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Sexuality as part of rehabilitation? A qualitative study on the perceptions of rehabilitation nurses on discussing patient sexuality during clinical rehabilitation

PASCUAL, April
WIGHMAN, Amber
LITTOOIJ, Elsbeth C
JANSSEN, Thomas W
February 2021

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Introduction: Spinal cord injury may seriously affect sexual health and sexuality, which can lead to lower self-esteem, social isolation, lower quality of life, and an increased risk of depression. Nurses play an extensive role in providing patient education. However, a gap between the patients’ need for information and the lack of information provided by nurses still exists. Therefore, knowledge about barriers and facilitators regarding discussing patient sexuality is necessary.

 

Methods: Semi-structured interviews were conducted with 25 nurses working in Spinal Cord Injury rehabilitation in one clinic in the Netherlands. The following themes were discussed during the interviews: (1) attitude, (2) social factors, (3) affect, (4) habits and (5) facilitating conditions.

 

Results: Addressing patient sexuality was difficult due to the nurses’ attitude and their environment. Sexuality was considered important but respondents were reserved to discuss the topic due to taboo, lack of knowledge, and common preconceptions. Participants expressed the need for education, a clear job description, time and privacy.

 

Conclusion: Nurses consider discussing patient sexuality as important but are hindered due to multiple factors. Organizational efforts targeted at knowledge expansion are needed to break the taboo and remove preconceptions. Nurses should provide opportunities to discuss the subject to intercept sexuality-related problems.

Disability inclusion annual report 2020

UNITED NATIONS RELIEF AND WORKS AGENCY (UNRWA)
December 2020

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The number of Palestine refugees registered by UNRWA recently grew to 5.7 million (from 5.5 million in 2019) in all its five field of operations in Jordan, Lebanon, Syria, Gaza and the West Bank. Among them are Palestine refugees with disabilities, who have long-term impairments, which in interactions with attitudinal, institutional, and environmental barriers prevent their full and effective participation on an equal basis with others in society. Persons with disabilities constitute an estimated 15 per cent of the global population1, and may constitute a higher percentage in humanitarian contexts, such as Syria, the West Bank and Gaza, in particular, which are UNRWA fields of operations.

 

The main actions undertaken in 2020 discussed in the report are:

  • targeted and disability-specific services for persons with disabilities
  • disability inclusion through programmes
  • inter-agency coordination
  • international protection advocacy

User Satisfaction with Conventional Lower-Limb Orthotic Devices: a Cross-Sectional Survey in Pakistan

Aftab, Zohaib
Zaidi, Zohaib Ahmed
Shafi, Faraz
2020

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Purpose: Persons with disabilities affecting lower-limb function use ankle- foot-orthoses (AFO) and knee-ankle-foot-orthoses (KAFO) on a regular basis. However, the effectiveness of these devices in daily use is seldom evaluated, especially in the developing world. This study aimed to evaluate user satisfaction with lower-limb orthotic devices while performing a broad spectrum of daily life activities in Pakistan, and to document the desired outcomes.

 

Method: A survey was conducted among orthotic device users in the out-patient departments of three hospitals in Lahore, Pakistan. The survey questionnaire was devised by adapting the Prosthetic Evaluation Questionnaire to suit orthotics evaluation. Fifty-four AFO and KAFO users participated in the study.

 

Results: Most users felt comfortable while walking on even surfaces with their orthoses. However, donning/doffing these, climbing stairs and performing certain routine activities were considered problematic for most people. Energy conservation was the most desired AFO feature, while the KAFO users wanted automatic knee-joint function.

 

Conclusion and Implications: Overall satisfaction with the existing lower- limb orthoses is adequate. Yet, significant improvements are needed in terms of energy efficiency and comfort while walking on different terrains. Further research is required in order to improve the functioning of the existing orthotic devices.

Work conditions, support, and changing personal priorities are perceived important for return to work and for stay at work after stroke – a qualitative study

LINDGREN, Ingrid
Brogårdh, Christine
PESSAH-RASMUSSEN, Helene
JONASSON, Stina B
GARD, Gunvor
2020

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Purpose: To explore work related and personal facilitators and barriers for return to work (RTW) and stay at work after stroke.

