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INTRODUCTION: Individuals with traumatic brain injury (TBI) frequently need assistance to manage complex everyday activities. However, little is known about the types of cognitive assistance that can be used to facilitate optimal independence. A conversion mixed method study using video analysis was conducted to describe assistance provided by trained occupational therapists during three everyday tasks carried out in the participants' homes and surrounding environments. METHODS: Forty-five people with moderate and severe TBI were tested by three occupational therapists using the Instrumental Activities of Daily Living Profile, an observation-based assessment that documents independence in complex everyday activities and the minimal assistance required to attain task goals. Using video analysis, difficulties experienced by the people with TBI during a meal preparation and grocery shopping task, and the cognitive assistance provided by the occupational therapists in response to these difficulties, were documented. Statistical analyses were also completed to identify the main difficulties and types of cognitive assistance provided during the evaluation, for the whole group and depending on their level of independence. RESULTS: Nine types of cognitive assistance were used by occupational therapists, including implicit (stimulating thought processes), and more explicit assistance (cueing), to facilitate task performance. When needed, motivational assistance, which consisted of encouraging participants to think for themselves, was also used. Stimulating thought processes was mostly used to support goal formulation and planning, whereas cueing was used in numerous instances. Participants with lower levels of independence received more assistance of almost all types to support them. CONCLUSION: Using these findings, training could be developed for caregivers and occupational therapists to support them in providing minimal and personalised cognitive assistance. Further research is needed to examine the extent to which all types of cognitive assistance are effective in helping various cognitive profiles of people with TBI attain optimal independence.
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Lesiones Traumáticas del Encéfalo , Terapia Ocupacional , Humanos , Actividades Cotidianas , Terapia Ocupacional/métodos , Lesiones Traumáticas del Encéfalo/psicología , Cuidadores , CogniciónRESUMEN
INTRODUCTION: Following a traumatic brain injury (TBI), meal preparation may become challenging as it involves multiple cognitive abilities and sub-tasks. To support this population, the Cognitive Orthosis for coOKing (COOK) was developed in partnership with an alternative residential resource for people with severe TBI. However, little is known about the usability of this technology to support people with TBI living in their own homes. METHODS: A usability study was conducted using a mixed-methods single-case design with a 35-year-old man with severe TBI living alone at home. The number of assistances provided, time taken and the percentage of unnecessary actions during a meal preparation task were documented nine times to explore the usability of COOK. Interviews were also conducted with the participant to document his satisfaction with COOK. Potential benefits were explored via the number of meals prepared per week. RESULTS: The usability of COOK was shown to be promising as the technology helped the participant prepare complex meals, while also reducing the number of assistances needed and the percentage of unnecessary actions. However, several technical issues and contextual factors influenced the efficiency and the participant's satisfaction with COOK. Despite improving his self-confidence, COOK did not help the participant prepare more meals over time. CONCLUSION: This study showed that COOK was easy to use and promising, despite technical and configuration issues. Results suggest the importance of further technological developments to improve COOK's usability and fit with the needs of people with TBI living in their own homes.
Cognitive Orthosis for coOKing (COOK) is a promising technology to support people with TBI when preparing meals within their homes, though usability issues need to be corrected.Factors such as current meal-preparation related habits, expectations and availability of technical support were found to influence the usability of COOK.Various questions to consider in future studies involving an assistive technology for cognition to support meal preparation were identified.
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OBJECTIVES: This study aimed to investigate the feasibility of implementing an assistive technology for meal preparation called COOK within a supported community residence for a person with an acquired brain injury. METHODS: Using a mixed-methods approach, a multiple baseline single-case experimental design and a descriptive qualitative study were conducted. The participant was a 47-year-old woman with cognitive impairments following a severe stroke. She received 21 sessions of training on using COOK within a shared kitchen space. During meal preparation, independence and safety were evaluated using three target behaviours: required assistance, task performance errors, and appropriate responses to safety issues, which were compared with an untrained control task, making a budget. Benefits, barriers, and facilitators were assessed via three individual interviews with the client and three focus groups with the care team. RESULTS: Both quantitative and qualitative analyses showed that COOK significantly increased independence and safety during meal preparation but not in the control task. Stakeholders suggested that the availability of a training toolkit to a greater number of therapists at the residence and installation of COOK within the client's apartment would help with successful adoption of this technology. CONCLUSION: COOK is a promising assistive technology for individuals with cognitive deficits who live in supported community residences.Implication For RehabilitationCOOK is a promising assistive technology for cognition to increase independence and safety in meal preparation for clients with ABI within their supported living contexts.Receiving training from an expert and the availability of technical support are imperative to the successful adoption of COOK.
