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1.
Pediatr Rheumatol Online J ; 21(1): 74, 2023 Jul 26.
Article in English | MEDLINE | ID: mdl-37491246

ABSTRACT

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making (SDM) model. We sought to explore families' decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs. METHODS: We conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8-18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States, from a hospital and from a quality improvement network. We used interview guides based on the Ottawa Decision Support Framework to assess decision-making needs. We audiotaped, transcribed verbatim and analyzed interviews using thematic analysis. RESULTS: A total of 12 young people (n = 6 children and n = 6 adolescents), 13 parents/caregivers and 11 HCPs participated in interviews. Pediatric HCPs were comprised of rheumatologists (n = 4), physical therapists (n = 3), rheumatology nurses (n = 2) and occupational therapists (n = 2). The following themes were identified: (1) need to assess pain in an accurate manner; (2) need to address pain in pediatric rheumatology consultations; (3) need for information on pain management options, especially nonpharmacological approaches; (4) importance of effectiveness, safety and ease of use of treatments; (5) need to discuss young people/families' values and preferences for pain management options; and the (6) need for decision support. Themes were similar for young people, parents/caregivers and HCPs, although their respective importance varied. CONCLUSIONS: Findings suggest a need for evidence-based information and communication about pain management options, which would be addressed by decision support interventions and HCP training in pain and SDM. Work is underway to develop such interventions and implement them into practice to improve pain management in JIA and in turn lead to better health outcomes.


Subject(s)
Arthritis, Juvenile , Pain Management , Adolescent , Child , Humans , Arthritis, Juvenile/complications , Arthritis, Juvenile/therapy , Pain , Qualitative Research , Quality of Life , Decision Making, Shared
2.
Physiother Can ; 74(4): 396-403, 2022 Nov.
Article in English | MEDLINE | ID: mdl-37324606

ABSTRACT

Purpose: The main objective was to assess the feasibility of conducting a full randomized controlled trial (RCT) to test the effectiveness of the OA Go Away (OGA) behavioural intervention on adherence to prescribed exercise, level of physical activity, goal attainment, and health outcomes, and to determine the acceptability of the OGA. The OGA is an internal reinforcement tool designed to promote exercise adherence for people with hip or knee OA. Method: This 3-month pragmatic pilot RCT included 40 participants with hip or knee OA who were randomized into the treatment group who used the OGA for three months, or standard care. Results: This pilot RCT which included 37 participants (17 in the treatment group and 20 in the control group) showed that it would be feasible to complete a full RCT of the OGA behavioural intervention with adjustments to the format of the OGA (electronic), inclusion criteria, outcome measures and duration. The OGA was felt to be useful (75%) and motivational (82%) by participants. Conclusions: This pilot RCT justifies a formal RCT of the OGA and shows promising results concerning its acceptability, especially if available in an electronic format.


Objectif : L'objectif principal était de déterminer la faisabilité de réaliser une étude randomisée et contrôlée (ÉRC) complète pour vérifier l'efficacité de l'intervention comportementale OA Go Away (OGA) à évaluer l'adhésion aux exercices prescrits, le degré d'activité physique, la réalisation des objectifs et leurs résultats en matière de santé et à en déterminer l'acceptabilité. L'OGA est un outil de renforcement interne conçu pour promouvoir l'adhésion à l'exercice chez les personnes atteintes d'arthrose de la hanche ou du genou. Méthodologie : Un ÉRC pilote de trois mois a été mené auprès de 40 participants atteints d'arthrose de la hanche ou du genou répartis de manière randomisée entre un groupe de traitement qui utilisait l'outil OGA pendant trois mois et un groupe de soins standards. Résultats : La présente ÉRC pilote menée auprès de de 37 participants (17 dans le groupe de traitement et 20 dans le groupe témoin) a révélé qu'il serait faisable de réaliser une ÉRC complète de l'intervention comportementale OGA après en avoir ajuster le format (i.e, électronique), les critères d'inclusion, les mesures de résultats et la durée. Les participants trouvaient l'outil OGA utile (75 %) et motivant (82 %). Conclusions : Cette ÉRC pilote justifie la tenue d'une ÉRC officielle de l'outil OGA et laisse entrevoir des résultats prometteurs au sujet de son acceptabilité, notamment s'il est offert sous forme électronique.

