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.
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.
Immersive technologies are redefining and revolutionizing the staging of experiences and co-creation of value, implicating the management of customer experiences. However, limited studies have looked at the role of immersive technologies as part of the customer experience management (CXM) process. Incorporating the concepts of experience economy and value co-creation, this study proposes a dynamic CXM framework that highlights the emerging field of immersive technologies like augmented and virtual reality as part of business and marketing research. The framework acts as a guide for researchers and industry practitioners to initiate immersive technology ventures that are rooted in the co-creation and management of customer experiences
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