ABSTRACT
OBJECTIVES: Early psychosocial screening may guide interventions and ameliorate the adverse psychosocial effects of childhood cancer. The revised psychosocial assessment tool provides risk information - Universal (typical distress), Targeted (additional specific distress), and Clinical (severe distress) - about the child with cancer and his or her family. This pilot study investigated the benefits of providing a summary of family psychosocial risk information to the medical team treating the newly diagnosed child (Experimental Group, EG). METHOD: We conducted a pilot randomized control trial with a sample of 67 parents, comparing the EG to the control group (CG) on parental perception of family psychosocial difficulties (revised psychosocial assessment tool risk levels), child behavior (behavior assessment scale for children-2), pediatric quality of life (PedsQL), and parental anxiety (state-anxiety scale of the state-trait anxiety inventory ), 2-4 weeks after diagnosis (Time 1) and 6 months later (Time 2). RESULTS: Compared to the CG, participants in the EG had significantly reduced targeted and clinical risk (p < 0.001), and improved pain related PedsQL at Time 2 (p < 0.05). Scores for PedsQL total and nearly all subscales improved over time in both groups (p < 0.05 to p < 0.001). No changes in behavior scores were noted. CONCLUSION: Preliminary findings suggest that providing a summary of the Psychosocial Assessment Tool to the treating team shortly after diagnosis may help reduce family wide psychosocial risk 6 months later and improve quality of life related to pain for children who are undergoing treatment for cancer.
Subject(s)
Anxiety/psychology , Child Behavior/psychology , Family Health , Parents/psychology , Quality of Life , Risk Assessment/methods , Stress, Psychological/diagnosis , Adaptation, Psychological , Adolescent , Adult , Canada , Child , Child, Preschool , Female , Humans , Male , Mass Screening/instrumentation , Middle Aged , Neoplasms , Pilot Projects , Surveys and QuestionnairesABSTRACT
BACKGROUND: The Psychosocial Screening Tool (PAT) was developed and validated with a sample of caregivers of children newly diagnosed with cancer in the United States. This study aimed to assess cultural adaptation (Phase 1) and validity and reliability of the revised PAT (PATrev) with a Canadian sample (Phase 2). PROCEDURE: In Phase 1, a convenience sample of seven parents of children who were treated for cancer and six pediatric oncology healthcare experts participated. In Phase 2, 67 parents of children newly diagnosed with cancer from 4 Canadian pediatric cancer centers participated. To assess reliability and validity of the PATrev, parents completed behavioral (BASC-2) and quality of life (PedsQL) instruments about the child and an anxiety inventory (STAI) about themselves. RESULTS: The PAT required minor changes to be culturally adapted for the Canadian population. The PATrev had strong inter-rater (0.77) test-retest (0.75), and internal consistency reliability (0.85), as well as moderate to strong validity comparing PATrev child's problems and PedsQL total (-0.49), PedsQL anxiety (-0.47), BASC-2 internalizing (0.64), behavioral (0.63), and adaptive scores (-0.56). PATrev discriminative validity was confirmed with BASC-2 scores (AUR scores of 0.70-0.74). PATrev parental stressors were strongly correlated to STAI scores (0.53). Finally, agreement between PATrev child's problems and parental anxiety scores was moderate (0.47). CONCLUSION: This study supports the original PAT, demonstrates PATrev is a reliable and valid psychosocial screening tool, and provides unique evidence regarding early psychosocial risk in the family, which have important implications for guiding psychosocial practice.
Subject(s)
Caregivers/psychology , Neoplasms/psychology , Parents/psychology , Psychometrics/instrumentation , Adult , Area Under Curve , Canada , Child , Female , Humans , Male , Middle Aged , ROC Curve , Reproducibility of ResultsABSTRACT
To assist sibling bone marrow donors with the psychological and emotional distress that they may experience as donors, a sibling bone marrow donor program was developed at The Hospital for Sick Children. These donors feel overwhelming responsibility for their siblings' survival, which can lead to psychological distress. The donors are engaged in age-appropriate medical play and are encouraged to discuss their feelings and concerns about their role. After the marrow harvest, donors receive a certificate, and either they or their parents evaluate the program. Thus far, 97.5% have rated the program very helpful. These evaluations suggest that the program has a very positive effect on the sibling donor's psychosocial health. Further studies of the program's long-term success are warranted.
