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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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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To identify ethical issues that interns encounter in their clinical education and thus build a more empirical basis for the required contents of the clinical ethics curriculum. The authors analyzed a total of 522 required case reports on ethical dilemmas experienced by interns from September 1995 to May 1999 at the medical school of Vrije Universiteit in Amsterdam. They identified four regularly described and numerous less frequently described topics. The interns addressed a wide range of ethical themes. In 45% of the cases, they mentioned disclosure or non-disclosure of information and informed consent; in 37%, medical decisions at the end of life; in 16%, medical failures; and in 9%, problems transferring patients from one caregiver to another. The interns also identified 27 themes linked to their unique position as interns and 19 themes related to specific types of patients. Based on self-reported experiences, the authors conclude that clinical ethics teachers should reflect on a multitude of dilemmas. Special expertise is required with respect to end-of-life decisions, truth telling, medical failures, and transferring patients from one caregiver to another. The clinical ethics curriculum should encourage students to voice their opinions and deal with values, responsibilities, and the uncertainty and failings of medical interventions.
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Purpose The purpose of this paper is to describe whether and how groups of nursing home residents respond to the interactive device “the CRDL”. The CRDL can translate touches between people into sounds. It recognises the type of touch and adjusts the produced sound accordingly. Design/methodology/approach This was as an observational explorative study. Responses were coded and analysed using an existing theoretical framework. Findings – The CRDL creates an atmosphere of playfulness and curiosity. It lowers the threshold to touch, provides an incentive to touch and encourages to experiment with different types of touches on arms and hands. The sounds the CRDL produces sometimes trigger memories and provide themes to start and support conversation. Involving a (large) group of nursing home residents to interact with the CRDL is challenging. Research limitations/implications In order to more fully understand the potential of the CRDL, its use should be studied in different group and individual sessions and the effects of tailored content, adjusted to individual preferences and/or stages of cognition should be explored. Finally, the effects of using the CRDL on the general wellbeing of nursing home residents should be studied. Practical implications The CRDL can help caregivers to use touch to make contact with (groups of their) residents. A session should be guided by an experienced caregiver. Some familiarisation and practice with the CRDL are recommended and a quiet environment is advised. Originality/value This paper demonstrates the potential of interactive objects, such as the CRDL, in the nursing home.
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Background: In 2009, the Steering Committee for Pregnancy and Childbirth in the Netherlands recommended the implementation of continuous care during labor in order to improve perinatal outcomes. However, in current care, routine maternity caregivers are unable to provide this type of care, resulting in an implementation rate of less than 30%. Maternity care assistants (MCAs), who already play a nursing role in low risk births in the second stage of labor and in homecare during the postnatal period, might be able to fill this gap. In this study, we aim to explore the (cost) effectiveness of adding MCAs to routine first- and second-line maternity care, with the idea that these MCAs would offer continuous care to women during labor. Methods: A randomized controlled trial (RCT) will be performed comparing continuous care (CC) with care-as-usual (CAU). All women intending to have a vaginal birth, who have an understanding of the Dutch language and are > 18 years of age, will be eligible for inclusion. The intervention consists of the provision of continuous care by a trained MCA from the moment the supervising maternity caregiver establishes that labor has started. The primary outcome will be use of epidural analgesia (EA). Our secondary outcomes will be referrals from primary care to secondary care, caesarean delivery, instrumental delivery, adverse outcomes associated with epidural (fever, augmentation of labor, prolonged labor, postpartum hemorrhage, duration of postpartum stay in hospital for mother and/or newborn), women’s satisfaction with the birth experience, cost-effectiveness, and a budget impact analysis. Cost effectiveness will be calculated by QALY per prevented EA based on the utility index from the EQ-5D and the usage of healthcare services. A standardized sensitivity analysis will be carried out to quantify the outcome in addition to a budget impact analysis. In order to show a reduction from 25 to 17% in the primary outcome (alpha 0.05 and bèta 0.20), taking into account an extra 10% sample size for multi-level analysis and an attrition rate of 10%, 2 × 496 women will be needed (n = 992). Discussion: We expect that adding MCAs to the routine maternity care team will result in a decrease in the use of epidural analgesia and subsequent costs without a reduction in patient satisfaction. It will therefore be a costeffective intervention. Trial registration: Trial Registration: Netherlands Trial Register, NL8065. Registered 3 October 2019 - Retrospectively registered.
