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BACKGROUND: Communication disabilities, such as primary progressive aphasia (PPA), impact family members as well as the individuals with the condition. To provide adequate communication care to people with PPA (PwPPA) and their family members, it is crucial to understand the communication needs from the family members' perspectives. To date, research on the communication needs of people with primary progressive aphasia and their family members from the perspectives of family members has been limited. AIMS: The specific research objectives were to explore (a) the communication needs pertaining to PwPPA in the early, middle and late stages; and (b) the communication needs pertaining to family members of PwPPA in the early, middle and late stages, from the perspectives of family members. METHODS & PROCEDURES: This study employed a qualitative description approach, underpinned by the pragmatic paradigm. Data collection involved semi-structured qualitative interviews with eight family members (relatives of four individuals with the logopenic variant of PPA, of two individuals with the nonfluent variant of PPA, of one individual with the semantic variant of PPA and of one individual with mixed PPA). Qualitative content analysis was used to identify codes and categories in relation to the research objectives. OUTCOMES & RESULTS: Qualitative content analysis revealed eight categories of communication needs pertaining to the PwPPA: person-specific needs; diagnosis and disclosure; general communication difficulties; impact on communication in everyday life; impact on cognition; impact on psychosocial well-being; impact on person's dignity and autonomy; and future planning. Six categories were identified pertaining to the family members: information about and awareness of PPA; impact of communication difficulties on family/others; increased responsibilities for the family in everyday life; impact on psychosocial well-being; and future planning. CONCLUSIONS & IMPLICATIONS: This investigation has expanded our knowledge in the area by providing insights about communication needs which speech-language pathologists and other health professionals should be aware of and take into account when providing communication care to PwPPA and their families. WHAT THIS PAPER ADDS: What is already known on the subject Person- and family-centred communication care is optimally guided by the person's and family's needs and values. Research on communication care for people with primary progressive aphasia has underscored the inclusion of family members. Previous research has investigated the impact and experiences of living with primary progressive aphasia from the family member perspective. What this paper adds to existing knowledge To date, research focusing on identifying the communication needs of people with primary progressive aphasia and their family members from the perspective of family members is limited. This study adds the family members' perspectives on the communication needs pertaining to themselves and their relatives with primary progressive aphasia in the early, middle and late stages of primary progressive aphasia. What are the potential or clinical implications of this work? Several clinical implications have been raised. Family members experience communication needs for themselves and should be included as recipients of communication care. Clinicians supporting people with primary progressive aphasia should be cognizant of the impact of communication fatigue on everyday life and therapy tasks. Communication care for this population should include communication partner training, support for psychosocial well-being and support with communication around future planning.
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BACKGROUND: Evidence-based recommendations for a core outcome set (COS; minimum set of outcomes) for aphasia treatment research have been developed (the Research Outcome Measurement in Aphasia-ROMA, COS). Five recommended core outcome constructs: communication, language, quality of life, emotional well-being and patient-reported satisfaction/impact of treatment, were identified through three international consensus studies. Constructs were paired with outcome measurement instruments (OMIs) during an international consensus meeting (ROMA-1). Before the current study (ROMA-2), agreement had not been reached on OMIs for the constructs of communication or patient-reported satisfaction/impact of treatment. AIM: To establish consensus on a communication OMI for inclusion in the ROMA COS. METHODS & PROCEDURES: Research methods were based on recommendations from the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Participants with expertise in design and conduct of aphasia trials, measurement instrument development/testing and/or communication outcome measurement were recruited through an open call. Before the consensus meeting, participants agreed on a definition of communication, identified appropriate OMIs, extracted their measurement properties and established criteria for their quality assessment. During the consensus meeting they short-listed OMIs and participants without conflicts of interest voted on the two most highly ranked instruments. Consensus was defined a priori as agreement by ≥ 70% of participants. OUTCOMES & RESULTS: In total, 40 researchers from nine countries participated in ROMA-2 (including four facilitators and three-panel members who participated in pre-meeting activities only). A total of 20 OMIs were identified and evaluated. Eight short-listed communication measures were further evaluated for their measurement properties and ranked. Participants in the consensus meeting (n = 33) who did not have conflicts of interest (n = 29) voted on the top two ranked OMIs: The Scenario Test (TST) and the Communication Activities of Daily Living-3 (CADL-3). TST received 72% (n = 21) of 'yes' votes and the CADL-3 received 28% (n = 8) of 'yes' votes. CONCLUSIONS & IMPLICATIONS: Consensus was achieved that TST was the preferred communication OMI for inclusion in the ROMA COS. It is currently available in the original Dutch version and has been adapted into English, German and Greek. Further consideration must be given to the best way to measure communication in people with mild aphasia. Development of a patient-reported measure for satisfaction with/impact of treatment and multilingual versions of all OMIs of the COS is still required. Implementation of the ROMA COS would improve research outcome measurement and the quality, relevance, transparency, replicability and efficiency of aphasia treatment research. WHAT THIS PAPER ADDS: What is already known on this subject International consensus has been reached on five core constructs to be routinely measured in aphasia treatment studies. International consensus has also been established for OMIs for the three constructs of language, quality of life and emotional well-being. Before this study, OMIs for the constructs of communication and patient-reported satisfaction/impact of treatment were not established. What this paper adds to existing knowledge We gained international consensus on an OMI for the construct of communication. TST is recommended for inclusion in the ROMA COS for routine use in aphasia treatment research. What are the potential or actual clinical implications of this work? The ROMA COS recommends OMIs for a minimum set of outcomes for adults with post-stroke aphasia within phases I-IV aphasia treatment research. Although not intended for clinical use, clinicians may employ the instruments of the ROMA COS, considering the quality of their measurement properties. The systematic inclusion of a measure of communication, such as TST, in clinical practice could ultimately support the implementation of research evidence and best practices.
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Afasia , Comunicación , Calidad de Vida , Adulto , Humanos , Actividades Cotidianas , Afasia/diagnóstico , Afasia/terapia , Técnica Delphi , Lenguaje , Evaluación de Resultado en la Atención de Salud/métodos , Proyectos de Investigación , Resultado del TratamientoRESUMEN
OBJECTIVE: Summarize literature on provider-patient communication linked to health outcomes in communicatively-vulnerable patient populations. METHODS: Scoping review of reviews: systematically searched six databases. INCLUSION CRITERIA: systematic searches and syntheses of literature; one or more providers and communicatively-vulnerable patients; synchronous in-person communication; intermediate or health outcome linked to communication. RESULTS: The search yielded 14,615 citations; 47 reviews - with wide range of providers, communication vulnerabilities, communication practices, and health outcomes - met inclusion criteria. Methodology included qualitative, quantitative, and mixed approaches. Quality ranged from very low to high. Six categories of communication practices linked to health outcomes were identified: 1) motivation-based; 2) accommodation of language, culture, gender, sexual identity, and other concordance with the patient; 3) cultural adaptations of interventions; 4) use of interpreters; 5) other provider-patient communication practices; 6) patient communication practices. CONCLUSION: Communication practices were studied in a wide range of providers, with common themes regarding best practices. A unique finding is the role of the patient's communication practices. The specificity of communication practices studied is heterogeneous, with many reviews providing insufficient details. PRACTICE IMPLICATIONS: Motivation-based practices and culturally- and linguistically-appropriate care have impacts on patient outcomes across a range of settings with different professions and communicatively-vulnerable groups.
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Comunicación , Lenguaje , Humanos , Personal de SaludRESUMEN
INTRODUCTION: The ultimate aim of speech-language therapy for adults with aphasia is to enhance their life participation. One key factor which may influence an individual's decisions to participate in meaningful life activities is their confidence in communication. The aim of the current study was to explore what helps confidence in communication from the perspective of adults with aphasia. METHODS: The study, part of a larger investigation, used a qualitative descriptive research approach underpinned by an interpretivist paradigm. Fifteen adult participants who had post-stroke aphasia and lived at home or in long-term care were recruited. Due to COVID-19 restrictions, participants had to be able to complete an online qualitative interview, given conversational support. Maximum variation sampling was used to ensure diversity within the sample. The researchers conducted individual interviews over Zoom based on a topic guide exploring the person's experiences with confidence in communicating and their perceptions about what has helped their confidence in communication since the onset of aphasia. The interviews were video-recorded and transcribed verbatim. The transcripts were analyzed using qualitative content analysis. RESULTS: Categories of what helps confidence in communication included: Attitudes, Advocating for themselves, Having individualized strategies to deal with communication difficulties, Practicing communication, Other people with aphasia (PWA), Factors related to communication partners, Factors related to the communication context, and Other factors. CONCLUSIONS: To enhance confidence, speech-language pathologists could help PWA to develop strategies to deal with inevitable communication breakdowns. They could also support PWA to experience communication success in everyday situations and to advocate for themselves.
