Differences in adjustment by child developmental stage among caregivers of children with disorders of sex development

<p>Abstract</p> <p>Background</p> <p>The current study sought to compare levels of overprotection and parenting stress reported by caregivers of children with disorders of sex development at four different developmental stages.</p> <p>Methods</p> <p>Caregivers (<it>N </it>= 59) of children with disorders of sex development were recruited from specialty clinics and were asked to complete the Parent Protection Scale and Parenting Stress Index/Short Form as measures of overprotective behaviors and parenting stress, respectively.</p> <p>Results</p> <p>Analyses of covariance (ANCOVAs) were conducted to examine differences between caregiver report of overprotection and parenting stress. Results revealed that caregivers of infants and toddlers exhibited more overprotective behaviors than caregivers of children in the other age groups. Further, caregivers of adolescents experienced significantly more parenting stress than caregivers of school-age children, and this effect was driven by personal distress and problematic parent-child interactions, rather than having a difficult child.</p> <p>Conclusions</p> <p>These results suggest that caregivers of children with disorders of sex development may have different psychosocial needs based upon their child's developmental stage and based upon the disorder-related challenges that are most salient at that developmental stage.</p

Investigating the cost-effectiveness of videotelephone based support for newly diagnosed paediatric oncology patients and their families: design of a randomised controlled trial

BACKGROUND: Providing ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care professionals and accessibility, which is often reduced due to distance, time, cost and transport. The primary aim of this work is to investigate the cost-effectiveness of videotelephony to support regional and remote families returning home for the first time with a child newly diagnosed with cancer METHODS/DESIGN: We will recruit 162 paediatric oncology patients and their families to a single centre randomised controlled trial. Patients from regional and remote areas, classified by Accessibility/Remoteness Index of Australia (ARIA+) greater than 0.2, will be randomised to a videotelephone support intervention or a usual support control group. Metropolitan families (ARIA+ ≤ 0.2) will be recruited as an additional usual support control group. Families allocated to the videotelephone support intervention will have access to usual support plus education, communication, counselling and monitoring with specialist multidisciplinary team members via a videotelephone service for a 12-week period following first discharge home. Families in the usual support control group will receive standard care i.e., specialist multidisciplinary team members provide support either face-to-face during inpatient stays, outpatient clinic visits or home visits, or via telephone for families who live far away from the hospital. The primary outcome measure is parental health related quality of life as measured using the Medical Outcome Survey (MOS) Short Form SF-12 measured at baseline, 4 weeks, 8 weeks and 12 weeks. The secondary outcome measures are: parental informational and emotional support; parental perceived stress, parent reported patient quality of life and parent reported sibling quality of life, parental satisfaction with care, cost of providing improved support, health care utilisation and financial burden for families. DISCUSSION: This investigation will establish the feasibility, acceptability and cost-effectiveness of using videotelephony to improve the clinical and psychosocial support provided to regional and remote paediatric oncology patients and their families

Determinants of quality of life in children with psychiatric disorders

Objective: To assess factors that, in addition to childhood psychopathology, are associated with Quality of Life (QoL) in children with psychiatric problems. Methods: In a referred sample of 252 8 to 18-year-olds, information concerning QoL, psychopathology and a broad range of child, parent, and family/ social network factors was obtained from children, parents, teachers and clinicians. Results: Poor child, parent, and clinician reported QoL was associated with child psychopathology, but given the presence of psychopathology, also with child factors, such as low self-esteem, and poor social skills, and family/social network factors, such as poor family functioning, and poor social support. In multiple linear regression analyses the importance of parent factors, such as parenting stress, was almost negligible. Conclusion: To increase QoL of children with psychiatric problems, treatment of symptoms is important, but outcome might improve if treatment is also focussed on other factors that may affect QoL. Results are discussed in relation to current treatment programs. © Springer 2005

Minimal residual disease levels in bone marrow and peripheral blood are comparable in children with T cell acute lymphoblastic leukemia (ALL), but not in precursor-B-ALL

