Purpose: Aftercare for curatively treated breast cancer patients includes support and information provision. As patients differ in their needs, personalization of aftercare is advocated, but clear guidelines on how to achieve personalization are currently missing. This study investigates patients’ preferences regarding assessment of care needs and information provision. Method: Semi-structured interviews were conducted with 18 breast cancer patients (15 female, 3 male) who received aftercare for at least three months in five Dutch hospitals. Interviews were analyzed using thematic analysis. Results: Several patients perceived current aftercare as too intensive or too little, therefore they preferred to discuss their needs beforehand with their health care provider to align aftercare with their needs. Patients preferred more attention to needs on the domains of social and emotional wellbeing and return to work. Patients preferred a comprehensive resource of information on potential (late) effects of cancer and its treatment and of available support options, enabling them to self-manage the dosage and timing of desired information. Patients had positive expectations about an aftercare plan, as it would provide a better overview of their care needs, support options and agreements about the aftercare trajectory. Conclusions: To facilitate personalization in aftercare, information and care needs should be better addressed and summarized in an aftercare plan. Patients and healthcare practitioners should create the aftercare plan together in shared decision-making. A supporting tool is needed to improve assessment of care needs on multiple domains, to provide layered information and facilitate use of aftercare plans.
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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.
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ObjectiveTo obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant.MethodsWe conducted semi-structured interviews with parents of VP infants participating in a post-discharge responsive parenting intervention (TOP program). Online interviews were audiotaped and transcribed verbatim. Inductive thematic analysis was performed by two independent coders.ResultsTen participants were interviewed and had various and changing information needs during the developmental trajectory of their infant. Three main themes emerged; (1) Help me understand and cope, (2) Be fully responsible for my baby, and (3) Teach me to do it myself. Available and used sources, such as the Internet, did not meet their information needs. Participants preferred their available and knowledgeable healthcare professionals for reassurance, tailored information, and practical guidance.ConclusionThis study identified parents' information needs during the first year at home with their VP infant and uncovered underlying re-appearing needs to gain confidence in child-caring abilities and autonomy in decision-making about their infants' care.InnovationThis study provides valuable information for healthcare professionals and eHealth developers to support parental self-efficacy during the first year after preterm birth.
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The presentation of management information on screens and paper is aimed at the initiation of control actions in order to bring about predefinied goals. The terms and concepts used in this control information can be interptreted in different ways. It is of vital importance that adequate definitions for these terms and concepts are provided, because of the area of tension betrween those that control and those being controlled. The creation of a common conceptual framework and the maintenance of concepts and definitions can be supported by the construction of an organization-specific lexicon and the use of modern IT tools.
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This study explores how journalists in highspeed newsrooms gather information, how gathering activities are temporally structured and how reliability manifests itself in information-gathering activities.
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Introduction: Patient information holds an important role in knee arthroplasty surgery regarding patients’ expectations and outcomes after surgery. The purpose of the present study was to explore the experiences and opinions of patients undergoing knee arthroplasty (KA) surgery on an information brochure provided preoperatively. Methods: A qualitative case study of 8 patients using individual semi-structured interviews was conducted to explore patients’ opinions on an information brochure in KA surgery. Results: Patients rated the brochure as good and recommended its use. Unsatisfactory information regarding wound healing, pain expectations, postoperative exercises and use of walking aids was reported. Patients stated that the table of contents was insufficient and the size of the brochure (A4-format) too large. Patients reported to have no need for additional digital sources (e.g. applications, websites). Conclusion: These opinions support the use of an information brochure. The reported opinions were used to improve the brochure. Future research should focus on the improvement of information sources by involving patients (and other users) in the development process in which the information is tailored towards patient needs.