 

Materials and methods: Twenty individuals post-stroke (median age 52 years; seven women) were inter- viewed in focus groups. Data were analyzed by using qualitative content analysis.

 

Results: An overall theme “Work conditions, support and changed personal priorities influenced RTW and stay at work after stroke” emerged and covered three categories: “Adjustments and flexibility at the work place facilitated RTW and a sustainable work situation”, “Psychosocial support and knowledge about stroke consequences facilitated work and reduced stress”, and “Changed view of work and other personal priorities”. Physical adjustments at the work place and flexibility in the work schedule were perceived facilitators. Support from family and colleagues were important, whereas lack of knowledge of stroke dis- abilities at the work place was perceived a barrier. Also changed personal priorities in relation to the work and the current life situation influenced RTW in various ways.

 

Conclusions: The individual’s opportunities to influence the work situation is a key factor for RTW and the ability to stay at work after stroke. Adjustments, flexibility, support, knowledge of stroke, and receptiv- ity to a changed view of work are important for a sustainable work situation.

Implementing music therapy through telehealth: considerations for military populations

VAUDREUIL, Rebecca
LANGSTON, Diane G
MAGEE, Wendy L
BETTS, Donna
KASS, Sara
LEVY, Charles
2020

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Purpose

Telehealth provides psychotherapeutic interventions and psychoeducation for remote populations with limited access to in-person behavioural health and/or rehabilitation treatment. The United States Department of Défense and the Veterans Health Administration use telehealth to deliver primary care, medication management, and services including physical, occupational, and speech-language therapies for service members, veterans, and eligible dependents. While creative arts therapies are included in telehealth programming, the existing evidence base focuses on art therapy and dance/movement therapy, with a paucity of information on music therapy.

 

Methods

Discussion of didactic and applied music experiences, clinical, ethical, and technological considerations, and research pertaining to music therapy telehealth addresses this gap through presentation of three case examples. These programmes highlight music therapy telehealth with military-connected populations on a continuum of clinical and community engagement: 1) collaboration between Berklee College of Music in Boston, MA and the Acoke Rural Development Initiative in Lira, Uganda; 2) the Semper Sound Cyber Health programme in San Diego, CA; and 3) the integration of music therapy telehealth into Creative Forces®, an initiative of the National Endowment for the Arts.

 

Results

These examples illustrate that participants were found to positively respond to music therapy and community music engagement through telehealth, and reported decrease in pain, anxiety, and depression; they endorsed that telehealth was not a deterrent to continued music engagement, requested continued music therapy telehealth sessions, and recommended it to their peers.

 

Conclusions

Knowledge gaps and evolving models of creative arts therapies telehealth for military-connected populations are elucidated, with emphasis on clinical and ethical considerations.

Factors of importance for return to work, experienced by patients with chronic pain that have completed a multimodal rehabilitation program – a focus group study

SVANHOLM, Frida
LIEDBERG, Gunilla Margareta
LÖFGREN, Monika
BJÖRK, Mathilda
2020

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BACKGROUND AND PURPOSE: To reduce the individual, societal, and economic burden of the high sick leave rates due to chronic pain, it is essential to find effective strategies for increasing return to work (RTW). Although multimodal rehabilitation programs (MMRPs) may have positive effects on RTW, the results are inconsistent. This study explores the factors that contribute to decreasing sick leave and increasing RTW in patients with chronic pain who completed a MMRP.

 

METHOD: Four focus groups and three individual interviews were conducted. In total, 18 patients were interviewed. All patients had chronic pain and had completed a MMRP. They were either employed or unemployed, either working to some degree or fully on sick leave. The data were analysed using qualitative content analysis.

 

RESULTS: Three main categories were identified: Knowledge and understanding–prerequisites for tailored solutions; Individual adaptations–necessary but difficult to implement; and Stakeholder collaboration–needs improvement.

 

CONCLUSION: The participants described a variety of facilitating and limiting factors that created complex prerequisites for RTW. This finding makes it clear that these patients need tailored interventions and strong collaboration among all stakeholders throughout the rehabilitation process. Tailored interventions and collaborations could improve the effectiveness of MMRPs.