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Purpose: Collaborative deliberation comprises personal engagement, recognition of alternative actions, comparative learning, preference elicitation, and preference integration. Collaborative deliberation may be improved by assisting preference elicitation during shared decision-making. This study proposes a framework for preference elicitation to facilitate collaborative deliberation in long-term care consultations. Methods: First, a literature overview was conducted comprising current models for the elicitation of preferences in health and social care settings. The models were reviewed and compared. Second, qualitative research was applied to explore those issues that matter most to clients in long-term care. Data were collected from clients in long-term care, comprising 16 interviews, 3 focus groups, 79 client records, and 200 online client reports. The qualitative analysis followed a deductive approach. The results of the literature overview and qualitative research were combined. Results: Based on the literature overview, five overarching domains of preferences were described: “Health”, “Daily life”, “Family and friends”, ”Living conditions”, and “Finances”. The credibility of these domains was confirmed by qualitative data analysis. During interviews, clients addressed issues that matter in their lives, including a “click” with their care professional, safety, contact with loved ones, and assistance with daily structure and activities. These data were used to determine the content of the domains. Conclusion: A framework for preference elicitation in long-term care is proposed. This framework could be useful for clients and professionals in preference elicitation during collaborative deliberation.
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Background: During the process of decision-making for long-term care, clients are often dependent on informal support and available information about quality ratings of care services. However, clients do not take ratings into account when considering preferred care, and need assistance to understand their preferences. A tool to elicit preferences for long-term care could be beneficial. Therefore, the aim of this qualitative descriptive study is to understand the user requirements and develop a web-based preference elicitation tool for clients in need of longterm care. Methods: We applied a user-centred design in which end-users influence the development of the tool. The included end-users were clients, relatives, and healthcare professionals. Data collection took place between November 2017 and March 2018 by means of meetings with the development team consisting of four users, walkthrough interviews with 21 individual users, video-audio recordings, field notes, and observations during the use of the tool. Data were collected during three phases of iteration: Look and feel, Navigation, and Content. A deductive and inductive content analysis approach was used for data analysis. Results: The layout was considered accessible and easy during the Look and feel phase, and users asked for neutral images. Users found navigation easy, and expressed the need for concise and shorter text blocks. Users reached consensus about the categories of preferences, wished to adjust the content with propositions about well-being, and discussed linguistic difficulties. Conclusion: By incorporating the requirements of end-users, the user-centred design proved to be useful in progressing from the prototype to the finalized tool ‘What matters to me’. This tool may assist the elicitation of client’s preferences in their search for long-term care.
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Background: To date, there is no evidence-based functional therapy programme available for children with both cerebral palsy (CP) and cerebral visual impairment (CVI). This study evaluates an individually targeted functional therapy programme adapted for these children experiencing difficulties with gross motor functioning and functional skills. Methods: Participants: Five children with CP and CVI, mean (SD) age 114 (52) months, participated in this study. Intervention: Participants were assigned to an 18-week functional therapy programme including nine weeks of individual functional therapy aimed at improving gross motor function followed by nine weeks of daily training of functional skills from the parents/caregivers. Analyses: The Related Samples Wilcoxon Signed Rank Test with a significance level of p<.05 was utilised to detect possible significant differences between the pre- and post-test. Results: According to the Goal Attainment Scaling (GAS), each child improved gross motor functioning. All the children also scored significantly higher in the section Functional Skills in the domains self-care and mobility as well as in the section Caregiver Assistance in the domain of self-care. Conclusion: This adapted individually functional therapy programme suggests improved gross motor functioning and functional skills in children with CP and CVI.
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