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Improving physical mobility is critical for wellbeing in people with severe impairment after an acquired brain injury: a qualitative study

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Objectives: 1) Understand the experience, and personal significance, of mobility skills for people with severe mobility impairment after brain injury 2) Determine how these evolve over time. Design: Longitudinal qualitative study. Participants: Ten adults, unable to walk at 8 weeks post-injury. Methods: Participants were interviewed up to three times, at three-month intervals. Semi-structured interviews were transcribed and coded independently by two researchers, then themes developed. Codes were then reviewed longitudinally. Results: Initial analysis derived six themes: I lost everything overnight; It feels frustrating; Walking is absolutely the most important; I need help; I'm making progress; I can start doing things that I used to be able to do. Participants described overwhelming losses, with loss of mobility affecting many aspects of life. All participants described progress other than walking that was critical for their wellbeing, including assisted standing and transfers without a lifter. Themes from longitudinal analyses: My losses softened by progress; Walking means freedom; Control helps adjustment happen; Challenges keep coming. Over time, participants valued greater control within their lives and progress with mobility was key. Conclusion: Participants saw mobility as crucial to recovering control of life. Mobility achievements other than independent walking matter to individuals after brain injury.

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Article
Background: Evidence from systematic reviews demonstrates that multi-disciplinary rehabilitation is effective in the stroke population, in which older adults predominate. However, the evidence base for the effectiveness of rehabilitation following acquired brain injury (ABI) in younger adults has not been established, perhaps because this scenario presents different methodological challenges in research. Objectives: To assess the effects of multi-disciplinary rehabilitation following ABI in adults 16 to 65 years of age. Search methods: We ran the most recent search on 14 September 2015. We searched the Cochrane Injuries Group Specialised Register, The Cochrane Library, Ovid MEDLINE(R), Ovid MEDLINE(R) In-Process & Other Non-Indexed Citations, Ovid MEDLINE(R) Daily and Ovid OLDMEDLINE(R), Embase Classic+Embase (OvidSP), Web of Science (ISI WOS) databases, clinical trials registers, and we screened reference lists. Selection criteria: Randomised controlled trials (RCTs) comparing multi-disciplinary rehabilitation versus routinely available local services or lower levels of intervention; or trials comparing an intervention in different settings, of different intensities or of different timing of onset. Controlled clinical trials were included, provided they met pre-defined methodological criteria. Data collection and analysis: Three review authors independently selected trials and rated their methodological quality. A fourth review author would have arbitrated if consensus could not be reached by discussion, but in fact, this did not occur. As in previous versions of this review, we used the method described by Van Tulder 1997 to rate the quality of trials and to perform a 'best evidence' synthesis by attributing levels of evidence on the basis of methodological quality. Risk of bias assessments were performed in parallel using standard Cochrane methodology. However, the Van Tulder system provided a more discriminative evaluation of rehabilitation trials, so we have continued to use it for our primary synthesis of evidence. We subdivided trials in terms of severity of brain injury, setting and type and timing of rehabilitation offered. Main results: We identified a total of 19 studies involving 3480 people. Twelve studies were of good methodological quality and seven were of lower quality, according to the van Tulder scoring system. Within the subgroup of predominantly mild brain injury, 'strong evidence' suggested that most individuals made a good recovery when appropriate information was provided, without the need for additional specific interventions. For moderate to severe injury, 'strong evidence' showed benefit from formal intervention, and 'limited evidence' indicated that commencing rehabilitation early after injury results in better outcomes. For participants with moderate to severe ABI already in rehabilitation, 'strong evidence' revealed that more intensive programmes are associated with earlier functional gains, and 'moderate evidence' suggested that continued outpatient therapy could help to sustain gains made in early post-acute rehabilitation. The context of multi-disciplinary rehabilitation appears to influence outcomes. 'Strong evidence' supports the use of a milieu-oriented model for patients with severe brain injury, in which comprehensive cognitive rehabilitation takes place in a therapeutic environment and involves a peer group of patients. 