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Afasia , COVID-19 , Trastornos de la Comunicación , Humanos , Adulto , ComunicaciónRESUMEN
BACKGROUND: Aphasia affects family members in addition to the individuals with the communication disorder. In order to develop appropriate services for the relatives of people with aphasia post-stroke, their rehabilitation goals need to be identified. AIM: The aim of the current investigation was to identify the rehabilitation goals that family members of individuals with aphasia have for themselves. METHODS & PROCEDURES: Forty-eight family members of adults with aphasia post-stroke participated in in-depth semi-structured interviews to identify the rehabilitation goals they had for themselves. All the interviews were transcribed verbatim and analysed using qualitative content analysis. OUTCOMES & RESULTS: Analysis revealed seven categories of goals that the family members had for themselves: to be included in rehabilitation, to be provided with hope and positivity, to be able to communicate and maintain their relationship with the person with aphasia, to be given information, to be given support, to look after their own well-being, and to be able to cope with new responsibilities. A few participants reported that, at certain times during the rehabilitation process, they did not have any goals for themselves. CONCLUSIONS & IMPLICATIONS: This study highlights that family members of individuals with aphasia have a number of aphasia-related rehabilitation goals for themselves. In order to provide a family-centred approach to rehabilitation, health professionals, including speech-language pathologists, need systematically to identify and address family members' goals in light of the categories revealed in this investigation.
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Afasia/rehabilitación , Cuidadores/psicología , Familia/psicología , Evaluación de Necesidades , Rehabilitación de Accidente Cerebrovascular , Adaptación Psicológica , Adulto , Anciano , Anciano de 80 o más Años , Australia , Femenino , Educación en Salud , Humanos , Masculino , Persona de Mediana Edad , Narración , Relaciones Profesional-Familia , Investigación Cualitativa , Apoyo SocialRESUMEN
BACKGROUND: Exploring the concept of living successfully with aphasia challenges researchers and clinicians to identify positive rather than negative adaptive processes and factors that may inform clinical interventions and other community-based services for people with aphasia. Previous research on this topic has focused on the perspectives of individuals with aphasia, and identified a number of core components of living successfully with aphasia, including doing things, meaningful relationships, striving for a positive way of living, and communication. As service providers, speech-language pathologists may also contribute valuable insights regarding components of living successfully with aphasia and factors influencing individuals' abilities to achieve this goal. AIMS: This research aimed to explore speech-language pathologists' perspectives about the meaning of living successfully with aphasia, and factors they perceive to influence individuals' abilities to live successfully with aphasia. METHODS & PROCEDURES: Twenty-five speech-language pathologists from around Australia participated in semi-structured in-depth interviews on the topic of living successfully with aphasia. All interviews were transcribed verbatim and analysed using interpretative phenomenological analysis to identify themes of relevance. OUTCOMES & RESULTS: Through the analysis of speech-language pathologist participant transcripts, the following themes emerged as components of living successfully with aphasia: participation and community engagement; communication; meaningful relationships; autonomy or independence; acceptance and embracement of aphasia; self-esteem; happiness; and purpose or meaningfulness. A wide variety of factors were perceived to influence individuals' abilities to live successfully with aphasia. These included support, acceptance, and understanding; personal factors; and speech-language pathology services. CONCLUSIONS & IMPLICATIONS: Further research is required to extend findings by investigating how speech-language pathologists address identified themes in clinical practice. To improve service provision, continued reflection by speech-language pathologists on how services provided align with client's values and priorities is a necessity. A commitment by speech-language pathologists to work in partnership with people with aphasia and their families and friends to achieve successful living with aphasia is one way to translate this research into practice.
