Pub Date : 2023-01-01DOI: 10.1097/TLD.0000000000000306
T. Brancamp
The purpose of this original essay is to describe the process of developing a stakeholder-engaged research (SER) team with people who have aphasia. The SER process is described through the lens of posttraumatic growth and depreciation in aphasia. This article describes the process of modifying the Posttraumatic Growth and Depreciation Inventory (PTGI-42; Baker et al., 2008; Cann et al., 2010) with a multistakeholder research team so that individuals with aphasia may have a greater opportunity to be included in posttraumatic growth stroke outcome research. Posttraumatic growth is the positive psychological change that can be experienced as a result of the struggle with highly challenging life situations (Calhoun & Tedeschi, 2001) whereas posttraumatic depreciation is the inverse of growth, the negative aspects. To understand posttraumatic growth and depreciation in people living with aphasia, it is important that they be included in the research. To do so, we need to include people with aphasia in the research process and provide measurement tools that are aphasia friendly and accessible so that people with aphasia can participate in research and have their voices heard. This article describes the process, benefits, and challenges of stakeholder-engaged research.
{"title":"Posttraumatic Growth in People Living With Aphasia","authors":"T. Brancamp","doi":"10.1097/TLD.0000000000000306","DOIUrl":"https://doi.org/10.1097/TLD.0000000000000306","url":null,"abstract":"The purpose of this original essay is to describe the process of developing a stakeholder-engaged research (SER) team with people who have aphasia. The SER process is described through the lens of posttraumatic growth and depreciation in aphasia. This article describes the process of modifying the Posttraumatic Growth and Depreciation Inventory (PTGI-42; Baker et al., 2008; Cann et al., 2010) with a multistakeholder research team so that individuals with aphasia may have a greater opportunity to be included in posttraumatic growth stroke outcome research. Posttraumatic growth is the positive psychological change that can be experienced as a result of the struggle with highly challenging life situations (Calhoun & Tedeschi, 2001) whereas posttraumatic depreciation is the inverse of growth, the negative aspects. To understand posttraumatic growth and depreciation in people living with aphasia, it is important that they be included in the research. To do so, we need to include people with aphasia in the research process and provide measurement tools that are aphasia friendly and accessible so that people with aphasia can participate in research and have their voices heard. This article describes the process, benefits, and challenges of stakeholder-engaged research.","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":"43 1","pages":"5 - 18"},"PeriodicalIF":1.4,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46429240","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1097/TLD.0000000000000302
K. Strong, N. Douglas, Rebecca Lynn Johnson, Maura Silverman, Jamie H. Azios, Brent E Archer
There is a need for intervention to support friendship for people living with aphasia. The purpose of this article is to describe a stakeholder engagement process that involved researchers, clinicians, people living with aphasia, and care partners to inform such intervention. Through reflection and firsthand accounts of non–university-based researchers, people not typically represented in the research process, we share details of two main lessons learned throughout the stakeholder engagement journey: (1) accessible engagement and (2) team correspondence. Finally, we describe experiences with use of the Social Convoy Model to support discussion and engagement about friendship and aphasia. We argue that this tool be a consideration in future intervention research in this area to support people with aphasia communicating their friendship priorities and goals. Although the richness of multistakeholder research teams has been documented, we hope that this article provides detail that is not commonly shared thus illuminating the process. We also hope to provide a transparent account of the cost and time required to ensure equity across stakeholder groups.
