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.
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.
Previous research shows that automatic tendency to approach alcohol plays a causal role in problematic alcohol use and can be retrained by Approach Bias Modification (ApBM). ApBM has been shown to be effective for patients diagnosed with alcohol use disorder (AUD) in inpatient treatment. This study aimed to investigate the effectiveness of adding an online ApBM to treatment as usual (TAU) in an outpatient setting compared to receiving TAU with an online placebo training. 139 AUD patients receiving face-to-face or online treatment as usual (TAU) participated in the study. The patients were randomized to an active or placebo version of 8 sessions of online ApBM over a 5-week period. The weekly consumed standard units of alcohol (primary outcome) was measured at pre-and post-training, 3 and 6 months follow-up. Approach tendency was measured pre-and-post ApBM training. No additional effect of ApBM was found on alcohol intake, nor other outcomes such as craving, depression, anxiety, or stress. A significant reduction of the alcohol approach bias was found. This research showed that approach bias retraining in AUD patients in an outpatient treatment setting reduces the tendency to approach alcohol, but this training effect does not translate into a significant difference in alcohol reduction between groups. Explanations for the lack of effects of ApBM on alcohol consumption are treatment goal and severity of AUD. Future ApBM research should target outpatients with an abstinence goal and offer alternative, more user-friendly modes of delivering ApBM training.
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.
