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. Quality of life is an important health outcome for older persons. It predicts the adverse outcomes of institutionalization and premature death. The aim of this cross-sectional study was to determine the influence of both disability in activities of daily living (ADL) and instrumental activities of daily living (IADL) on physical and mental dimensions of quality of life. Methods. A total of 377 Dutch people aged 75 years and older completed a web-based questionnaire. This questionnaire contained the Groningen Activity Restriction Scale (GARS) for measuring ADL and IADL and the Short-Form Health Survey (SF-12) for measuring quality of life. The SF-12 distinguishes two dimensions of quality of life, a physical and mental dimension.
Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
Along with the rapidly growing number of disabled people participating in competitive sports, there is an increased need for (para)medical support in disability sports. Disabled athletes experience differences in body composition, metabolism, training load and habitual activity patterns compared with non-disabled athletes. Moreover, it has been suggested that the well-recognized athlete triad, and low energy availability and low bone mineral density in particular, is even a greater challenge in disabled athletes. Therefore, it is not surprising that sport nutritionists of disabled athletes have expressed an urgency for increased knowledge and insights on the nutritional demands of this group. This project aims to investigate energy expenditure, dietary intake, body composition and bone health of disabled athletes, ultimately leading to nutritional guidelines that promote health and optimal sports performance for this unique population. For this purpose, we will conduct a series of studies and implementation activities that are inter-related and build on the latest insights from sports practice, technology and science. Our international consortium is highly qualified to achieve this goal. It consists of knowledge institutes including world-leading experts in sport and nutrition research, complemented with practical insights from nutritionists working with disabled athletes and the involvement of athletes and teams through the Dutch and Norwegian Olympic committees. The international collaboration, which is a clear strength of this project, is not only focused on research, but also on the optimization of professional practice and educational activities. In this regard, the outcomes of this project will be directly available for practical use by the (para)medical staff working with disabled athletes, and will be extensively communicated to sport teams to ensure that the new insights are directly embedded into daily practice. The project outcomes will also be incorporated in educational activities for dietetics and sport and exercise students, thereby increasing knowledge of future practitioners.
Along with the rapidly growing number of disabled people participating in competitive sports, there is an increased need for (para)medical support in disability sports. Disabled athletes experience differences in body composition, metabolism, training load and habitual activity patterns compared with non-disabled athletes. Moreover, it has been suggested that the well-recognized athlete triad, and low energy availability and low bone mineral density in particular, is even a greater challenge in disabled athletes. Therefore, it is not surprising that sport nutritionists of disabled athletes have expressed an urgency for increased knowledge and insights on the nutritional demands of this group. This project aims to investigate energy expenditure, dietary intake, body composition and bone health of disabled athletes, ultimately leading to nutritional guidelines that promote health and optimal sports performance for this unique population. For this purpose, we will conduct a series of studies and implementation activities that are inter-related and build on the latest insights from sports practice, technology and science. Our international consortium is highly qualified to achieve this goal. It consists of knowledge institutes including world-leading experts in sport and nutrition research, complemented with practical insights from nutritionists working with disabled athletes and the involvement of athletes and teams through the Dutch and Norwegian Olympic committees. The international collaboration, which is a clear strength of this project, is not only focused on research, but also on the optimization of professional practice and educational activities. In this regard, the outcomes of this project will be directly available for practical use by the (para)medical staff working with disabled athletes, and will be extensively communicated to sport teams to ensure that the new insights are directly embedded into daily practice. The project outcomes will also be incorporated in educational activities for dietetics and sport and exercise students, thereby increasing knowledge of future practitioners.
