Abstract:
:Purpose: Much of the support required to live in the community post-traumatic brain injury (TBI) is provided by informal carers. Understanding the nature of caregiving work is important to better support informal carers. This study explored the work being performed by informal carers, and factors impacting on their capacity to manage the workload.Method: Participants comprised 21 dyads each consisting of an adult with moderate to severe TBI and a nominated carer. Thematic analysis was done on semi-structured interviews with injured participants and carers during the 12-month period post-discharge from hospital.Results: Results revealed two main themes and eight subcategories: (1) The nature of informal care: describing informal care management work, (personal assistant work; care provider work; family support work; and emotional self-regulation work), and (2) Mediating factors that impacted people's capacity to manage workload (carer intrinsic factors; injured person characteristics; family circumstances; and changes over time.)Conclusion: Rehabilitation providers supporting people following TBI need to focus on broad family contexts; understand the nature of work being undertaken, and carer capacity to carry out that work; and be aware of the unique and changing circumstances of families to better support informal carers.Implications for rehabilitationRehabilitation services need to focus on broad family contexts rather than focus on the injured individual in isolation.Understanding the nature of the work being undertaken by informal carers, and their capacity to carry out that work is important when considering supports.Rehabilitation professionals need to consider and respond to the impact that changing circumstances have on the capacity of informal care networks to manage care workload.
journal_name
Disabil Rehabiljournal_title
Disability and rehabilitationauthors
McIntyre M,Ehrlich C,Kendall Edoi
10.1080/09638288.2018.1508511subject
Has Abstractpub_date
2020-03-01 00:00:00pages
754-762issue
6eissn
0963-8288issn
1464-5165journal_volume
42pub_type
杂志文章abstract:PURPOSE:To present a conceptual model of optimal participation in recreational and leisure activities for children with physical disabilities. METHODS:The conceptualization of the model was based on review of contemporary theories and frameworks, empirical research and the authors' practice knowledge. A case scenario ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2013.863392
更新日期:2014-01-01 00:00:00
abstract:PURPOSE:To identify environmental factors associated with participation and gain an in-depth understanding of relationships between environmental factors and participation among people with spinal cord injury. METHOD:Six focus groups (n= 30) with individuals with spinal cord injury were conducted. Two independent code...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1327991
更新日期:2018-09-01 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:Appropriate wheelchairs for basic mobility needs are still not commonly available in low-income countries, although several organizations are working toward this goal. After basic mobility is secured it is important to provide more diverse assistive technology to allow people with disabilities to more completel...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638280701240714
更新日期:2007-06-15 00:00:00
abstract:PURPOSE:This paper explores the perception of quality of life (QOL) of four men following traumatic brain injury (TBI) and the effects of their injury on family, social and working life. METHOD:It also highlights their on-going difficulties 6, 8, 10 and 11 years post injury and that long term support is not available ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/0963828021000058503
更新日期:2003-07-08 00:00:00
abstract::Purpose Using a network meta-analysis approach, our study aims to develop a ranking of the six surgical procedures, that is, Plate, titanium elastic nail (TEN), tension band wire (TBW), hook plate (HP), reconstruction plate (RP) and Knowles pin, by comparing the post-surgery constant shoulder scores in patients with c...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,meta分析,评审
doi:10.3109/09638288.2016.1140827
更新日期:2017-01-01 00:00:00
abstract:PURPOSE:To adapt the American PEDI into a Dutch version, and to establish the content validity of this pediatric functional status instrument. METHODS:The adaptation process was based on current scientific guidelines in the field of cross-cultural research. Thirty-one allied health professionals completed a validity q...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638280110076036
更新日期:2002-03-20 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1347209
更新日期:2018-11-01 00:00:00
abstract:PURPOSE:Choosing an appropriate outcome measure for the assessment of balance among people with cerebellar ataxia is currently challenging as no guidelines are available. There is a need for further investigation with clinical experts in order to derive a set of standardized outcome measures with high clinical utility....