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Lesiones Encefálicas , Trastornos del Conocimiento , Disfunción Cognitiva , Dispositivos de Autoayuda , Femenino , Humanos , Adulto , Persona de Mediana Edad , CogniciónRESUMEN
BACKGROUND: Major neurocognitive disorder (MND) alters cognition, memory and language, and consequently affects communication. Speech-language therapy (SLT) may alleviate communication difficulties. AIMS: This pilot study explored the effects of intensive SLT emphasizing memory, language, and discourse impairment and complementary communication strategies, called Aid for Communication-For Persons Who Live with MND (AID-COMp). METHODS & PROCEDURES: We employed a mixed design using quantitative and qualitative methods with four dyads, including a person living with MND (PwMND) and a family carer. The design included a control period, and we tested participants before (T1) and after 2 months without therapy (T2). AID-COMp was then provided intensively three times per week for 10 sessions and participants were tested again (T3). Participants were also involved in an individual qualitative interview after therapy ended, probing their experience and possible effects on their lives. AID-COMp included: (1) spaced retrieval to teach the use of a memory book; (2) semantic and phonological therapy for lexical access; (3) discourse treatment based on the analysis of the macrostructure and microstructure of stories in pictures and texts; and (4) PACE therapy for generalization. Carers were not included in treatment, did not attend sessions and were only involved in the evaluations. Measures included language, communication, cognitive and well-being tests. Paired t-tests (one-tailed) compared scores for the control period, that is, T1 versus T2. We compared scores after therapy (T3) with those at T2. Interviews were transcribed verbatim and analysed qualitatively. OUTCOMES & RESULTS: For the control period, only text comprehension scores significantly decreased in PwMND. After therapy, improvements occurred on the Boston Naming Test (BNT), the Mini-Mental State Exam (MMSE) and the well-being measure for the PwMND. Carer scores were unchanged after therapy except for their perception of the PwMND's communication which improved. Qualitative findings comprised three themes: (1) understanding therapy; (2) recovering abilities and relationships; and (3) naming further needs. CONCLUSIONS & IMPLICATIONS: We hypothesize that AID-COMp addressed the underlying impairments associated with MND and provided various tools to PwMND for composing effectively with them. Indeed, AID-COMp appears to provoke some degree of improvement of language skills, cognition and emotional well-being. These improvements may lead to more confidence in conversation and the recovery of relationships between the PwMND and their entourage. It is also possible that improvements acted positively on one another. These preliminary findings warrant further controlled studies with more participants, including a qualitative exploration of participant experiences. WHAT THIS PAPER ADDS: What is already known on the subject MND affects cognition and communication, which are crucial to a good relationship between a carer and a person with MND. Interventions involving only PwMND have been shown to be effective, but do not address all the communication impairments in the mild stage of MND. These interventions may require many therapy sessions. Generally, SLT interventions do not examine the potential effects of an intervention on carers. What this paper adds to existing knowledge AID-COMp, an intensive intervention of 10 sessions over 1 month, was provided to people living with MND in the community. It included training the person with MND in using a memory notebook combined with semantic and phonological therapy, a new discourse therapy and PACE therapy, addressing several communication deficits. After a control period of 2 months without intervention and a 1-month intensive intervention, the results showed significant improvement in naming, cognition and communication, and PwMND well-being. Moreover, the carers witnessed the impacts of therapy in their everyday life interactions with the PwMND. What are the potential or actual clinical implications of this work AID-COMp can provide communication support for PwMND that has further benefits reported by both PwMND and carers. We described AID-COMp in detail to inspire clinicians in providing SLT for unserved PwMND. Future research studies should use controlled designs, more participants and a qualitative component.
