scholarly journals Zellweger spectrum disorder: A cross-sectional study of symptom prevalence using input from family caregivers

2020 ◽  
Vol 25 ◽  
pp. 100694
Author(s):  
Mousumi Bose ◽  
David D. Cuthbertson ◽  
Marsha A. Fraser ◽  
Jean-Baptiste Roullet ◽  
K. Michael Gibson ◽  
...  
2021 ◽  
Author(s):  
Minmin Leng ◽  
Yue Sun ◽  
Hui Chang ◽  
Zhiwen Wang

BACKGROUND Recognizing the correlations between care problems of people with dementia could be beneficial, as it may help clinicians choose treatment methods because related symptom groups may respond to the same treatment intervention. However, generalizable data on the prevalence of care problems and potential clusters of care problems in people with dementia in China remain unavailable. OBJECTIVE This study aimed to (1) evaluate the prevalence of various care problems of people with dementia, and (2) explore the core care problems and the correlation between care problems of people with dementia. METHODS A cross-sectional study design was adopted to identify the care problems of people with dementia reported by family caregivers. The questionnaire consisted of two parts. The first part was mainly socio-demographic questions of people with dementia. The second part was the care problems evaluation sheet which involved three aspects: daily living care problems, behavioral and psychological symptoms, and safety risks. Care problems of people with dementia were measured with this care problems evaluation sheet. Clustering analysis of the care problems based on Kruskal's minimum spanning tree (MST) algorithm was performed in the Jupyter Notebook software to explore the core care problems and the correlation between care problems. RESULTS A total of 687 participants were included in the analysis. In general, the prevalence of having difficulty in language performance, agitated behavior, incidence of falls was relatively higher in people with dementia, which distressed their family caregivers. Through the clustering analysis based on the Kruskal's MST algorithm, the 63 care problems were clustered into 7 clusters. The 7 core care problems were “Don't know how to dress in order”, “Refusing to take a bath”, “Bedridden”, “Hitting, kicking, pushing, or biting others”, “Pacing and aimless wandering”, “Complaining”, and “Choking on food”. CONCLUSIONS The prevalence of various care problems was high. Through the clustering analysis, care problems were clustered into 7 clusters and 7 core care problems were identified. The identity of just a few core care problems instead of a large number of them might have relevant clinical implications, in the sense that it may lead to a greater ease in the identification of underlying etiologies and to more rational treatments in people with dementia.


2020 ◽  
Vol 7 ◽  
pp. 233339362090758
Author(s):  
David B. Nicholas ◽  
Radha MacCulloch ◽  
Wendy Roberts ◽  
Lonnie Zwaigenbaum ◽  
Patricia McKeever

This study explored the experiences of mothers caring for an individual with autism spectrum disorder (ASD) ranging from 5 to 25 years of age, and examined pervasive tensions in caregiving. Guided by ethnographic methods, a retrospective cross-sectional study was conducted. Interviews with 85 mothers were analyzed inductively. Prevalent tensions in maternal caregiving were identified: (a) difficulties obtaining, yet resistance to, an ASD diagnosis; (b) identified giftedness of the child versus notions of deficit imposed by others; (c) disability-related behaviors erroneously interpreted as ‘poor parenting’; (d) contradictory considerations in diagnosis disclosure; (e) the invisibility yet pervasiveness of ASD; (f) extensive need for, yet the lack of, accessible services; (g) ASD-related care demands versus other pressing responsibilities; (h) arguments for inclusive versus exclusive services; and (i) aims of nurturing independence versus managing safety risk. Tensions were heightened by insufficient supports relative to need. Implications and recommendations for practice and policy are offered.


BMJ Open ◽  
2014 ◽  
Vol 4 (6) ◽  
pp. e004786-e004786 ◽  
Author(s):  
L. Burgoyne ◽  
L. Dowling ◽  
A. Fitzgerald ◽  
M. Connolly ◽  
J. P Browne ◽  
...  

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