The research presented examines how pervasive technology can support intra-family communication, supporting existing practices and complimenting them by addressing communication needs currently unmet by current communication media like mobile phones, social networking systems, and so forth. Specifically the investigation focused on busy families, understood here to be families with two working parents and at least one child sharing the same roof. The class of technologies the authors consider are awareness systems, defined as communication systems that support individuals to maintain, with low effort, a peripheral awareness of each other's activities and whereabouts. This research combined a variety of research methods including interviews, web surveys, experience sampling, and field testing of functional prototypes of mobile awareness systems. It also involved the development of several applications, which were either seen as research tools in support of the methods applied or as prototypes of awareness systems that embody some of the envisioned characteristics of this emerging class of technologies. The contribution of this research is along two main dimensions. First in identifying intra-family communication needs that drive the adoption of awareness systems and second in providing directions for the design of such systems.
Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child’s pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which needs are age-specific. To learn more about these families’ support needs, 20 parents of a child with PIMD aged 3–26 years were interviewed about their family’s support needs through interviews with open-ended questions. Interview transcripts were qualitatively analysed to identify support needs in five domains (child with PIMD, family, environment, services, and system). Various (age-specific) support needs were identified. The findings of this study can help health professionals and policy makers to improve the support of families with a child with PIMD by attuning the support to these families’ specific needs.
This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18-25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals' family situations can affect their future. We searched relevant studies following the guideline of Arskey and O'Mailley's methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.
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’).
Broers en zussen van mensen met (Z)EVMB zijn vaak levenslang betrokken bij de zorg voor hun broer of zus. Gedurende het leven veranderen de rollen die zij vervullen. Wanneer de ouders meer op leeftijd raken en de zorgtaken voor hen zwaarder worden of niet meer mogelijk zijn, komen broers en zussen voor de vraag te staan welke rollen zij in deze nieuwe situatie willen vervullen. In dit promotieonderzoek willen we inzicht krijgen in de rollen die volwassen broers en zussen vervullen in het leven van mensen met (Z)EVMB. Wat zijn de ervaringen van broers en zussen en welke ondersteuningsbehoeften hebben zij? En wat betekent hun betrokkenheid voor de sociale contacten en participatie van hun broer of zus met (Z)EVMB? Ook willen we kijken naar de samenwerking tussen zorgprofessionals en familieleden van de tweede generatie. Hoe verloopt deze samenwerking en hoe wordt betrokkenheid van tweede generatie familieleden gefaciliteerd?
Family Dairy Tech Sustainable and affordable stable management systems for family dairy farms in India. An example of Dutch technology that is useful to an ?emerging economy?. Summary Problem The demand for dairy products in India is increasing. Small and medium-sized family farmers want to capitalize on this development and the Indian government wants to support them. Dutch companies offer knowledge and a wide range of products and services to improve dairy housing systems and better milk quality, in which India is interested. However, the Dutch technology is sophisticated and expensive. For a successful entry into this market, entrepreneurs have to develop affordable and robust (?frugal?) systems and products adapted to the Indian climate and market conditions. The external question is therefore: ?How can Dutch companies specialised on dairy housing systems adapt their products and offer these on the Indian market to contribute to sustainable and profitable local dairy farming??. Goal Since 2011, VHL University of Applied Sciences (VHL) is collaborating with a college and an agricultural information center Krishi Vigyan Kendra (KVK), Baramati, Pune district, Maharashtra State India. In this region many small-scale dairy farmers are active. Within this project, KVK wants to support farmers to scale up their farm form one or a few cows up to 15 to 100 cows, with a better milk quality. In this innovative project, VHL and Saxion Universities of Applied Sciences, in collaboration with KVK and several Dutch companies want to develop integrated solutions for the growing number of dairy farms in the State of Maharashtra, India. The research questions are: 1. "How can, by smart combinations of existing and new technologies, the cow-varieties and milk- and stable-management systems in Baramati, India, for family farmers be optimized in an affordable and sustainable way?" 2. "What are potential markets in India for Dutch companies in the field of stable management and which innovative business models can support entering this market?" Results The intended results are: 1. A design of an integral stable management system for small and medium-sized dairy farms in India, composed of modified Dutch technologies. 2. A cattle improvement programme for robust cows that are adapted to the conditions of Maharashtra. 3. An advice to Dutch entrepreneurs how to develop their market position in India for their technologies. 4. An advice to Indian family farmers how they can increase their margins in a sustainable way by employing innovative technologies.