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Trastornos de la Comunicación , Habla , Humanos , Trastornos Neurocognitivos , Proyectos Piloto , Logopedia/métodosRESUMEN
PURPOSE: Because of their communication difficulties, persons with aphasia are at risk of not fully participating in significant activities after rehabilitation. Speech-language pathologists can contribute to support optimal social participation in rehabilitation. A community of practice (CoP) was designed to provide motivated clinicians with opportunities to acquire knowledge and reflect on social participation within aphasia rehabilitation. The aim of this study was to describe the outcomes of this CoP according to the perspectives of speech-language pathologist participants. METHODS: Semi-structured individual interviews were conducted 4 to 10 weeks after the end of the CoP with 13 speech-language pathologist participants. Analyses were guided by grounded theory. RESULTS: Participants perceived that the CoP experience contributed to a better alignment of their practice with the ideal end purpose of optimizing social participation. A sense of community emerged among CoP members, who collectively reflected on their practice. Participants stated feeling equipped to adopt new practices, adopting new practices for optimizing social participation, and/or advocating for better services for persons with aphasia. They felt increased confidence, motivation, well-being, and/or energy towards their practice. CONCLUSIONS: CoPs can help speech-language pathologists to more confidently practice with the goal of optimizing the social participation of persons with aphasia.Implications for rehabilitationSpeech-language pathologists in aphasia rehabilitation, as a result of being involved in a community of practice (CoP) about social participation, may offer more evidence-based services aiming at optimizing the social participation of persons with aphasia.Markers of a successful CoP may include participants' increased feelings of confidence, motivation, well-being, and/or energy towards their practice.CoPs can be used for continuing education purposes and support the development of clinical expertise among professionals, such as speech-language pathologists in aphasia rehabilitation.
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Afasia , Patología del Habla y Lenguaje , Afasia/rehabilitación , Actitud del Personal de Salud , Humanos , Patólogos , Medición de Resultados Informados por el Paciente , Participación Social , HablaRESUMEN
PURPOSE: Considering the key role of health care providers in integrating assistive technologies into clinical settings (e.g., in/outpatient rehabilitation) and home, this study explored the care providers' perspectives on benefits, barriers and facilitators to the implementation of the Cognitive Orthosis for coOking (COOK) for adults with traumatic brain injury (TBI) within clinical contexts and homes. METHODS: Using a qualitative descriptive approach, semi-structured individual interviews and focus groups were carried out with experienced care providers of adults with TBI (n = 30) in Ontario-Canada. Qualitative analysis based on the Miles et al approach was used. RESULTS: According to the participants, COOK could potentially be used with individuals with cognitive impairments (TBI and non-TBI) to increase safety and independence in meal preparation and support healthcare providers. However, limited access to funding, clients' lack of motivation/knowledge, and the severity of their cognitive and motor impairments were perceived as potential barriers. Facilitators to the use of COOK include training sessions, availability of private/provincial financing, and comprehensive assessments by a clinical team prior to use. CONCLUSIONS: Health care providers' perspectives will help develop implementation strategies to facilitate the adoption of COOK within homes and clinical contexts for individuals with TBI and improve the next version of this technology.IMPLICATIONS FOR REHABILITATIONCOOK shows a high potential for increasing independence and safety during meal preparation with its sensor-based monitoring of the environment and cognitive-based assistance, for adults with TBI.Comprehensive clinical assessments to identify individuals' therapeutic goals, clinical characteristics, and living environments are necessary to facilitate the deployment of COOK.
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Lesiones Traumáticas del Encéfalo , Personal de Salud , Adulto , Lesiones Traumáticas del Encéfalo/rehabilitación , Cognición , Culinaria , Personal de Salud/psicología , Humanos , Ontario , Aparatos Ortopédicos , Investigación CualitativaRESUMEN
BACKGROUND: Strong evidence supports beginning stroke rehabilitation as soon as the patient's medical status has stabilized and continuing following discharge from acute care. However, adherence to rehabilitation treatments over the rehabilitation phase has been shown to be suboptimal. OBJECTIVE: The aim of this study is to assess the impact of a telerehabilitation platform on stroke patients' adherence to a rehabilitation plan and on their level of reintegration into normal social activities, in comparison with usual care. The primary outcome is patient adherence to stroke rehabilitation (up to 12 weeks), which is hypothesized to influence reintegration into normal living. Secondary outcomes for patients include functional recovery and independence, depression, adverse events related to telerehabilitation, use of services (up to 6 months), perception of interprofessional shared decision making, and quality of services received. Interprofessional collaboration as well as quality of interprofessional shared decision making will be measured with clinicians. METHODS: In this interrupted time series with a convergent qualitative component, rehabilitation teams will be trained to develop rehabilitation treatment plans that engage the patient and family, while taking advantage of a telerehabilitation platform to deliver the treatment. The intervention will be comprised of 220 patients who will take part in stroke telerehabilitation with an interdisciplinary group of clinicians (telerehabilitation group) versus face-to-face standard of care (control group: n=110 patients). RESULTS: Our Research Ethics Board approved the study in June 2020. Data collection for the control group is underway, with another year planned before we begin the intervention phase. CONCLUSIONS: This study will contribute to the minimization of both knowledge and practice gaps, while producing robust, in-depth data on the factors related to the effectiveness of telerehabilitation in a stroke rehabilitation continuum. Findings will inform best practice guidelines regarding telecare services and the provision of telerehabilitation, including recommendations for effective interdisciplinary collaboration regarding stroke rehabilitation. TRIAL REGISTRATION: ClinicalTrials.gov NCT04440215; https://clinicaltrials.gov/ct2/show/NCT04440215. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/32134.
