Background: During the process of decision-making for long-term care, clients are often dependent on informal support and available information about quality ratings of care services. However, clients do not take ratings into account when considering preferred care, and need assistance to understand their preferences. A tool to elicit preferences for long-term care could be beneficial. Therefore, the aim of this qualitative descriptive study is to understand the user requirements and develop a web-based preference elicitation tool for clients in need of longterm care. Methods: We applied a user-centred design in which end-users influence the development of the tool. The included end-users were clients, relatives, and healthcare professionals. Data collection took place between November 2017 and March 2018 by means of meetings with the development team consisting of four users, walkthrough interviews with 21 individual users, video-audio recordings, field notes, and observations during the use of the tool. Data were collected during three phases of iteration: Look and feel, Navigation, and Content. A deductive and inductive content analysis approach was used for data analysis. Results: The layout was considered accessible and easy during the Look and feel phase, and users asked for neutral images. Users found navigation easy, and expressed the need for concise and shorter text blocks. Users reached consensus about the categories of preferences, wished to adjust the content with propositions about well-being, and discussed linguistic difficulties. Conclusion: By incorporating the requirements of end-users, the user-centred design proved to be useful in progressing from the prototype to the finalized tool ‘What matters to me’. This tool may assist the elicitation of client’s preferences in their search for long-term care.
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Background: Caregiving by family members of elderly with chronic conditions is currently intensifying in the context of an aging population and health care reform in the Netherlands. It is essential that nurses have attention for supporting roles of family caregivers of older patients and address family caregiving aspects on behalf of the continuity of care. This study aims to explore what aspects of family caregiving were addressed during planned discussions between nurses, patients and family caregivers in the hospital.Methods: Qualitative descriptive research was conducted using non-participant observation and audio-recordings of planned discussions between nurses, older patients and their family caregivers as they took place in the hospital.Through purposive sampling eligible patients (≥ 65 years) with one or more chronic conditions were included. These patients were admitted to the hospital for diagnostics or due to consequences of their chronic illness.Retrospective chart review was done to obtain patient characteristics. Data were collected in November/December 2013 and April/May 2014 in four hospitals. Qualitative content analysis was performed using the inductive approachin order to gain insight into addressed aspects of family caregiving.Results: A total of 62 patients (mean age (SD) 76 years (7.2), 52% male) were included in the study, resulting in 146 planned discussions (62 admission and discharge discussions and 22 family meetings). Three themes were identifiedregarding addressed aspects of family caregiving. Two themes referred to aspects addressing the patients’ social network, and included ‘social network structure’ and ‘social network support’. One theme referred to aspectsaddressing coordination of care issues involving family caregiving, referred to as ‘coordination of care’.Conclusions: During discussions nurses mostly addressed practical information on the patients’ social network structure. When specific family caregiving support was addressed, information was limited and nurses did not seem toexplore the nature of the family support. Patients discharge and after care needs were addressed occasionally as aspects of coordination of care. Current nursing policies could be evaluated on nursing and family oriented theories.Implications for education could include mirroring study findings with nurses in a group discussion to enhance their awareness on family caregiving aspects.
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Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents’ own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review.
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Assistive technology supports maintenance or improvement of an individual’s functioning and independence, though for people in need the access to assistive products is not always guaranteed. This paper presents a generic quality framework for assistive technology service delivery that can be used independent of the setting, context, legislative framework, or type of technology. Based on available literature and a series of discussions among the authors, a framework was developed. It consists of 7 general quality criteria and four indicators for each of these criteria. The criteria are: accessibility; competence; coordination; efficiency; flexibility; user centeredness, and infrastructure. This framework can be used at a micro level (processes around individual users), meso level (the service delivery scheme or programme) or at a macro level (the whole country). It aims to help identify in an easy way the main strengths and weaknesses of a system or process, and thus guide possible improvements. As a next step in the development of this quality framework the authors propose to organise a global consultancy process to obtain responses from stakeholders across the world and to plan a number of case studies in which the framework is applied to different service delivery systems and processes in different countries.