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Adaptación Psicológica , Afasia/psicología , Afasia/rehabilitación , Actitud del Personal de Salud , Patología del Habla y Lenguaje , Adulto , Comunicación , Femenino , Amigos , Felicidad , Humanos , Vida Independiente , Masculino , Investigación Cualitativa , Calidad de Vida/psicología , Autoimagen , Conducta SocialRESUMEN
UNLABELLED: Language and lifestyle changes experienced following the onset of aphasia extend beyond the individual to impact family members of persons with aphasia. Research exploring the meaning of living successfully with aphasia has explored the perspectives of individuals with aphasia and speech-language pathologists. Family members' views of living successfully with aphasia may also contribute valuable insights into positive adaptive processes and factors that may influence clinical interventions and community-based services for individuals with aphasia and their families. PURPOSE: To explore, from the perspectives of family members of individuals with aphasia, the meaning of living successfully with aphasia. METHOD: Twenty-four family members (nominated by individuals with aphasia) participated in semistructured in-depth interviews about living successfully with aphasia. Interviews were transcribed verbatim and analyzed using interpretative phenomenological analysis to identify themes relating to the meaning of living successfully with aphasia. RESULTS: Seven themes were identified from analysis of family member participant transcripts: getting involved in life, support for the person with aphasia, communication, family members' own needs, putting life in perspective, focusing on and celebrating strengths and improvements, and experiences with services. CONCLUSION: Findings provide evidence to support previous research indicating that aphasia affects the whole family and not just an individual. The inclusion of family members as part of the rehabilitation team is indicated. Family members' needs and priorities must be considered in conceptualizing living successfully with aphasia to ensure family members are included in intervention programs.
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Actividades Cotidianas/psicología , Afasia/psicología , Familia/psicología , Adulto , Anciano , Anciano de 80 o más Años , Afasia/rehabilitación , Comunicación , Salud de la Familia , Femenino , Humanos , Entrevista Psicológica , Masculino , Persona de Mediana Edad , Patología del Habla y Lenguaje/métodosRESUMEN
BACKGROUND: When dispensing hearing aids, audiologists must follow validated fitting and verification procedures to ensure that the hearing aids are properly fitted to the client's hearing. Real ear measurements (REMs) are best practice for verifying hearing aids. Prior literature regarding REMs has mainly focused on the clinicians' perspective. PURPOSE: This study investigated informational counseling throughout REMs by gathering perspectives of first-time hearing aid users regarding the content and format of counseling. RESEARCH DESIGN: The study used an interpretive description approach with focus groups. STUDY SAMPLE: There were 16 adult participants (4 males, 12 females) who were first-time hearing aid users and who all had memory of REMs occurring during their own hearing aid verification. INTERVENTION: We investigated the addition of informational counseling during REM verification. DATA COLLECTION AND ANALYSIS: Four focus groups were conducted to elicit feedback on a demonstration of informational counseling during REM hearing aid verification. The data from the focus groups were transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Analysis revealed positive aspects, negative aspects, and suggested changes in relation to the verbal and visual information presented during the REM verification demonstration. These data fell into two broad categories: the interaction and transaction of informational counseling. CONCLUSION: Most clients were interested in learning more about REMs if the information was accessible. Results provide recommendations for clinical audiologists and REM system manufacturers to make the information presented during informational counseling more client-friendly and individualized for client-centered care. To continue exploring this new inquiry, further experimental research is required to determine if there is any added value of incorporating informational counseling during REMs.
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Audífonos , Pérdida Auditiva , Adulto , Consejo , Femenino , Audición , Pérdida Auditiva/diagnóstico , Pruebas Auditivas , Humanos , MasculinoRESUMEN
INTRODUCTION: Understanding the experiences of people who live with primary progressive aphasia (PPA) can inform the development of appropriate speech-language pathology services for this population. This review aimed to summarize the qualitative research on the experience of living with PPA from the perspective of the individuals with the disorder and their families. METHODS: A scoping review was conducted. RESULTS: Eight studies met the inclusion criteria. Themes in the 3 investigations that focused on the individual's perspective included adapting to overcome language difficulties and dealing with increased dependency. Themes identified in the 5 studies that highlighted the family's perspective included observing and adapting to language, behavioral, and social communication changes; lack of awareness of PPA; control; and the impact of the historical relationship. DISCUSSION: Experiences from the 2 perspectives differed. Further research is needed, particularly in relation to identifying the general experience of PPA from the perspective of individuals with the disorder.
