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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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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Stimulating physical activity behaviour in persons with a physical disability is important, especially after discharge from rehabilitation. A tailored counselling programme covering both the period of the rehabilitation treatment and the first months at home seems on the average effective. However, a considerable variation in response is observed in the sense that some patients show a relevant beneficial response while others show no or only a small response on physical activity behaviour. The Rehabilitation, Sports and Active lifestyle (ReSpAct) study aims to estimate the associations of patient and programme characteristics with patients' physical activity behaviour after their participation in a tailored counselling programme. METHODS AND ANALYSIS: A questionnaire-based nationwide longitudinal prospective cohort study is conducted. Participants are recruited from 18 rehabilitation centres and hospitals in The Netherlands. 2000 participants with a physical disability or chronic disease will be followed during and after their participation in a tailored counselling programme. Programme outcomes on physical activity behaviour and patient as well as programme characteristics that may be associated with differences in physical activity behaviour after programme completion are being assessed. Data collection takes place at baseline and 14, 33 and 52 weeks after discharge from rehabilitation. ETHICS AND DISSEMINATION: The study protocol has been approved by the Medical Ethics Committee of the University Medical Centre Groningen and at individual participating institutions. All participants give written informed consent. The study results will provide new insights into factors that may help explain the differences in physical activity behaviour of patients with a physical disability after they have participated in the same physical activity and sports stimulation programme. Thereby, it will support healthcare professionals to tailor their guidance and care to individual patients in order to stimulate physical activity after discharge in a more efficient and effective way.
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