Cancer in adolescent and young adult populations

Cancer and Youth

AGE DOES NOT MATTER

Research Problem, Hypotheses

Recent statistics say that approximately 500 males and 350 females aged 15-39 are diagnosed with cancer in California (CDPH, 2008). Mortality rates from cancer have only slightly decreased in the last 20 years in both sexes, although both older and younger individuals stricken with the disease have benefited from improvements in mortality. The most common cancer sites among these age groups in California are breast, thyroid, skin, lymph nodes, bone, colon and rectum, the brain, testis and cervix. Cancer incidence varies with age, gender and race among these age groups (CDPH).

Survival rates of pediatric cancer have dramatically increased to 78% on account of advances in treatment (Decker, 2007). But the impact among individual children and adolescents has been vague and uncertain. Cancer has, thus, become a chronic illness with nothing defined about it. Uncertainty characterizes the experience. Does the experience of the illness change according to the duration from diagnosis?

Studies show that high levels of uncertainty create a stress response, which in turn produces defensive coping behaviors, such as anxiety, fear and distress (Decker et al., 2007). The illness process also develops a sense of uncertainty, which influences adaptation and health outcomes. Uncertainty in Illness Theory derives from the stress and coping framework by Lazarus and Folkman (1984 as qtd in Decker et al.). A sick person tries to form an idea or interpretation of his illness, his treatment and hospitalization. When he is unable to form the idea, uncertainty sets in. This happens in one out of four ways. He may feel ambiguous about his state of illness and symptoms. The systems of care or treatment may be complex. He may lack information on the diagnosis and seriousness of his illness. Or his disease process or prognosis may be unpredictable. Research on uncertainty in cancer experience among children and adolescents is limited. Haase and Rostad (1994 as qtd in Decker et al.) found that seven children aged 5-18 experienced uncertainty about the reasons for ending treatment, why other aspects of treatment continued, and the meaning of completion of treatment. They feared that cancer would return or that it had returned when they experienced the symptoms. Novakovic et al. (1996 as qtd in Decker et al.) investigated adolescent survivors of Ewing sarcoma and found that they felt uncertain about relapse and the future (Decker et al.).

2. Uncertainty is experienced by children and adolescents diagnosed with cancer as do adults with the same diagnosis. Limited studies found that the uncertainty experienced by these adolescents and young adults is related to distress like it is among corresponding adults. But at present, studies have been limited to survivorships and do not explore developmental differences. This lack calls for additional knowledge.

3. A literature review consists of the body of knowledge that has been found and collected before a given research effort. Current research is meant to contribute new information to that body of knowledge. This is a qualitative research design. The theoretical framework is the thesis statement of the new research. It links this new research to all preceding research as well as details what it will investigate.

4. The study used two Adolescent Resilience Model studies, which include five factors. These were individual protective factors, family protective factors, social protective factors, individual risk factors, and illness-related stress factors. Both studies obtained the approval of the institutional review board for the protection of human subjects for all sites.

5. Primary data were derived from the findings of the Adolescent Model, using the five factors. Secondary data analysis focused on the illness-related stress factor of uncertainty. The differences in uncertainty were analyzed, using a cross-sectional design with the three groups. The MUIS was the instrument chosen for the two studies, based on the consistency of the items with earlier qualitative studies on adolescents, scale psychometric properties, and clinical appropriateness. It has been used in several studies on cancer patients as young as 7. The two-factor interpretation used has demonstrated consistent reliability.

6. The cross-sectional design provided an adequate sample in measuring and evaluating uncertainty in the three groups. However, a longitudinal study could provide a clearer picture and understanding of uncertainty through the time span. Other limitations were the use of data during two different periods and the preferred use of MUIS-C for some of the human subjects.