Family factors predicting short-and-long-term adaptation and quality of life of leukemic children. A descriptive and longitudinal study

The main focus of my research has been the identification of family factors predicting short and long-term child adaptation and quality of life of leukemic children. The rationale for this study is related to the advancement of therapies for cancer illnesses, especially leukemia (Ostroff et al., 2002), with an increasing attention on adaptation and quality of life of children with cancer and of their families (Eiser et al., 2005; Magal Vardi et al., 2004; Pickard et al., 2004). However the literature is not sufficiently completed on these psycho-social aspects during the therapies and on predictive factors identifying children and families more at risk for psycho-social problems. A longitudinal approach was used to assess young patients and their parents at several steps of the therapy: 118 in the second week after diagnosis communication (T1), 110 in the second month (T2), 97 after 6 months (T3), 78 after 1 year (T4) and 45 after 2 years (T5). These patients were recruited at the Haematology-Oncologic Clinic of the Department of Pediatrics, University of Padova. In this study a large number of instruments for the assessment of both parents and children has been used, adopting a multi-method approach: Questionnaires, self-report, in depth interviews and psychological tests. All the instruments were derived from the international literature of this field. The principal results are the following: 1. At one year from the diagnosis children's development delays are evident, especially Socialization (78.2% of delays), followed respectively by Motor area in children aged 0-6 years (63.8%), by Daily Living Skills area (51.3%), and by Communication area (24.4%). The model tested (R2 = 0.40; p = 0.0001) shows early child's coping (ß = 0.69) mediated by Parenting factor (ß = -0.11) as the best predictor of child's adaptive behavior post 1 year. 2. Longitudinal analyses on mental health of parents show that: DPTS symptoms don't change throughout time (F(2,140) = 1.09; p = 0.34); current life own perception increases during time (F(2,144) = 31.17; p = 0.0001); cognitive dysfunctioning doesn't modify during time (F(2,140) = 0.06; p = 0.93); depressive (F(2,144) = 3.58; p = 0.030) and arousal (F(2,144) = 4.26; p = 0.016) symptoms dampen. Also state anxiety at 6 months dampens significantly to 1 years post-diagnosis (t(71) = 2.71, p = 0.008). Parental psycho-social dimensions have the following trends: Emotional coping doesn't change along time (F(2,144) = 1.003; p = 0.37) and so does perceived Social support (F(2,144) = 0.22, p = 0.76); while Trust in medical care (F(2,144) = 52.52, p = 0.0001), Communication about illness (F(2,144) = 25.31, p = 0.0001), Routine and time reorganization (F(2,144) = 47.54, p = 0.0001) and couple connectedness (F(2,144) = 6,24, p = 0.004) increase along time. 3. An empirical model of path-analysis was estimated to evaluate child's quality of life at the second week from the diagnosis inside the psycho-social context. This model (x2(4) = 5.03; N = 128; p = 0.28; RMSEA = 0.045: NNFI = 0.99; CFI = 1) shows that child's quality of life is predicted by Parental trust in the medical staff, by Child Coping and Child Adaptability. These last two predictors are in turn sustained by the fixed factor Child age and by the modifiable factor Parenting. 4. An empirical model of path-analysis is estimated to identify early predictors of parental DPTS symptoms. This model (x2(9) = 8.83; N = 100; p = 0.45; RMSEA = 0.0001; NNFI = 1; CFI = 1) shows that emotional coping and support received are key elements impacting, the first, on parental memory abilities, and, the second, on the perceptions of their current lives. All these family factors are also related to parents' BSI-18 global score assessed at the diagnosis and indicative of short-term PTSS problems. Specific psycho-social intervention programmes for ill children and their families can be proposed and structured basing on the empirical information collected.