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available