3.
J Bodyw Mov Ther ; 27: 410-419, 2021 Jul.
Article in English | MEDLINE | ID: mdl-34391264

ABSTRACT

BACKGROUND: Exercise therapy is effective in reducing symptoms and disability associated with hand osteoarthritis (HOA) but often has low adherence. An intervention consisting in a meaningful occupation, such as knitting, may improve adherence to treatment. This pilot randomized controlled trial (RCT) studied the adherence and clinical effectiveness of a knitting program in older females suffering from HOA to evaluate the acceptability of this intervention and assess the feasibility of a larger-scale RCT. METHODS: Single-blind, two-arm pilot RCT with a parallel group design with 37 participants (18 control, 19 intervention). Control participants were given an educational pamphlet and assigned to a waiting list. The knitting program (8-week duration) had two components: bi-weekly 20-min group knitting sessions and daily 20-min home knitting session on the 5 remaining weekdays. Measures included knitting adherence (implementation outcomes) as well as stiffness, pain, functional status, hand physical activity level, patient's global impression of change, health-related quality of life, self-efficacy, and grip strength (clinical outcomes measured throughout the 8-week program and 4 weeks after the intervention). RESULTS: Our protocol is feasible and the intervention was acceptable and enjoyable for participants, who showed high adherence. No difference was observed between the two groups for any of the clinical outcome measures (all p > .05). CONCLUSION: Knitting is a safe and accessible activity for older women with HOA. However, our 8-week knitting program did not result in improvements in any of our outcome measures. Knitting for a longer period and/or with higher frequency may yield better outcomes.


Subject(s)
Osteoarthritis , Aged , Exercise Therapy , Female , Hand , Humans , Osteoarthritis/therapy , Pilot Projects , Quality of Life
5.
Clin Rehabil ; 32(11): 1449-1471, 2018 Nov.
Article in English | MEDLINE | ID: mdl-29911409

ABSTRACT

OBJECTIVE:: To identify programmes involving therapeutic exercise that are effective for the management of hand osteoarthritis and to provide stakeholders with updated, moderate to high-quality recommendations supporting exercises for hand osteoarthritis. METHODS:: A systematic search and adapted selection criteria included comparable trials with exercise programmes for managing hand osteoarthritis. Based on the evaluated evidence, a panel of experts reached consensus through a Delphi approach endorsing the recommendations. A hierarchical alphabetical grading system (A, B, C+, C, C-, D-, D, D+, E, F) was based on clinical importance (≥15%) and statistical significance ( P < 0.05). RESULTS:: Ten moderate- to high-quality studies were included. Eight studies with programmes involving therapeutic exercise (e.g. range of motion (ROM) + isotonic + isometric + functional exercise) seemed to be effective. Forty-six positive grade recommendations (i.e. A, B, C+) were obtained during short-term (<12 weeks) trials for pain, stiffness, physical function, grip strength, pinch strength, range of motion, global assessment, pressure pain threshold, fatigue and abductor pollicis longus moment and during long-term (>12 weeks) trials for physical function and pinch strength. CONCLUSION:: Despite that many programmes involving exercise with positive recommendations for clinical outcomes are available to healthcare professionals and hand osteoarthritis patients that aid in the management of hand osteoarthritis, there is a need for further research to isolate the specific effect of exercise components.


Subject(s)
Exercise Therapy/methods , Exercise Therapy/standards , Osteoarthritis/rehabilitation , Consensus , Evidence-Based Medicine , Hand/physiopathology , Humans , Osteoarthritis/physiopathology , Pain Management , Pinch Strength , Randomized Controlled Trials as Topic , Range of Motion, Articular , Systematic Reviews as Topic
6.
BMC Musculoskelet Disord ; 19(1): 56, 2018 02 14.
Article in English | MEDLINE | ID: mdl-29444664