'Limited evidence' shows that specialist in-patient rehabilitation and specialist multi-disciplinary community rehabilitation may provide additional functional gains, but studies serve to highlight the particular practical and ethical restraints imposed on randomisation of severely affected individuals for whom no realistic alternatives to specialist intervention are available. Authors' conclusions: Problems following ABI vary. Consequently, different interventions and combinations of interventions are required to meet the needs of patients with different problems. Patients who present acutely to hospital with mild brain injury benefit from follow-up and appropriate information and advice. Those with moderate to severe brain injury benefit from routine follow-up so their needs for rehabilitation can be assessed. Intensive intervention appears to lead to earlier gains, and earlier intervention whilst still in emergency and acute care has been supported by limited evidence. The balance between intensity and cost-effectiveness has yet to be determined. Patients discharged from in-patient rehabilitation benefit from access to out-patient or community-based services appropriate to their needs. Group-based rehabilitation in a therapeutic milieu (where patients undergo neuropsychological rehabilitation in a therapeutic environment with a peer group of individuals facing similar challenges) represents an effective approach for patients requiring neuropsychological rehabilitation following severe brain injury. Not all questions in rehabilitation can be addressed by randomised controlled trials or other experimental approaches. For example, trial-based literature does not tell us which treatments work best for which patients over the long term, and which models of service represent value for money in the context of life-long care. In the future, such questions will need to be considered alongside practice-based evidence gathered from large systematic longitudinal cohort studies conducted in the context of routine clinical practice.
Article
The objective of this systematic review of qualitative studies was to report and synthesise the perspectives, experiences and preferences of stroke survivors undertaking inpatient physical rehabilitation. MEDLINE, CINAHL, Embase and PsycINFO were searched from database inception to 2014. Reference lists of relevant publications were searched. All languages were included. Qualitative studies reporting stroke survivors' experiences of inpatient stroke rehabilitation were selected independently by two reviewers. The search yielded 3039 records; 95 full text publications were assessed for eligibility and 32 documents (31 studies) were finally included. Comprehensiveness and explicit reporting were assessed independently by two reviewers using the COREQ framework. Discrepancies were resolved by consensus. Data regarding characteristics of the included studies were extracted by one reviewer, tabled, and checked for accuracy by another reviewer. All text reported in studies' results sections were entered into qualitative data management software for analysis. Extracted texts were inductively coded and analysed in three phases using thematic synthesis. Nine interrelated analytical themes, with descriptive subthemes, were identified that related to issues of importance to stroke survivors: physical activity is valued; bored and alone; patient-centred therapy; recreation is also rehabilitation; dependency and lack of control; fostering autonomy; power of communication and information; motivation needs nurturing; fatigue can overwhelm. The thematic synthesis provides new insights into stroke survivors' experiences of inpatient rehabilitation. Negative experiences were reported in all studies and include disempowerment, boredom, and frustration. Rehabilitation could be improved by increasing activity within formal therapy and in free time, fostering patients' autonomy through genuinely patient-centred care, and more effective communication and information. Future stroke rehabilitation research should take into account the experiences and preferences of stroke survivors. Copyright © 2015 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
Article
AimTo explore the narratives created by non-injured family members in relation to themselves and their family in the first year after head injury.BackgroundA head injury is a potentially devastating injury. The family responds to this injury by supporting the individual and their recovery. While the perspective of individual family members has been well documented, there is growing interest in how the family as a whole makes sense of their experiences and how these experiences change over time.DesignLongitudinal narrative case study using unstructured in-depth interviews.Methods Data were collected during an 18-month period (August 2009–December 2010). Nine non-injured family members from three families were recruited from an acute neurosurgical ward and individual narrative interviews were held at one, three and 12 months postinjury where participants were asked to talk about their experience of head injury. Analysis was completed on three levels: the individual; the family and between family cases with the aim of identifying a range of interwoven narrative threads.FindingsFive interwoven narratives were identified: trauma, recovery, autobiographical, suffering and family. The narrative approach emphasized that the year posthead injury was a turbulent time for families, who were active agents in the process of change.Conclusion This study has shown the importance of listening to people's stories and understanding their journeys irrespective of the injured person's outcome. Change postinjury is not limited to the injured person: family members need help to understand that they too are changing as a result of their experiences.
