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Medical News (SIOP)

The care needs of adolescents with cancer

Relationships with sick people are often difficult and need give and take. Physicians must always keep this in mind when working with children or adolescents and their families.

Adolescence is a special time of life because so many changes take place. Even healthy adolescents can have behavioral difficulties and parents can be very worried. There is also an evolutionary break down, a period in which contracting a potentially lethal disease and facing difficult treatment may interfere in their growth and identity process. Adolescents affected by a severe disease may experience stress, depression, pain, extreme frustration, and anger.

Understanding adolescents with cancer

Almost all adolescents and young adults being treated for leukaemia and cancer ask for information and clear explanations about their illness, treatment and long-term effects. They often have questions about their future, and sometimes they demand counseling and request details about the possible effects on their sexuality or fertility [1,2]. Some of them also want guidance about physical exercise and fitness, nutrition, transportation and holidays, as well as information about internet sites for cancer education or appropriate support [3].

The supportive care provided by family and friends plays a very important role in the health status and physical functioning of adolescents [4]. To help them cope and adjust, physicians must provide resources and care programs, together with a psychosocial assessment of the whole family. We need to understand how adolescents feel about their unmet needs in order to facilitate their adjustment and help them avoid post-traumatic stress [5].

Research into coping skills

To communicate their feelings, adolescents often choose to write an impersonal account of their experiences, using symbolism or fantasy [6,7]. A debilitating disease may aggravate difficulties with their body perception and self-esteem [8,9]. Paying attention to these writings will enhance the physician’s understanding and allow a deeper exploration of the adolescent’s feelings and ability to cope [10,11].

In any case it is very important that physicians improve their listening skills and learn to recognise and resolve barriers that hinder dialogue. Each adolescent must feel comfortable enough to speak about him/herself [12].

Over the last thirty years in our Department psychologists have acquired experience in the Bone Marrow Transplantation Unit, where long-term strict isolation, the painful conditions due both to the illness and to the diagnostic and therapeutic procedures, and uncertainty about the results, all place a very high degree of stress on youngsters.

The data reveals that the most disturbing facts concern the fragmentation of the ego, fantasies about death and above all about sexual identity (particularly when the donor is of the opposite gender). Some problems are linked to the choice of the donor from among family members or to the forced choice of an unrelated donor.

Several cured patients suffer from persisting psychological distress such as self isolation, failure to engage in problem-solving, behavioral disengagement, psychological distress, and difficulties in coping with uncertainty about the future. In conclusion we feel that adolescents may be too old for a paediatrician, and yet too young for an adult practitioner – but they always need special care from physicians and professional caregivers.

Luisa M. Massimo, MD – Department of Paediatric Haematology and Oncology

G. Gaslini – Children’s Research Hospital, Genova, Italy

REFERENCES
  1. Bleyer, A; Albritton, K. Special considerations for the young adult and adolescent. In Kufe, DW; Pollock, RE; Weichselbaum, R. (eds) Cancer Medicine. Hamilton, Ontario: Decker BC; 2003; 2414-2422.
  2. Harris, KA. The informational needs of patients with cancer and their families. Cancer Practice 1998, 6, 39.
  3. Rideout, V. Generation Rx.com: How Young People Use the Internet for Health Information. Henry J. Kaiser Family Foundation. Menlo Park, CA. 2001.
  4. National Cancer Institute. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. Report of the Adolescent and Young Adult Oncology Progress Review Group. Bethesda: US Department of Health and Human Services, National Institutes of Health, National Cancer Institute and the Live Strong Young Adult Alliance; 2006.
  5. Hobbie, WL; Stuber, M; Meeske, K; Wissler, K; Rourke, MT, Ruccione, K; Hinkle, A, Zakaz, AE. Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol 2000, 18, 4060-4066.
  6. Wilkie, V. Narrative based medicine essential in communication skill training. Br Med J 1999, 318, 28.
  7. Charon, R. Narrative and Medicine. N Eng J Med 2004, 350, 862-864.
  8. Charon, R. Narrative medicine: Form, Function, and Ethics. Ann Intern Med 2001, 134, 83-87.
  9. Greenhalgh, T; Hurwitz, B. Narrative based medicine: why study narrative? Br Med J 1999, 318, 48-50.
  10. Grinyer, A. The narrative correspondence method: what a follow-up study can tell us about the longer term effect on participants in emotionally demanding research. Qual Health Res 2004, 14, 1328-1341.
  11. DasGupta, S; Charon R. Personal Illness narratives: Using reflective writing to teach empathy. Acad Med 2004, 79, 351-356.
  12. Coupey, SM. Interviewing adolescents. In Adolescent Medicine Pediatr Clin North America 1997, 44, 1349-1364
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