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Afasia Progresiva Primaria/psicología , Comunicación , Familia/psicología , Humanos , Lenguaje , Investigación CualitativaRESUMEN
BACKGROUND: People with low vision or blindness may experience anxiety, fear, and depression-sometimes severe-as a result of the challenges encountered when they seek medical care. Such patients deserve, and health care professionals must provide, equal opportunities to participate in and benefit from their health care in a safe environment. A search of the literature yielded information on the needs of visually impaired people but failed to find a comprehensive program that health care facilities could use to meet the needs of this vulnerable population. This gap in the literature on visually impaired patients (VIPs) and implications for their care led us to conduct focused meetings with this population. OBJECTIVE: The specific aims of this quality improvement (QI) project were to determine the needs of hospitalized VIPs, develop educational and other resources that would help clinicians and ancillary hospital staff in their interactions with VIPs, and assemble a toolbox of useful materials for VIPs themselves. METHODS: A VIP care team identified the needs of VIPs as reported in the literature and in personal meetings with visually impaired people in the community. The team also surveyed interdisciplinary hospital staff members to determine their experience in caring for VIPs as well as their educational needs, and then developed strategies and educational modules to help clinicians and ancillary staff members accommodate the unique needs of VIPs in accordance with the Americans with Disabilities Act of 1990. The team also assembled a VIP toolbox that contained several items useful to VIPs themselves. Supplementary information tailored to the function of each hospital department (such as nursing, admissions, environmental services, dietary, and radiology) was also provided to help staff members improve VIPs' hospital experience. RESULTS: The hospital's interdisciplinary staff members participated in an education program to improve their care of VIPs. Before the program, only 23.6% of 161 staff members reported having received education on caring for VIPs. After the program, however, 56.4% of 140 staff members reported having received such education. Former patients requested bracelets and room identifiers that would alert staff members to VIPs' needs, and the team provided these. The team also introduced a braille version of the hospital menu and provided VIP toolboxes at each nursing station that contained many useful daily care items. CONCLUSIONS: VIPs have specific needs when hospitalized. Patients' and staff members' responses to this QI project were overwhelmingly positive; both groups were appreciative of the newly implemented initiatives to meet the special needs of the visually impaired.
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Ceguera , Atención a la Salud , Pacientes Internos/psicología , Grupo de Atención al Paciente , Personal de Hospital/educación , Mejoramiento de la Calidad , Depresión/psicología , Miedo/psicología , Hospitales , Humanos , Participación del Paciente , Encuestas y Cuestionarios , Baja VisiónRESUMEN
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: The language changes experienced by a person with aphasia following a stroke often have sudden and longlasting negative impact on friendships. Friendship relationships are core to social engagement, quality of life, and emotional well-being. The aims of this study were to describe everyday communication with friends for older people with and without aphasia and to examine the nature of actual friendship conversations involving a person with aphasia. METHOD: This naturalistic inquiry drew data from two phases of research: a participant observation study of 30 older Australians, 15 of whom had aphasia following a stroke, and a collective case study using stimulated recall to examine friendship conversations involving an older person with aphasia. RESULTS: People with aphasia communicated with fewer friends and had smaller social networks. "Friendship" was a core domain of communication for older people and participation in leisure and educational activities was focal in everyday communication with friends. Case study data of conversations between three older people with aphasia and their friends illuminated features of "time," the role of humour, and friends having shared interests. CONCLUSION: Aphasia has been found to impact on friendships. A need exists for research and intervention programs to address communication with friends for older people with aphasia.