Sensitive and quantitative detection of minimal residual disease (MRD) in bone marrow (BM) samples of children with acute lymphoblastic leukemia (ALL) is essential for evaluation of early treatment response. In this study, we evaluated whether the traumatic BM samplings can be replaced by peripheral blood (1313) samplings. MRD levels were analyzed in follow-up samples of 62 children with precursor-B-ALL (532 paired BM-PB samples) and 22 children with T-ALL (149 paired BM-PB samples) using real-time quantitative PCR (RQ-PCR) analysis of immunoglobulin and T cell receptor gene rearrangements with sensitivities of 10(-3) to 10(-5) (one ALL cell in 103 to 105 normal cells). In 14 of the 22 T-ALL patients, detectable MRD levels were found in 67 paired BM-PB samples: in 47 pairs MRD was detected both in BM and 1313, whereas in the remaining pairs very low MRD levels were detected in BM (n = 11) or PB (n = 9) only. The MRD levels in the paired BM-PB samples were very comparable and strongly correlated (r(s) = 0.849). Comparable results were obtained earlier by immunophenotyping in 26 T-ALL patients (321 paired BM-PB samples), which also showed a strong correlation between MRD levels in paired BM and PB samples (r(s) = 0.822). In 39 of the 62 precursor-B-ALL patients, MRD was detected in 107 BM-PB pairs: in 48 pairs MRD was detected in both BM and PB, in 47 pairs MRD was solely detected in BM (at variable levels), and in 12 pairs only the 1313 sample was MRD-positive at very low levels (less than or equal to10(-4)). Furthermore, in the 48 double-positive pairs, MRD levels in BM and PB varied enormously with MRD levels in BM being up to 1000 times higher than in the corresponding PB samples. Consequently, BM samples cannot easily be replaced by PB sampling for MRD analysis in childhood precursor-B-ALL, in line with their BM origin. In T-ALL, which are of thymic origin, BM sampling might be replaced by PB sampling, because the dissemination of T-ALL cells to BM and PB appears to be comparable

Orientações ao paciente portador de epilepsia submetido ao vídeo-EEG: comparação dos níveis de ansiedade com o uso de diferentes estratégias Orientations to epileptic patient undergoing a video-EEG monitoring: comparison of anxiety levels using different strategies

OBJETIVO: Comparar os níveis de ansiedade de dois grupos de pacientes submetidos ao vídeo-EEG que tiveram diferentes estratégias de orientação para o exame; o controle teve apenas orientações verbais e o experimental também recebeu um manual de orientações. MÉTODO: Cada grupo foi aleatoriamente composto por 30 pacientes. Para avaliar as estratégias de orientação, a ansiedade dos grupos foi comparada por meio da aplicação do Inventário de Ansiedade Traço-Estado, sendo o estado de ansiedade avaliado pré e pós-exame. RESULTADOS: O grupo experimental apresentou perfil de ansiedade superior, porém, estado de ansiedade inferior, antes do exame, em relação ao controle. A ansiedade do grupo experimental foi mais baixa, pré-exame do que seu perfil, entretanto, o mesmo não ocorreu com o controle. Pós-exame, ambos os grupos apresentaram ansiedade baixa e menor que seu perfil. CONCLUSÃO: A estratégia de orientação com o manual beneficiou os pacientes, reduzindo a ansiedade antes do exame.<br>OBJETIVO: To identify and compare the anxiety level between two groups of epileptic patients undergoing a video-EEG monitoring using different patients guidelines strategies. METHOD: The random sample was composed by two groups of 30 patients each one. The control group only had verbal orientations and the experimental group, beyond the same orientations received a written guide (a booklet) with all the procedures too. The anxiety was assessed using State-Trait Anxiety Inventory with the STAI-S being applied for both groups before and after examination as described above. RESULTS: Demonstrated that, before video-EEG, the anxiety-trait score of the experimental group was higher and the anxiety-state was lower than the control group. After video-EEG, the majority of both groups demonstrated low anxiety-state score and lower than their anxiety-trait score. CONCLUSION: The strategy used with the written guide associated to verbal orientations helps to reduce the anxiety level before the video-EEG