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.
Background: The outbreak of the COVID-19 pandemic influenced family-centred care dramatically due to restricting visiting policies. In this new situation, nurses were challenged to develop new approaches to involve family members in patient care. A better understanding of these changes and the experiences of nurses is essential to make an adaptation of procedures, and to secure a family-centred approach in care as much as possible. Objectives: The aim of this study was to investigate how family involvement had taken place, and to explore the experiences of nurses with family involvement during the COVID-19 outbreak. In addition, we aimed to formulate recommendations for the involvement of family. Methods: We conducted a qualitative study using patient record review and focus-group interviews between April and July 2020. We reviewed records of patients with confirmed COVID-19, who were admitted to the COVID-19 wards at two affiliated university hospitals in the Netherlands. All records were searched for notations referring to family involvement. In two focus-groups, nurses who worked at the COVID-19 wards were invited to share their experiences. The Rigorous and Accelerated Data Reduction (RADaR) method was used to collect, reduce and analyse the data. Results: In total, 189 patient records were reviewed and nine nurses participated in the focus-group meetings. Patient records revealed infrequent and often unstructured communication with focus on physical condition. Nurses confirmed that communication with family was far less than before and that the physical condition of the patient was predominant. The involvement of family in care was limited to practicalities, although more involvement was described in end-of-life situations. Nurses experienced moral distress due to the visiting restrictions, though some acknowledged that they had experienced the direct patient care so intense and burdensome, that family contact simply felt too much. Conclusion: The communication with and involvement of family in hospital care changed enormously during the COVID-19 outbreak. Based on the identified themes, we formulated recommendations that may be helpful for family-centered care in hospitals during periods of restricted visiting policy.
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.
Door producten en diensten inclusief te ontwerpen kunnen ontwerpers een belangrijke bijdrage leveren aan een inclusievere samenleving, waarin iedereen op eigen wijze kan participeren. In AID gaan negen mkb-ontwerpbureaus Afdeling Buitengewone Zaken (A/BZ), theRevolution, Design Innovation Group, Greenberry, Ideate, Keen Public, Muzus, Netrex Internet Solutions (Leer Zelf Online) en Vrienden van verandering) die rijke maar uiteenlopende ervaring hebben met inclusief ontwerpen op zoek naar antwoorden op de vraag hoe hun vermogen voor inclusief ontwerpen kan worden versterkt. Ze doen dit middels actie-onderzoek in hun eigen beroepspraktijk en door hun ervaringen te delen met onderzoekers, docenten en co-ontwerpers in een ‘learning community’.
We had been involved in the redesign of the 4 Period Rooms of the Marquise Palace, also called the Palace of Secrets, in Bergen op Zoom. This design was based on the biography of a historical figure: Marie Anne van Arenberg, whose dramatic life was marked by secrets. Each of the 4 rooms represents a turning moment in Marie Anne’s story: the official marriage, the secret marriage and the betrayal, the dilemma and choice, with, in a final room, the epilogue. These different episodes are reflected in the way the rooms are furnished: the ballroom, the bedroom, the dining room. The Secret Marquise as design and exhibition has brought more visitors to the museum. As designers and researchers, however, we were interested in understanding more about this success, and, in particular, in understanding the visitors experience, both emotionally and sensorially at different moments/situations during the story-driven experience.In the fall of 2021, the visitors’ lived experience was evaluated using different approaches: a quantitative approach using biometric measurements to register people’s emotions during their visit, and a qualitative one consisting of a combination of observations, visual imagery, and interpretative phenomenological analysis (IPA).Qualitatively, our aim was to understand how respondents made sense of Marie Anne’s story in the way in which this was presented throughout the exhibition. We specifically looked at the personal context and frame of reference (e.g., previous experiences, connection to the visitor’s own life story, associations with other stories from other sources). In the design of the rooms, we used a combination of digital/interactive elements (such as a talking portrait, an interactive dinner table, an interactive family painting), and traditional physical objects (some 17th century original objects, some reproductions from that time). The second focal point of the study is to understand how these different elements lead the visitors experience.
This study responds to the calls by Stough, Welter, Block, Wennberg, & Basco (2015) and Basco (2024) to study the mechanisms through which enterprising families and their firms influence and contribute to regional economic development and how this engagement with the context influences family firm performance (James, Hadjielias, Guerrero, Discua Cruz, & Basco, 2021). Our findings will help policymakers to get a better understanding of how and under what conditions family entrepreneurs can or will take on a leadership role in the regional ecosystem. Furthermore, a more profound understanding of how enterprising families and their firms engage in socially responsible activities in their context will provide insight that help build strong entrepreneurial ecosystems. In addition, our study will showcase examples of enterprise-driven leadership of places and CSpR in the Northern part of the Netherlands.Conference paper at EIASM conference in Barcelona Spain. September 2024
