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Living Successfully with Aphasia: Family Members Share Their Views
Abstract
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.
... Either they were unable to find services that provided support, or the available services were difficult to access. Brown, Worrall, Davidson and Howe [12] interviewed 24 family members of PWA about their perspective of living successfully with aphasia. They reported that aphasia can affect the whole family and therefore family members' needs and priorities ought to be considered. ...
... For our participants the GC provided a sense of purpose for the PWA, allowing the participants to feel less responsible in this area. Spouses of PWA desire time to themselves [11,12], it appears that family members with a need for respite were able to achieve this by having the PWA attend GC without them. ...
... It also suggests that improvement in confidence extends beyond GC performance and impacts their communication in daily life. Furthermore, it suggests that GCs may assist family in improving their communication and relationship with the PWA [11,12]. An improvement in mood was described by some participants, and they felt this too had a positive impact on the PWA's communication. ...
Purpose: Aphasia impacts not just the individual with aphasia, but also their family members and friends. Known as third-party disability, it is largely hidden but can be as pervasive as aphasia itself. Gavel Clubs are a Toastmasters International-affiliated group where members participate in public-speaking tasks. Participation has been associated with improvements in quality-of-life and communication confidence but the extent to which it can impact family members of people with aphasia is not yet known. This study explored family member perspectives of participation in a Gavel Club for people with aphasia, to reveal any benefits or challenges perceived by family members and/or close friends.Methods: Semi-structured interviews were undertaken with 13 family members or close friends of people with aphasia who regularly participated in a weekly Gavel Club. The interviews were analysed using thematic analysis.Results: Three themes were identified: (1) Something to do, (2) Sense of community and (3) I can see great improvements, along with two subthemes (i) This is not just us and (ii) Support of knowing other people go through it. The themes reflected a largely positive experience of Gavel Club participation as perceived by family members. The theme names were derived from quotes from the participants.Conclusions: Regular participation in a Gavel Club for people with aphasia has a positive impact beyond just the person with aphasia, extending to their family members and close friends. This impact can be direct, if the family members themselves participate, or indirect, through the perceived benefits for the person with aphasia.
... To date, much of the research exploring the information needs of family members has focussed on identifying desired aphasia topic areas. For example, research has reported that family members want information about: 1) what aphasia is (Avent et al., 2005;Le Dorze & Signori, 2010;Manders, Mari€ en, & Janssen, 2011;Michallet et al., 2001), 2) the impact of aphasia on communication (Manders et al., 2011;Michallet et al., 2001) and 3) strategies to support effective communication (Brown, Worrall, Davidson, & Howe, 2011b;Le Dorze & Signori, 2010;Manders et al., 2011;Michallet et al., 2001). Family members have also expressed a desire for information related to the long-term impacts of aphasia, such as expected communication changes, prognosis (Avent et al., 2005;Manders et al., 2011), support networks and community resources (Le Dorze & Signori, 2010;Manders et al., 2011). ...
... Despite an expanding body of evidence to guide the selection of specific aphasia information topics (Avent et al., 2005;Brown et al., 2011b;Hilton, Leenhouts, Webster, & Morris, 2014;Le Dorze & Signori, 2010;Manders et al., 2011), there has been limited research exploring whether the needs of family members in these areas have been met. Manders et al. (2011) explored the perspectives of 77 family members of PWA and 132 speech-language pathologist (SLP) working with people with aphasia, in Belgium. ...
... To allow for a comparison of findings, questions were based on a previous survey that explored SLPs' perspectives of current and optimal aphasia education practices in Australia (Rose et al., 2018). With the exception of aphasia research, all topic areas included in the survey were based on existing literature related to family member aphasia information needs (Avent et al., 2005;Brown et al., 2011b;Le Dorze & Signori, 2010;Manders et al., 2011;Michallet et al., 2001). ...
Purpose: This study aimed to explore family members’ experiences and preferences for receiving aphasia information during the early phases of post-stroke care.
Method: Sixty-five family members completed an online survey structured according to five phases for caregiver support. The majority of participants were female (73.8%, n = 48) and spouses/partners (81.5%, n = 53) to a family member with aphasia. The quantitative data were analysed using descriptive statistics. The qualitative data were analysed using inductive content analysis.
