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

  • Original Research
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Journal of Genetic Counseling

Abstract

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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Acknowledgments

The authors would like to thank the young adults with CF who gave up their time to take part in this study.

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Correspondence to Shenaz Ahmed.

Appendix

Appendix

Interview Schedule

Future Aspirations

What sort of aspirations do you have for the future? (What are your aims or goals?)

How important are these aspirations to you and why

How feasible do you think it is to achieve these aspirations and why?

What may affect your ability to achieve these aspirations?

Which aspirations would you prioritise over others and why?

Some people have mentioned how important (XXX) is to them. Is this important to you and why? [touching on areas the participant does not mention, e.g. marriage, university, parenting, career, financial security]

Future Fears

What sort of fears do you have about the future?

How do you think these fears may affect your future aspirations?

Why do you have these fears?

What could reduce these fears?

More specific questions (ask depending on response given to the above questions)

Education

How do you think CF may affect your education?

Career

What aspirations do you have regarding your career?

How do you think CF may impact upon your career?

Psychosexual development

What kind of relationship(s) do you see yourself being in/engaging in, in the future?

How do you think CF may impact on a relationship(s)?

What concerns you most about being in a relationship?

Children

What are your thoughts about having children?

What concerns do you have about having children?

General questions

Are there any other aspirations that you have that you would like to discuss in more detail?

Is there any else that worries you about the future that we have not discussed or that you want to discuss further?

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Higham, L., Ahmed, S. & Ahmed, M. Hoping to Live a “Normal” Life Whilst Living with Unpredictable Health and Fear of Death: Impact of Cystic Fibrosis on Young Adults. J Genet Counsel 22, 374–383 (2013). https://doi.org/10.1007/s10897-012-9555-1

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  • DOI: https://doi.org/10.1007/s10897-012-9555-1

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