In our Guest Editorial “The COVID-19 Pandemic: A Family Affair,” which was published in the Journal of Family Nursing by members of the FAMily Health in Europe–Research in Nursing (FAME-RN) group (Luttik et al., 2020), we highlighted the impact on nurses and families.The pandemic was at its beginning, and we described the situation of patients and families and the need for family nursing. Furthermore, we addressed the effect on the mental health of nurses and other health care professionals, due to the increasing workload they needed to manage. In this Guest Editorial, we discuss the impact of the COVID-19 on families during and post pandemic.
Introduction: Self-management is considered a potential answer to the increasing demand for family medicine by people suffering from a chronic condition or multi-morbidity. A key element of self-management is goal setting. Goal setting is often defined as a moment of agreement between a professional and a patient. In the self-management literature, however, goal setting is regarded as a circular process. Still, it is unclear how professionals working in family medicine can put it into practice. This background paper aims to contribute to the understanding of goal setting within self-management and to identify elements that need further development for practical use. Debate: Four questions for debate emerge in this article: (1) What are self-management goals? (2) What is necessary to accomplish the process of goal setting within self-management? (3) How can professionals decide on the degree of support needed for goal setting within self-management? (4) How can patients set their goals and how can they be supported? Implications: Self-management goals can be set for different (life) domains. Using a holistic framework will help in creating an overview of patients’ goals that do not merely focus on medical issues. It is a challenge for professionals to coach their patients to think about and set their goals themselves. More insight in patients’ willingness and ability to set self-management goals is desirable. Moreover, as goal setting is a circular process, professionals need to be supported to go through this process with their patients.
Door producten en diensten inclusief te ontwerpen kunnen ontwerpers een belangrijke bijdrage leveren aan een inclusievere samenleving, waarin iedereen op eigen wijze kan participeren. In AID gaan negen mkb-ontwerpbureaus Afdeling Buitengewone Zaken (A/BZ), theRevolution, Design Innovation Group, Greenberry, Ideate, Keen Public, Muzus, Netrex Internet Solutions (Leer Zelf Online) en Vrienden van verandering) die rijke maar uiteenlopende ervaring hebben met inclusief ontwerpen op zoek naar antwoorden op de vraag hoe hun vermogen voor inclusief ontwerpen kan worden versterkt. Ze doen dit middels actie-onderzoek in hun eigen beroepspraktijk en door hun ervaringen te delen met onderzoekers, docenten en co-ontwerpers in een ‘learning community’.
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’).
Wie heeft er nou geen hekel aan wachten? Wij in ieder geval wel. Regelmatig als wij een voetbalwedstrijd bezoeken of een ander groot evenement komt het weer voor: ellenlange wachtrijen en doodgeslagen bier. Dat moet en kan beter in onze ogen. De oplossing? Het plaatsen van onze biermachine, de Bierport. Een innovatief apparaat dat een concrete oplossing biedt voor organisatoren van festivals, uitbaters van stadionbars of andere grootschalige evenementen. In nog geen halve minuut een kant en klaar traytje met jouw bier. Dit wordt de nieuwe standaard.
