Background: A paradigm shift in health care from illness to wellbeing requires new assessment technologies and intervention strategies. Self-monitoring tools based on the Experience Sampling Method (ESM) might provide a solution. They enable patients to monitor both vulnerability and resilience in daily life. Although ESM solutions are extensively used in research, a translation from science into daily clinical practice is needed. Objective: To investigate the redesign process of an existing platform for ESM data collection for detailed functional analysis and disease management used by psychological assistants to the general practitioner (PAGPs) in family medicine. Methods: The experience-sampling platform was reconceptualized according to the design thinking framework in three phases. PAGPs were closely involved in co-creation sessions. In the ‘understand’ phase, knowledge about end-users’ characteristics and current eHealth use was collected (nominal group technique – 2 sessions with N = 15). In the ‘explore’ phase, the key needs concerning the platform content and functionalities were evaluated and prioritized (empathy mapping – 1 session with N = 5, moderated user testing – 1 session with N = 4). In the ‘materialize’ phase, the adjusted version of the platform was tested in daily clinical practice (4 months with N = 4). The whole process was extensively logged, analyzed using content analysis, and discussed with an interprofessional project group. Results: In the ‘understand’ phase, PAGPs emphasized the variability in symptoms reported by patients. Therefore, moment-to-moment assessment of mood and behavior in a daily life context could be valuable. In the ‘explore’ phase, (motivational) functionalities, technological performance and instructions turned out to be important user requirements and could be improved. In the ‘materialize’ phase, PAGPs encountered barriers to implement the experience-sampling platform. They were insufficiently facilitated by the regional primary care group and general practitioners. Conclusion: The redesign process in co-creation yielded meaningful insights into the needs, desires and daily routines in family medicine. Severe barriers were encountered related to the use and uptake of the experience-sampling platform in settings where health care professionals lack the time, knowledge and skills. Future research should focus on the applicability of this platform in family medicine and incorporate patient experiences.
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Introduction: Self-management is considered a potential answer to the increasing demand for family medicine by people suffering from a chronic condition or multi-morbidity. A key element of self-management is goal setting. Goal setting is often defined as a moment of agreement between a professional and a patient. In the self-management literature, however, goal setting is regarded as a circular process. Still, it is unclear how professionals working in family medicine can put it into practice. This background paper aims to contribute to the understanding of goal setting within self-management and to identify elements that need further development for practical use. Debate: Four questions for debate emerge in this article: (1) What are self-management goals? (2) What is necessary to accomplish the process of goal setting within self-management? (3) How can professionals decide on the degree of support needed for goal setting within self-management? (4) How can patients set their goals and how can they be supported? Implications: Self-management goals can be set for different (life) domains. Using a holistic framework will help in creating an overview of patients’ goals that do not merely focus on medical issues. It is a challenge for professionals to coach their patients to think about and set their goals themselves. More insight in patients’ willingness and ability to set self-management goals is desirable. Moreover, as goal setting is a circular process, professionals need to be supported to go through this process with their patients.
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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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Purpose: Providing an overview of studies on family participation in physiotherapy-related tasks of critically ill patients, addressing two research questions (RQ): 1) What are the perceptions of patients, relatives, and staff about family participation in physiotherapy-related tasks? and 2) What are the effects of interventions of family participation in physiotherapy-related tasks? Material and methods: Qualitative, quantitative and mixed-methods articles were identified using PubMed, Embase and CINAHL. Studies reporting on family participation in physiotherapy-related tasks of adult critically ill patients were included. A convergent segregated approach for mixed-methods reviews was used. Results: Eighteen articles were included; 13 for RQ1, and 5 for RQ2. The included studies were quantitative, qualitative and mixed-method, including between 8 and 452 participants. The descriptive studies exhibit a general appreciation for involvement of relatives in physiotherapy-related tasks, although most of the studies reported on family involvement in general care and incorporated diverse physiotherapy-related tasks. One study explored the effectiveness of family participation on a rehabilitation outcome and showed that the percentage of patients mobilizing three times a day increased. Conclusion: Positive attitudes were observed among patients, their relatives and staff towards family participation in physiotherapy-related tasks of critically ill patients. However, limited research has been done into the effect of interventions containing family participation in physiotherapy-related tasks.