Article
Background: The increasing influence of patient-reported outcome (PRO) measurement instruments indicates their scrutiny has never been more crucial. Above all, PRO instruments should be valid: shown to assess what they purport to assess. Objectives: To evaluate a widely used fatigue PRO instrument, highlight key issues in understanding PRO instrument validity, demonstrate limitations of those approaches and justify notable changes in the validation process. Methods: A two-phase evaluation of the 40-item Fatigue Impact scale (FIS): a qualitative evaluation of content and face validity using expert opinion (n=30) and a modified Delphi technique; a quantitative psychometric evaluation of internal and external construct validity of data from 333 people with multiple sclerosis using traditional and modern methods. Results: Qualitative evaluation did not support content or face validity of the FIS. Expert opinion agreed with the subscale placement of 23 items (58%), and classified all 40 items as being non-specific to fatigue impact. Nevertheless, standard quantitative psychometric evaluations implied, largely, FIS subscales were reliable and valid. Conclusions: Standard quantitative 'psychometric' evaluations of PRO instrument validity can be misleading. Evaluation of existing PRO instruments requires both qualitative and statistical methods. Development of new PRO instruments requires stronger conceptual underpinning, clearer definitions of the substantive variables for measurement and hypothesis-testing experimental designs.
Article
Objectives: To compare demographic data, clinical data, and rate of functional and cognitive recovery in patients with severe traumatic, cerebrovascular, or anoxic acquired brain injury (ABI) and to identify factors predicting discharge home. Participants: Three hundred twenty-nine patients with severe ABI (192 with traumatic, 104 with cerebrovascular, and 33 with anoxic brain injury). Design: Longitudinal prospective study of inpatients attending the intensive Rehabilitation Department of the "Sacro Cuore" Don Calabria Hospital (Negrar, Verona, Italy). Main measures: Etiology, sex, age, rehabilitation admission interval, rehabilitation length of stay, discharge destination, Glasgow Coma Scale, Disability Rating Scale (DRS), Glasgow Outcome Scale, Levels of Cognitive Functioning, and Functional Independence Measure. Results: Predominant etiology was traumatic; male gender was prevalent in all the etiologic groups; patients with traumatic brain injury were younger than the patients in the other groups and had shorter rehabilitation admission interval, greater functional and cognitive outcomes on all considered scales, and a higher frequency of returning home. Patients with anoxic brain injury achieved the lowest grade of functional and cognitive recovery. Age, etiology, and admission DRS score predicted return home. Conclusions: Patients with traumatic brain injury achieved greater functional and cognitive improvements than patients with cerebrovascular and anoxic ABI. Age, etiology, and admission DRS score can assist in predicting discharge destination.
Article
To explore the use of qualitative metasynthesis to inform debate on the selection of outcome measures for evaluation of services provided to adults with traumatic brain injury (TBI). Fifteen databases were searched for qualitative research published between 1965 and June 2009, investigating the lived experience of recovery following TBI acquired during adulthood. Two reviewers independently screened all abstracts. Included studies were evaluated using methodological criteria to provide a context for interpretation of substantive findings. Data were extracted and synthesised by three reviewers, using QSR NVivo to assist with data management. From 23 studies, eight inter-related themes were identified to describe the enduring experience of TBI: 1) mind/body disconnect; 2) disconnect with pre-injury identity; 3) social disconnect; 4) emotional sequelae; 5) internal and external resources; 6) reconstruction of self-identity; 7) reconstruction of a place in the world; 8) reconstruction of personhood. Currently, there are outcome measures for some but not all of the issues identified in qualitative research on surviving TBI. In particular, new outcome measures may be required to evaluate experiences of loss of personal identity, satisfaction with reconstructed identity and sense of connection with one's body and one's life following TBI.