Result: Experiences: The majority of family members (≥50%) did not recall receiving aphasia information in four of the five phases and were not completely satisfied with information received in any phase. Preferences: Only three family members (4.6%) reported not wanting aphasia information and this pertained to the first days of care. Family members considered it useful to receive aphasia information in a written modality and via conversations with health professionals across all five phases. Family members identified difficulties obtaining aphasia information, including health professionals providing limited or inadequate information, not being aware of the term aphasia, and difficulties accessing services across care phases.
Conclusion: Findings provide insight into how health professionals can better support the information needs of family members living with aphasia.
... People with chronic post-stroke aphasia and their family members report that meaningful relationships including support, engagement in meaningful activities, successful communication, and striving for a positive way of life, are essential factors for "living successfully" with the condition [1]. Access to speech pathology services including community therapy groups has been raised as a need by both people with aphasia and family members [1,2]. In addition, specific requirements indicated by family members include addressing their own needs, putting life into perspective, and focusing on and celebrating the person with aphasia's strengths and improvements [2]. ...
... Access to speech pathology services including community therapy groups has been raised as a need by both people with aphasia and family members [1,2]. In addition, specific requirements indicated by family members include addressing their own needs, putting life into perspective, and focusing on and celebrating the person with aphasia's strengths and improvements [2]. Community aphasia groups are defined as involving: (1) two or more people with aphasia who are living in the community meeting regularly, with or without formal group facilitators and/or significant others; and (2) at least two of the following aims: communication therapy, conversation activity, social and/or psychological support, stroke/aphasia education, and participation in accessible activities [3]. ...
... The 80 community aphasia groups documented to be available in Australia [7] are wholly insufficient to service the 100,000 people with aphasia living in the community [8]. Furthermore, despite the substantial "third-party impacts of aphasia on family members [9,10], their inclusion in aphasia rehabilitation, and more specifically community aphasia group service provision is limited [2,6,11]. ...
Background: Community aphasia groups are recognized as an area of need and value for people with chronic aphasia and their significant others. However, our understanding of attendees’ experiences is limited by the small amount of qualitative research available. The present study aimed to describe participant experiences of an Interdisciplinary Community Aphasia Group, as part of a better understanding of its underlying processes and value.
Methods: Four people with chronic, severe aphasia and their spouses attended an Interdisciplinary Community Aphasia Group held at a university speech clinic for 2 h once weekly over 12 weeks. The group was co-facilitated by a speech-language pathologist and a social worker, with the support of two aides (one a person with aphasia, and the other a member of the general community). The group addressed the following areas: communication therapy, conversation, participation in meaningful and accessible activities, psychological and social support, and aphasia information and education. Following the program, the people with aphasia (via multimodal communication) and spouses participated in separate semi-structured interviews with an independent interviewer. The interviews addressed members’ perceptions of the program (both in relation to themselves and their spouse) along with recommendations for improvement. The interviews were analyzed using Framework Analysis.
Results: Members shared preferences for program activities and group format, with some experiences leading to suggestions for improvement. The group dynamics and environment were considered positive overall, and members highlighted a range of positive impacts for both themselves and their spouse. Together, these elements informed members’ evaluation that the model contained something for everyone, but may not be a “one-stop shop” given ongoing needs for therapy. An overarching theme for spouses addresses therapy and recovery in relation to the impact of peers, views and beliefs, and adjustment.
Conclusions: The Interdisciplinary Community Aphasia Group model has overall acceptability for people with chronic, severe aphasia and their spouses, and can be adapted to ensure feasibility in clinical practice. Ongoing research is required to best tailor community groups for people with aphasia and significant others, and to reinforce the need for their proliferation.
• Implications for rehabilitation
• People with aphasia and their spouses can benefit from a wide range of programming, including participation in meaningful and accessible non-verbal activitiesAn interdisciplinary staff team can contribute positively to member experience and impacts, with peer staff offering valuable mentoring roles. Various aspects of member identity and life narrative impact on community aphasia group participation; understanding members’ needs in the context of previous experiences can improve tailoring of program content.