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Purpose A core outcome set (COS; an agreed minimum set of outcomes) was developed to address the heterogeneous measurement of outcomes in poststroke aphasia treatment research. Successful implementation of a COS requires change in individual and collective research behavior. We used the Theoretical Domains Framework (TDF) to understand the factors influencing researchers' use and nonuse of the Research Outcome Measurement in Aphasia (ROMA) COS. Method Aphasia trialists and highly published treatment researchers were identified from the Cochrane review of speech and language therapy for aphasia following stroke and through database searches. Participants completed a theory-informed online survey that explored factors influencing COS use. Data were analyzed using descriptive statistics and qualitative content analysis. Results Sixty-four aphasia researchers from 13 countries participated. Most participants (81%) were aware of the ROMA COS, and participants identified more facilitators than barriers to its use. The TDF domain with the highest agreement (i.e., facilitator) was "knowledge" (84% agree/strongly agree). Participants had knowledge of the measures included in the ROMA COS, their associated benefits, and the existing recommendations. The TDF domains with the least agreement (i.e., barriers) were "reinforcement" (34% agree/strongly agree); "social influences" (41% agree/strongly agree); "memory, attention, and decision processes" (45% agree/strongly agree); and "behavioral regulation" (49% agree/strongly agree). Hence, participants identified a lack of external incentives, collegial encouragement, and monitoring systems as barriers to using the ROMA COS. The suitability and availability of individual measurement instruments, as well as burden associated with collecting the COS, were also identified as reasons for nonuse. Conclusions Overall, participants were aware of the benefits of using the ROMA COS and believed that its implementation would improve research quality; however, incentives for routine implementation were reported to be lacking. Findings will guide future revisions of the ROMA COS and the development of theoretically informed implementation strategies. Supplemental Material https://doi.org/10.23641/asha.16528524.
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Afasia , Accidente Cerebrovascular , Afasia/etiología , Afasia/terapia , Humanos , Evaluación de Resultado en la Atención de Salud , Logopedia , Accidente Cerebrovascular/complicaciones , Encuestas y CuestionariosRESUMEN
Background. Occupational therapists play a major role in identifying the assistance needs of individuals living with a traumatic brain injury. However, to obtain an accurate assessment, verbal assistance should be provided only when necessary, according to the person's needs. Purpose. This study aimed to understand (1) how verbal assistance is provided during an evaluation of Instrumental Activities of Daily Living and (2) why it is provided in this manner. Method. Interviews were conducted with three expert occupational therapists using their own videotaped evaluation and a "think-aloud" method to explore their clinical reasoning when providing verbal assistance. Data were analyzed using thematic analysis. Findings. The process of providing verbal assistance was recognized as flexible and nonlinear, and influenced by various factors including the participants' level of understanding of the client's abilities. Implications. This information will help therapists better understand how and when to provide verbal assistance when assessing their clients.
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Lesiones Traumáticas del Encéfalo , Terapia Ocupacional , Actividades Cotidianas , Humanos , Terapeutas OcupacionalesRESUMEN
Aphasia often restricts participation. People living with aphasia (PLWA) engage in fewer activities, which leads to fewer interactions than before aphasia. Analyses of interactions with non-familiar people in activities of daily life could provide knowledge about how to integrate these situations in rehabilitation and facilitate ongoing PLWA participation post-rehabilitation. This qualitative study is the first to examine how PLWA make their requests understood in service encounters despite aphasia. Six people living with moderate or severe aphasia were video-recorded in situations of service encounters, e.g., pharmacies, specialised shops, restaurants, and others. We identified fifty-nine occurrences with one or several difficulties in the formulation of the request. They were examined, including the clerks' responses and ensuing interaction using multimodal conversation analysis. Results showed that PLWA used nonverbal communication within the physical environment and the context of the interaction to support verbal production. In the majority of situations, the clerks understood the request promptly. In other situations, they both collaborated to achieve a clear understanding of the request. Moreover, the findings attest to the competence of people living with moderate or severe aphasia in engaging in service encounters and add to the knowledge base about interaction and social participation in aphasia.
