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Working with Emerging Adults who have Cystic Fibrosis: Information for Practitioners

By Caitie Napodi 

Research evidence suggests that career development does not progress in a typical way for emerging adults who have cystic fibrosis (CF), a genetic disease affecting mainly the lungs and the digestive system (Cystic Fibrosis Foundation, 2013; Isralsky, Goldberg, & Shwachman, 1979; Maslow, Haydon, McRee, Ford, & Halpern, 2011). The life expectancy among those living with CF in Canada has grown, with the median age of survival increasing from 28.4 in 1987 to 49.7 in 2012 (Cystic Fibrosis Foundation, 2012). This means that individuals with CF will now be able to pursue longer-term career paths, as medical advances have prolonged their lives. Therefore, it is beneficial for practitioners to become aware of the characteristics and needs of emerging adults with CF, and how to work with this population.

Characteristics and Needs

Since CF is a potentially fatal disease, youth with CF may be uncertain and apprehensive about the future (Boyle, di Sant’Agnese, Sack, Millican, & Kulczycki, 1976; Goldberg, Isralsky, & Shwachman, 1979; Mungle, Burker, Yankaskas, 2002). Consequently, this can prevent or discourage adolescents and emerging adults with CF to make choices regarding their education and career (Mungle et al., 2002). For many adults, having CF can influence the type of work they pursue (Hogg, Braithwaite, Bailey, Kotsimbos, & Wilson, 2007; Palmer & Boisen, 2002; Targett et al., 2014). For example, jobs requiring physical labour may become too demanding if lung function decreases. Employment status may also be affected by frequency of hospitalizations, mental health, education level, and disease severity (Burker, Sedway, & Carone, 2004; Laborde-Castérot et al., 2012; Taylor-Robinson, Smyth, Diggle, & Whitehead, 2013). The literature suggests, that few individuals with CF have an opportunity to receive formal career counselling or discuss career options with a physician (Demars, Uluer, & Sawicki, 2011; Hogg et al., 2007; Gillen, Lallas, Brown, Yelin, & Blanc, 1995). Despite this lack of support, adolescents and emerging adults with CF tend to have strong working values, as well as high hopes for a successful career (Goldberg et al., 1979; Higham, Ahmed, & Ahmed, 2013). It is apparent that emerging adults with CF could benefit from support and counselling from career practitioners.

Recommendations

A top priority for practitioners working with this population is to have a thorough knowledge about CF (Mungle et al., 2002). This knowledge can facilitate realistic career choices that are in line with the restrictions and the limitations of the disease (Higham et al., 2013; Isralsky et al., 1979; Mungle et al., 2002). Acquiring occupational information is a prerequisite for work and is essential for successful employment; therefore, it may also be beneficial to help emerging adults with CF independently explore potential fields of work, due to their lack of exposure to formal career counselling (Isralsky et al., 1979; Mungle et al., 2002). Because maintaining health is necessary to go to school or work, it is important to encourage and teach emerging adults with CF healthy behaviours, as well as connect them to the appropriate health care providers and community services (Williams, Burker, Kazukauskas, 2011). In addition, it may be helpful to assist emerging adults with CF in developing disease mastery, self-efficacy and assertiveness skills, in order to obtain educational and employment success (Hogg et al., 2007; Targett et al., 2014; Williams et al., 2011).

Conclusion

Emerging adults with CF are at risk for poorer educational and vocational outcomes.  However, career practitioners can support the educational and vocational development of emerging adults with CF by understanding their characteristics and needs, and by being aware of the appropriate interventions for working with this population.

Caitie Napodi, BA, is currently completing her Masters of Education degree with a specialization in counselling psychology at the University of New Brunswick. Her research interests include emerging adults with chronic illnesses with a specific focus on emerging adults with cystic fibrosis and the career development of this population.

 

References

Boyle, I. R., di Sant’Agnese, P. A., Sack, S., Millican, F., & Kulczycki, L. L. (1976). Emotional adjustment of adolescents and young adults with cystic fibrosis. The Journal of Pediatrics, 88(2), 318-326.

Burker, E. J., Sedway, J., & Carone, S. (2004). Psychological and educational factors: Better predictors of work status than FEV1 in adults with cystic fibrosis. Pediatric Pulmonology, 38(5), 413-418.

Cystic Fibrosis Canada. (2012). The Canadian cystic fibrosis registry.  Retrieved from http://www.cysticfibrosis.ca/news/publications

Cystic Fibrosis Canada. (2013). Annual report. Retrieved from http://www.cysticfibrosis.ca/news/publications

Demars, N., Uluer, A., & Sawicki, G. S. (2011). Employment experiences among adolescents and young adults with cystic fibrosis. Disability and Rehabilitation, 33(11), 922-926.

Gillen, M., Lallas, D., Brown, C., Yelin, E., & Blanc, P. (1995). Work disability in adults with cystic fibrosis. American Journal of Respiratory and Critical Care Medicine, 152(1), 153-156.

Goldberg, R. T., Isralsky, M., & Shwachman, H. (1979). Vocational development and adjustment of adolescents with cystic fibrosis. Archives of Physical Medicine and Rehabilitation, 60(8), 369-374.

Higham, L., Ahmed, S., & Ahmed, M. (2013). Hoping to live a ‘normal’ life whilst living with

unpredictable health and fear of death: Impact of cystic fibrosis on young adults. Journal of Genetic Counseling, 22(3), 374-383.

Hogg, M., Braithwaite, M., Bailey, M., Kotsimbos, T., & Wilson, J. W. (2007). Work disability in adults with cystic fibrosis and its relationship to quality of life. Journal of Cystic Fibrosis, 6(3), 223-227.

Isralsky, M., Goldberg, R. T., & Shwachman, H. (1979). Vocational development and adjustment of adolescents with cystic fibrosis. Archives of Physical Medicine and Rehabilitation, 60(8), 369-374.

Laborde-Castérot, H., Donnay, C., Chapron, J., Burgel, P., Kanaan, R., Honoré, I… Hubert, D. (2012). Employment and work disability in adults with cystic fibrosis. Journal of Cystic Fibrosis, 11(2), 137-143.

Maslow, G. R., Haydon, A., McRee, A., Ford, C. A., & Halpern, C. T. (2011). Growing up with a chronic illness: Social success, educational/vocational distress. Journal of Adolescent Health, 49(2), 206-212.

Mungle, J., Burker, E. J., Yankaskas, J. R. (2002). Vocational rehabilitation counseling for adolescents and adults with cystic fibrosis. Journal of Applied Rehabilitation Counseling, 33(4), 15-21.

Palmer, M. L., & Boisen, L. S. (2002). Cystic fibrosis and the transition to adulthood. Social Work in Health Care, 36(1), 45-58.

Targett, K., Bourke, S., Nash, E., Murphy, E., Ayres, J., & Devereux, G. (2014). Employment in adults with cystic fibrosis. Occupational Medicine, 64(2), 87-94.

Taylor-Robinson, D. C., Smyth, R., Diggle, P. J., Whitehead, M. A longitudinal study of the impact of social deprivation and disease severity on employment status in the UK cystic fibrosis population. Plos One, 8(8), e73322.

Williams, L. W., Burker, E. J., & Kazukauskas, K. (2011). Cystic fibrosis and achieving vocational success: The key role of the rehabilitation counsellor. Journal of Applied Rehabilitation Counseling, 42(4), 12-18.

 

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