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The research described in this paper provides insights into tools and methods which are used by professional information workers to keep and to manage their personal information. A literature study was carried out on 23 scholar papers and articles, retrieved from the ACM Digital Library and Library and Information Science Abstracts (LISA). The research questions were: - How do information workers keep and manage their information sources? - What aims do they have when building personal information collections? - What problems do they experience with the use and management of their personal collections? The main conclusion from the literature is that professional information workers use different tools and approaches for personal information management, depending on their personal style, the types of information in their collections and the devices which they use for retrieval. The main problem that they experience is that of information fragmentation over different collections and different devices. These findings can provide input for improvement of information literacy curricula in Higher Education. It has been remarked that scholar research and literature on Personal Information Management do not pay a lot of attention to the keeping and management of (bibliographic) data from external documentation. How people process the information from those sources and how this stimulates their personal learning, is completely overlooked. [The original publication is available at www.elpub.net]
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Children with special educational needs included in Austrian mainstream schools are provided with special educational support, which aim to create learning environments, that meet the children’s needs on an individual level. Little is known about what adjustments children with special educational needs in mainstream school classes require to promote participation in school occupations. This is the first study in Austria exploring the student-environment-fit from self-perceived children’s perspective and comparing this to teachers’ perspective by using the School Setting Interview. In this cross-sectional matched pairs study twenty-five children (mean age 12.5 ± 1.4) with special educational needs and twenty-one teachers from six Austrian secondary schools were interviewed. Participants’ ratings were analyzed descriptively and statistically with Wilcoxon-Sign Rank Test. Reported adjustments from the child and teacher perspectives were analyzed with qualitative content analysis and presented using the occupational, social and physical environmental dimensions from the Model of Human Occupation. Results indicate perceived student-environment-fit differs between school activities as well as between children and teachers. Three out of 16 school activities showed a statistically significant difference between children and teacher matched-pair analysis. Children perceive more unmet needs then teachers. Most adjustments are reported in the social environment dimension and inform practitioners what adjustments are perceived to be useful for children with Special Educational Needs and their teachers. Both children’s and teacher’s perspectives provide valuable information. Significantly, children in this study were able to identify required needs and describe adjustments. To increase participation in school occupations, children can and need to be actively included in the decision-making process.
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In the present study, how crime scene investigators are informed before going to a crime scene was investigated. In order to gain more insight in the flow of information from emergency call to crime scene, semi-structured interviews were conducted in three different police regions with six crime scene investigators, six forensic team leaders, and six crime scene investigators.Results indicate that information that crime scene investigators receive before going to a crime scene is usually limited. Most information is provided on-site by the uniformed police officers, forensic medical examiner, and tactical investigation team. This information flow is underexposed, and there are no guidelines about how it is recorded.Even though all parties are provided with limited information, incidents are quickly labelled by emergency call responders and forensic team leaders. The influence of the framing process that occurs as a result is underestimated. Furthermore, emergency call responders and forensic team leaders have different goals in the investigative process and hardly take into account the specific needs of the crime scene investigator. In order to better meet the needs of crime scene investigators, further research about the content of the provided information, as well as at what moment it should be shared, is needed. Also, in order to determine afterward what role information may have played in the decision-making at the crime scene the recording of information should be better safeguarded.
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Social needs are important basic human needs; when not satisfied, loneliness and social isolation can occur and subsequently sickness or even premature death. For older people social needs can be more difficult to satisfy because of the loss of resources such as health and mobility. Interventions for older people to satisfy social needs are often not evaluated and when evaluated are not proven successful. Technological interventions can be successful, but the relationship between technology and social wellbeing is complex and more research in this area is needed. The aim of this research is to uncover design opportunities for technological interventions to fulfil social needs of older people. Context-mapping sessions are a way to gain more insight into the social needs of older people and to involve them in the design of interventions to fulfil social needs. Participants of the context-mapping sessions were older people and social workers working with older people. Four sessions with a total of 20 participants were held to generate ideas for interventions to satisfy social needs. The results are transcripts from the discussion parts of the context-mapping sessions and collages the participants created. The transcripts were independently analysed and inductive codes were attached to quotations in the transcripts that are relevant to the research question and subsequently thematic analysis took place. Collages made by the participants were independently analysed by the researchers and after discussion consensus was reached about important themes. The following three main themes emerged: ‘connectedness’, ‘independence’ and ‘meaningfulness’. Technology was not identified as a separate theme, but was addressed in relation to the above mentioned themes. Staying active in a meaningful way, for example by engaging in volunteer work, may fulfil the three needs of being connected, independent and meaningful. In addition, interventions can also focus on the need to be and remain independent and to deal with becoming more dependent. The older people in our study have an ambivalent attitude towards technology, which needs to be taken into account when designing an intervention. We conclude this paper by making recommendations for possible technological interventions to fulfil social needs.
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