{"title":"Stakeholder-Engaged Research","authors":"K. Strong, N. Douglas, Rebecca Lynn Johnson, Maura Silverman, Jamie H. Azios, Brent E Archer","doi":"10.1097/TLD.0000000000000302","DOIUrl":"https://doi.org/10.1097/TLD.0000000000000302","url":null,"abstract":"There is a need for intervention to support friendship for people living with aphasia. The purpose of this article is to describe a stakeholder engagement process that involved researchers, clinicians, people living with aphasia, and care partners to inform such intervention. Through reflection and firsthand accounts of non–university-based researchers, people not typically represented in the research process, we share details of two main lessons learned throughout the stakeholder engagement journey: (1) accessible engagement and (2) team correspondence. Finally, we describe experiences with use of the Social Convoy Model to support discussion and engagement about friendship and aphasia. We argue that this tool be a consideration in future intervention research in this area to support people with aphasia communicating their friendship priorities and goals. Although the richness of multistakeholder research teams has been documented, we hope that this article provides detail that is not commonly shared thus illuminating the process. We also hope to provide a transparent account of the cost and time required to ensure equity across stakeholder groups.","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":"43 1","pages":"43 - 56"},"PeriodicalIF":1.4,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44897653","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1097/TLD.0000000000000301
E. Madden, Michelle C. S. Therrien, Lauren Bislick, Sarah E. Wallace, Rachel Goff-Albritton, Ana Vilfort-Garces, Christopher Constantino, L. Graven
Friendship is an essential component of quality of life. The ongoing lifestyle changes and strain typically experienced by care partners of people with aphasia (PWA) can impact their social network, with friendships being particularly vulnerable to change. This study aimed to understand the impact of caregiving on care partners' friendships over time from the perspective of care partners of PWA. An online survey addressing care partners' demographics, care recipients' demographics, and care partners' perceptions of their friendships over time (before caregiving and during the acute and chronic stages of caregiving) was codesigned with three care partner stakeholders and then distributed to other individuals who care for a person with aphasia. Survey responses from 35 care partners of PWA who completed the survey were analyzed using quantitative and qualitative methods. Most participants reported their friendships were different in both the acute and chronic stages of caregiving compared with before caregiving. Overall, perceived friendship satisfaction and support decreased over time. Qualitative analysis revealed five main factors that could either facilitate or hinder care partner friendships, including role changes, personal characteristics, friendship initiation, friendship interactions, and outside influences. This work highlights that caring for a loved one with aphasia negatively impacts friendships for many care partners, and these friendship changes are often long-lasting. More resources for managing the impact of aphasia on care partners' social lives are needed, which, in turn, might improve the friendships and well-being of both the care partner and their loved one with aphasia.
{"title":"Caregiving and Friendship","authors":"E. Madden, Michelle C. S. Therrien, Lauren Bislick, Sarah E. Wallace, Rachel Goff-Albritton, Ana Vilfort-Garces, Christopher Constantino, L. Graven","doi":"10.1097/TLD.0000000000000301","DOIUrl":"https://doi.org/10.1097/TLD.0000000000000301","url":null,"abstract":"Friendship is an essential component of quality of life. The ongoing lifestyle changes and strain typically experienced by care partners of people with aphasia (PWA) can impact their social network, with friendships being particularly vulnerable to change. This study aimed to understand the impact of caregiving on care partners' friendships over time from the perspective of care partners of PWA. An online survey addressing care partners' demographics, care recipients' demographics, and care partners' perceptions of their friendships over time (before caregiving and during the acute and chronic stages of caregiving) was codesigned with three care partner stakeholders and then distributed to other individuals who care for a person with aphasia. Survey responses from 35 care partners of PWA who completed the survey were analyzed using quantitative and qualitative methods. Most participants reported their friendships were different in both the acute and chronic stages of caregiving compared with before caregiving. Overall, perceived friendship satisfaction and support decreased over time. Qualitative analysis revealed five main factors that could either facilitate or hinder care partner friendships, including role changes, personal characteristics, friendship initiation, friendship interactions, and outside influences. This work highlights that caring for a loved one with aphasia negatively impacts friendships for many care partners, and these friendship changes are often long-lasting. More resources for managing the impact of aphasia on care partners' social lives are needed, which, in turn, might improve the friendships and well-being of both the care partner and their loved one with aphasia.","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":"43 1","pages":"57 - 75"},"PeriodicalIF":1.4,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44258522","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1097/TLD.0000000000000303
C. Off, Victoria Scharp, Jenna R. Griffin-Musick
Purpose: This article characterizes graduate student clinicians' (GSCs') understanding of their roles as stakeholders in clinical implementation and research before participating in an intensive comprehensive aphasia program (ICAP). Method: Seven GSCs participated in a pre-ICAP intervention focus group to characterize their perceived roles in stakeholder-engaged research. Following an extensive ICAP training orientation and clarification of key definitions, the focus group prompt asked GSCs to describe what they view as important issues for developing future research protocols that investigate student clinician outcomes in the context of an ICAP. Qualitative content analysis using an inductive coding approach was applied to the focus group transcript. Results: The GSCs preparing to participate in ICAPs report that they are highly invested in the clinical implementation and research of the ICAP service delivery model. Discussion/Conclusions: The GSCs are crucial stakeholders in the development of GSC-run ICAPs across clinical implementation and all phases of research.
