INTERNATIONAL PEDIATRIC NURSING i i Column Editor: Bonnie Holaday, DNS, RN, FAAN Transferring to Adult Health Care: Experiences of Adolescents With Cystic Fibrosis Maree T. Russell, RN Janet Reinbold, RN, MN HendrikaJ. Maltby, RN, FRCNA, PhD C YSTIC FIBROSIS (CF) is a genetic disor- der resulting in the dysfunction of exo- crine glands; it is mainly restricted to, and is the most common autosomal genetic disorder in the Caucasian race (Harris & Super, 1991; Jackson, 1989). The incidence of CF is 1:2,500 (Harris & Super, 1991) to 1:3,500 (Fitzsimmons, 1993) live births in 1990. The severity of symptoms results in a range of differing problems for the child and family. Almost all children with CF have respiratory problems, often culminating in sec- ondary pulmonary infection that requires hospi- talization for treatment of the infection. Gastro- intestinal problems are also experienced by many of these children. The focus of manage- ment is strategies to improve and maintain pulmonary function and to prevent secondary infection. Data from the United States cite the median survival age as 10 years in the 1960s, and 28 years in 1990 (Fitzsimmons, 1993). The increase in life expectancy for individuals with CF is a result of advances in treatment and management of the disease (Fitzsimmons, 1993). This study investigated the experience of transferring to adult health care from the per- spective of adolescents with CF and their par- ents. The adult hospital is seen as the most appropriate place to provide care for adoles- cents or young adults with CF because adoles- cent independence and self-sufficiency can be From the Department of Endocrinology and Diabetes, Princess Margaret Hospital, Perth, the School of Nursing, Deakin University, Geelong, and the School of Nursing, Edith Cowan University, Perth, Australia. Address reprint requests to Maree Russell, RN,, 18 Wade St, Joondanna 6060, Western Australia. Copyright 9 1996 by W.B. Saunders Company 0882-5963/96/1104-001053.00/0 promoted, and adult-type problems, such as fertility and genetic counselling, can be more easily managed by health care providers famil- iar with adult health issues (Blum, 1991; Boyle, di Sant'Agnese, Sack, Millican, & Kulcycki, 1976; Cappelli, MacDonald & McGrath, 1989; Schidlow & Fiel, 1990). However, informal comments from adolescents, such as "transfer- ring is a death sentence" and the adult teaching hospital "is the place where children with CF die," were of significance. Additionally, the apparent lack of planned and formalized prepa- ration for transfer were a cause of concern. LITERATURE REVIEW Much has been written on chronic illness, but few studies were found that addressed transfer to adult health care, in particular the experi- ence of transferring to adult health care for adolescents with CF. Salmond (1987), and Strauss and Glaser (1975) examined coping with chronic illness in everyday life for adults with a chronic illness and their families. The chronicity model developed by Strauss and Glaser, and used by Salmond, indicates that people with chronic illnesses face common prob- lems or adaptive tasks regardless of disease. Both studies suggested that results could be generalized to all people with a chronic illness; however, not all chronic illnesses nor age groups were represented in these studies, which would reduce the generalizability of the results. Adolescents and young adults with CF and the influence of this illness on their lives have been studied (Boyle, et al., 1976; Brissette, Zinman, Fielding & Reidy, 1987; Smith, Gad & O'Grady, 1983; Yarcheski, Mahon, Kraynyak- Luise & Baker, 1987). The early studies indi- 262 Journal of Pediatric Nursing, Vol 11, No 4 (August), 1996