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.
Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate motions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.
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.