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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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This study explored what contributes to successful family foster care from the perspective of young people by asking them about their most positive memory of family foster care. Forty-four Dutch adolescents and young adults (aged 16–28) participated in this study and shared their most positive memory in a short interview. Their answers were qualitatively analyzed using reflexive thematic analysis, supplemented with an analysis of the structure of their memories. The thematic analysis resulted in the themes Belongingness, Receiving support, Normal family life, It is better than before, and Seeing yourself grow. The structural analysis showed that young people both shared memories related to specific events, as well as memories that portrayed how they felt for a prolonged period of time. In addition, young people were inclined to share negative memories alongside the positive memories. These results highlight that, in order to build a sense of belonging, it is important that of foster parents create a normal family environment for foster children and provide continuous support. Moreover, the negative memories shared by participants are discussed in light of a bias resulting from earlier traumatic experiences. Accepted Version. Published Version Article at Sage: https://doi.org/10.1177%2F1359104520978691
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Although many publications have documented the use of complementary and alternative medicine (CAM) in children and adolescents, the recent review showed that there are only few well-controlled studies that support the efficacy of CAM in the treatment and clinical improvement of children with asthma. However, some evidence has been found that specific CAM techniques are differentially associated with psychosocial outcomes, indicating the importance of examining CAM modalities individually, as well as within culturally specific contexts. Based on the previous study of Traditional Chinese Medicine (TCM) treatment in children’s asthma, this study examined the efficacy of TCM in areas with differing air pollution. This study is based on a longitudinal qualitative data and observations of families of children with asthma collected between 2009 and 2012 in Amsterdam, The Netherlands. The study results indicate that while TCM treatment of children can be beneficial to treatment of asthma, environmental pollution renders positive effects of alternative treatment largely ineffective. https://www.linkedin.com/in/helenkopnina/
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BACKGROUND: The COVID-19 pandemic has resulted in a major influx of intensive care unit (ICU) admissions. Currently, there is limited knowledge on the long-term outcomes of COVID-19 ICU-survivors and the impact on family members. This study aimed to gain an insight into the long-term physical, social and psychological functioning of COVID-19 ICU-survivors and their family members at three- and six-months following ICU discharge.METHODS: A single-center, prospective cohort study was conducted among COVID-19 ICU-survivors and their family members. Participants received questionnaires at three and six months after ICU discharge. Physical functioning was evaluated using the MOS Short-Form General Health Survey, Clinical Frailty Scale and spirometry tests. Social functioning was determined using the McMaster Family Assessment Device and return to work. Psychological functioning was assessed using the Hospital Anxiety and Depression Scale.RESULTS: Sixty COVID-19 ICU-survivors and 78 family members participated in this study. Physical functioning was impaired in ICU-survivors as reflected by a score of 33.3 (IQR 16.7-66.7) and 50 (IQR 16.7-83.3) out of 100 at 3- and 6-month follow-ups, respectively. Ninety percent of ICU-survivors reported persistent symptoms after 6 months. Social functioning was impaired since 90% of COVID-19 ICU-survivors had not reached their pre-ICU work level 6 months after ICU-discharge. Psychological functioning was unaffected in COVID-19 ICU-survivors. Family members experienced worse work status in 35% and 34% of cases, including a decrease in work rate among 18.3% and 7.4% of cases at 3- and 6-months post ICU-discharge, respectively. Psychologically, 63% of family members reported ongoing impaired well-being due to the COVID-19-related mandatory physical distance from their relatives.CONCLUSION: COVID-19 ICU-survivors suffer from a prolonged disease burden, which is prominent in physical and social functioning, work status and persisting symptoms among 90% of patients. Family members reported a reduction in return to work and impaired well-being. Further research is needed to extend the follow-up period and study the effects of standardized rehabilitation in COVID-19 patients and their family members.
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The present study examined efficacy of traditional Chinese medicine (TCM) treatment in Dutch children with asthma in areas with differing air pollution. The study results indicate that TCM treatment of children living in more polluted urban area is less successful then that of children living in cleaner air area. http://dx.doi.org/10.5402/2012/547534 https://www.linkedin.com/in/helenkopnina/
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Background: Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). Aims: To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. Methods and procedures: 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. Outcomes and results: 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0???? 8) and in children with BIF 2.88 (range 0???? 7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. Conclusions and implications: The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.
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