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Afasia , Accidente Cerebrovascular , Humanos , Estudios Longitudinales , Investigación CualitativaRESUMEN
Families providing care to relatives with Alzheimer's disease are quickly destabilized by changes that disrupt communication. This pilot mixed-design study aimed to provide a quantitative and qualitative evaluation of a communication-based training program for carers of people with early-stage Alzheimer's disease. Five participants received three training sessions. The use of communication strategies by participants and their effectiveness were evaluated before and after the training, and a focus group was conducted to gather participants' impressions about the impacts of the training on communication with the person they cared for. The AID-COM (AID for COMmunication) program appears to have met expectations.
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Enfermedad de Alzheimer , Comunicación , Demencia , Cuidadores , Humanos , Proyectos Piloto , Evaluación de Programas y Proyectos de SaludRESUMEN
BACKGROUND: Communication is at the heart of relationships, especially for couples. When language is altered, as it is in aphasia, communication in couples can be affected. AIMS: To explore how members of a couple perceive the impact of aphasia on their communication. METHODS & PROCEDURES: Nine French-speaking couples participated in the study. One member of each couple had chronic stroke-related aphasia, which varied in type and severity. The 18 participants took part in individual semi-structured interviews to understand their perspective on communication within their couple. The interviews were recorded, transcribed and analysed with a qualitative thematic analysis. OUTCOMES & RESULTS: Three main themes emerged: (1) experiencing limitations in conversation; (2) assuming changed speaking and listening roles; and (3) experiencing new emotions, feelings and reactions in communication. Couples experienced diminished frequency and duration of conversations as well as restrained topics after the onset of aphasia. Ten participants reported that each member's communication role of listener versus speaker had changed, and that the person with aphasia became a less active participant. Communication was described as 'positive' before aphasia and 'fine' to 'difficult' following aphasia. Persons with aphasia and spouses expressed experiencing difficulties managing emotions related to communication. Frustration and caution towards the other member of the couple had been associated with aphasia. In addition, five spouses reported that they refrained from initiating discussions on specific topics in order to maintain a positive relationship with the person with aphasia. CONCLUSION & IMPLICATIONS: The results describe some of the consequences of aphasia on communication in couples. Clinicians could use interviews to understand the impact of aphasia on a couple's communication. This may help to design communication partner training (CPT) that better aligns with the particular needs of couples living with aphasia, acknowledging the importance of emotional dimensions of relationships. What this paper adds What is already known on the subject The general psychosocial impacts of aphasia on persons with aphasia and spouses are known. Their conversations have been described and used as a focus for CPT. However, CPT may be difficult to implement in clinical settings. What this paper adds to the existing knowledge This paper provides in-depth descriptions of perceived changes in relational or transactional communication by the PWA and their spouse. The frequency, duration and topics of conversations changed and emotions such as frustration and caution appeared. Participants assumed changed speaking and listening roles. What are the potential or actual clinical implications of this work? The participants' description of communication could be used by speech-language pathologists when conducting CPT to illustrate how aphasia affects communication in couples. Emotions emerging as a result of changes in communication following aphasia should be assessed before CPT and could be a starting point to work on communication. This could support clients' commitment in CPT.