Family experiences up to seven years after a severe traumatic brain injury–family interviews

STENBERG, Maud
STALNACKE, Britt-Marie
SAVEMAN, Britt-Inger
June 2020

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Purpose: To explore the experiences of being a family with one member suffering from severe traumatic brain injury (STBI) up to 7 years earlier through narrative family interviews.

 

Methods: There are few studies where a family as a unit, including persons with STBI, are interviewed together. This study used a family systems research approach following a qualitative interpretative design. Therefore, 21 families with a total of 47 family members were interviewed. Qualitative content analysis was used to reveal categories with sub-categories and a theme.

 

Results: “From surviving STBI towards stability, through the unknown, into a new everyday life and a new future as a family” characterized the implicit message. The results revealed two categories both with three subcategories. The first category characterized the rapid change from a normal everyday life to one of uncertainty and finally to one of stability, and the second category described how it is to adapt as a family after STBI.

 

Conclusions: Long-term experiences of STBI show the importance for the whole family of belonging to a context, having a job, and having something to belong to as a way to achieve stability. Families` feelings of loneliness and lack of treatment and support are challenges for professionals when trying to involve families in care and rehabilitation.

Managing to learn bimanual activities – experiences from children and adolescents with cerebral palsy – a qualitative analysis

LIDMAN, Git
HIMMELMAN, Kate
PENY-DAHLSTRAND, Marie
May 2020

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Purpose: Children and adolescents with cerebral palsy often have impaired hand function. This makes it difficult for them to deal with everyday activities. The aim of the study was to explore the experiences of children and adolescents with unilateral spastic cerebral palsy when it comes to learning and dealing with activities requiring bimanual use.

 

Method: Ten participants, attending mainstream schools, with unilateral spastic cerebral palsy (10–18 years, MACS-level I-III) took part in semi-structured interviews. Qualitative analysis with verbatim transcripts were analysed using a Grounded Theory approach.

 

Results: The learning of bimanual activities was described as a process taking place in interaction with the dynamics of everyday situations. Five categories describing the participants experiences emerged: “Reaching a point where you want to learn”, “Awareness and acceptance of your own abilities”, “Dealing with the boundaries of the disability”, “Dealing with the impact of people around you” and “Strategies for learning”. A multi-dimensional theory was derived, summarising how the participants learned bimanual activities in daily life.

 

Conclusions: Children and adolescents with unilateral spastic cerebral palsy express that the process of learning bimanual activities can only take place when it fits in with life as it unfolds. Thus, they have to adapt to a changing context and their own developing skills.

Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions

DAWES, Kate
CARLINO, Ashley
VAN DER BERG, Maayken
KILLINGTON, Maggie
May 2020

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Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions.

 

Research design: Qualitative exploratory study using a phenomenological approach.

 

Method: Twenty-six participants were recruited from 12 families across the South AustralianBrain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5–18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding.

 

Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don’t leave children “in the dark,” and (4) support for children is not one size fits all.

 

Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.

Functional outcome of stroke inpatients according to human immunodeficiency virus status: A feasibility study

HARTLEY, Tasneem
BURGER, Marlette
ESTERHUIZEN, Tonya M
INGLIS-JASSIEM, Gakeemah
March 2020

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Background: Stroke in human immunodeficiency virus positive (HIV+) individuals is becoming an increasing concern. Being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent.

 

Objectives: This feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying HIV status.

 

Method: All stroke patients meeting the inclusion criteria were recruited over a 6-month period at a South African inpatient rehabilitation centre. Data were collected on admission and discharge using outcome measures including the Barthel Index (BI), Berg Balance Scale (BBS) and the use of assistive devices used to describe independence with activities of daily living (ADL), mobility and safety post-stroke. Statistical analysis was performed using Stata version 14.2.

 

Results: The feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. Limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant HIV status. An appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding.

 

Conclusion: To increase generalisability and the understanding of the unique HIV+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with HIV status confirmation are recommended.

