Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
Purpose: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients’ discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present (‘being there’) which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones’ wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.
This article describes how the 4 period rooms of the city museum in the Dutch town of Bergen op Zoom were redesigned using storytelling and how this design has been received by visitors. For this redesign, rooms were reframed as sets of the story of Marie Anne van Arenberg, Marquise of Bergen op Zoom, and the objects as props to stage her story, which was full of secrets and of unexpected turning points. The visitor is enticed to discover cues to unlock these secrets in order to get a grip on her story while exploring the museum space. This is however not a treasure hunt, nor simply a game, but an exploration in which visitors are invited to discover and to create meaning and a journey into what matters to them. To this end, they have indeed to resort to their own frame of reference and to their personal life story in order to come to a narrative closure at the end of their visit. We used Interpretative Phenomenological Analysis to understand the visitors’ lived experience, both emotionally and sensorially at different moments and situations during the story-driven experience and to understand how the chosen design helps tell the story and how visitors use their personal context and frame of reference to make sense of it.
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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.