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Afasia/psicología , Esposos/psicología , Anciano , Anciano de 80 o más Años , Afasia/etiología , Femenino , Humanos , Relaciones Interpersonales , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Patología del Habla y Lenguaje , Accidente Cerebrovascular/complicacionesRESUMEN
BACKGROUND: Aphasia is a communication disorder affecting participation. Although there are evidence-based practice recommendations about participation and aphasia rehabilitation, it may be challenging for speech-language pathologists to ensure that rehabilitation activities have an impact on the person's participation, in part due to time limitations. Participation remains limited after rehabilitation for persons who have aphasia. Communities of practice (CoPs) are a collaborative knowledge transfer strategy that can be used for evidence-based practice implementation. The aim of this study was to describe the components and evaluate a CoP for speech-language pathologists about participation and aphasia rehabilitation. METHODS: Logic analysis was used to determine the adequacy between resources, implemented activities, outputs and short-term outcomes of the CoP. Qualitative and quantitative descriptive data were collected through observation and participants' logbooks. Outputs and outcomes of the CoP were revealed through thematic analysis and interpretation of descriptive statistics. RESULTS: Resources including CoP design and educational aims, human and material resources were combined to create various web-based, online and offline activities. Participants invested more time per week than expected in the CoP, shared and created clinical tools and appreciated the array of suggested activities. Participant engagement allowed them to reflect, interact and collaborate with each other. All 13 participants reported they acquired knowledge about clinical tools and 12 mentioned they reflected on their practice. While the CoP was ongoing, six participants noticed evidence-practice gaps, seven prepared to change their practice, and three changed their practice towards including more participation-based considerations. CONCLUSIONS: This study showed that speech-language pathologists can include more participation-based approaches in aphasia rehabilitation as a result of participating in a time-bound, web-based CoP.
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Afasia/rehabilitación , Conducta Cooperativa , Modelos Teóricos , Patología del Habla y Lenguaje , Adulto , Atención a la Salud , Práctica Clínica Basada en la Evidencia , Femenino , Humanos , Lógica , Masculino , Persona de Mediana Edad , Quebec , Patología del Habla y Lenguaje/educación , Patología del Habla y Lenguaje/organización & administraciónRESUMEN
PURPOSE: This study synthesised the findings of three separate consensus processes exploring the perspectives of key stakeholder groups about important aphasia treatment outcomes. This process was conducted to generate recommendations for outcome domains to be included in a core outcome set for aphasia treatment trials. MATERIALS AND METHODS: International Classification of Functioning, Disability, and Health codes were examined to identify where the groups of: (1) people with aphasia, (2) family members, (3) aphasia researchers, and (4) aphasia clinicians/managers, demonstrated congruence in their perspectives regarding important treatment outcomes. Codes were contextualized using qualitative data. RESULTS: Congruence across three or more stakeholder groups was evident for ICF chapters: Mental functions; Communication; and Services, systems, and policies. Quality of life was explicitly identified by clinicians/managers and researchers, while people with aphasia and their families identified outcomes known to be determinants of quality of life. CONCLUSIONS: Core aphasia outcomes include: language, emotional wellbeing, communication, patient-reported satisfaction with treatment and impact of treatment, and quality of life. International Classification of Functioning, Disability, and Health coding can be used to compare stakeholder perspectives and identify domains for core outcome sets. Pairing coding with qualitative data may ensure important nuances of meaning are retained. Implications for rehabilitation The outcomes measured in treatment research should be relevant to stakeholders and support health care decision making. Core outcome sets (agreed, minimum set of outcomes, and outcome measures) are increasingly being used to ensure the relevancy and consistency of the outcomes measured in treatment studies. Important aphasia treatment outcomes span all components of the International Classification of Functioning, Disability, and Health. Stakeholders demonstrated congruence in the identification of important outcomes which related Mental functions; Communication; Services, systems, and policies; and Quality of life. A core outcome set for aphasia treatment research should include measures relating to: language, emotional wellbeing, communication, patient-reported satisfaction with treatment and impact of treatment, and quality of life. Coding using the International Classification of Functioning, Disability, and Health, presents a novel methodology for the comparison of stakeholder perspectives to inform recommendations for outcome constructs to be included in a core outcome set. Coding can be paired with qualitative data to ensure nuances of meaning are retained.
