‘Listening to Patients’: what is the value of age‐appropriate care to teenagers and young adults with cancer?

MARRIS S., MORGAN S. & STARK D. (2010) European Journal of Cancer Care 20 , 145–151 ‘Listening to Patients’: what is the value of age‐appropriate care to teenagers and young adults with cancer? Current healthcare policy increasingly recognises the importance of patient experience in determining care. The 2005 UK National Institute for Health and Clinical Excellence Improving Outcomes Guidance encompasses caring for young people with cancer in an age‐appropriate model of care developing regional principal treatment centres for this purpose. When published this was based upon limited outcomes evidence, and only a small amount of teenage and young adult patient and parent opinion. We have systematically reviewed the literature between 1996 and 2008, examining how far the experiences of this patient group support or refute the current policy. The recent literature describes with increasing consistency that teenage and young adult cancer patients have specific care needs, and gain benefits from an age‐appropriate environment of care, including peer group support, age‐appropriate information, recreational and vocational support, and staff expert in both the cancer and care of their age group. Many patients are prepared to travel to receive such care, if services are not in place to deliver excellent shared care between principal treatment centres and services nearer home. Some of these needs are unmet in non‐specialist units. There remains, however, a paucity of rigorous comparative studies quantifying the value of specialist cancer care for this patient group.     

Hardship, dedication and investment: an exploration of Irish mothers commitment to communicating with their children with cerebral palsy

This qualitative study investigated the experiences of mothers who have a child with communication difficulties resulting from cerebral palsy (CP). There is a dearth of information about parents' experiences of having a child with CP and communication difficulties. Three participants, whose children had moderate or severe CP and communication difficulties, were recruited from a voluntary organization. Participants were interviewed using an in-depth, semi-structured interview guide. Interviews were audio-recorded, then transcribed and subsequently analysed using Grounded Theory methods. Five main themes emerged, combining to form the core category of mothers dedicating their attention to their children . The information gleaned from this study could have important implications for nurses involved in facilitating communication, including speech and language therapists, occupational therapists and registered nurses. By becoming more aware of the experiences of parents with a child with CP and communication disorders, nurses may be better able to plan and implement therapy and also support communication aims. The study concludes with a discussion of further research avenues, suggesting that a study investigating the experiences of parents of children with other types of physical disabilities affecting communication should be conducted to determine the similarities and differences of parents of children with other kinds of disability. A similar study with a larger sample could be conducted to validate the findings of the current study.     

Thrombosis of the inferior vena cava with successive lung embolization in a 15-year-old boy with the nephrotic syndrome

The authors report on a boy with typical course of recent nephrotic syndrome, who developed massive thrombosis involving the iliac inferior holden veins during the standard therapy with corticosteroid. The first sign of this complication was pulmonary embolism. Thrombosis was treated by surgery, during which 3 large thrombi from veins were removed. The patient developed recurrent thrombosis occurring at the previous sites in the later stage and he died 23 days after the first sign of thromboembolic complication. Autopsy showed only minimal glomerular changes. The cause of the death was massive pulmonary embolisation. The aethiopathogenesis of the complication and preventive approach in children with nephrotic syndrome are discussed.     

Impact of Impaired Nasal Breathing on Sleep-Disordered Breathing

Objective: The role of the nose and its importance in the development and severity of sleep-disordered breathing (SDB) is still a matter of discussion. In the first part of this study, often-controversial data and theories about the nose are reviewed concerning its influence on the pathophysiology of SDB and to interpret certain clinical findings connected with impaired nasal breathing. In the second part, the effectiveness of some nonsurgical and surgical therapies is evaluated. Method: A worldwide literature research (Medline) was the basis for this review. Results: The study of the literature on nasal resistance and clinical findings about the effects of incomplete or complete nasal blockage, particularly in comparison of healthy persons and persons with SDB, allows the assumption of the existence of two different groups of responders: a larger group where the importance of the nose for SDB is negligible and a smaller group where the influence of the nose on SDB is crucial. The same seems to hold true for the responses to nonsurgical and surgical treatments with only a few surgical results available in the literature. While the success rate of nasal surgery for patients with obstructive sleep apnea, for instance, seems to be less than 20%, the normalization of nasal resistance often leads to a positive impact on the well-being and the sleep quality of these patients. However, because criteria to identify responders are lacking, the prediction of success of any treatment for the individual with SDB is not possible.