ObjectivePatient education plays an important role in the management of chronic diseases that can cause disability and predictable psychosocial problems. Quality of life assessment in multiple sclerosis (MS) has confirmed that psychosocial complications related to working life, marriage/partnership, and the family often occur. Furthermore, symptoms such as fatigue, pain, and sexual dysfunction have a great impact. We wanted to develop and implement study circles to promote the patients’ abilities to meet such common problems and to provide a network where they can be autonomous and develop appropriate strategies in self-care and existential problems.MethodsTogether with the MS patient organization and a study association, we have arranged study circles for patients with MS, thus providing structured information according to a pedagogic model. The patients are encouraged to work together in groups to learn about the disease and its key symptoms, to develop strategies to master these symptoms in everyday life, and to make necessary changes, ie, self-care management. The programme also contains handicap policies.ResultsFifteen study circles with a total of 105 patients started during the first year. Fifteen circle leaders were approved. A focus interview showed that the patients are highly satisfied but also revealed some problems in interactions with health care professionals. The study circles were included in a wider project from a newly started multidisciplinary centre for health education for a variety of chronic diseases causing disability, which aims at becoming a regional interface between the health care system, patient organizations, and educational services.ConclusionThe study circles have an important role to play in the management of MS. Good organization is required to make such a project work since health care services do not normally work so closely with patient organizations and educational services.Practice implicationsStudy circles that are permanently established and function well are of great help for the patients and the work at the MS clinic is substantially facilitated. Health care professionals also gain from the arrangement by learning more about the self-perceived impact of the disease.
Background We aimed to describe feeding dysfunction in a group of children with tracheostomy. Methods Single‐center, retrospective chart review of all children with a tracheostomy who were evaluated by our interdisciplinary feeding program. Demographic and diagnostic data, nutrition variables, acceptance of food consistencies, as well as 2 validated psychometric instruments for assessment of feeding dysfunction were analyzed. Results Thirteen tracheostomy‐dependent children (5/13; 38% ventilator dependent) were evaluated at a median age of 51 months (interquartile range [IQR], 26–69). The majority of children (8/13; 62%) underwent evaluation after decannulation. Four children (30%) had a history of a cuffed tracheostomy tube. Eleven children (85%) used a speaking valve prior to decannulation, only 2 of whom started before initial discharge with a tracheostomy. Children with a tracheostomy had low‐median weight‐ and height‐for‐age z‐scores (−1.27 and −1.73, respectively), with normal‐median body mass index (BMI)–for‐age z‐score (0.175). Children received 75% of feedings via tube feeding (IQR, 13%–97%). Compared with other children with feeding disorders, children with tracheostomy had delays in initial acceptance of most food textures and general diet, and the Mealtime Behavior Questionnaire showed significantly worse overall scores (P = .01), and the About Your Child's Eating survey showed significantly higher parental perception of resistance to eating (P = .0001). Conclusion Requirement of enteral nutrition, poor oral‐feeding skills, chronic malnutrition, and worse mealtime behaviors are associated with tracheostomy. A history of ventilator dependence, cuffed tracheostomy, and inpatient speaking valve–use were infrequently associated with interdisciplinary feeding‐program evaluation.
If brain death is suspected, an experienced neurological consultant should be called in as soon as possible to assess the patients survival chances and evaluate possible organ removal for subsequent transplantation.
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