Abstract:
PURPOSE:Many adults aged less than 65 years with high-care needs resulting from acquired disabilities are unable to access age-appropriate housing and support, and reside in residential aged care or live with family members who may struggle to navigate the disability support system. This qualitative study aimed to investigate the experiences of adults with high-care needs and their family members regarding pathways related to housing and support. METHOD:Two in-depth semi-structured interviews were conducted six months apart with 21 people aged 18 to 65 with high-care needs of varying etiology and living in different housing settings. Nineteen family members involved in decision-making about housing and supports were also interviewed. RESULTS:Thematic data analysis yielded five themes: (1) Traveling in different directions; (2) "the fight, the battle and the war"; (3) willing but wanting; (4) uncertainty and vulnerability; and (5) redefining social roles and relationships. CONCLUSIONS:Current disability policy is not satisfying the housing and support requirements of adults with high-care needs and their families. The findings provide rigorous, empirical evidence which indicate the urgent need to improve access to affordable, individualized housing and support packages, including financial, practical and informational support for family members involved in caring roles. Implications for Rehabilitation Individual preferences are an important consideration in housing and support arrangements for younger people with high-care needs alongside needs-based solutions. Individualized funding approaches may provide flexibility of care and choice in housing and support for people with disability. Family members willingly provide substantial informal care, support and advocacy for younger people with high needs but perceive their role as a constant "battle". Payment of family members in recognition of caring work was perceived as a solution to relieve family hardship and ensure optimal care.
journal_name
Disabil Rehabiljournal_title
Disability and rehabilitationauthors
McIntyre D,Fleming J,Foster M,Tweedy Sdoi
10.1080/09638288.2016.1212108subject
Has Abstractpub_date
2017-09-01 00:00:00pages
1829-1839issue
18eissn
0963-8288issn
1464-5165journal_volume
39pub_type
杂志文章abstract:INTRODUCTION:This study aimed at exploring the perceived benefits and drawbacks of practicing tai chi, an alternative therapy that can be implemented in the community, as part of upper-limb rehabilitation following stroke. METHODOLOGY:Semistructured interviews were carried out with participants with chronic stroke (>6...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2016.1194900
更新日期:2017-06-01 00:00:00
abstract:PURPOSE:The purpose of this study was to develop an ICF core set for post-stroke disability assessment and verification of bio-psycho-social problems. METHOD:Using the Delphi method, a consensus process was conducted. In total, 24 multidisciplinary experts from different institutions completed the consensus process. T...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2011.638033
更新日期:2012-01-01 00:00:00
abstract:PURPOSE:The main focus of Pain Neuroscience Education is around changing patients' pain perceptions and minimizing further medical care. Even though Pain Neuroscience Education has been studied extensively, the experiences of patients regarding the Pain Neuroscience Education process remain to be explored. Therefore, t...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1327990
更新日期:2018-09-01 00:00:00
abstract::Purpose: Altered three-dimensional (3D) joint kinematics can contribute to shoulder pathology, including post-stroke shoulder pain. Reliable assessment methods enable comparative studies between asymptomatic shoulders of healthy subjects and painful shoulders of post-stroke subjects, and could inform treatment plannin...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2018.1451924
更新日期:2019-07-01 00:00:00
abstract:PURPOSE:This paper describes the types of difficulties older people have with their home environments and the factors associated with having such difficulties. METHOD:Data were used from 296 study participants of the University at Buffalo's Consumer Assessments Study that examines the home modification needs and envir...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638280110062167
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abstract:PURPOSE:This paper presents the evaluation of the following psychometric properties of the Modified Rivermead Mobility Index (MRMI): face/content validity, responsiveness, test-retest reliability, inter-rater reliability and internal consistency. This mobility scale represents a further development of the Rivermead Mob...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638280050207884
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abstract::Purpose: To determine the reliability, responsiveness, validity, and agreement of handheld dynamometry, relative to electromechanical dynamometry, for assessing quadriceps strength surrounding total knee arthroplasty.Methods: Fifty-six patients (48% female) undergoing total knee arthroplasty were assessed prior to sur...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2020.1730454
更新日期:2020-03-06 00:00:00
abstract:PURPOSE:The purpose of this study was to identify what acute care variables and/or perceived recovery factors could predict decreased participation in physical activities post-mild stroke. METHODS:Secondary analysis of persons with mild stroke. Participants were split into two groups based on the percentage of high-de...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2012.720635
更新日期:2013-07-01 00:00:00
abstract::Purpose: The aim was to explore personal experiences of pain in people with motor neuron disease.Materials and methods: Sixteen participants were individually interviewed on one occasion concerning their experiences of presentation, consequences, and management of pain. Qualitative content analysis with researcher tri...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2018.1555615
更新日期:2020-07-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2011.615880
更新日期:2012-01-01 00:00:00
abstract::The subacute phase of low back pain has been termed as the "golden hour" to intervene to prevent work disability. This notion is based on the literature up to 2001 and is limited to back pain. In this narrative review, we examined whether the current literature indicate an optimal time for return to work (RTW) interve...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2018.1503735