 

 

African Journal of Disability, Vol 9, 2020

Development of the MobQoL patient reported outcome measure for mobility-related quality of life

BRAY, Nathan
HAF SPENCER, Llinos
TUERSLEY, Lorna
TUDOR EDWARDS, Rhiannon
March 2020

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Purpose: To examine how mobility and mobility impairment affect quality of life; to develop a descriptive system (i.e., questions and answers) for a novel mobility-related quality of life outcome measure.

 

Materials and methods: Data were collected through semi-structured interviews. Participants were recruited predominantly from NHS posture and mobility services. Qualitative framework analysis was used to analyse data. In the first stage of analysis the key dimensions of mobility-related quality of life were defined, and in the second stage a novel descriptive system was developed from the identified dimensions.

 

Results: Forty-six interviews were conducted with 37 participants (aged 20–94 years). Participants had a wide range of conditions and disabilities which impaired their mobility, including cerebral palsy, multiple sclerosis, and arthritis. Eleven dimensions of mobility-related quality of life were identified: accessibility, safety, relationships, social inclusion, participation, personal care, pain and discomfort, independence, energy, self-esteem, and mental-wellbeing. A new outcome measure, known as MobQoL, was developed.

 

Conclusions: Mobility and mobility impairment can have significant impacts on quality of life. MobQoL is the first outcome measure designed specifically to measure the impact of mobility on quality of life, and therefore has utility in research and practice to measure patient outcomes related to rehabilitation.

Feasibility and short-term effects of Activity Coach+: a physical activity intervention in hard-to-reach people with a physical disability

KROPS, L A
GEERTZEN, J H B
HOREMAN, L D
BUSSMAN, J B J
DIJKSTRA, P U
DEKKER, R
January 2020

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Purpose: Existing physical activity interventions do not reach a considerable proportion of physically disabled people. This study assessed feasibility and short-term effects of Activity Coach+, a community-based intervention especially targeting this hard-to-reach population.

 

Methods: Feasibility was determined by reach, dropouts, and compliance with the protocol. Physical activity was measured with the Activ8 accelerometer and the adapted SQUASH questionnaire. Health outcomes were assessed by body composition, blood pressure, hand grip force, 10-metre walk test, 6-minute walk test, and the Berg Balance Scale. The RAND-36, Exercise Self-Efficacy Scale, Fatigue Severity Scale, and IMPACT-S were administered. Measurements were performed at baseline and after 2 and 4 months. Changes over time were analysed by Friedman tests.

 

Results: Twenty-nine participants enrolled during the first 4 months, of whom two dropped out. Intervention components were employed in 86–100% of the participants. Physical activity did not change after the implementation of Activity Coach+. Body mass index (p = 0.006), diastolic blood pressure (p = 0.032), walking ability (p = 0.002), exercise capacity (p = 0.013), balance (p = 0.014), and vitality (p = 0.049) changed over time.

 

Conclusions: Activity Coach + is feasible in a community setting. Indications for effectivity of Activity Coach + in hard-to-reach people with a physical disability were found.

Capability of deaf children with a cochlear implant

RIJKE, Wouter J
VERMEULEN, Anneke M
WENDRICK, Karine
MYLANUS, Emmanuel
LANGEREIS, Margreet C
VAN DER WILT, Gert Jan
November 2019

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Introduction: The main idea underlying this paper is that impairments such as deafness are particularly relevant to the extent that they lead to deprivation of capability. Likewise, the impact of healthcare services such as cochlear implants and subsequent rehabilitation can best be inferred from the extent that they protect or restore capability of those affected.

 

Methods: To explore children’s post-implant capabilities, we tested two newly developed digital, adaptive child self-report and parent-report questionnaires in 19 deaf children (aged 8–12 years) and their parents during rehabilitation, as well as in 23 age peers with normal hearing.

 

Results: Despite the impressive speech-language results that were recorded with cochlear implants, the post-implant capabilities of the deaf children we evaluated differed from those of their hearing peers, with the cochlear implant group appearing particularly disadvantaged in areas such as accessing information, communication, social participation, and participation in school.