... La communication, la santé, les interactions familiales, sociales, la vie professionnelle et patrimoniale sont transformées (Northcott et al., 2016) et le risque de dépression particulièrement important (62 % à 70 %) chez les survivants d'AVC avec aphasie (Worall et al., 2016). Plusieurs programmes anglo-saxons de plusieurs semaines/mois visent à faciliter la communication au sein de la dyade aphasique/aidant (Brown et al., 2011). L'approche canadienne "Supported conversation for adults with aphasia" (SCA) (Kagan et al., 2001) fondée sur l'hypothèse que les compétences propres de la personne aphasique peuvent être révélées grâce à celles d'un partenaire de conversation (Brown et al., 2011). ...
... Plusieurs programmes anglo-saxons de plusieurs semaines/mois visent à faciliter la communication au sein de la dyade aphasique/aidant (Brown et al., 2011). L'approche canadienne "Supported conversation for adults with aphasia" (SCA) (Kagan et al., 2001) fondée sur l'hypothèse que les compétences propres de la personne aphasique peuvent être révélées grâce à celles d'un partenaire de conversation (Brown et al., 2011). Le programme "Aphasia couples therapy (ACT)" déployé aux États-Unis (Boles, 2010) relève d'une démarche pragmatique et repose sur l'analyse des interactions du couple par un thérapeute qui accompagne la généralisation de l'apprentissage en vie quotidienne après qu'un objectif ait été fixé (Brown et al., 2011). ...
... L'approche canadienne "Supported conversation for adults with aphasia" (SCA) (Kagan et al., 2001) fondée sur l'hypothèse que les compétences propres de la personne aphasique peuvent être révélées grâce à celles d'un partenaire de conversation (Brown et al., 2011). Le programme "Aphasia couples therapy (ACT)" déployé aux États-Unis (Boles, 2010) relève d'une démarche pragmatique et repose sur l'analyse des interactions du couple par un thérapeute qui accompagne la généralisation de l'apprentissage en vie quotidienne après qu'un objectif ait été fixé (Brown et al., 2011). ...
... Where stroke survivors engaged in activities they valued, a sense of achievement, purpose, pleasure and confidence was expressed 48 .Establishing a routine was important to stroke survivors with aphasia. Again this gave stroke survivors a sense of purpose and achievement which was not evident in the experiences of those participants where activity had decreased post-stroke 53 59 ...
... The common theme was that the activity helped the stroke survivor to have a role which they valued, which they enjoyed or which gave them a sense of purpose 48 51 52 54 55 61 62 75 . Sometimes stroke survivors struggled to participate in meaningful activities they had enjoyed prior to stroke due to their communication difficulties 53 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 51 suggest that participating in meaningful activity is a process and describe participants' experiences of finding a balance between the things they could still do and those they were no longer capable of. This trial and error process may be important to creating a meaningful role and therefore to living successfully with post-stroke communication difficulties. ...
... Valued roles were often related to activities outside of the house, which stroke survivors found challenging to manage due to their communication difficulties. For example, a participant in Cruice et al. 53 describes his reliance on his wife for going out of the house: ...
... Table 1 summarizes characteristics of the 66 articles. Fifty-two were qualitative, 4,7,9,[23][24][25][27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46]48,49,52,53,[57][58][59][60][61][62][68][69][70][71][72][74][75][76][77][78][79][81][82][83][84][85] ten used a survey, 26,47,50,51,54,56,64,66,73,80 and four used a mixedmethods approach. 55,63,65,67 Most of the studies (n = 45, 68%) were conducted in the community. ...
