After completing this course, the reader will be able to:1. Explain the contribution of genetics to heritable aspects of pediatric cancer.2. Describe the applications of presymptomatic gene testing in family members with familial pediatric cancers to the early detection, prevention, and management of tumors in patients and their family members.This article is available for continuing medical education credit at CME.TheOncologist.com. CME CME ABSTRACT
AimTo evaluate parental stressors in relation to parents caring for a child with type 1 diabetes and the impact of these stressors upon parents and the extended family. Based upon the evidence submitted, techniques to enhance parental coping skills and an improved diabetic service were hoped to be implemented.Methods250 questionnaires were posted out to parents of children with type 1 diabetes. Each household received two questionnaires to enable both parents to participate. The questionnaire used was the Paediatric Inventory for Parents as recommened by the International Society for Paediatric and Adolescent Diabetes. Following the return of the questionnaires, two focus groups were held, each consisting of between 3 and 7 parents. The purpose of the focus groups was to discuss areas which had scored highly in the questionnaires as profound stressors. Consent was obtained from the parents who participated in the focus groups to enable recording of the discussion. The parents of the focus groups were chosen at random. Ethical approval had been obtained.Results123 questionnaires were returned and of these 66 were female, 16 were male and 41 did not specify their gender. The questionnaire divided the questions into four primary categories: communication, medical care, emotional distance and role function. The emotional distance category scored higher than the others and areas raised of concern by parents included feeling helpless and worrying about the future and longterm impact of the illness. The findings of the focus groups reiniterated parental fear regarding their child’s future in addition to the pressure and responsibility of providing 24 h care for their child and society’s misconceptions regarding type 1 diabetes. In particular, the focus groups highlighted the impact of caring for a child with type 1 diabetes upon parents. Parental sleep patterns and social outgoings had deterioated.ConclusionsCaring for a child with type 1 diabetes has a major physical and emotional impact upon parental wellbeing. Increased attention needs to be given to supporting parental emotional wellbeing including the availability of psychology services.
Previous research has shown that children and adolescents on different CP trajectories are exposed to a higher risk of being not in education employment or training (NEET) in young adulthood/adulthood. However, there has not been much research on factors that may mediate the association between CP trajectories and NEET status at age 20. In the present study, we investigated the role of school experience at age 14 years in mediating the association between CP trajectory group defined from age 4 to 13, namely Early-Onset Persistent (EOP), Adolescent-Onset (AO) and Childhood-Limited (CL), and Low (L) and NEET status at age 20. Using G-computation, we estimated the natural direct and indirect effects of CP trajectory group on NEET using data from ALSPAC. We found that school experience mediates the relationship between EOP trajectory and NEET status at age 20. The impact of attrition on these results was also investigated via imputation of missing values under the assumption of missing at random. These findings highlight the role of schools in potentially minimising the risk of becoming NEET in high-risk youth.Aims Empower our young people and encourage self-management and advocacy -that remains the overarching principle at our diabetes clinic. A key component of this is to understand the expectations of young people and answer questions they seek answers to. By using their checklist and not our own, we may cover fewer items but are more likely to have a purposeful and eventually fruitful conversation. Our aim was to identify each patient' individual goals and tailor discussions accordingly. Methods We distributed questionnaires, in the form of a 'mind bubble', to young people over 12 years attending paediatric diabetes clinics in our hospital over a two-month period. A 'mind bubble' is a simplified visual questionnaire designed to be user-friendly and engage with young people. Young people were asked 'What would you like to discuss today at your diabetes clinic?' and their responses were then addressed at that attendance. Results We received 32 completed 'mind bubbles'. The most common response was for advice on hyperglycemia and hypoglycaemia management (44%). 7 responses (22%) were regarding practical advice on holidays and exercise, 6 responses (19%) for specific questions regarding insulin pumps and infusion sets, and 3 (9%) regarding the use of associated computer programmes. 3 responses (9%) asked for education on ketones. Feedback from these were very positive specially from parents who felt their young person was empowered to articulate exactly what they wanted from us. Conclusions The 'mind bubble' provides a practical way for young people to inform the diabetes team of their expectations for each clinic visit. The wide variety of responses highlights the challenges of engaging with young people with complex, life long conditions, and the need for patient centred care to enable our young people grow in confidence.
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