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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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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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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The Sport Empowers Disabled Youth 2 (SEDY2) project encourages inclusion and equal opportunities in sport for youth with a disability by raising their sports and exercise participation in inclusive settings. The SEDY2 Inclusion Handbook is aimed at anybody involved in running or working in a sport club, such as a volunteer, a coach, or a club member. The goal of the handbook is to facilitate disability inclusion among mainstream sport providers by sharing SEDY2 project partners’ best practices and inclusive ideas.
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Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity levels of persons with PIMD and to analyze these heart rate patterns according to participant characteristics, observed level of activity, days, and time of day. The heart rate patterns of 24 participants with PIMD were measured continuously using a heart rate monitor for 8 h·d for a period of 6 days. Physical activity levels were measured with questionnaires. Data were analyzed using multilevel analysis. The results indicate that the participants use only 32% of their heart rate reserve over 6 days. The intensity of heart rate reserve ranged from 1 to 62%. On a given day, wide ranges in heart rates between participants and within persons were observed. Between days, only small ranges in the heart rate were found. The participants could be grouped into 4 classes according to their heart rate. In addition, factors such as time of day, physical activity, and age are significantly related to heart rate patterns. In conclusion, this study is an important first step in exploring activity patterns based on heart rate patterns in persons with PIMD. The participants used relatively small fractions of their heart rate reserves. Time of day and age appear to have a considerable influence on heart rate patterns. The observed classes in heart rate patterns suggest that other probably more personal and psychosocial factors have significant influences on heart rate patterns, as well
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Objective: Despite the common occurrence of lower levels of physical activity and physical fitness in youth with spina bifida (SB) who use a wheelchair, there are very few tests available to measure and assess these levels. The purpose of this study was to determine reliability and the physiologic response of the 6-minute push test (6MPT) in youth with SB who self-propel a wheelchair. Methods: In this reliability and observational study, a sample of 53 youth with SB (5-19 years old; mean age = 13 years 7 months; 32 boys and 21 girls) who used a wheelchair performed 2 exercise tests: the 6MPT and shuttle ride test. Heart rate, minute ventilation, respiratory exchange ratio, and oxygen consumption were measured using a calibrated mobile gas analysis system and a heart rate monitor. For reliability, intraclass correlation coefficients (ICCs), SE of measurement, smallest detectable change for total covered distance, minute work, and heart rate were calculated. Physiologic response during the 6MPT was expressed as percentage of maximal values achieved during the shuttle ride test. Results: The ICCs for total distance and minute work were excellent (0.95 and 0.97, respectively), and the ICC for heart rate was good (0.81). The physiologic response during the 6MPT was 85% to 89% of maximal values, except for minute ventilation (70.6%). Conclusions: For most youth with SB who use a wheelchair for mobility or sports participation, the 6MPT is a reliable, functional performance test on a vigorous level of exercise. Impact: This is the first study to investigate physiologic response during the 6MPT in youth (with SB) who are wheelchair using. Clinicians can use the 6MPT to evaluate functional performance and help design effective exercise programs for youth with SB who are wheelchair using. Keywords: 6-minute push test; adolescent; disabled children; spinal diseases; wheelchairs.
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In het WHEELS-project wordt de eerste leefstijlapp voor rolstoelgebruikers met een dwarslaesie of beenamputatie ontwikkeld. Doel is dat zij ook ná de revalidatiefase kunnen werken aan hun vitaliteit en een gezonde leefstijl. In dit artikel wordt beschreven hoe de app in 6 stappen is ontwikkeld en worden de eerste resultaten van een gebruikersstudie samengevat.
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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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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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In recent years video game consoles, such as the Nintendo Wii™ and the Microsoft Kinect™, have been introduced into residential facilities. This paper presents a review of current studies documenting the benefits and detriments the Wii could have on adults aged 60 years and over in residential facilities, concentrating on the common uses of the Wii in care facilities: maintaining physical fitness, promoting mental well-being, encouraging social interaction and both physical and mental rehabilitation. Furthermore, this paper discusses the potential use of the Microsoft Kinect in care for older persons. The Wii can have a positive impact on the physical and mental health of older adults living in care facilities, but additional work should still be conducted, including assessing the use of games outside of Wii Sports and Wii Fit and possible non-gaming application of the Wii in care for older adults. Results for the Wii display potential for use of the Kinect in care facilities but further exploration is required to assess the potential physical impact and interaction viability.
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