Implicazioni psicoaffettive del trapianto di cellule staminali ematopoietiche in età pediatrica. Uno studio quantitativo-qualitativo

Background. Several studies have shown that patients undergoing HSCT in pediatric age may manifest issues on different areas, psychological, social and medical (Khera et al., 2012; Syrjala et al., 2012). Few studies have focused on simultaneous analysis of quantitative data with qualitative data (Bingen et al., 2012). The aim of this study is to analyze the perception of illness experience in patients, survivor, and their families. Another aim of the study is to correlate qualitative with quantitative data. Method. Three different populations were asked to answer an open-ended single question about subjective experience of the disease by writing a brief composition. For the first group (Group A), composed by pediatric patients, their parents and siblings, the brief composition was collected before HSCT and one year after the transplantation. In the same way, psychological problems, of the patients and their siblings, were detected with the Child Behavior Checklist 6-18 (CBCL) (Achenbach and Rescorla, 2001) and the HRQoL of parents with the 36-Item Short Form Health Survey (SF-36). The second group (Group B) was composed by survivors, their parents and siblings at least 5 years after HSCT. CBCL was used for the identification of psychological problems in survivors. The third group (Group B-over) included adult subjects undergoing HSCT in pediatric age, at least 5 years after transplantation; the HRQoL was evaluated, for this group, using the SF-36. Socio-demographic and medical data were also collected. For the qualitative analysis of brief composition was used the software T-LAB (Ver. 8.1.4; Lancia 2012), which is capable of connecting evaluation of quantitative data, collected with the use of psychometric questionnaires, with qualitative data, obtained through the brief compositions. Results For the Group A 47 compositions were obtained in T0 and 27 in T1. Abnormal scores in the investigated scales of the CBCL (internalizing problems, externalizing problems) and the SF-36 (Mental Health) recurrently shows some semantic groups. In the waiting for HSCT are frequent lemmas as OTHER_CHILDREN_SICK, OTHER_PARENTS, UNCERTAINTY, DESPAIR, MD_INSTRUMENTS, HSCT and WITH_TOGETHER. Instead, one year after transplant, the lemmas, that are easily used, were ANXIETY_ANGUISH, ACCUSTOM, GOD, LUCK, TOO_MUCH and DEATH. The absence of abnormal scores, in the investigated scales, are related to different semantic themes such as WAIT, DO_NOT_SEE, WHY, SUCCEED, REACT, FACE, UNITED. A year away instead there are lemmas as HELP, FORCE, MOTHER, FATHER, MET_WAR, SERENITY. For Group B 98 compositions were obtained. Abnormal scores of the CBCL scales investigated (Internalizing Problems, Externalizing Problems, Total Problems) show a recurrence with semantic themes such as SIBLINGS, SICK_CHILD, HEALTHY_CHILD, MOTHER, BATTLE. High Scores instead were more correlated with themes such as DESCRIBE, THINKING, MENTAL and DEATH. For the Group B-over 18 brief composition were obtained. We can detect the differences between the genders as males focus more on lemmas such as BODY, CANCER_TREATMENT, OPERATION_MD, MEDICAL_TREATMENT, TEST_MD, while females focuses on semantic themes such as MOTHER, PEOPLE, DONOR, SIBLINGS, FATHER, PSYCHOLOGISTS, MD. Abnormal scores of SF-36 questionnaire (General Health scale) are correlated with the group of patients undergoing autologous HSCT and lemmas such as BODY, CANCER_TREATMENT, OPERATION_MD, TOO_MUCH. High Scores instead are related to keywords like MOTHER, FATHER, PEOPLE, DONOR, SUPPORT and with an allogeneic transplant un-related donor. Conclusion. The first group shows significant differences in the narrations between the various members of the family group even when comparing the scales of the questionnaires used. These differences, present during both stages of the research, indicate that the unit or division of the family, as well as the attitude of acceptance of the disease and how the disease is faced, have an important impact on the mental health status of family members. The family separation, as well as all expressions referring to the disease as a fight, battle and war, appear as a fundamental semantic core in the second group for abnormal scores of the scales investigated. The third group shows significant differences respect to the gender and the type of HSCT. In general we can assume that the care approach should have a particular focus on how the disease acts on the family relationship of all its components.