ABSTRACT

BACKGROUND: The prevalence of hand osteoarthritis (HOA) has been reported to be higher amongst women over 50 years old (66%) compared to men of the same age (34%). Although exercise therapy has been shown effective in reducing symptoms and disability associated with HOA, adherence to treatment programs remains low. The primary objective of this RCT is to examine the effectiveness of a 12-week knitting program for morning stiffness (primary outcome) and pain relief (secondary outcome) 2 h post-wakening in females (aged 50 to 85 years old) with mild to moderate hand osteoarthritis (HOA). METHODS/DESIGN: A single-blind, two-arm randomized controlled trial (RCT) with a parallel group design will be used to reach this objective and compare results to a control group receiving an educational pamphlet on osteoarththritis (OA) designed by the Arthritis Society. The premise behind the knitting program is to use a meaningful occupation as the main component of an exercise program. The knitting program will include two components: 1) bi-weekly 20-min knitting sessions at a senior's club and 2) 20-min home daily knitting sessions for the five remaining weekdays. Participants assigned to the control group will be encouraged to read the educational pamphlet and continue with usual routine. Pain, morning stiffness, hand function, self-efficacy and quality of life will be measured at baseline, six weeks, 12 weeks (end of program) with standardized tools. We hypothesize that participants in the knitting program will have significant improvements in all clinical outcomes compared to the control group. A published case study as well as the preliminary results of a feasibility study as examined through a 6-week pre-post study (n = 5 women with HOA) involving 20-min daily knitting morning sessions led to this proposed randomized controlled trial research protocol. This article describes the intervention, the empirical evidence to support it. DISCUSSION: This knitting RCT has the potential to enhance our understanding of the daily HOA symptoms control and exercise adherence, refine functional exercise recommendations in this prevalent disease, and reduce the burden of disability in older women. TRIAL REGISTRATION: (ACTRN12617000843358) registered on 7/06/2017.


Subject(s)
Exercise Therapy/methods , Hand/pathology , Hobbies , Independent Living , Osteoarthritis/rehabilitation , Pain Management/methods , Aged , Aged, 80 and over , Exercise Therapy/psychology , Exercise Therapy/trends , Female , Hobbies/psychology , Hobbies/trends , Humans , Independent Living/psychology , Independent Living/trends , Middle Aged , Osteoarthritis/diagnosis , Osteoarthritis/psychology , Quality of Life/psychology , Self Efficacy , Single-Blind Method
7.
Physiother Can ; 70(4): 330-338, 2018.
Article in French | MEDLINE | ID: mdl-30745718

ABSTRACT

Purpose: the purpose of the article is to produce a French-Canadian translation of the "OA Go Away" tool and to assess the validity of its contents as well as its test-retest reliability. "OA Go Away" is a customized tool that measures the various symptoms, their impact, and the physical activities of people with osteoarthritis of the hip or knee to improve self-care and help them be physically active. Method: Vallerand's cross-cultural validation methodology was used. First, professional translators and rehabilitation professionals produced a parallel reverse translation of the "OA Go Away" tool. Then, a committee of experts examined the translated versions and created a first experimental draft of the "Au revoir arthrose" tool. This draft was assessed and modified by a second committee of experts. Three users with osteoarthritis of the knee then assessed this version. Finally, a linguist examined the draft and an expert produced a final reverse translation of that version. The main co-researchers proposed final modifications of that version. Results: Twenty-one users indicated that the wording of the final "Au revoir arthrose" version was clear. The test-retest reliability was acceptable for the main elements of the "Au revoir arthrose" journal. Conclusions: The process's five rigorous steps enabled the creation of a valid French-Canadian version of the "Au revoir arthrose" tool. On average, the French-Canadian version of the "Au revoir arthrose" tool has moderate test-retest reliability for all of its elements. This tool can prove to be relevant for people suffering from osteoarthritis of the hip or knee, motivating them to be physically active, and for the health professionals who care for them.

8.
Clin Rehabil ; 31(5): 582-595, 2017 May.
Article in English | MEDLINE | ID: mdl-28183188

ABSTRACT

OBJECTIVE: To identify effective mind-body exercise programs and provide clinicians and patients with updated, high-quality recommendations concerning non-traditional land-based exercises for knee osteoarthritis. METHODS: A systematic search and adapted selection criteria included comparative controlled trials with mind-body exercise programs for patients with knee osteoarthritis. A panel of experts reached consensus on the recommendations using a Delphi survey. A hierarchical alphabetical grading system (A, B, C+, C, D, D+, D-) was used, based on statistical significance ( P < 0.5) and clinical importance (⩾15% improvement). RESULTS: The four high-quality studies identified demonstrated that various mind-body exercise programs are promising for improving the management of knee osteoarthritis. Hatha Yoga demonstrated significant improvement for pain relief (Grade B) and physical function (Grade C+). Tai Chi Qigong demonstrated significant improvement for quality of life (Grade B), pain relief (Grade C+) and physical function (Grade C+). Sun style Tai Chi gave significant improvement for pain relief (Grade B) and physical function (Grade B). CONCLUSION: Mind-body exercises are promising approaches to reduce pain, as well as to improve physical function and quality of life for individuals with knee osteoarthritis.


