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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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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