Article
The effects of stroke on stroke survivors are profound and cannot adequately be understood from a single approach or point of view. Use of qualitative study, in addition to quantitative research, provides a comprehensive picture of the consequences of stroke grounded in the experience of stroke survivors. The purpose of the present study was to examine the contribution of the published qualitative literature to our understanding of the experience of living with stroke. Qualitative meta-synthesis. Method: A literature search was conducted to identify qualitative studies focused on the experience of living with stroke. Themes and supporting interpretations from each study were compiled and reviewed independently by 2 research assistants in order to identify recurring themes and facilitate interpretation across studies. From 9 qualitative studies, 5 inter-related themes were identified as follows: (i) Change, Transition and Transformation, (ii) Loss, (iii) Uncertainty, (iv) Social Isolation, (v) Adaptation and Reconciliation. The present synthesis suggests the sudden, overwhelming transformation of stroke forms a background for loss, uncertainty and social isolation. However, stroke survivors may move forward through adaptation towards recovery. Meta-synthesis of qualitative research is needed to promote the inclusion of what we know about patient preferences and values in evidence-based practice.
Article
This paper focuses on using the grounded theory method to study social psychological themes which cut across diverse chronic illnesses. The grounded theory method is presented as a method having both phenomenological and positivistic roots, which leads to confusion and misinterpretations of the method. A social constructionist version and application of grounded theory are introduced after brief overviews of the method and of the debates it has engendered are provided. Next, phases in developing concepts and theoretical frameworks through using the grounded theory approach are discussed. These phases include: (1) developing and refining the research and data collection questions, (2) raising terms to concepts, (3) asking more conceptual questions on a generic level and (4) making further discoveries and clarifying concepts through writing and rewriting. Throughout the discussion, examples and illustrations are derived from two recent papers, 'Disclosing Illness' and 'Struggling for a Self: Identity Levels of the Chronically Ill'. Last, the merits of the method for theoretical development are discussed.
Article
Time course and degree of the recovery of walking function after stroke and the influence of initial lower extremity (LE) paresis were studied prospectively in a community-based population of 804 consecutive acute stroke patients. Walking function and degree of LE paresis were assessed weekly using the Barthel index and the Scandinavian Neurological Stroke scale, respectively. Initially, 51% had no walking function, 12% could walk with assistance, and 37% had independent walking function. At the end of rehabilitation, 21% had died, 18% had no walking function, 11% could walk with assistance, and 50% had independent walking function. Recovery of walking function occurs in 95% of the patients within the first 11 weeks after stroke. The time and the degree of recovery are related to both the degree of initial impairment of walking function and to the severity of LE paresis, p < .0001. A valid prognosis of walking function in patients with initially no/mild/moderate leg paresis can be made in 3 weeks, and further recovery should not be expected after 9 weeks. A valid prognosis of walking function in patients with initially severe leg paresis or paralysis can be made in 6 weeks, and further improvement of walking function should not be expected later than 11 weeks after stroke.
Article
This study determined the inter-tester and intra-tester reliability of physiotherapists measuring functional motor ability of traumatic brain injury clients using the Clinical Outcomes Variable Scale (COVS). To test inter-tester reliability, 14 physiotherapists scored the ability of 16 videotaped patients to execute the items that comprise the COVS. Intra-tester reliability was determined by four physiotherapists repeating their assessments after one week, and three months later. The intra-class correlation coefficients (ICC) were very high for both inter-tester reliability (ICC > 0.97 for total COVS scores, ICC > 0.93 for individual COVS items) and intra-tester reliability (ICC > 0 97). This study demonstrates that physiotherapists are reliable in the administration of the COVS.