Subject(s)
Evidence-Based Medicine , Exercise Therapy/standards , Mind-Body Therapies/standards , Osteoarthritis, Knee/rehabilitation , Pain Management/methods , Exercise Therapy/methods , Humans , Mind-Body Therapies/methods , Muscle Strength/physiology , Practice Guidelines as Topic
9.
Clin Rehabil ; 31(5): 612-624, 2017 May.
Article in English | MEDLINE | ID: mdl-28183194

ABSTRACT

OBJECTIVES: To identify effective aerobic exercise programs and provide clinicians and patients with updated, high-quality recommendations concerning traditional land-based exercises for knee osteoarthritis. METHODS: A systematic search and adapted selection criteria included comparative controlled trials with strengthening exercise programs for patients with knee osteoarthritis. A panel of experts reached consensus on the recommendations using a Delphi survey. A hierarchical alphabetical grading system (A, B, C+, C, D, D+, or D-) was used, based on statistical significance ( P < 0.5) and clinical importance (⩾15% improvement). RESULTS: The five high-quality studies included demonstrated that various aerobic training exercises are generally effective for improving knee osteoarthritis within a 12-week period. An aerobic exercise program demonstrated significant improvement for pain relief (Grade B), physical function (Grade B) and quality of life (Grade C+). Aerobic exercise in combination with strengthening exercises showed significant improvement for pain relief (3 Grade A) and physical function (2 Grade A, 2 Grade B). CONCLUSION: A short-term aerobic exercise program with/without muscle strengthening exercises is promising for reducing pain, improving physical function and quality of life for individuals with knee osteoarthritis.


Subject(s)
Evidence-Based Medicine , Exercise Therapy/standards , Exercise/physiology , Osteoarthritis, Knee/rehabilitation , Pain Management/methods , Exercise Therapy/methods , Humans , Practice Guidelines as Topic
10.
Clin Rehabil ; 31(5): 596-611, 2017 May.
Article in English | MEDLINE | ID: mdl-28183213

ABSTRACT

OBJECTIVE: To identify effective strengthening exercise programs and provide rehabilitation teams and patients with updated, high-quality recommendations concerning traditional land-based exercises for knee osteoarthritis. METHODS: A systematic search and adapted selection criteria included comparative controlled trials with strengthening exercise programs for patients with knee osteoarthritis. A panel of experts reached consensus on the recommendations using a Delphi survey. A hierarchical alphabetical grading system (A, B, C+, C, D, D+ or D-) was based on statistical significance ( p < 0.5) and clinical importance (⩾15% improvement). RESULTS: The 26 high-quality studies identified demonstrated that various strengthening exercise programs with/without other types of therapeutic exercises are generally effective for improving knee osteoarthritis management within a six-month period. Strengthening exercise programs demonstrated a significant improvement for pain relief (four Grade A, ten Grade B, two Grade C+), physical function (four Grade A, eight Grade B) and quality of life (three Grade B). Strengthening in combination with other types of exercises (coordination, balance, functional) showed a significant improvement in pain relief (three Grade A, 11 Grade B, eight Grade C+), physical function (two Grade A, four Grade B, three Grade C+) and quality of life (one Grade A, one Grade C+). CONCLUSION: There are a variety of choices for strengthening exercise programs with positive recommendations for healthcare professionals and knee osteoarthritis patients. There is a need to develop combined behavioral and muscle-strengthening strategies to improve long-term maintenance of regular strengthening exercise programs.