 

Conclusion: Deaf children with cochlear implants who are performing well on linguistic and auditory tests can still experience serious limitations in desired functioning. Our findings suggest that a capability approach may reveal aspects of what is being achieved through rehabilitation that might otherwise remain unnoticed, and that could help to further improve the well-being of our patients.

Participation restrictions and vocational rehabilitation needs experienced by persons with a unilateral lower limb amputation in the Western Cape, South Africa

YU, Tak Wing
ENNION, Liezel
2019

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Background: Vocational rehabilitation (VR) aims to rehabilitate a person with an amputation back into actively participating in society. Even though lower limb amputation (LLA) surgery is commonly performed in South Africa (SA), little research has been published on the participation restrictions experienced by and vocational needs of persons with LLA in the Western Cape (WC).

 

Objectives: The aim of this study was to determine and explore the participation restrictions and VR needs of persons with a unilateral LLA in the WC.

 

Method: A mixed-methods approach and a sequential exploratory design were utilised to collect data from 50 persons with an LLA. Participants were conveniently sampled within the Cape Metropole region of the WC, SA. The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) tool was used to collect the quantitative data, and telephonic interviews were conducted for qualitative data collection.

 

Results: A third (28%) of participants in this study were unemployed, and only 14% (n = 7) of the participants owned or used a prosthesis. In addition, 50% of the participants either had a disability grant or were on pension. The participation restrictions identified were mainly related to mobility where 74% (n = 37) of participants had extreme difficulty with mobility in general, 92% (n = 46) struggled with walking distances longer than 1 km and 80% (n = 40) had extreme difficulty in completing household tasks quickly. The main VR needs identified in this study were the inadequate rehabilitation services that target ambulation (standing and walking) to facilitate employment.

 

Conclusion: Persons with a unilateral LLA still experience significant difficulties in mobility 3 months post-amputation, which negatively affects their participation in society and vocational activities.

 

African Journal of Disability, Vol 8, 2019

Views of children with cerebral palsy and their parents on the effectiveness and acceptability of intensive speech therapy

PENNINGTON, Lindsay
RAUCH, Rosie
SMITH, Johanna
BRITTAIN, Katie
March 2019

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Purpose: To understand children and parents’ views of the effectiveness and acceptability of intensive dysarthria therapy.

 

Materials and Methods: Twenty-two children with cerebral palsy and dysarthria joined a pilot RCT comparing intensive therapy and usual care. Children (n = 11) allocated to dysarthria therapy comprising three 40-minute sessions per week for six weeks and their parents (n = 11) were interviewed two weeks before and six weeks after therapy. Interviews were transcribed verbatim and analysed thematically.

 

Results: Analysis revealed five themes: Motivations, My new voice; The new me; I can do more; Success rooted in therapy design. Children had received little therapy for speech and were keen to improve intelligibility. Overall, therapy was viewed as effective. Participants described changes in children’s speech production, which they associated with increased speech intelligibility. Children were described as more confident following the therapy, to have more successful conversations, with a wider range of partners in more environments, thereby increasing their social participation. The programme was viewed as acceptable, despite its intensity, due to the short term commitment and wider benefits for the child. Parents valued the organised structure and individualisation of the programme and inclusion in the therapy process.

 

Conclusion: Families found the intervention acceptable and effective. A definitive trial of its clinical effectiveness is warranted.

Mobility Analysis of AmpuTees (MAAT 4): classification tree analysis for probability of lower limb prosthesis user functional potential

WURDEMAN, Shane R
STEVENS, Phillip M
CAMPBELL, James H
2019

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Purpose: 

To develop a predictive model to inform the probability of lower limb prosthesis users’ functional potential for ambulation.

 

Materials and Methods: 

A retrospective analysis of a database of outcomes for 2770 lower limb prosthesis users was used to inform a classification and regression tree analysis. Gender, age, height, weight, body mass index adjusted for amputation, amputation level, cause of amputation, comorbid health status and functional mobility score [Prosthetic Limb Users Survey of Mobility (PLUS-M™)] were entered as potential predictive variables. Patient K-Level was used to assign dependent variable status as unlimited community ambulator (i.e., K3 or K4) or limited community/household ambulator (i.e., K1 or K2). The classification tree was initially trained from 20% of the sample and subsequently tested with the remaining sample.