Article
To identify variables that are predictive of independent ambulation after traumatic brain injury (TBI) and to define the time course of recovery. Retrospective review of consecutive admissions of patients with severe TBI over a 32-month period. Brain injury unit in an acute, inpatient rehabilitation hospital. Of 264 patients screened, 116 met criteria that included the ability to participate in motor and functional evaluation on admission to acute rehabilitation, and the absence of other neurologic disorders or fractures that affect one's ability to ambulate. Inpatient rehabilitation on a specialized TBI unit by an interdisciplinary team.Main outcome measures Recovery of independent ambulation and time to recover independent ambulation. Of eligible patients, 73.3% achieved independent ambulation by latest follow-up (up to 5.1 mo). Patients who achieved independent ambulation were significantly younger (P<.05), had better gait scores on admission (P<.05), and tended to be less severely injured-based on duration of posttraumatic amnesia (PTA; P=.058)-than those who did not ambulate independently. There were no differences in recovery based on neuropathologic profile. Mean time to independent ambulation +/- standard deviation was 5.7+/-4.3 weeks; of those achieving independent ambulation, 82.4% did so by 2 months and 94.1% by 3 months. If not independent by 3 months postinjury, patients had a 13.9% chance of recovery. Multivariate regression analysis generated prediction models for time to independent ambulation, using admission FIM instrument scores and age (38% of variance); initial gait score, loss of consciousness, and age (40% of variance); or initial gait score and PTA (58% of variance), when restricted to just those patients with diffuse axonal injury. Most patients with severe TBI achieved independent ambulation; the vast majority did so within 3 months postinjury. Functional measures, injury severity measures, and age can help guide prognosis and expectations for time to recover.
Article
To conduct a systematic review of the rehabilitation literature of moderate to severe acquired brain injuries (ABI) from traumatic and non-traumatic causes. A review of the literature was conducted for studies looking at interventions in ABI rehabilitation. The methodological quality of each study was determined using the Downs and Black scale for randomized controlled trials (RCTs) and non-RCTs as well as the Physiotherapy Evidence Database (PEDro) scale for RCTs only. Almost 14 000 references were screened from which 1312 abstracts were selected. A total of 303 articles were chosen for careful review of which 275 were found to be interventional studies but only 76 of these interventional studies were RCTs. From this, 5 levels of evidence were determined with 177 conclusions drawn; however of the 177 conclusions only 7 were supported by two or more RCTs and 41 were supported by one RCT. Only 28% of the interventional studies were RCTs. Over half of the 275 interventional studies were single group interventions, pointing to the need for studies of improved methodological quality into ABI rehabilitation.
Article
Disturbances of body orientation perception after brain lesions may specifically relate to only one dimension of space. Stroke patients with "pusher syndrome" suffer from a severe misperception of their body's orientation in the coronal (roll) plane. They experience their body as oriented 'upright' when it is in fact markedly tilted to one side. The patients use the unaffected arm or leg to actively push away from the un-paralyzed side and resist any attempt to passively correct their tilted body posture. Although pusher patients are unable to correctly determine when their own body is oriented in an upright, vertical position, they seem to have no significant difficulty in determining the orientation of the surrounding visual world in relation to their own body. Pusher syndrome is a distinctive clinical disorder occurring characteristically after unilateral left or right brain lesions in the posterior thalamus and -less frequently- in the insula and postcentral gyrus. These structures thus seem to constitute crucial neural substrates controlling human (upright) body orientation in the coronal (roll) plane. A further disturbance of body orientation that predominantly affects a single dimension of space, namely the transverse (yaw) plane, is observed in stroke patients with spatial neglect. Apparently, our brain has evolved separate neural subsystems for perceiving and controlling body orientation in different dimensions of space.
Interpretive description: a noncategorical qualitative alternative for developing nursing knowledge
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  • S R Kirkham
  • J Macdonald-Emes
Using EFA and FIM rating scales could provide a more complete assessment of patients with acquired brain injury
  • S Pw
  • H Pallesen
  • Ar P Jf
group SC-s. Caregiver burden after stroke: changes over time?
  • W Pont
  • I Groeneveld
  • H Arwert
  • J Meesters
  • R R Mishre
  • Vliet Vlieland
  • T Goossens
Optimising qualitative longitudinal analysis: insights from a study of traumatic brain injury recovery and adaptation
  • A Jk F, Channon
  • A Theadom
  • Km M
  • G Tbier