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.
Background: To determine whether adolescents with generalized hypermobility spectrum disorder/hypermobile Ehlers-Danlos syndrome (G-HSD/hEDS) show changes in the level of disability, physical functioning, perceived harmfulness and pain intensity after completing multidisciplinary rehabilitation treatment.Methods: Pre-test post-test design. Fourteen adolescents with G-HSD/hEDS participated. The multi-disciplinary rehabilitation treatment consisted of a combination of physical training and exposure in vivo. Physical training aims to improve aerobic capacity, muscle strength and propriocepsis for compensating hypermobility. Exposure in vivo aims to decrease disability and pain-related fear. Pre- and post-treatment assessments were conducted to assess the level of disability, physical functioning (motor performance, muscle strength and physical activity level), perceived harmfulness and pain intensity.Results: After completing multidisciplinary rehabilitation treatment, the adolescents showed a significant and clinically relevant improvement (improvement of 67%, p < 0.01) in functional disability. Furthermore, significant improvements were found in motor performance (p < 0.01), muscle strength (p < 0.05), perceived harmfulness (p < 0.01) and pain intensity (p < 0.01) after completing multidisciplinary rehabilitation treatment.Conclusion: Multidisciplinary rehabilitation treatment leads to a significantly and clinically relevant improvement in the level of disability for adolescents with G-HSD/hEDS. Positive effects were also found in physical functioning, perceived harmfulness and pain intensity. Although the results of this multidisciplinary rehabilitation treatment for adolescents with G-HSD/hEDS are promising, further study is needed to confirm these findings in a randomized design.
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.
The pressure on the European health care system is increasing considerably: more elderly people and patients with chronic diseases in need of (rehabilitation) care, a diminishing work force and health care costs continuing to rise. Several measures to counteract this are proposed, such as reduction of the length of stay in hospitals or rehabilitation centres by improving interprofessional and person-centred collaboration between health and social care professionals. Although there is a lot of attention for interprofessional education and collaborative practice (IPECP), the consortium senses a gap between competence levels of future professionals and the levels needed in rehabilitation practice. Therefore, the transfer from tertiary education to practice concerning IPECP in rehabilitation is the central theme of the project. Regional bonds between higher education institutions and rehabilitation centres will be strengthened in order to align IPECP. On the one hand we deliver a set of basic and advanced modules on functioning according to the WHO’s International Classification of Functioning, Disability and Health and a set of (assessment) tools on interprofessional skills training. Also, applications of this theory in promising approaches, both in education and in rehabilitation practice, are regionally being piloted and adapted for use in other regions. Field visits by professionals from practice to exchange experiences is included in this work package. We aim to deliver a range of learning materials, from modules on theory to guidelines on how to set up and run a student-run interprofessional learning ward in a rehabilitation centre. All tested outputs will be published on the INPRO-website and made available to be implemented in the core curricula in tertiary education and for lifelong learning in health care practice. This will ultimately contribute to improve functioning and health outcomes and quality of life of patients in rehabilitation centres and beyond.
