BACKGROUND: Due to complex processes of implementation of innovations aimed at persons with intellectual disabilities in healthcare organizations, lifestyle interventions are not used as intended or not used at all. In order to provide insight into determinants influencing this implementation, this study aims to ascertain if the Measurement Instrument for Determinants of Innovations (MIDI) is useful for objectively evaluating implementation.METHOD: With semi-structured interviews, data concerning determinants of implementation of lifestyle interventions were aggregated. These data were compared to the determinants questioned in the MIDI. Adaptations to the MIDI were made in consultation with the author of the MIDI.RESULTS: All determinants of the MIDI, except for that concerning legislation and regulations, were represented in the interview data. Determinants not represented in the MIDI were the level of intellectual disabilities, suitability of materials and physical environment, multi-levelness of interventions and several persons who could be involved in the intervention, such as direct support persons (DSPs), a therapist or family, and the communication between these involved persons.CONCLUSION: The present authors suggested making adjustments to existing questions of the MIDI in order to improve usability for deployment in organizations that provide care to persons with intellectual disabilities. The adjustments need to be tested with other interventions.
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Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
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Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate motions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.
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Aim: There is often a gap between the ideal of involving older persons iteratively throughout the design process of digital technology, and actual practice. Until now, the lens of ageism has not been applied to address this gap. The goals of this study were: to voice the perspectives and experiences of older persons who participated in co-designing regarding the design process; their perceived role in co-designing and intergenerational interaction with the designers; and apparent manifestations of ageism that potentially influence the design of digital technology. Methods: Twenty-one older persons participated in three focus groups. Five themes were identified using thematic analysis which combined a critical ageism ‘lens’ deductive approach and an inductive approach. Results: Ageism was experienced by participants in their daily lives and interactions with the designers during the design process. Negative images of ageing were pointed out as a potential influencing factor on design decisions. Nevertheless, positive experiences of inclusive design pointed out the importance of “partnership” in the design process. Participants defined the “ultimate partnership” in co-designing as processes in which they were involved from the beginning, iteratively, in a participatory approach. Such processes were perceived as leading to successful design outcomes, which they would like to use, and reduced intergenerational tension. Conclusions: This study highlights the potential role of ageism as a detrimental factor in how digital technologies are designed. Viewing older persons as partners in co-designing and aspiring to more inclusive design processes may promote designing technologies that are needed, wanted and used.
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Implementation of the United Nations Convention on the rights of persons with disabilities (UN CRPD) requires countries to harmonise their legislative frameworks with it. This paper investigates the national legislative frameworks of four Asian countries to see the extent to which they provide support services in accordance with Article 19 of the UN CRPD. The UN CRPD requires persons with disabilities to have access to and choice and control over support services. To analyse the policy alignment with the UN CRPD, an analytical framework based on the Capability Approach (CA) was developed. The results show that most countries address support services, including assistive devices, only from the perspective of a social security measure for persons with disabilities living in poverty, failing to uphold the rights of those not meeting those eligibility criteria. However, while support services are inseparably linked to social security, they also are a right for persons with disabilities. Therefore, a paradigm shift is required in the approach of support services and the distributive systems of countries, from one that addresses persons with disabilities as those requiring care considered a burden, to one that considers them rights holders with equal opportunities, for which, support services are a pre-requisite.
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Person-centeredness refers to an individually-tailored, holistic approach to meeting a person's needs and recognizing the client as an expert and active participant in the rehabilitation process. This article focuses on a study conducted in Estonia to analyze the perceptions of persons with disabilities about person-centeredness by exploring their experiences about received disability services and participation in an initial rehabilitation needs assessment process. Twelve in-depth interviews were conducted in different regions of Estonia with persons with disability. Data were analyzed using qualitative thematic analysis. The aim of the research project (2010–2015) was to design a person-centered initial rehabilitation needs assessment instrument. Results revealed that in describing their experiences, study participants identified important components of person-centeredness: (1) understanding service users and meeting their individual needs, (2) connecting and partnering with service users, (3) providing appropriate information, and (4) addressing issues of power and empowerment. If these components are included, service users are more likely to become motivated to consider their situation and take more control of their lives. These findings may be of relevance for countries considering needs-based referrals to rehabilitation services and refocusing disability services using a person-centered approach
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This project builds upon a collaboration which has been established since 15 years in the field of social work between teachers and lecturers of Zuyd University, HU University and Elte University. Another network joining this project was CARe Europe, an NGO aimed at improving community care throughout Europe. Before the start of the project already HU University, Tallinn Mental Health Centre and Kwintes were participating in this network. In the course of several international meetings (e.g. CARe Europe conference in Prague in 2005, ENSACT conferences in Dubrovnik in 2009, and Brussels in April 2011, ESN conference in Brussels in March 2011), and many local meetings, it became clear that professionals in the social sector have difficulties to change current practices. There is a great need to develop new methods, which professionals can use to create community care.
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In the dynamic environment of increasing regulations, increasing patient demand, decentralization of budgets and enforcement of efficiency, small sized healthcare institutions in the Netherlands are having a difficult time. Although these service providers are usually capable of flexibly delivering healthcare, the investment and overhead for implementing and executing on required quality management standards like ISO 9001 is difficult. In this paper we construct a method for the implementation of an IT-enabled quality management system for small sized healthcare institutions, which is applied through case study. The case organisation provides intra- and extramural care for mentally handicapped persons and young adults with a psychiatric disorder. The quality management system implementation is based on 1) a lightweight IT infrastructure (based at a secure data centre and accessible through remote login) implying secure storage of patients' medical and personal information. Furthermore, the Deming (Deming, 1982) cycle enabled processes and protocols are 2) described in an e-handbook and prototyped via an open source process management system which supports the quality regulation demanded for providing care to patients. The case study supports the validity of our method and the fact that small sized healthcare institutions are able to execute their care while adhering to ISO 9001-like standards, with limited initial costs and relatively low cost of ownership
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Victim-offender contact has been studied extensively in prisons, but research on contact between victims and mentally disordered offenders in forensic mental health settings is lacking. Therefore, an exploratory study was conducted on contact between victims and offenders in four Dutch forensic psychiatric hospitals. These offenders have committed serious (sexually) violent offenses, for which they could not be held fully responsible due to severe psychopathology. During the mandatory treatment, it is possible for offenders and their victims to engage in contact with each other if both parties agree to this. To explore the conditions under which this contact is suitable, we interviewed 35 social workers about their experiences in 57 cases from four Dutch forensic psychiatric hospitals. Findings demonstrated that, according to the social workers, no type of offense or psychopathology were obvious exclusion criteria for victim-offender contact. Social workers described offenders' problem awareness, stable psychiatric condition, and ability to keep to agreements as important factors that enable victim-offender contact. Implications and suggestions for future research are provided.
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At present, persons with dementia and their family caregivers in the Netherlands are not adequately supported to modify their dwellings to match their personal needs. To facilitate aging-in-place for persons with dementia, a website was designed. The website was designed with persons with dementia and their spouses. In consultation sessions existing websites were discussed. Based on this discussion, a demonstration website was created and then discussed with and judged by the participants. Visits to the website were monitored using Google Analytics.
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