更新日期:2020-02-01 00:00:00
abstract:PURPOSE:The aim of this study was to involve older people and physiotherapists in the development of acceptable strategies to promote uptake and adherence with an exercise-based falls prevention programme. METHOD:Focus groups were conducted with older people attending a regional falls and syncope service (3 groups, to...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2013.797507
更新日期:2014-01-01 00:00:00
abstract:PURPOSE:To verify the applicability, reproducibility and validity of the SCIM III patients with non-traumatic spinal cord injury. METHOD:The cross-sectional study included 30 patients (66% females; 41.5 ± 14.7 yo) with non-traumatic spinal cord injury of any etiology. Subjects were subjected by computerized gait analy...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2015.1129454
更新日期:2016-11-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/096382899297756
更新日期:1999-04-01 00:00:00
abstract:PURPOSE:To describe cost-effectiveness of the Physical Activity in Rheumatoid Arthritis (PARA) study intervention. METHOD:Costs were collected and estimated retrospectively. Cost-effectiveness was calculated based on the intervention cost per patient with respect to change in health status (EuroQol global visual analo...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,多中心研究,随机对照试验
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更新日期:2015-01-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2010.503256
更新日期:2011-01-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2012.751135
更新日期:2013-09-01 00:00:00
abstract::Purpose: The study aim was to analyze whether ambulatory therapy of chronic stroke patients contains elements that specifically address "Activity and participation", and to what extent participation as a major goal in rehabilitation is realized in ambulatory care.Method: Qualitative and quantitative content analysis o...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2018.1503732
更新日期:2020-02-01 00:00:00
abstract:PURPOSE:To examine the impact of neonatal brachial plexus palsy (NBPP) on societal participation of adolescents and adults. METHODS:This cross-sectional study was conducted among patients with NBPP, aged ≥16 years, who had visited our NBPP clinic. Patients completed questions on the influence of NBPP on their choices ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1380717
更新日期:2018-12-01 00:00:00
abstract:PURPOSE:The utility of self-management with people from minority ethnic backgrounds has been questioned, resulting in the development of culturally specific tools. Yet, the use of stroke specific self-management programmes is underexplored in these high risk groups. This article presents the experience of stroke therap...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2014.904936
更新日期:2014-01-01 00:00:00
abstract::Purpose: This study had two purposes: to develop an instrument for assessing family members' caregiving needs before their older relative's knee joint-replacement surgery and to determine instrument psychometrics. Methods: In phase 1 of this validation study, we generated 34 items based on previous interviews with 138...
journal_title:Disability and rehabilitation
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doi:10.1080/09638288.2019.1643414
更新日期:2019-08-07 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1362708
更新日期:2018-12-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2010.511689
更新日期:2010-01-01 00:00:00
abstract:PURPOSE:Currently, dominant web accessibility standards do not respect disability as a complex and culturally contingent interaction; recognizing that disability is a variable, contrary and political power relation, rather than a biological limit. Against this background there is clear scope to broaden the ways in whic...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
doi:10.3109/09638288.2014.938178
更新日期:2014-01-01 00:00:00
abstract::The study evaluated the sensitivity of a newly devised scale for measurement of emotional reactions and depression, on a group of 25 stroke patients, with right or left hemisphere damage, and 15 age-matched controls. Four clusters were examined: communication, expression of emotions, sense of self and physical or psyc...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638289709166828
更新日期:1997-02-01 00:00:00
abstract:PURPOSE:Duchenne muscular dystrophy (DMD) is a rapidly progressive neuromuscular disorder causing weakness of the skeletal, respiratory, cardiac and oropharyngeal muscles with up to one third of young men reporting difficulty swallowing (dysphagia). Recent studies on dysphagia in DMD clarify the pathophysiology of swal...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2015.1111434
更新日期:2016-10-01 00:00:00
abstract:PURPOSE:This article seeks to outline the design and implementation of cognitive behavioural pain management programmes (PMPs) for people with spinal cord injury (SCI), illustrated by the experiences in a recently evaluated programme (SpinalADAPT). It is hoped that this will provide an easily accessible account of the ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2010.524276
更新日期:2011-01-01 00:00:00
abstract:PURPOSE:To conduct a systematic review of the quality and extent of psychometric examinations of disease-specific outcome measures for complex regional pain syndrome (CRPS). METHODS:Health database searches yielded 23 papers covering 19 assessment instruments. Each article was scored for quality using a 12-item struct...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
doi:10.3109/09638288.2011.626835
更新日期:2012-01-01 00:00:00
abstract::Purpose: Medically underserved adults with spinal cord injury (SCI) remain at high risk of incurring medically serious pressure injuries even after receiving education in prevention techniques. The purpose of this research is to identify circumstances leading to medically serious pressure injury development in medical...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2018.1552328
更新日期:2020-07-01 00:00:00
abstract:PURPOSE:To explore factors influencing physical activity (PA) reported by people living in rural/semi-rural communities in the south of England post-stroke, and to understand relationships between personal, interpersonal and environmental barriers and self-reported levels of PA. METHOD:A survey was mailed to patients ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2016.1258437
更新日期:2018-02-01 00:00:00