Artikel van Judith Huis in het Veld, docent onderzoeker van de Hogeschool Inholland verschenen in Research in Gerontological Nursing ABSTRACT The current article discusses how and by whom family caregivers want to be supported in selfmanagement when managing changes in behavior and mood of relatives with dementia and whether family caregivers consider eHealth a useful tool for self-management support. Four asynchronous online focus groups were held with 32 family caregivers of individuals with dementia. Transcripts of the online focus groups were analyzed using qualitative thematic analysis. Family caregivers need support from professionals or peers in the form of (a) information about dementia and its symptoms, (b) tips and advice on managing changes in behavior and mood, (c) opportunities to discuss experiences and feelings, and (d) appreciation and acknowledgement of caregiving. The opinions of family caregivers about self-management support through eHealth were also reported. Findings suggest a personal approach is essential to self-management support for family caregivers managing changes in behavior and mood of relatives with dementia. In addition, self-management support can be provided to some extent through eHealth, but this medium cannot replace personal contacts entirely.
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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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Person-centered care interventions can improve the quality of life and decrease behavioral problems of people with dementia. Although not convincingly proven, person-centered care interventions may benefit the caregivers as well. This study aims to gain insight into how working with the Veder Contact Method (VCM) – a new person-centered care method – influences the job satisfaction of caregivers.
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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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Objective: Despite the increasing availability of eRehabilitation, its use remains limited. The aim of this study was to assess factors associated with willingness to use eRehabilitation. Design: Cross-sectional survey. Subjects: Stroke patients, informal caregivers, health-care professionals. Methods: The survey included personal characteristics, willingness to use eRehabilitation (yes/no) and barri-ers/facilitators influencing this willingness (4-point scale). Barriers/facilitators were merged into factors. The association between these factors and willingness to use eRehabilitation was assessed using logistic regression analyses. Results: Overall, 125 patients, 43 informal caregivers and 105 healthcare professionals participated in the study. Willingness to use eRehabilitation was positively influenced by perceived patient benefits (e.g. reduced travel time, increased motivation, better outcomes), among patients (odds ratio (OR) 2.68; 95% confidence interval (95% CI) 1.34–5.33), informal caregivers (OR 8.98; 95% CI 1.70–47.33) and healthcare professionals (OR 6.25; 95% CI 1.17–10.48). Insufficient knowledge decreased willingness to use eRehabilitation among pa-tients (OR 0.36, 95% CI 0.17–0.74). Limitations of the study include low response rates and possible response bias. Conclusion: Differences were found between patients/informal caregivers and healthcare professionals. Ho-wever, for both groups, perceived benefits of the use of eRehabilitation facilitated willingness to use eRehabili-tation. Further research is needed to determine the benefits of such programs, and inform all users about the potential benefits, and how to use eRehabilitation. Lay Abstract The use of digital eRehabilitation after stroke (e.g. in serious games, e-consultation and education) is increasing. However, the use of eRehabilitation in daily practice is limited. As a first step in increasing the use of eRehabilitation in stroke care, this study examined which factors influence the willingness of stroke patients, informal caregivers and healthcare professionals to use eRehabilitation. Beliefs about the benefits of eRehabilitation were found to have the largest positive impact on willingness to use eRehabilitation. These benefits included reduced travel time, increased adherence to therapy or motivation, and better health outcomes. The willingness to use eRehabilitation is limited by a lack of knowledge about how to use eRehabilitation.
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Incorporating user requirements in the design of e-rehabilitation interventions facilitates their implementation. However, insight into requirements for e-rehabilitation after stroke is lacking. This study investigated which user requirements for stroke e-rehabilitation are important to stroke patients, informal caregivers, and health professionals. The methodology consisted of a survey study amongst stroke patients, informal caregivers, and health professionals (physicians, physical therapists and occupational therapists). The survey consisted of statements about requirements regarding accessibility, usability and content of a comprehensive stroke e-health intervention (4-point Likert scale, 1=unimportant/4=important). The mean with standard deviation was the metric used to determine the importance of requirements. Patients (N=125), informal caregivers (N=43), and health professionals (N=105) completed the survey. The mean score of user requirements regarding accessibility, usability and content for stroke e-rehabilitation was 3.1 for patients, 3.4 for informal caregivers and 3.4 for health professionals. Data showed that a large number of user requirements are important and should be incorporated into the design of stroke e-rehabilitation to facilitate their implementation.
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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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Aim: To describe the extent of perceived collaboration between family caregivers of older persons and hospital nurses.Background: Collaboration between hospital nurses and family caregivers is of increasing importance in older patient’s care. Research lacks a specific focus on family caregiver’s collaboration with nurses.Method: Using a cross-sectional design, 302 caregivers of older patients (≥ 70 years) completed the 20-item Family Collaboration Scale with the subscales: trust in nursing care, accessible nurse, and influence on decisions. Date were analyzed with descriptive statistics and bivariate correlations.Results: Family caregivers rated their level of trust in nurses and nurses’ accessibility higher than the level of their influence on decisions. Family caregivers who had more contact with nurses perceived higher levels of influence on decisions (p ≤ .001) and overall collaboration (p ≤ .001).Conclusion: Family caregivers’ collaboration with nurses can be improved, especially in recognizing and exploiting family caregivers as partner in the care for older hospitalized persons and regarding their level of influence on decisions.Implications for Nursing Management: Insight into family caregivers’ collaboration with nurses will help nurse managers to jointlydevelop policy with nurses on how to organize more family caregiver’ involvement in the standard care for older persons.
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afstudeerscriptie van studente Psychologie Yasmin Gharavi gepubliceerd in BMC Psychiatry: Background: Family members who care for patients with severe mental illness experience emotional distress and report a higher incidence of mental illness than those in the general population. They report feeling inadequately prepared to provide the necessary practical and emotional support for these patients. The MAT training, an Interaction- Skills Training program (IST) for caregivers, was developed to meet those needs. This study used a single-arm pretestposttest design to examine the impact of the training on caregivers’ sense of competence (self-efficacy) and burden.
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Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.
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