Subject(s)
Evidence-Based Medicine , Muscle Stretching Exercises/standards , Osteoarthritis, Knee/rehabilitation , Pain Management/methods , Resistance Training/standards , Exercise Therapy/methods , Exercise Therapy/standards , Humans , Muscle Stretching Exercises/methods , Practice Guidelines as Topic , Resistance Training/methods
11.
Physiother Can ; 68(2): 124-132, 2016.
Article in English | MEDLINE | ID: mdl-27909359

ABSTRACT

Purpose: To determine the face and content validity, construct validity, and test-retest reliability of the OA Go Away (OGA), a personalized self-management tool to promote adherence to exercise and physical activity for people with osteoarthritis (OA) of the hip or knee. Methods: The face and content validity of OGA version 1.0 were determined via interviews with 10 people with OA of the hip or knee and 10 clinicians. A revised OGA version 2.0 was then tested for construct validity and test-retest reliability with a new sample of 50 people with OA of the hip or knee by comparing key items in the OGA journal with validated outcome measures assessing similar health outcomes and comparing scores on key items of the journal 4-7 days apart. Face and content validity were then confirmed with a new sample of 5 people with OA of the hip or knee and 5 clinicians. Results: Eighteen of 30 items from the OGA version 1.0 and 41 of 43 items from the OGA version 2.0 journal, goals and action plan, and exercise log had adequate content validity. Construct validity and test-retest reliability were acceptable for the main items of the OGA version 2.0 journal. The OGA underwent modifications based on results and participant feedback. Conclusion: The OGA is a novel self-management intervention and assessment tool for people with OA of the hip or knee that shows adequate preliminary measurement properties.


Objectif : Déterminer l'apparence et la validité de contenu, la validité de concept et la fiabilité test-retest de l'outil OA Go Away (OGA), un outil personnalisé d'autogestion visant à promouvoir l'observance aux exercices et à l'activité physique chez les personnes qui ont de l'arthrose de la hanche ou du genou. Méthodes : L'apparence et la validité de contenu de l'outil OGA version 1.0 ont été déterminées au moyen d'entrevues menées auprès de 10 personnes vivant avec l'arthrose de la hanche ou du genou et de 10 cliniciens. Une version révisée 2.0 a ensuite fait l'objet de tests visant à déterminer la validité de concept et la fiabilité test-retest au moyen d'un nouvel échantillon de 50 personnes vivant avec l'arthrose de la hanche ou du genou en comparant des éléments clés du journal de l'outil OGA avec des mesures de résultats validées évaluant des éléments semblables et comparant les scores attribués à des éléments clés du journal à des intervalles de 4 à 7 jours. On a ensuite confirmé l'apparence et la validité de contenu en utilisant un nouvel échantillon de cinq personnes vivant avec l'arthrose de la hanche ou du genou et de cinq cliniciens. Résultats : Dix-huit des 30 questions de la version 1.0 de l'outil OGA et 41 des 43 questions de la version 2.0 du Journal, Buts, Plan d'action et Registre des exercices présentaient un contenu d'une validité adéquate. La validité de concept et la fiabilité test-retest étaient acceptables pour les principaux éléments de la version 2.0 du Journal de l'outil OGA. L'outil OGA a subi des modifications basées sur les résultats et les commentaires des participants. Conclusion : L'outil OGA est un nouvel outil d'intervention et d'évaluation en autogestion qui s'adresse aux personnes atteintes d'arthrose de la hanche ou du genou et qui affiche des caractéristiques de propriétés métrologiques préliminaires adéquates.

12.
PLoS One ; 9(5): e95369, 2014.
Article in English | MEDLINE | ID: mdl-24840205

ABSTRACT

Clinical practice guidelines (CPGs) have been developed to summarize evidence about the management of rheumatoid arthritis (RA) and facilitate the uptake of evidence-based knowledge by consumers, health professionals, health administrators and policy makers. The objectives of this review was to assess the quality of CPGS on non-pharmacological management of RA with a standardized and validated instrument--the Appraisal of Guidelines for Research and Evaluation (AGREE II) tool and summarize the key recommendations from these CPGs. Scientific literature databases from 2001 to 2013 were systematically searched and a total of 13 CPGs for RA was identified. Only a minority of AGREE II domains were effectively addressed by the CPGS. Scope and purpose was effectively addressed in 10 out of 13 CPGs, stakeholder involvement in 11 CPGs, rigor of development in 6 CPGs, clarity/presentation in 9 CPGs, editorial independence in 1 CPGs, and applicability in none of the CPGs. The overall quality of the included CPGs according to the 7-point AGREE II scoring system was 4.8 ± 1.04. Patient education/self-management, aerobic, dynamic and stretching exercises were the commonly recommended for the non-pharmacological management of RA by the high-quality CPGs. The general clinical management recommendations tended to be similar among high-quality CPGs. Non-pharmacological management interventions were superficially addressed in more than half of the selected CPGs. CPGs creators should use the AGREE II criteria when developing guidelines. Innovative and effective methods of CPGs implementation to users are needed to ultimately enhance the quality of life of arthritic individuals. In addition, it was difficult to establish between strongly recommended, recommended and weakly recommended, as there is no consensus between the strength of the recommendations between the appraised CPGs.


