"The AYA Director": A Synthesizing Concept to Understand Psychosocial Experiences of Adolescents and Young Adults With Cancer.
BACKGROUND
Adolescents and young adults with cancer face distinct psychosocial challenges because of the multiple developmental tasks associated with their age. Research on psychosocial care, directed to the unique needs and demands of this population, is limited.


OBJECTIVE
The aim of this study was to describe the psychosocial experiences of adolescents and young adults with cancer to further the understanding of the meanings they attribute to their experiences.


METHODS
This study used a qualitative design in which individual semistructured interviews were conducted with 23 participants aged 15 to 25 years.


RESULTS
Physical consequences of the disease and its treatment, loss of independence, and being alone were significant challenges. Major coping strategies of the participants were to avoid the possible threats to life and maintain a positive attitude and normal life. Participants were "directors" who took control in order to manage their illness, maintain a sense of control, and master their lives to the fullest extent possible.


CONCLUSIONS
The concept of the "AYA (adolescent and young adult) director" provides insight for healthcare professionals to understand how adolescents and young adults experience cancer.


CONCLUSIONS
Throughout the cancer experience, participants wanted to be treated as individuals with specific needs and preferences. They preferred circumstances they are accustomed to; some found it difficult to accept restrictions imposed by the hospital. Adolescents and young adults with cancer want to be involved in the way healthcare professionals communicate with them and the information they are provided.
Author Affiliations: University Centre for Nursing & Midwifery, Department of Public Health, Faculty of Medicine and Health Sciences, Ghent University (Ms Belpame and Drs Van Hecke, Beeckman, and Verhaeghe); and Medical Oncology (Ms Decoene), Adult Haematology and Stem Cell Transplantation (Ms Quaghebeur), Ghent University Hospital, staff member, nursing director department (Dr Van Hecke), Belgium; and Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands (Dr Kars).
Nathalie
N
Belpame
Marijke C
MC
Kars
Dimitri
D
Beeckman
Elsie
E
Decoene
Marijke
M
Quaghebeur
Ann
A
Van Hecke
Sofie
S
Verhaeghe
D000223:Adaptation, Psychological; D000293:Adolescent; D005260:Female; D006801:Humans; D008016:Life Change Events; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life; D012944:Social Support; D013315:Stress, Psychological / Q000150:complications / Q000523:psychology; D017741:Survivors / Q000523:psychology; D055815:Young Adult