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This article draws on Robinson, McNeill and Maruna’s argument (2012) about the adaptability of community sanctions and measures, observed through four distinctive penal narratives, in order to shed light on the regional development of community service in Wroclaw, Poland. While the managerial adaptation of community sanctions is underpinned by an inter-agency cooperation to fulfil the goals of the system, the contemporary rehabilitation iteration has become a toolkit of measures predominantly phrased around risk management, the reparative discourse seeks various means to repair harm, and the punitive orientation represent the turn to desert-based and populist sentencing frameworks. In this article, the first three are reflected upon along with the emerging, restorative adaptation of community sanctions. The last one is added to expand on the findings of previous research, which suggests the viability of the restorative orientation for community service in Poland (Matczak, 2018). A brief discussion of how punishment, probation and restorative justice can be reconciled is followed by the introduction of Polish Probation and the role of probation officers in delivering community service in Poland. Although the penal narratives are visible in the Wrocław model to different degrees and in various combinations, more research is required to evaluate the viability of a progressive orientation to punishment during a gradual optimisation of community orders. Originally published: Anna Matczak, The penal narratives of community sentence and the role of probation: The case of the Wrocław model of community service, European journal of probation (Vol. 13 nr. 1) pp. 72-88. Copyright © 2021year (The Author). DOI: 10.1177/2066220320976105
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Background: Recent transitions in long-term care in the Netherlands have major consequences for community- dwelling older adults. A new paradigm expects them to manage and arrange their own care and support as much as possible. Technology can support this shift. A study has been conducted to explore the needs of community- dwelling frail older adults with regard to an online platform. An existing platform was subsequently modified, based upon these needs, resulting in an online community care platform (OCC-platform) comprising of care, health, and communication functions. The purpose of this platform was to support frail older adults in their independence and functioning, by stimulating self-care and providing reliable information, products and services. Methods: The study used a User-Centred Design. The development processes involved the following steps: Step 1) Identification of the User Requirements. To assess the user requirements, direct observations (N = 3) and interviews (N = 14) were performed. Step 2) Modification of an Existing Online Platform. Based upon Step 1, available online platforms were explored to determine whether an existing useful product was available. Two companies collaborated in modifying such a platform; Step 3) Testing the Modified Platform. A total of 73 older adults were invited to test a prototype of the OCC-platform during 6 months, which comprised of two phases: (1) a training phase; and (2) a testing phase. Results: An iterative process of modifications resulted in an interactive software concept on a Standard PC, containing 11 Functions. The Functions of ‘contacts’, ‘services’ and ‘messaging’, were by far, the most frequently used. The use was at its highest during the first 2 weeks of the testing and then its use steadily declined. The vast majority of the subjects (94%) were positive about the usability of the platform. Only a minority of the subjects (27%) indicated that the platform had added value for them. Conclusion: The overall prospect was that an OCC-platform can contribute to the social participation and the self-management competencies of frail older adults, together with their social cohesion in the community. In order to validate these prospects, further research is needed on the characteristics and the impact of online platforms.
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• The combination of coping with mental health problems and caring for children makes parents vulnerable.• Family-centred practice can help to maintain and strengthen important family relationships, and to identify and enhance the strengths of parents with a mental illness, thus contributing to their recovery.• Parents with mental illness find strength for parenting in several ways. They feel responsible, and this helps them to stay alert while parenting; parenthood also offers a basis for social participation.• Dedication to the parental role provides a focus; parents develop strengths and skills as they find a balance between attending to their own lives and caring for their children, and parenting prompts them to find adequate sources of support and leads to a valued identity.• Practitioners can support parents with mental health problems to set and address parenting related goals.
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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.
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Most multi‑problem young adults (18–27 years old) have been exposed to childhood maltreatment and/or have been involved in juvenile delinquency and, therefore, could have had Child Protection Service (CPS) interference during childhood. The extent to which their childhood problems persist and evolve into young adult‑ hood may differ substantially among cases. This might indicate heterogeneous profiles of CPS risk factors. These pro‑ files may identify combinations of closely interrelated childhood problems which may warrant specific approaches for problem recognition and intervention in clinical practice. The aim of this study was to retrospectively identify distinct statistical classes based on CPS data of multi‑problem young adults in The Netherlands and to explore whether these classes were related to current psychological dysfunctioning and delinquent behaviour. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/).
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Background: Online contacts with a health professional have the potential to support family caregivers of people with dementia. Objective: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention—involving among others personal email contacts with a dementia nurse—was compared with online interventions without these email contacts. Methods: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers’ self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers’ reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. Results: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference –0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over http://www.jmir.org/2020/2/e13001/ J Med Internet Res 2020 | vol. 22 | iss. 2 | e13001 | p. 1 (page number not for citation purposes) JOURNAL OF MEDICAL INTERNET RESEARCH Huis in het Veld et al XSL•FO RenderX time (difference –4.21, P=.09) and at T1 (difference –4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. Conclusions: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required.
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