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Afasia/rehabilitación , Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud , Calidad de Vida , Afasia/psicología , Evaluación de la Discapacidad , Personas con Discapacidad/psicología , Personas con Discapacidad/rehabilitación , Humanos , Salud Mental , Evaluación de Resultado en la Atención de Salud/métodos , Resultado del TratamientoRESUMEN
BACKGROUND: A core outcome set (COS; an agreed, minimum set of outcomes) was needed to address the heterogeneous measurement of outcomes in aphasia treatment research and to facilitate the production of transparent, meaningful, and efficient outcome data. OBJECTIVE: The Research Outcome Measurement in Aphasia (ROMA) consensus statement provides evidence-based recommendations for the measurement of outcomes for adults with post-stroke aphasia within phases I-IV aphasia treatment studies. METHODS: This statement was informed by a four-year program of research, which comprised investigation of stakeholder-important outcomes using consensus processes, a scoping review of aphasia outcome measurement instruments, and an international consensus meeting. This paper provides an overview of this process and presents the results and recommendations arising from the international consensus meeting. RESULTS: Five essential outcome constructs were identified: Language, communication, patient-reported satisfaction with treatment and impact of treatment, emotional wellbeing, and quality of life. Consensus was reached for the following measurement instruments: Language: The Western Aphasia Battery Revised (WAB-R) (74% consensus); emotional wellbeing: General Health Questionnaire (GHQ)-12 (83% consensus); quality of life: Stroke and Aphasia Quality of Life Scale (SAQOL-39) (96% consensus). Consensus was unable to be reached for measures of communication (where multiple measures exist) or patient-reported satisfaction with treatment or impact of treatment (where no measures exist). DISCUSSION: Harmonization of the ROMA COS with other core outcome initiatives in stroke rehabilitation is discussed. Ongoing research and consensus processes are outlined. CONCLUSION: The WAB-R, GHQ-12, and SAQOL-39 are recommended to be routinely included within phases I-IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the German Society for Aphasia Research and Therapy, and the Royal College of Speech Language Therapists.
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Afasia/terapia , Consenso , Evaluación de Resultado en la Atención de Salud , Accidente Cerebrovascular/terapia , Afasia/diagnóstico , Emociones , Humanos , Lenguaje , Guías de Práctica Clínica como Asunto , Calidad de Vida , Accidente Cerebrovascular/diagnóstico , Encuestas y CuestionariosRESUMEN
PURPOSE: After rehabilitation, it is not clear the extent to which persons living with a disability return to their former activities in the community, such as going to shopping malls. Rehabilitation professionals are faced with the challenge to adequately prepare their clients to resume community participation. The purpose of this study was to identify rehabilitation strategies aimed at preparing clients to engage in activities in shopping malls. METHOD: Twenty-two participants including 16 rehabilitation clinicians and 6 persons living with a disability participated in four nominal group sessions. Participants were questioned on current or potential rehabilitation strategies carried out to enhance participation in shopping malls for persons living with a disability. Discussions were audio-recorded and qualitative content analysis was conducted. RESULTS: Participants mentioned strategies that were either carried out by the clinician, or in collaboration with other parties. The latter type of strategies was either carried out with the collaboration of the client, the interdisciplinary team, the relatives, or community organizations. CONCLUSIONS: Rehabilitation clinicians have a role to play in preparing persons living with a disability to resume activities in a shopping mall. Additionally, therapeutic interventions in community settings may enhance the participation of rehabilitation clients in their everyday activities. Implications for rehabilitation Many strategies are currently used in rehabilitation to prepare persons living with a disability to resume shopping activities. Clinicians could implement shopping-oriented rehabilitation strategies with the client and/or with other rehabilitation partners. Involving clients in activities related to shopping might enhance their participation in shopping malls after rehabilitation. Rehabilitation clinicians can be facilitators for people living with a disability to reach optimal participation.
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Participación de la Comunidad , Personas con Discapacidad/rehabilitación , Actividades Cotidianas , Adaptación Fisiológica , Adaptación Psicológica , Adulto , Anciano , Evaluación de la Discapacidad , Femenino , Objetivos , Humanos , Masculino , Persona de Mediana EdadRESUMEN
BACKGROUND: Misperceptions regarding persons with brain injuries (PWBI) can lead to stigmatization, workplace discrimination and, in turn, influence PWBIs full vocational integration. OBJECTIVE: In this study we explored how stigma may influence return-to-work processes, experiences of stigma and discrimination at the workplace for persons with (moderate to severe) brain injuries, and strategies that can be employed to manage disclosure. METHODS: Exploratory qualitative study; used in-depth interviews and an inductive thematic analytical approach in data analysis. Ten PWBI and five employment service providers participated. PWBI discussed their work experiences, relationships with supervisors and co-workers and experiences of stigma and/or discrimination at work. Employment service providers discussed their perceptions regarding PWBI's rights and abilities to work, reported incidents of workplace discrimination, and how issues related to stigma, discrimination and disclosure are managed. RESULTS: Three themes were identified: i) public, employer and provider knowledge about brain injury and beliefs about PWBI; ii) incidents of workplace discrimination; iii) disclosure. Misperceptions regarding PWBI persist amongst the public and employers. Incidents of workplace discrimination included social exclusion at the workplace, hiring discrimination, denial of promotion/demotion, harassment, and failure to provide reasonable accommodations. Disclosure decisions required careful consideration of PWBI needs, the type of information that should be shared, and the context in which that information is shared. CONCLUSIONS: Public understanding about PWBI remains limited. PWBI require further assistance to manage disclosure and incidents of workplace discrimination.