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2014.913709
更新日期:2015-01-01 00:00:00
abstract:PURPOSE:Restorative sleep is clearly linked with well-being in youth with chronic health conditions. This review addresses the methodological quality of non-pharmacological sleep intervention (NPSI) research for youth with chronic health conditions. METHOD:The Guidelines for Critical Review (GCR) and the Effective Pub...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
doi:10.3109/09638288.2012.723788
更新日期:2013-07-01 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
abstract:PURPOSE:We report two cases of perioperative rehabilitation for abdominal cancer patients aged 75 years and older with severe chronic obstructive pulmonary disease (COPD). CASE DESCRIPTION:Case 1 was a 75-year-old man with COPD and 52-year history of smoking 30 cigarettes per day. The patient was diagnosed with gastri...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2011.591890
更新日期:2012-01-01 00:00:00
abstract::Purpose: To ascertain stakeholders' agreement and disagreement about inter-professional collaboration (IPC) when supporting the child with a developmental language disorder (DLD) in school.Materials and methods: Two rounds of an online Delphi survey were undertaken with a purposive sample of 26 participants (researche...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2020.1725154
更新日期:2020-02-17 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2018.1479455
更新日期:2019-11-01 00:00:00
abstract::Purpose: This study compared Internet use post-stroke in people with aphasia (n = 25) and without aphasia (n = 17). The purpose was to understand how people with aphasia were using the Internet and to investigate the impact of aphasia on their use.Materials and methods: A face-to-face supported questionnaire explored ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2019.1580320
更新日期:2020-10-01 00:00:00
abstract:PURPOSE:To explore the perceptions of people with severe knee osteoarthritis and increased cardiovascular risk about participating in a walking program. METHODS:Qualitative study using semistructured interviews for people with severe knee osteoarthritis and increased cardiovascular risk who participated in a 12-week w...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1408710
更新日期:2019-04-01 00:00:00
abstract:PURPOSE:To validate a shortened version of the Participation Scale (P-scale) that will be quicker to use and to describe the factor structure found in the P-scale data in various study samples. METHODS:A large multi-country and multi-cultural database was compiled consisting of 5125 respondents. Item analysis, explana...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2012.656793
更新日期:2012-01-01 00:00:00
abstract::Objective: Despite the growing evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), there has been a strong impetus to tackle the illness utilizing a biopsychosocial model. However, many sufferers of this disabling condition report distress and dissatis...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
doi:10.1080/09638288.2018.1481149
更新日期:2019-12-01 00:00:00
abstract:PURPOSE:To assess quality of life (QoL) in two groups of patients with long-term musculoskeletal pain with and without psychiatric co-morbidity and to compare them with a reference group of normative controls. The patients in both study groups were sick-listed full or part time for 3 months or more. METHOD:The patient...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638281003734383
更新日期:2010-01-01 00:00:00
abstract:PURPOSE:The 6-Min Walking Test (6MWT) is widely used to measure the performance in various chronic conditions, such as in obese subjects. Reference equations for predicting distance walked during 6MWT specifically in adult obese subjects are not available. The aim of the paper is to establish reference values for 6MWT ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2012.726313
更新日期:2013-07-01 00:00:00
abstract::Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care.Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2019.1595181
更新日期:2020-12-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638280903168515
更新日期:2010-01-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638289309166006
更新日期:1993-07-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
doi:10.3109/09638288.2012.690819
更新日期:2013-02-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1401675
更新日期:2019-03-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
doi:10.3109/09638288.2013.845257
更新日期:2014-01-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2016.1145258
更新日期:2019-03-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
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更新日期:2008-01-01 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
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更新日期:2006-02-15 00:00:00
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journal_title:Disability and rehabilitation
pub_type: 临床试验,杂志文章
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更新日期:2008-01-01 00:00:00