... Almost all studies reported the data collection process. Thirty studies provided the rationale for their research design, 9,11,23,25,[27][28][29]31,[33][34][35][36]38,42,44,45,48,49,52,53,[57][58][59]61,62,68,72,78,82,83 9 studies discussed the relationship between researcher and participants, 23,31,34,45,48,52,59,68,83 37 studies reported rigorous data analyses procedures, 4,7,9,11,23,24,[28][29][30]32,33,[35][36][37][38][39][40]42,[44][45][46]48,49,52,[57][58][59]61,62,68,72,74,76,79,82,84,85 45 studies reported the ethical considerations, 4,7,9,[23][24][25]27,[29][30][31][33][34][35]37,[39][40][41][42][43][44][45][46]48,49,52,53,[57][58][59]61,62,[68][69][70][71][72][74][75][76]78,79,[81][82][83]85 and 49 studies reported therecruitmentstrategy. 7,9,11,[23][24][25]27,[29][30][31][32][33][34][35][37][38][39][40][41][42][43][44][45][46]48,49,52,53,[57][58][59][60][61][62][68][69][70][71][72][74][75][76][77][78][79][82][83][84][85] Of the 10 quantitative studies appraised using Critical Appraisal of a Survey by the Center for Evidence-Based Management, all clearly addressed the research question, methods, and selection of participants and had a sample representing the population. None of the studies assessed the sample size a priori or reported confidence intervals. ...
... Almost all studies reported the data collection process. Thirty studies provided the rationale for their research design, 9,11,23,25,[27][28][29]31,[33][34][35][36]38,42,44,45,48,49,52,53,[57][58][59]61,62,68,72,78,82,83 9 studies discussed the relationship between researcher and participants, 23,31,34,45,48,52,59,68,83 37 studies reported rigorous data analyses procedures, 4,7,9,11,23,24,[28][29][30]32,33,[35][36][37][38][39][40]42,[44][45][46]48,49,52,[57][58][59]61,62,68,72,74,76,79,82,84,85 45 studies reported the ethical considerations, 4,7,9,[23][24][25]27,[29][30][31][33][34][35]37,[39][40][41][42][43][44][45][46]48,49,52,53,[57][58][59]61,62,[68][69][70][71][72][74][75][76]78,79,[81][82][83]85 and 49 studies reported therecruitmentstrategy. 7,9,11,[23][24][25]27,[29][30][31][32][33][34][35][37][38][39][40][41][42][43][44][45][46]48,49,52,53,[57][58][59][60][61][62][68][69][70][71][72][74][75][76][77][78][79][82][83][84][85] Of the 10 quantitative studies appraised using Critical Appraisal of a Survey by the Center for Evidence-Based Management, all clearly addressed the research question, methods, and selection of participants and had a sample representing the population. None of the studies assessed the sample size a priori or reported confidence intervals. ...
Objective:
Caregivers usually are not involved while planning the stroke survivor's medical and rehabilitation goals and interventions. This review aimed to identify the needs of stroke survivors as perceived by their caregivers.
Design:
A literature search from 2003 to 2014 was conducted using Medline, CINAHL, PsychINFO, and Google Scholar. Sixty-six studies were included. Most studies excluded did not encompass caregivers' perspectives. Four reviewers screened the titles, abstracts, and full texts of the articles for inclusion. The data extracted from these studies were synthetized into metathemes.
Results:
Fifty-two qualitative, ten quantitative survey, and four mixed-methods studies were included in the final synthesis. The studies came from 11 countries. The data synthesis produced following three metathemes: (a) body functional needs, including psychological function, physical function, cognitive function, and uncertainty related to function; (b) activity and participatory needs, including healthy lifestyle, physical activities, speech, independence, cognitive activities, and uncertainty related to activities and participation; and (c) environmental needs, encompassing support, services, safety, accommodation and accessibility, and uncertainty related to environmental factors.
Conclusions:
This scoping review identified a range of needs of stroke survivors as perceived by their caregivers. Incorporating the caregiver's preferences and values into clinical decisions may improve outcomes among stroke survivors.
... INTRODUCTION members in a qualitative study by Bernstein and Ellis were asked to identify the perceived benefits of an SLP-facilitated group for their relative with aphasia [10], these participants were not asked to identify any benefits that they may have derived themselves from their relative's participation in the group. One qualitative investigation that has reported findings in this area involved families' perceptions of living successfully with aphasia [11]. Semi-structured in-depth interviews with 24 family members of adults with aphasia revealed seven themes relating to the meaning of living successfully with aphasia: 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. ...
