Purpose: Providing an overview of studies on family participation in physiotherapy-related tasks of critically ill patients, addressing two research questions (RQ): 1) What are the perceptions of patients, relatives, and staff about family participation in physiotherapy-related tasks? and 2) What are the effects of interventions of family participation in physiotherapy-related tasks? Material and methods: Qualitative, quantitative and mixed-methods articles were identified using PubMed, Embase and CINAHL. Studies reporting on family participation in physiotherapy-related tasks of adult critically ill patients were included. A convergent segregated approach for mixed-methods reviews was used. Results: Eighteen articles were included; 13 for RQ1, and 5 for RQ2. The included studies were quantitative, qualitative and mixed-method, including between 8 and 452 participants. The descriptive studies exhibit a general appreciation for involvement of relatives in physiotherapy-related tasks, although most of the studies reported on family involvement in general care and incorporated diverse physiotherapy-related tasks. One study explored the effectiveness of family participation on a rehabilitation outcome and showed that the percentage of patients mobilizing three times a day increased. Conclusion: Positive attitudes were observed among patients, their relatives and staff towards family participation in physiotherapy-related tasks of critically ill patients. However, limited research has been done into the effect of interventions containing family participation in physiotherapy-related tasks.
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.
Intra-ocular straylight can cause decreased visual functioning, and it may cause diminished vision-related quality of life (VRQOL). This cross-sectional population-based study investigates the association between straylight and VRQOL in middle-aged and elderly individuals. Multivariable linear regression analyses were used to assess the association between straylight modeled continuously and cutoff at the recommended fitness-to-drive value, straylight ≥ 1.4 log(s), and VRQOL. The study showed that participants with normal straylight values, straylight ≤ 1.4 log(s), rated their VRQOL slightly better than those with high straylight values (straylight ≥ 1.4 log(s)). Furthermore, multivariable regression analysis revealed a borderline statistical significant association (p = .06) between intra-ocular straylight and self-reported VRQOL in middle-aged and elderly individuals. The association between straylight and self-reported VRQOL was not influenced by the status of the intra-ocular lens (natural vs. artificial intra-ocular lens after cataract extraction) or the number of (instrumental) activities of daily living that were reported as difficult for the elderly individuals.
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
