Breaking bad news:what parents would like you to know

OBJECTIVE: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience communication of bad news. The objective of this study is to analyse parents' experiences (barriers and facilitators) of communication of bad news. DESIGN: A qualitative study consisting of a constant comparative analysis of in-depth interviews conducted with parents. SETTING: The Netherlands. PARTICIPANTS: Sixty-four parents-bereaved and non-bereaved-of 44 children (aged 1-12 years, 61% deceased) with a life-threatening condition. INTERVENTIONS: None. RESULTS: Based on parents' experiences, the following 10 barriers to the communication of bad news were identified: (1) a lack of (timely) communication, (2) physicians' failure to ask parents for input, (3) parents feel unprepared during and after the conversation, (4) a lack of clarity about future treatment, (5) physicians' failure to voice uncertainties, (6) physicians' failure to schedule follow-up conversations, (7) presence of too many or unknown healthcare professionals, (8) parental concerns in breaking bad news to children, (9) managing indications of bad news in non-conversational contexts, and (10) parents' misunderstanding of medical terminology. CONCLUSIONS: This study shows healthcare professionals how parents experience barriers in bad news conversations. This mainly concerns practical aspects of communication. The results provide practical pointers on how the communication of bad news can be improved to better suit the needs of parents. From the parents' perspective, the timing of conversations in which they were informed that their child might not survive was far too late. Sometimes, no such conversations ever took place

Differences in delineation guidelines for head and neck cancer result in inconsistent reported dose and corresponding NTCP

AbstractPurposeTo test the hypothesis that delineation of swallowing organs at risk (SWOARs) based on different guidelines results in differences in dose–volume parameters and subsequent normal tissue complication probability (NTCP) values for dysphagia-related endpoints.Materials and methodsNine different SWOARs were delineated according to five different delineation guidelines in 29 patients. Reference delineation was performed according to the guidelines and NTCP-models of Christianen et al. Concordance Index (CI), dosimetric consequences, as well as differences in the subsequent NTCPs were calculated.ResultsThe median CI of the different delineation guidelines with the reference guidelines was 0.54 for the pharyngeal constrictor muscles, 0.56 for the laryngeal structures and 0.07 for the cricopharyngeal muscle and esophageal inlet muscle. The average difference in mean dose to the SWOARs between the guidelines with the largest difference (maxΔD) was 3.5±3.2Gy. A mean ΔNTCP of 2.3±2.7% was found. For two patients, ΔNTCP exceeded 10%.ConclusionsThe majority of the patients showed little differences in NTCPs between the different delineation guidelines. However, large NTCP differences >10% were found in 7% of the patients. For correct use of NTCP models in individual patients, uniform delineation guidelines are of great importance

Executive Functioning in Daily Life in Parkinson's Disease: Initiative, Planning and Multi-Task Performance

Impairments in executive functioning are frequently observed in Parkinson's disease (PD). However, executive functioning needed in daily life is difficult to measure. Considering this difficulty the Cognitive Effort Test (CET) was recently developed. In this multi-task test the goals are specified but participants are free in their approach. This study applies the CET in PD patients and investigates whether initiative, planning and multi-tasking are associated with aspects of executive functions and psychomotor speed. Thirty-six PD patients with a mild to moderate disease severity and thirty-four healthy participants were included in this study. PD patients planned and demonstrated more sequential task execution, which was associated with a decreased psychomotor speed. Furthermore, patients with a moderate PD planned to execute fewer tasks at the same time than patients with a mild PD. No differences were found between these groups for multi-tasking. In conclusion, PD patients planned and executed the tasks of the CET sequentially rather than in parallel presumably reflecting a compensation strategy for a decreased psychomotor speed. Furthermore, patients with moderate PD appeared to take their impairments into consideration when planning how to engage the tasks of the test. This compensation could not be detected in patients with mild PD

Early identification of school attendance problems: How helpful are Dutch laws, policies, and protocols?

The identification of emerging school attendance problems (SAPs) is highly important. Early identification permits early intervention, which reduces the likelihood of SAPs becoming established and contributing to additional problems. In the short term, SAPs can contribute to academic and social-emotional problems for the young person and stress for the family, and they place extra demands upon school resources. In the longer-term, SAPs can lead to school drop-out which contributes to problems for the community at large. Local, national, and international efforts aimed at the identification of emerging SAPs are thus a priority. This paper commences with a review of national laws and policies in the Netherlands that have a bearing on the identification of SAPs. Two Dutch protocols relevant to the identification of SAPs are also considered. Thereafter, we discuss the strengths and weaknesses of Dutch laws, policies, and protocols, paying particular attention to the question of whether they satisfactorily stimulate early identification of SAPs. The paper concludes with recommendations about ways to improve early identification in the Netherlands. These recommendations can stimulate thinking among educational professionals and policy-makers in other countries.La identificación de problemas emergentes de asistencia escolar (PAE) es muy importante. La identificación temprana permite la intervención temprana, lo que reduce la probabilidad de que los PAE se establezcan y contribuyan a problemas adicionales. A corto plazo, los PAE pueden contribuir a problemas académicos y socioemocionales para los jóvenes y al estrés para la familia, e imponen demandas adicionales a los recursos escolares. A más largo plazo, los PAE pueden llevar a la deserción escolar, lo que contribuye a problemas para la comunidad en general. Los esfuerzos locales, nacionales e internacionales dirigidos a la identificación de PAE emergentes son, por lo tanto, una prioridad. Este documento comienza con una revisión de las leyes y políticas nacionales en los Países Bajos que inciden en la identificación de los PAE. También se consideran dos protocolos holandeses relevantes para la identificación de PAE. A partir de entonces, discutimos las fortalezas y debilidades de las leyes, políticas y protocolos holandeses, prestando especial atención a la cuestión de si estimulan satisfactoriamente la identificación temprana de los PAE. El documento concluye con recomendaciones sobre formas de mejorar la identificación temprana en los Países Bajos. Estas recomendaciones pueden estimular el pensamiento entre los profesionales de la educación y los responsables políticos en otros países