» Articles » PMID: 23239475

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

Overview
Journal J Genet Couns
Publisher Wiley
Specialty Genetics
Date 2012 Dec 15
PMID 23239475
Citations 9
Authors
Affiliations
Soon will be listed here.
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.

Citing Articles

'Struggling to participate in everyday life': emerging adults' experiences of living with long-term health challenges.

Rasalingam A, Brekke I, Stenberg U, Haaland-Overby M, Helseth S BMC Public Health. 2023; 23(1):1368.

PMID: 37460986 PMC: 10353226. DOI: 10.1186/s12889-023-16291-6.


Lived experiences of individuals with cystic fibrosis on CFTR-modulators.

Page A, Goldenberg A, Matthews A BMC Pulm Med. 2022; 22(1):42.

PMID: 35062937 PMC: 8781590. DOI: 10.1186/s12890-022-01825-2.


The impact of COVID-19 shielding on the wellbeing, mental health and treatment adherence of adults with cystic fibrosis.

Westcott K, Wilkins F, Chancellor A, Anderson A, Doe S, Echevarria C Future Healthc J. 2021; 8(1):e47-e49.

PMID: 33791475 PMC: 8004337. DOI: 10.7861/fhj.2020-0205.


Genetic literacy and psychological adaptation in adolescents with genetic diseases.

Ortega J, Vazquez N, Arberas C Rev Fac Cien Med Univ Nac Cordoba. 2021; 78(1):3-8.

PMID: 33787032 PMC: 8713378. DOI: 10.31053/1853.0605.v78.n1.25498.


An Exploration Into Knowledge, Attitudes, and Beliefs Towards Risky Health Behaviours in a Paediatric Cystic Fibrosis Population.

Keyte R, Egan H, Mantzios M Clin Med Insights Circ Respir Pulm Med. 2019; 13:1179548419849427.

PMID: 31210738 PMC: 6545634. DOI: 10.1177/1179548419849427.


References
1.
Gjengedal E, Rustoen T, Wahl A, Hanesta B . Growing up and living with cystic fibrosis: everyday life and encounters with the health care and social services--a qualitative study. ANS Adv Nurs Sci. 2003; 26(2):149-59. DOI: 10.1097/00012272-200304000-00007. View

2.
Willis E, Miller R, Wyn J . Gendered embodiment and survival for young people with cystic fibrosis. Soc Sci Med. 2001; 53(9):1163-74. DOI: 10.1016/s0277-9536(00)00416-0. View

3.
Badlan K . Young people living with cystic fibrosis: an insight into their subjective experience. Health Soc Care Community. 2006; 14(3):264-70. DOI: 10.1111/j.1365-2524.2006.00619.x. View

4.
Lyon M, Kuehl K, McCarter R . Transition to adulthood in congenital heart disease: missed adolescent milestones. J Adolesc Health. 2006; 39(1):121-4. DOI: 10.1016/j.jadohealth.2005.09.008. View

5.
Wolfenden L, Schechter M . Genetic and non-genetic determinants of outcomes in cystic fibrosis. Paediatr Respir Rev. 2009; 10(1):32-6. DOI: 10.1016/j.prrv.2008.04.002. View