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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Affective teacher–child relationships have frequently been investigated in school settings, but less attention has been devoted to these relationships in after-school care. This study explored caregiver- (N = 90) and child-informed reports (N = 90) of the affective caregiver–child relationship (N = 180 dyads) in Dutch after-school care, exploring gender differences at caregiver and child level and the relationship with a gender match between children and caregivers. The caregivers and children reported relatively high levels of closeness and relatively low level of conflict and dependency/autonomy support, irrespective of gender. Multilevel regression analyses revealed that a gender match between child and caregiver was associated with teacher-reported closeness: levels were highest in female-girl dyads and lowest in male-boy dyads. Further, boys indicated the highest levels of autonomy in male-boy dyads, whereas girls indicated the lowest levels in female-girl dyads. Masculinity of staff was associated with more child-reported autonomy support, whereas femininity predicted caregiver-reported closeness in the relationship.
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Background: Engaging families in postsurgical care is potentially beneficial for improving cancer patient outcomes and quality of care. The authors developed a family involvement program (FIP) and in this study, the authors aim to evaluate the impact of the FIP on family caregiver burden and well-being. Moreover, the authors aim to assess the fidelity of the program. Materials and methods: This is a preplanned subgroup analysis of a patient-preferred prospective cohort study that included family caregivers of patients who underwent major oncological surgery for gastrointestinal tumors. Only patient-nominated family caregivers could participate in the FIP. Caregivers received structured training in fundamental caregiving tasks from healthcare professionals and then actively participated in these tasks. Caregiver burden and well-being were measured four times (at hospital admission, at hospital discharge, and at 1 and 3 months posthospital discharge) using the Caregiver Strain Index+ (CSI+) and the Care-related Quality of Life instrument (CarerQoL-7D). The fidelity of the FIP was assessed by recording completion of care activities. In addition, family caregivers were asked whether they would participate in the FIP again. Results: Most of the 152 family caregivers were female (77.6%), and their mean age was 61.3 years (SD=11.6). Median CSI+ scores ranged between -1 and 0 and remained below the cutoff point of experiencing burden. CarerQoL-7D results indicated no significant differences in family caregivers' well-being over time. Upon discharge, over 75% of the family caregivers stated that they would recommend the FIP to others. The highest compliance with all fundamental care activities was observed during postoperative days 2-4. Conclusion: The family caregivers of oncological surgical patients who participated in the FIP exhibited acceptable levels of caregiver burden and well-being. These findings suggest that the FIP is a valuable intervention to equip family caregivers with the skills to navigate the uncertain period following a patient's hospital discharge.
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Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ.Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between theresearcher and caregiver.Results: The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their ownmental health.Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.
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Background: Optimizing transitional care by practicing family-centered care might reduce unplanned events for patients who undergo major abdominal cancer surgery. However, it remains unknown whether involving family caregivers in patients’ healthcare also has negative consequences for patient safety. This study assessed the safety of family involvement in patients’ healthcare by examining the cause of unplanned events in patients who participated in a family involvement program (FIP) after major abdominal cancer surgery. Methods: This is a secondary analysis focusing on the intervention group of a prospective cohort study conducted in the Netherlands. Data were collected from April 2019 to May 2022. Participants in the intervention group were patients who engaged in a FIP. Unplanned events were analyzed, and root causes were identified using the medical version of a prevention- and recovery-information system for monitoring and analysis (PRISMA) that analyses unintended events in healthcare. Unplanned events were compared between patients who received care from family caregivers and patients who received professional at-home care after discharge. A Mann-Whitney U test was used to analyze data. Results: Of the 152 FIP participants, 68 experienced an unplanned event and were included. 112 unplanned events occurred with 145 root causes since some unplanned events had several root causes. Most root causes of unplanned events were patient-related factors (n = 109, 75%), such as patient characteristics and disease-related factors. No root causes due to inadequate healthcare from the family caregiver were identified. Unplanned events did not differ statistically (interquartile range 1–2) (p = 0.35) between patients who received care from trained family caregivers and those who received professional at-home care after discharge. Conclusion: Based on the insights from the root-cause analysis in this prospective multicenter study, it appears that unplanned emergency room visits and hospital readmissions are not related to the active involvement of family caregivers in surgical follow-up care. Moreover, surgical follow-up care by trained family caregivers during hospitalization was not associated with increased rates of unplanned adverse events. Hence, the concept of active family involvement by proficiently trained family caregivers in postoperative care appears safe and feasible for patients undergoing major abdominal surgery.
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This paper highlights key opportunities for technology design for informal caregivers who provide long-term in-home care. For this purpose, a study with informal caregivers was conducted, including interviews (N=4) and online questionnaires (N=34) based on holistic analysis of supportive technologies. These investigations provide a deeper understanding of the key opportunities in the design of technologies to support the caregiver, namely (1) making caregivers better informed and more aware of existing solutions (2) increasing awareness of the caregivers' own wellness; (3) cherishing the valuable, positive moments of caregiving (e.g. by capturing precious moments) and (4) encouraging meaningful social interactions among caregivers for strengthening social ties.
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PurposeThe aims of this study were to adapt the Paediatric Evaluation of Disability Inventory, Dutch version (PEDI-NL) for children with cerebral visual impairment (CVI) and cerebral palsy (CP) and determine test–retest and inter-respondent reliability.MethodThe Delphi method was used to gain consensus among twenty-one health experts familiar with CVI. Test–retest and inter-respondent reliability were assessed for parents and caregivers of 75 children (aged 50–144 months) with CP and CVI. The percentage identical scores of item scores were computed, as well as the interclass coefficients (ICC) and Cronbach's alphas of scale scores over the domains self-care, mobility, and social function.ResultsAll experts agreed on the adaptation of the PEDI-NL for children with CVI. On item score, for the Functional Skills scale, mean percentage identical scores variations for test–retest reliability were 73–79 with Caregiver Assistance scale 73–81, and for inter-respondent reliability 21–76 with Caregiver Assistance scale 40–43. For all scales over all domains ICCs exceeded 0.87. For the domains self-care, mobility, and social function, the Functional Skills scale and the Caregiver Assistance scale have Cronbach's alpha above 0.88.ConclusionThe adapted PEDI-NL for children with CP and CVI is reliable and comparable to the original PEDI-NL.
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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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