{"title":"Graduate Student Clinicians in Health Care Professions as Stakeholders in Intensive Comprehensive Aphasia Program (ICAP) Implementation and Research","authors":"C. Off, Victoria Scharp, Jenna R. Griffin-Musick","doi":"10.1097/TLD.0000000000000303","DOIUrl":"https://doi.org/10.1097/TLD.0000000000000303","url":null,"abstract":"Purpose: This article characterizes graduate student clinicians' (GSCs') understanding of their roles as stakeholders in clinical implementation and research before participating in an intensive comprehensive aphasia program (ICAP). Method: Seven GSCs participated in a pre-ICAP intervention focus group to characterize their perceived roles in stakeholder-engaged research. Following an extensive ICAP training orientation and clarification of key definitions, the focus group prompt asked GSCs to describe what they view as important issues for developing future research protocols that investigate student clinician outcomes in the context of an ICAP. Qualitative content analysis using an inductive coding approach was applied to the focus group transcript. Results: The GSCs preparing to participate in ICAPs report that they are highly invested in the clinical implementation and research of the ICAP service delivery model. Discussion/Conclusions: The GSCs are crucial stakeholders in the development of GSC-run ICAPs across clinical implementation and all phases of research.","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":"43 1","pages":"30 - 42"},"PeriodicalIF":1.4,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43691902","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1097/TLD.0000000000000304
Esther S. Kim, Kira Mauriks, Carlee Wilson, Leah Auch, Herman Koo, Daralynn Swensrude, Jessica Laccett, Andrea Ruelling
Purpose: Communication access is a human right, but many individuals with communication impairments face challenges accessing their environments. As part of a larger study investigating barriers and facilitators to communication access in the retail/service industry, the purpose of the present study was to investigate the experiences of people with aphasia (PWA) accessing goods and services in their communities. Methods: Nine PWA were interviewed about their experiences accessing retail businesses and services. Interviews were coded and thematically analyzed to identify key themes related to barriers and facilitators to communication during business interactions. Stakeholders on the research team included two PWA, who provided input throughout the research process. Results: Three main themes were found: supporting communication, aphasia awareness and education, and respect for PWA. Codes within each theme comprised facilitators that led to positive experiences and barriers that led to negative business interactions. Discussion/Conclusions: People with aphasia identified tangible ways that retail businesses can be made more communicatively accessible. Stakeholders with aphasia made meaningful contributions to the research process. Future work will investigate how these findings, integrated with business perspectives, can be used to support businesses in applying strategies to become more communicatively accessible.
{"title":"Barriers and Facilitators to Communication Accessibility as Perceived by People With Aphasia","authors":"Esther S. Kim, Kira Mauriks, Carlee Wilson, Leah Auch, Herman Koo, Daralynn Swensrude, Jessica Laccett, Andrea Ruelling","doi":"10.1097/TLD.0000000000000304","DOIUrl":"https://doi.org/10.1097/TLD.0000000000000304","url":null,"abstract":"Purpose: Communication access is a human right, but many individuals with communication impairments face challenges accessing their environments. As part of a larger study investigating barriers and facilitators to communication access in the retail/service industry, the purpose of the present study was to investigate the experiences of people with aphasia (PWA) accessing goods and services in their communities. Methods: Nine PWA were interviewed about their experiences accessing retail businesses and services. Interviews were coded and thematically analyzed to identify key themes related to barriers and facilitators to communication during business interactions. Stakeholders on the research team included two PWA, who provided input throughout the research process. Results: Three main themes were found: supporting communication, aphasia awareness and education, and respect for PWA. Codes within each theme comprised facilitators that led to positive experiences and barriers that led to negative business interactions. Discussion/Conclusions: People with aphasia identified tangible ways that retail businesses can be made more communicatively accessible. Stakeholders with aphasia made meaningful contributions to the research process. Future work will investigate how these findings, integrated with business perspectives, can be used to support businesses in applying strategies to become more communicatively accessible.","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":"43 1","pages":"76 - 90"},"PeriodicalIF":1.4,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43315984","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1097/tld.0000000000000307
