Supervisors info:
Κουτελέκος Ι. Ιωάννης, Επίκουρος Καθηγητής, Τμήμα Νοσηλευτικής, Πανεπιστήμιο Δυτικής Αττικής
Μοσχοβή Μαρία, Επίκουρη Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Τζουμάκα-Μπακούλα Χρυσάνθη, Ομότιμη Καθηγήτρια, Ιατρική Σχολή, ΕΚΠΑ
Summary:
Introduction: Investigation expectations for children and adolescents with cancer is an important issue for their psycho-emotional development as well as their quality of life and is an emerging area for further research.
Purpose: The purpose of this research study was to investigate the expectations of children suffering from neoplasia or children with cancer and to assess the socio - demographic and clinical characteristics that were related to their expectations.
Material-Method: From October 2017 to March 2018, 102 questionnaires were collected from pediatric patients suffering from neoplasia disease (62 boys and 40 girls) with a median age of 13 years, covering the multidimensional expectations of children with cancer in a 4-point Likert scale. The content of the questionnaire developed included 20 possible questions, identified and evaluated by five experts (content validity). The validity of the face was ensured through the cognitive interview of 15 children suffering from cancer. In the process, children and adolescents with cancer participated in the validity of the structure of the questionnaire assessed with component analysis. The reliability of the final questionnaire was then evaluated using the SPSS.21 statistical package, which resulted in 13 questions. The questionnaire of expectations highlighted three factors that referred to the "family life expectations", "daily life / daily routine and career prospects", and "expectations of networking friendship", respectively. Information on their socio-demographic characteristics, health status and healthcare has also been expanded. The statistical results were obtained by multi-line regression analysis, with the Stata 12.1 statistical package, while ethical and ethical issues were complied with and licensed.
Results: The experts reached a consensus on a draft questionnaire with 18 questions, where they were easily understood. Of the 102 respondents, (71.3%) [boys: n = 62 (60.7%), mean age: 12.7 ± 3.3] had hematologic malignancies and [n = 58 (57% solid tumors [n = 44 (43%)] and fully completed the 4-point Likert questionnaire. The best three factor solution explained 57.3% of the fluctuation. The KMO value was 0.72 and the Bartlett test was statistically significant (χ2 = 539, df = 78, p <0.001). The final questionnaire had 13 questions and included "family life expectations" factor with five questions explaining 23.2% of the fluctuation. Four questions of the "daily life / everyday life and career prospects" factor that interprets 18.8% of the fluctuation, as well as four queries of the "friendship networking / friendship networking" factor that accounted for 15.3% of the fluctuation. Loads of objects were between 0.48-0.88. The credibility (Cronbach's alpha) for the entire scale was 0.82 and for agents ranged from 0.65-0.84. The cross-correlation coefficient ranged from 0.77-0.87. Overall, pediatric cancer patients delivered a fairly high average score of 3,33 ± 0,42 questions in the expectation’s questionnaire, while the mean scores were 3,29 ± 0,63, 3,51 ± 0, 45 and 3.19 ± 0.54, respectively. From the results of the analysis of multiple regression, it appeared that, as the age increases, the patients with neoplastic disease have overall lower expectations (p = 0.014), while the satisfaction of the doctors-nursing staff in the total expectations is positive (p = 0.018). In the family life expectancy factor, the age of children appears to play a negative role in increasing age (p = 0.019), while positive body image and satisfaction with doctors-nursing staff (p = 0.040, p = 0.006) respectively. It appeared that children aged> 13 years have worse outcomes in expectations of the daily routine and career prospects with (p = 0.037). The satisfaction they received from the doctors-nursing staff seemed to strengthen the expectations of the budding friend.
Conclusions: The 13 questions questionnaire has proven to be a valid and reliable tool that can provide pediatric staff and researchers with information about the expectations of children and adolescents with hematological malignancies and solid tumors that require long-term health care. Children and teenagers suffering from cancer are expected to live a normal life. However, as their ages grew, they were seen to have a negative impact on their future aspirations, particularly on family prospects, everyday life and the prospect of working life. An explanation may be that with the passage of time, pediatric cancer patients are becoming more and more aware of the difficulties of their lives and the problems caused by their condition. One positive thing is that their own perception makes them feel quite normal in order to create their own family in the future. Similarly, patient-centered decision-making together seemed to reinforce their expectations for life. Although they have a normal family life, they are struggling with cancer and rely on building a supportive network of friends.
Keywords:
Expectations, Neoplasm, Age, Perspective, Future, Children, Adolescents