Subject(s)
Arthritis, Rheumatoid , Clinical Protocols/standards , Disease Management , Humans , Quality of Life
13.
PLoS One ; 9(1): e82986, 2014.
Article in English | MEDLINE | ID: mdl-24427268

ABSTRACT

Clinical practice CPGs (CPGs) have been developed to summarize evidence related to the management of osteoarthritis (OA). CPGs facilitate uptake of evidence-based knowledge by consumers, health professionals, health administrators and policy makers. The objectives of the present review were: 1) to assess the quality of the CPGs on non-pharmacological management of OA; using a standardized and validated instrument--the Appraisal of Guidelines Research and Evaluation (AGREE II) tool--by three pairs of trained appraisers; and 2) to summarize the recommendations based on only high-quality existing CPGs. Scientific literature databases from 2001 to 2013 were systematically searched for the state of evidence, with 17 CPGs for OA being identified. Most CPGs effectively addressed only a minority of AGREE II domains. Scope and purpose was effectively addressed in 10 CPGs on the management of OA, stakeholder involvement in 12 CPGs, rigour of development in 10 CPGs, clarity/presentation in 17 CPGs, editorial independence in 2 CPGs, and applicability in none of the OA CPGs. The overall quality of the included CPGs, according to the 7-point AGREE II scoring system, is 4.8 ± 0.41 for OA. Therapeutic exercises, patient education, transcutaneous electrical nerve stimulation, acupuncture, orthoses and insoles, heat and cryotherapy, patellar tapping, and weight control are commonly recommended for the non-pharmacological management of OA by the high-quality CPGs. The general clinical management recommendations tended to be similar among high-quality CPGs, although interventions addressed varied. Non-pharmacological management interventions were superficially addressed in more than half of the selected CPGs. For CPGs to be standardized uniform creators should use the AGREE II criteria when developing CPGs. Innovative and effective methods of CPG implementation to users are needed to ultimately enhance the quality of life of arthritic individuals.


Subject(s)
Disease Management , Osteoarthritis/therapy , Quality of Health Care , Evidence-Based Medicine , Humans , Quality of Life
14.
Int J Lang Commun Disord ; 48(5): 508-21, 2013.
Article in English | MEDLINE | ID: mdl-24033650

ABSTRACT

BACKGROUND: Speech and language therapy (SLT) for aphasia can be difficult to access in the later stages of stroke recovery, despite evidence of continued improvement with sufficient therapeutic intensity. Computerized aphasia therapy has been reported to be useful for independent language practice, providing new opportunities for continued rehabilitation. The success of this option depends on its acceptability to patients and carers. AIMS: To investigate factors that affect the acceptability of independent home computerized aphasia therapy practice. METHODS & PROCEDURES: An acceptability study of computerized therapy was carried out alongside a pilot randomized controlled trial of computer aphasia therapy versus usual care for people more than 6 months post-stroke. Following language assessment and computer exercise prescription by a speech and language therapist, participants practised three times a week for 5 months at home with monthly volunteer support. Semi-structured interviews were conducted with 14 participants who received the intervention and ten carers (n = 24). Questions from a topic guide were presented and answered using picture, gesture and written support. Interviews were audio recorded, transcribed verbatim and analysed thematically. Three research SLTs identified and cross-checked themes and subthemes emerging from the data. OUTCOMES & RESULTS: The key themes that emerged were benefits and disadvantages of computerized aphasia therapy, need for help and support, and comparisons with face-to-face therapy. The independence, flexibility and repetition afforded by the computer was viewed as beneficial and the personalized exercises motivated participants to practise. Participants and carers perceived improvements in word-finding and confidence-talking. Computer practice could cause fatigue and interference with other commitments. Support from carers or volunteers for motivation and technical assistance was seen as important. Although some participants preferred face-to-face therapy, using a computer for independent language practice was perceived to be an acceptable alternative. CONCLUSIONS & IMPLICATIONS: Independent computerized aphasia therapy is acceptable to stroke survivors. Acceptability can be maximized by tailoring exercises to personal interests of the individual, ensuring access to support and giving consideration to fatigue and life style when recommending practice schedules.