{"title":"Stakeholder-Engaged Research: Examples From Aphasia","authors":"","doi":"10.1097/tld.0000000000000307","DOIUrl":"https://doi.org/10.1097/tld.0000000000000307","url":null,"abstract":"","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":" ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47780012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1097/tld.0000000000000309
{"title":"Continuing Education Instructions and Questions","authors":"","doi":"10.1097/tld.0000000000000309","DOIUrl":"https://doi.org/10.1097/tld.0000000000000309","url":null,"abstract":"","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":" ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48997928","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-01-01DOI: 10.1097/tld.0000000000000305
G. Szabo, Jessica A. Obermeyer, Angelique Cauthorn, Michael Hornbostel, Joe Flacco
{"title":"Combining Stakeholder-Engaged Research and the Life Participation Approach to Aphasia","authors":"G. Szabo, Jessica A. Obermeyer, Angelique Cauthorn, Michael Hornbostel, Joe Flacco","doi":"10.1097/tld.0000000000000305","DOIUrl":"https://doi.org/10.1097/tld.0000000000000305","url":null,"abstract":"","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":"1 1","pages":""},"PeriodicalIF":1.4,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41666646","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-01DOI: 10.1097/tld.0000000000000293
S. Neuman, Tanya Kaefer, A. Pinkham
{"title":"Incidental Word Learning Through Multiple Media","authors":"S. Neuman, Tanya Kaefer, A. Pinkham","doi":"10.1097/tld.0000000000000293","DOIUrl":"https://doi.org/10.1097/tld.0000000000000293","url":null,"abstract":"","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":" ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42956994","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-10-01DOI: 10.1097/TLD.0000000000000297
Beth M Phillips, Felesa Oliver, Karli B Willis
Children from backgrounds of poverty often lag behind more advantaged peers in early language skills, including breadth and depth of vocabulary knowledge. We report the results of a pilot study of an explicit and elaborated vocabulary intervention in preschool classrooms serving children from lower-income backgrounds. The intervention used multimodal instruction, including segments from public television children's programs and interactive games, to build children's knowledge of and semantic connections for 128 words across 18 weeks of daily lessons. Within 39 classrooms representing childcare, Head Start, and public prekindergarten settings, 192 preschool-age children (M = 52.10 months) participated in structured lessons and extension activities delivered by teachers and aides. Within-child comparisons of growth for taught target words versus matched untaught words revealed that children grew on all words but demonstrated significantly greater growth for taught words. Results support the value of elaborated and explicit vocabulary instruction and the role of visual media as contexts for preschooler's word learning.
{"title":"Engaging, Explicit, and Elaborated: An Initial Trial of Media-Enhanced Preschool Vocabulary Instruction.","authors":"Beth M Phillips, Felesa Oliver, Karli B Willis","doi":"10.1097/TLD.0000000000000297","DOIUrl":"10.1097/TLD.0000000000000297","url":null,"abstract":"Children from backgrounds of poverty often lag behind more advantaged peers in early language skills, including breadth and depth of vocabulary knowledge. We report the results of a pilot study of an explicit and elaborated vocabulary intervention in preschool classrooms serving children from lower-income backgrounds. The intervention used multimodal instruction, including segments from public television children's programs and interactive games, to build children's knowledge of and semantic connections for 128 words across 18 weeks of daily lessons. Within 39 classrooms representing childcare, Head Start, and public prekindergarten settings, 192 preschool-age children (M = 52.10 months) participated in structured lessons and extension activities delivered by teachers and aides. Within-child comparisons of growth for taught target words versus matched untaught words revealed that children grew on all words but demonstrated significantly greater growth for taught words. Results support the value of elaborated and explicit vocabulary instruction and the role of visual media as contexts for preschooler's word learning.","PeriodicalId":51604,"journal":{"name":"Topics in Language Disorders","volume":"42 4","pages":"304-318"},"PeriodicalIF":1.4,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9974156/pdf/nihms-1827001.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10815611","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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