Hoping to Live a 'Normal' Life Whilst Living with Unpredictable Health and Fear of Death: Impact of Cystic Fibrosis on Young Adults

Higham, Lorraine; Ahmed, Shenaz; Ahmed, Mushtaq
June 2013
Journal of Genetic Counseling;Jun2013, Vol. 22 Issue 3, p374
Academic Journal
This study aimed to explore the hopes and fears of young adults with cystic fibrosis (CF). Fifteen young adults with CF, aged 18-29, were interviewed about their hopes and fears using a grounded theory approach. Five themes were identified during the analysis: perceptions of living with unpredictable health and fear of death and dying; hopes for normality; hopes for a normal relationship and/or marriage; hopes for having children; and hopes for a normal work life. Participants feared the unpredictable nature of CF and the suffering that they believed they would have to endure due to ill health before premature death. Despite their fears, participants hoped to live a 'normal' life by achieving their hopes of having long-lasting relationships, having children and pursuing a career. The findings highlight the need to help alleviate the fears of young adults with CF and to enable them to plan to achieve their hopes, hence giving them a sense of control over their condition.


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