Abstract Aim: To determine whether the level of gross motor function and functional skills in children with cerebral palsy (CP) and cerebral visual impairment (CVI) as well as caregiver assistance are lower in comparison with the corresponding group of children experiencing CP without CVI. Method: Data aggregated from 23 children experiencing CP with CVI were compared with data from children with CP without CVI matched for Gross Motor Function Classifi cation System, mental development and age at testing. Scores for Gross Motor Function Measure-88 (GMFM-88) and the Pediatric Evaluation of Disability Inventory-NL (PEDI-NL) were employed to compare the level of gross motor function, functional skills and caregiver assistance between both groups. The Wilcoxon Signed Rank Test was utilized with a signifi cance level of p 0.05. Results: Children with CP with CVI, mean ( SD) age 6.4 1.5, scored signifi cantly lower than those with CP without CVI, mean age 6.3 1.6, on all GMFM-88 dimensions and the total score ( p 0.001) and on the PEDI-NL in the sections of Functional Skills and Caregiver Assistance as well as in those of domains self-care ( p 0.001), mobility ( p 0.001) and social functioning ( p 0.001). Concerning the modifi cations scale, the scores for children with CP and CVI were signifi cantly lower regarding mobility (no modifi cation , p 0.05), social functioning (no modifi cation, p 0.05) and social functioning (child-oriented, p 0.05). Conclusion: CVI contributes to diminished gross motor function and functional skills in children experiencing CP with CVI compared with children with CP without CVI. Children with CP and CVI also require increased support at the level of caregiver assistance. Specifi c interventions need to be developed for children experiencing CP with CVI in order to improve gross motor function, functional skills and caregiver assistance.
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The need for care will increase in the coming years. Most people with a disability or old age receive support from an informal caregiver. Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia). BPSD, including sleep disturbance, is an important factor for a higher care load. In this scoping review, we aim to investigate whether technology is available to support the informal caregiver, to lower the care burden, improve sleep quality, and therefore influence the reduction of social isolation of informal caregivers of people with dementia. A scoping review is performed following the methodological framework by Arksey and O'Mally and Rumrill et al., the scoping review includes scientific and other sources (unpublished literature, websites, reports, etc.). The findings of the scoping review shows that there are technology applications available to support the informal caregiver of a person with dementia. The technology applications mostly contribute to lower the care burden and/or improve sleep quality and therefore may contribute to reduce social isolation. The technology applications found target either the person with dementia, the informal caregiver, or both.
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Background: Online contacts with a health professional have the potential to support family caregivers of people with dementia. Objective: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention—involving among others personal email contacts with a dementia nurse—was compared with online interventions without these email contacts. Methods: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers’ self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers’ reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. Results: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference –0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over http://www.jmir.org/2020/2/e13001/ J Med Internet Res 2020 | vol. 22 | iss. 2 | e13001 | p. 1 (page number not for citation purposes) JOURNAL OF MEDICAL INTERNET RESEARCH Huis in het Veld et al XSL•FO RenderX time (difference –4.21, P=.09) and at T1 (difference –4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. Conclusions: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required.
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