Psychosocial responses of adolescent cystic fibrosis patients to lung transplantation.
What psychosocial issues do adolescent cystic fibrosis (CF) patients experience after undergoing lung transplantation (Tx)? The aim of this study was to determine, using an ethnographic study design, the common themes and emotional responses in post-lung transplant adolescent CF patients of the Cardiothoracic Transplant Clinic at the Childrens Hospital Los Angeles. Nineteen CF lung transplant recipients were studied (eight males, 11 females: mean age at time of transplant, 15.7 +/- 2.7 yr). The mean time interval from Tx to interview was 25.4 months (range 1-58 months). Sixteen patients had living donor lobar lung Tx while three patients received cadaveric lungs. A series of 25 questions was used to assess the psychosocial impact of Tx, and a semi-structured interview focused on the following five domains: lifestyle, family functioning, social functioning, body image, and psychological functioning. The major themes identified by patients included: a strong desire to set and attain meaningful long-range goals, the need to control as many aspects of their lives as possible while dealing with parental over-protectiveness, and the adjustment to a new lifestyle. Common emotional responses included manageable fear/anxiety of lung rejection and uncertainty of the future, impatience with disruptions of daily routines caused by post-transplant medical management and its effect on the attainment of set goals, and frustration with parental over-protectiveness. In general, patients reported a positive outlook on life, with greater emphasis on sought-after goals as well as inter-personal relationships. This study demonstrates that adolescent CF transplant recipients develop long-term goals and plans for independence. By identifying and anticipating the emotional needs of this population, health care providers can assist patients in improving the quality of their lives from a physiological, as well as a psychological, viewpoint.
Childrens Hospital Los Angeles Cardiothoracic Transplant Program and Comprehensive Cystic Fibrosis Center, USA. cdurst@chla.usc.edu
C L
CL
Durst
M V
MV
Horn
E F
EF
MacLaughlin
C M
CM
Bowman
V A
VA
Starnes
M S
MS
Woo
D000223:Adaptation, Psychological; D000293:Adolescent; D001294:Attitude to Health; D001828:Body Image; D003550:Cystic Fibrosis / Q000523:psychology* / Q000601:surgery; D005260:Female; D006801:Humans; D008173:Lung Diseases, Obstructive / Q000523:psychology / Q000601:surgery; D016040:Lung Transplantation / Q000523:psychology*; D008206:Lymphatic Diseases / Q000150:complications / Q000523:psychology; D008297:Male; D010379:Peer Group; D012649:Self Concept; D012944:Social Support; D013315:Stress, Psychological