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Afasia/psicología , Relaciones Interpersonales , Conducta Social , Apoyo Social , Factores de Edad , Anciano , Anciano de 80 o más Años , Afasia/rehabilitación , Estudios de Casos y Controles , Escolaridad , Humanos , Persona de Mediana Edad , Investigación Cualitativa , Factores SexualesRESUMEN
PURPOSE: Mobile phone use increases social participation. People with the communication disorder of aphasia are disadvantaged in the use of information and communication technology such as mobile phones and are reported to be more socially isolated than their peers. The World Health Organization's International Classification of Functioning, Disability and Health provides a framework to address the impact of environmental factors on individual participation. The aim of this preliminary study was to identify the barriers and facilitators to mobile phone use for people with aphasia. METHOD: A qualitative descriptive study involving two phases was conducted: (1) semi-structured interviews with 6 individuals with aphasia who owned or expressed a desire to own a mobile phone; (2) structured observations of key scenarios identified in the interviews of 3 participants who were sampled from the interview study. RESULTS: Results identified 18 barriers and 9 facilitators to mobile phone use. Key barriers and facilitators were identified in the areas of design and features, written support and training, and communicative partners. CONCLUSION: Mobile phone use can be problematic for people with aphasia. Intervention needs to address the barriers and utilise the facilitators to mobile phone use for this population. Further research is required to inform policy and intervention programs to ensure that people with aphasia have access to this technology.
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Afasia/psicología , Teléfono Celular/estadística & datos numéricos , Conocimientos, Actitudes y Práctica en Salud , Adulto , Anciano , Afasia/rehabilitación , Diseño de Equipo , Femenino , Humanos , Masculino , Persona de Mediana Edad , Motivación , Destreza Motora , Investigación CualitativaRESUMEN
PURPOSE: Aphasia is a communication disorder associated with impairments in spoken language, understanding, reading and writing that impacts upon daily activities, participation in society and the quality of life of those with the condition and their family members. Despite existing literature demonstrating the pervasive and significant effects of aphasia on family members, rehabilitation programming, policy and funding are not well developed. The aim of this qualitative study was to describe the impact of aphasia on family members in the context of changes to their functioning and disability using the framework of the International Classification of Functioning, Disability and Health (ICF). Application of ICF concept of disability or "third-party disability" to family members of people with a health condition is discussed. METHOD: Twenty family members participated in individual in-depth semi-structured interviews. Interviews were analyzed using qualitative content analysis. Research codes generated were subsequently mapped to the ICF. RESULTS: The results of this study showed that family members experienced positive, neutral and/or negative changes to their body functions and activities and participation due to their significant other's aphasia. Moreover, some family members attributed the development of a health condition or exacerbation of an existing health condition to the aphasia. CONCLUSION: Interpreted within the framework of the ICF, the results of this qualitative study reveal that family members of people with aphasia experience changes to their functioning and disability, known as "third-party functioning and disability", as a consequence of the health condition of a significant other.
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Afasia/rehabilitación , Cuidadores/psicología , Evaluación de la Discapacidad , Familia/psicología , Calidad de Vida , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Afasia/diagnóstico , Afasia/psicología , Estudios de Cohortes , Femenino , Humanos , Clasificación Internacional de Enfermedades , Masculino , Persona de Mediana Edad , Nueva Zelanda , Investigación Cualitativa , Índice de Severidad de la Enfermedad , Adulto JovenRESUMEN
Loss of friendship post-onset of aphasia is well documented, with reduced social network size and social isolation commonly reported. Because friendship has strong links to psychological well-being and health, increased knowledge about friendships of individuals with aphasia will have important clinical implications. This study aimed to explore the perspectives of 25 community dwelling individuals with chronic aphasia on the role of friendship in living successfully with aphasia. Thematic analysis of transcripts from semi-structured in-depth interviews revealed three over-arching themes relating to the role of friendship in participants' experience of life with aphasia: living with changes in friendships, good times together and support from friends, and the importance of stroke and aphasia friends. Overall, findings highlighted the valued role of friendship in living successfully with aphasia, while also providing evidence of how friendships change and evolve in both negative and positive ways following onset of aphasia. Clinicians are challenged to work creatively to address the role of friendship in life post-stroke in partnership with individuals with aphasia, their families, and friends.