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Lesiones Encefálicas/rehabilitación , Empleo , Reinserción al Trabajo/psicología , Discriminación Social/psicología , Estigma Social , Adulto , Anciano , Revelación , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Ontario , Prejuicio/psicología , Rehabilitación Vocacional , Reinserción al Trabajo/legislación & jurisprudencia , Discriminación Social/legislación & jurisprudenciaRESUMEN
OBJECTIVES: To understand how employment services (ES) are provided to persons with brain injuries (PWBIs) in Ontario, Canada, and the impact service delivery has on competitive-employment outcomes. DESIGN AND METHODS: A mixed-method case study of one community-based agency that provides specialized services to PWBIs. Relationships between demographic, service-related variables and employment outcomes (2009-2014) were analysed using chi-squares and analyses of variance. In addition, 14 interviews were conducted and analysed using thematic analysis. RESULTS: PWBIs accessed services on average of 16 years post injury; 64% secured at least one competitive-employment job, which was how employment success was defined in this study. Average job tenure was 368 days, and average job intensity was 3.8 hours/day. Employment success was significantly associated (p < 0.05) with use of job development, job coaching, case management and job retention services. Interviews revealed that PWBIs were provided five services: job goal(s) identification, assessment of work-related abilities/skills, job development, on-the-job supports and job retention assistance. Challenges to ES delivery included lack of suitable jobs and hiring incentives, and difficulties in establishing natural supports at the workplace. CONCLUSIONS: PWBIs' employment outcomes may be supported through provision of ES to assist with: the development of realistic job goals and job-finding skills, securing work, on-the-job coaching and advocacy with employers.
Asunto(s)
Lesiones Encefálicas/psicología , Lesiones Encefálicas/rehabilitación , Planificación en Salud Comunitaria/estadística & datos numéricos , Empleos Subvencionados/métodos , Adulto , Planificación en Salud Comunitaria/métodos , Empleo , Femenino , Humanos , Masculino , Persona de Mediana Edad , Ontario , Rehabilitación Vocacional/métodos , Estudios Retrospectivos , Adulto JovenRESUMEN
PURPOSE: Although public environments provide opportunities for participation and social inclusion, they are not always inclusive spaces and may not accommodate the wide diversity of people. The Rehabilitation Living Lab in the Mall is a unique, interdisciplinary, and multi-sectoral research project with an aim to transform a shopping complex in Montreal, Canada, into an inclusive environment optimizing the participation and social inclusion of all people. METHODS: The PRECEDE-PROCEDE Model (PPM), a community-oriented and participatory planning model, was applied as a framework. The PPM is comprised of nine steps divided between planning, implementation, and evaluation. RESULTS: The PPM is well suited as a framework for the development of an inclusive mall. Its ecological approach considers the environment, as well as the social and individual factors relating to mall users' needs and expectations. Transforming a mall to be more inclusive is a complex process involving many stakeholders. The PPM allows the synthesis of several sources of information, as well as the identification and prioritization of key issues to address. The PPM also helps to frame and drive the implementation and evaluate the components of the project. CONCLUSION: This knowledge can help others interested in using the PPM to create similar enabling and inclusive environments world-wide. Implication for rehabilitation While public environments provide opportunities for participation and social inclusion, they are not always inclusive spaces and may not accommodate the wide diversity of people. The PRECEDE PROCEDE Model (PPM) is well suited as a framework for the development, implementation, and evaluation of an inclusive mall. Environmental barriers can negatively impact the rehabilitation process by impeding the restoration and augmentation of function. Removing barriers to social participation and independent living by improving inclusivity in the mall and other environments positively impacts the lives of people with disabilities.
Asunto(s)
Personas con Discapacidad , Modelos Organizacionales , Asociación entre el Sector Público-Privado , Canadá , Humanos , Participación SocialRESUMEN
PURPOSE: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. METHODS: The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking. RESULTS: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized by family members relating to the person with aphasia, primarily linked to body functions (60%). CONCLUSIONS: People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of body function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Implications for Rehabilitation Important outcomes for people with aphasia and their families span all components of the ICF. The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia. The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF. The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families.