 

Results: 

A classification tree was successfully developed, able to accurately classify 87.4% of individuals within the model’s training group (standard error 1.4%), and 81.6% within the model’s testing group (standard error 0.82%). Age, PLUS-M™ T-score, cause of amputation and body weight were retained within the tree logic.

 

Conclusions: 

The resultant classification tree has the ability to provide members of the clinical care team with predictive probabilities of a patient’s functional potential to help assist care decisions.

The Arabic version of Trinity Amputation and Prosthetic Experience Scale - Revised (TAPES-R) for lower limb amputees: Reliability and validity

MASSARWEH, Reem
SOBUH, Mohammad
2019

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Purpose: Despite the importance of the evaluation process in lower limb prosthetic rehabilitation, prostheses are rarely evaluated properly in the Arab world. This is partly due to the absence of any suitable Arabic evaluative tool. The aim of this study is to translate TAPES-R (a standardised evaluative questionnaire) into Arabic and to investigate its psychometric properties on lower limb amputees. Such a tool would ultimately be of benefit for clinical follow-up and research purposes.

 

Method: International standards were followed for the forward- and back-translation of the TAPES-R questionnaire. A sample of 111 Arabic-speaking volunteers with lower limb amputation completed the translated version of the questionnaire. The responses were then statistically analysed using factor analysis and Cronbach’s α to assess the content and construct validity, and internal consistency (reliability) respectively.

 

Results: Factor analysis showed that the questionnaire’s items (included in the analysis) can be divided into three distinct dimensions as was originally suggested. The distribution of the items within the three dimensions is comparable with the original questionnaire. All three parts of TAPES-R showed high reliability; where Cronbach’s α were .892, .894, and .873 respectively.

 

Conclusion: This study found that the Arabic version of TAPES-R represents a valid and reliable tool.

 

Limitations: The questionnaire is designed to be emailed or posted, but the majority of the amputee population in Jordan did not have these services, so direct contact with each participant was necessary.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Adaptations from the prosthetic and intact limb during standing on a sway-referenced support surface for transtibial prosthesis users

RUSAW, David F
2018

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Purpose: 

To investigate the bilateral postural adaptations as a result of standing on an increasingly unstable sway-referenced support surface with both the intact and prosthetic limb for transtibial prosthesis users (TPUs).

 

Method: 

TPUs (n = 14) and matched controls (n = 14) stood quietly in multiple foot placement conditions (intact foot, prosthetic foot and both feet) on a sway-referenced support surface which matched surface rotation to the movement of the centre of pressure (CoP). Force and motion data were collected and used to analyse CoP mean position, displacement integral and force components under intact and prosthetic limbs.

 

Results: 

Significant differences were found between prosthesis users and controls in CoP mean position in anteroposterior (1.5 (95% CI, 1.2–1.8) cm) and mediolateral directions (3.1 (95% CI, 0.5–5.7) cm. CoP displacement integrals were significantly different greater for prosthesis user group in the anteroposterior direction. Force components differences were found in all planes (anteroposterior: 0.6 (95% CI, 0.4–0.8 N); mediolateral: 0.1 (95% CI, 0.0–0.2 N & 0.3 (95% CI, 0.2–0.4) N, inferosuperior: 2.2 (95% CI, 1.4–3.0) N).

 

Conclusions: 

TPUs have bilateral static and dynamic postural adaptations when standing on a sway-referenced support surface that is different to controls, and between prosthetic and intact sides. Results further support evidence highlighting importance of the intact limb in maintenance of postural control in prosthesis users. Differences indicate clinical treatment should be directed towards improving outcomes on the intact side.

Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

DOUGLAS, Jacinta
BIGBY, Christine
November 2018

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Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.

 

Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.

 

Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.

 

Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.

Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis

BARNARD, Emma
BROWN, Chelsea R
WEILAND, Tracey J
JELINEK, George A
MARCK, Claudia H
October 2018

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Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS.

 

Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3–5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed.

 

Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to “time-consuming” exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of person-centred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring.

 

Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions.

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