Subject(s)
Aphasia/therapy , Attitude to Computers , Language Therapy/methods , Patient Acceptance of Health Care/psychology , Therapy, Computer-Assisted/methods , Adult , Aged , Aged, 80 and over , Aphasia/etiology , Fatigue/etiology , Female , Humans , Language Therapy/psychology , Male , Middle Aged , Motivation , Self Care/adverse effects , Self Care/methods , Stroke/complications
15.
Nurse Res ; 20(3): 12-6, 2013 Jan.
Article in English | MEDLINE | ID: mdl-23346773

ABSTRACT

AIM: To present an approach to involving people with communication disorders in research. BACKGROUND: Patient and public involvement (PPI) is promoted at all stages of research, with everyone having a right to be involved. However, the high level of communication skills often required precludes the involvement of people with communication disorders. As people from several healthcare groups have communication difficulties, it is important to establish approaches that can help to involve them. DATA SOURCE: A study involving people with communication difficulties using computerised aphasia treatment. REVIEW METHODS: The paper describes techniques used to help an advisory group comprising people with aphasia and their carers to collaborate. Reflections on participating in a research group were elicited through videoed interviews. A thematic analysis of the video transcripts identified issues important to the group's members. DISCUSSION: The approach to patient and public involvement in research enabled collaboration with people with aphasia at all stages of research, including contributing to recruitment, refinement of protocols, new research methods and dissemination of project outcomes. Allowing time for careful preparation of group meetings, facilitation techniques and activities is crucial to achieve this level of involvement. CONCLUSION: The group experienced increased confidence in communicating, stimulation and feelings of empowerment and being able to influence the future treatment of people with aphasia. IMPLICATIONS FOR PRACTICE/RESEARCH: People with communication difficulties need not be excluded from PPI activities designed to inform clinical practice or health research. Inclusion of this group can be made possible by using creative methods of exchanging ideas, reducing reliance on rapid, complex spoken interaction.


Subject(s)
Communication Barriers , Health Services Research , Humans , Principal Component Analysis , United Kingdom
16.
Stroke ; 43(7): 1904-11, 2012 Jul.
Article in English | MEDLINE | ID: mdl-22733794

ABSTRACT

BACKGROUND AND PURPOSE: The purpose of this study was to test the feasibility of conducting a randomized controlled trial to study the effectiveness of self-managed computer treatment for people with long-standing aphasia after stroke. METHOD: In this pilot single-blinded, parallel-group, randomized controlled trial participants with aphasia were allocated to self-managed computer treatment with volunteer support or usual care (everyday language activity). The 5-month intervention period was followed by 3 months without intervention to investigate treatment maintenance. RESULTS: Thirty-four participants were recruited. Seventeen participants were allocated to each group. Thirteen participants from the usual care group and 15 from the computer treatment group were followed up at 5 months. An average of 4 hours 43 minutes speech and language therapy time and 4 hours volunteer support time enabled an average of 25 hours of independent practice. The difference in percentage change in naming ability from baseline at 5 months between groups was 19.8% (95% CI, 4.4-35.2; P=0.014) in favor of the treatment group. Participants with more severe aphasia showed little benefit. Results demonstrate early indications of cost-effectiveness of self-managed computer therapy. CONCLUSIONS: This pilot trial indicates that self-managed computer therapy for aphasia is feasible and that it will be practical to recruit sufficient participants to conduct an appropriately powered clinical trial to investigate the effectiveness of self-managed computer therapy for people with long-standing aphasia. Clinical Trial Registration- www.controlled-trials.com. Unique identifier: ISRCTN91534629.


Subject(s)
Aphasia/epidemiology , Aphasia/therapy , Self Care/methods , Stroke/epidemiology , Stroke/therapy , Therapy, Computer-Assisted/methods , Adult , Aged , Aged, 80 and over , Aphasia/economics , Cost-Benefit Analysis , Female , Humans , Male , Middle Aged , Pilot Projects , Self Care/economics , Single-Blind Method , Stroke/economics , Therapy, Computer-Assisted/economics , Time Factors , Treatment Outcome
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