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Afasia/psicología , Amigos/psicología , Calidad de Vida/psicología , Actividades Cotidianas/psicología , Adulto , Anciano , Anciano de 80 o más Años , Afasia/etiología , Comunicación , Femenino , Humanos , Entrevista Psicológica , Masculino , Persona de Mediana Edad , Apoyo Social , Accidente Cerebrovascular/complicacionesRESUMEN
PURPOSE: The WHO's International Classification of Functioning, Disability, and Health (ICF) describes third-party disability as the disability experienced by significant others as a consequence of their family members' health condition (WHO, 2001). A systematic review of the literature was conducted to summarize the current knowledge of third-party disability in aphasia. METHOD: PubMed, CINAHL and three other databases were searched for peer-reviewed studies reporting on how aphasia affects family members with no date restrictions. Findings from relevant studies that met the inclusion criteria were extracted and mapped to the ICF. RESULTS: This paper summarizes what is known about the experience of family members of people with aphasia, describing negative outcomes in the body functions and activities and participation components of the ICF. However, due to the limited consensus between studies, this review reveals an incomplete understanding of the nature of third-party disability. CONCLUSION: While current literature suggests there is a broad range of consequences for family members of people with aphasia, the sequelae of disability for family members of people with aphasia are not well understood. Further research is needed to better describe the nature and degree of third-party disability in aphasia.
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Afasia/rehabilitación , Cuidadores/psicología , Evaluación de la Discapacidad , Personas con Discapacidad/rehabilitación , Salud de la Familia , Actividades Cotidianas/psicología , Humanos , Clasificación Internacional de EnfermedadesRESUMEN
This commentary aims to extend the debate of the lead article authors (Wylie, McAllister, Davidson, and Marshall, 2013) by translating the nine recommendations of the World Report on Disability into a plan of action for the aphasia community. Solutions for the advancement of aphasia science and services are presented at international (macro), national (meso), and local (micro) levels. Implications for speech-language pathologists and aphasia service delivery are discussed. An overarching call to action is the need for speech-language pathologists to support a strong and vibrant aphasia community at all levels, so that the voices of people with aphasia can be heard.
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Trastornos de la Comunicación/terapia , Salud Global , Accesibilidad a los Servicios de Salud/tendencias , Poblaciones Vulnerables , HumanosRESUMEN
The concept of living successfully with aphasia has recently emerged as an alternative to more traditional "deficit" models in aphasiology, encouraging a focus on positive rather than negative outcomes. This research aimed to integrate findings from studies exploring the perspectives of three participant groups (individuals with aphasia, speech-language pathologists, and family members) about living successfully with aphasia. Qualitative meta-analysis of three studies conducted by the authors was used to integrate perspectives across the participant groups. Steps in the qualitative meta-analysis were based on those described in the process of "meta-ethnography" by Noblit and Hare (1988) . Analysis was an inductive process, in which data from each study were re-analysed and translated into each other in order to identify higher-level overarching themes that accounted for similarities and discrepancies across the original studies. A total of seven overarching themes related to living successfully with aphasia were identified. These were: participation, meaningful relationships, support, communication, positivity, independence and autonomy, and living successfully with aphasia as a journey over time. Findings indicate the need for a holistic, client-centred approach that considers communication in the broader context of an individual's daily life. The overarching themes may act as guides for areas of importance to be addressed in clinical practice, as well as in future research. By working in partnership with individuals with aphasia and their families, speech-language pathologists are challenged to continue to improve services and assist clients on their journey of living successfully with aphasia.
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Afasia/psicología , Familia/psicología , Calidad de Vida/psicología , Especialización , Patología del Habla y Lenguaje , Comunicación , Humanos , Participación del Paciente/psicología , Relaciones Profesional-Familia , Apoyo SocialRESUMEN
Goal-setting is considered an essential part of rehabilitation practice and integral to person-centredness. However, people with aphasia are not always satisfied with goal-setting, and speech-language pathologists are concerned about the appropriateness of therapy. Furthermore, family members are often excluded from goal-setting, despite the impact aphasia has on them. The actual goals set by clinicians for clients with aphasia and their family members have not yet been investigated. This study aimed to examine the goals that clinicians set for their clients with aphasia and their family members. Data from in-depth interviews with 34 speech-language pathologists describing 84 goal-setting experiences with people with aphasia were coded into superordinate goals for both groups. Clinicians expressed a wide range of goals for people with aphasia and their family members, relating to communication, coping and participation factors, and education. In addition, evaluation was considered a goal for the clients. There were clients for whom no goals were set, particularly for family members, due to a lack of/limited contact. The goals described broadly addressed all aspects of the International Classification of Functioning, Disability and Health (ICF) and reflected the use of both functional and impairment-based therapeutic approaches; they also emphasize the importance of providing goal-setting options for the family members of these clients.