... Some of these benefits mirror aphasia rehabilitation goals and needs in relation to support, information, and respite that family members have identified as being important for themselves in previous investigations [5,25]. This reinforces the study by Brown and colleagues [11] that found that recognizing the family members' own needs was important in relation to living successfully with aphasia. For example, long-term access to support has been identified as being important for family members of people with aphasia [5,[25][26][27]. ...
... Having a time away from one another may be beneficial for the well-being of both the individual with aphasia and their family [25]. It can be difficult, however, for some family members to balance supporting their relative with aphasia to achieve independence and autonomy with their concerns about their relative's safety [11]. One FM reported that the stroke group that her relative with aphasia attended was beneficial because it helped her to allay her safety concerns of leaving him on his own at home while she went out. ...
Purpose:
Aphasia impacts family members. Therefore family members may also derive indirect benefits when their relative with aphasia chooses to participate in a group. The current study explored the benefits for family members of their relative with aphasia participating in a variety of types groups post-stroke as perceived by family members and their relatives with aphasia.
Method:
The study used a qualitative descriptive research approach. Semi-structured interviews were conducted with sixteen participants: six family members and ten adults with aphasia post-stroke. Qualitative content analysis was used to analyze the interview transcripts. Member checking, peer debriefing, and triangulation of data sources was used to enhance the rigour of the study.
Results:
The participants identified 10 benefits that family members may experience as a result of their relative with aphasia participating in various types of groups post-stroke: improves communication between the family member and the individual with aphasia at home, provides support for family members, provides an opportunity for social contact for family members, enables access to aphasia-related information, reduces individual with aphasia’s reliance on the family member for socialization, provides an opportunity for the family member to have time on their own, enables the family member to experience positive feelings, allows family members to focus on their role in the family, provides a meaningful role for the family member, and increases participation for the family member.
Conclusions:
These indirect benefits may help to address some of the psychosocial, information, communication, and participation needs of family members of individuals with aphasia.
... Factors that were found as contributing to an improved quality of life for family members of PWA included the presence of a robust support system for the PWA, the quality of communication between the PWA and their family members, and attentiveness to the needs of the family members themselves (Brown et al., 2011). These factors play a crucial role in enhancing the well-being of those supporting PWA. ...
... No relation was found between receiving partner training and the more positive score of this category. While this result aligns with the findings of Johannsen-Horbach et al. (1999), it contrasts with numerous other studies indicating a positive effect of partner training on communication and self-esteem in couples (Brown et al., 2011;Croteau et al., 2020;Le Dorze & Signori, 2010;Rose et al., 2019;Simmons-Mackie et al., 2010. Possible explanations for our finding include sample size limitations, the time elapsed since the partner training, and variation in the types and scope of the training provided. ...
... Further, little attention has been given to the conceptual meaning behind involvement. 20 Terms such as "involvement," "collaboration," shared decision-making," and "partnership" are used interchangeably and, unfortunately, agreement on the meanings of and differences between these concepts has not been achieved. 20 In this review, we use the term "involvement" because it refers to "active doing" at the individual level. ...
... 20 Terms such as "involvement," "collaboration," shared decision-making," and "partnership" are used interchangeably and, unfortunately, agreement on the meanings of and differences between these concepts has not been achieved. 20 In this review, we use the term "involvement" because it refers to "active doing" at the individual level. 21 Further, involvement refers to different aspects of the care continuum, including participation in decision-making concerning treatments, sharing information and knowledge, goal setting, discharge planning, and active involvement in nursing care and exercises etc. 22 Relatives of patients with an ABI have their own concerns, including the burden of caring for the patient, that require attention. ...
Objective:
This scoping review identifies and maps the breadth of available evidence on relatives' wants and needs for involvement in the care of patients with an acquired brain injury.
Introduction:
Acquired brain injuries often occur suddenly and unexpectedly. Suffering from an acquired brain injury has major consequences, not only for the patients, due to the devastating impact on their physical, cognitive, social, and psychological well-being, but also for the relatives who may need to take on a lifelong role as carers. Research has cited some benefits of involving relatives in the care of patients, including positive effects on the patients' health outcomes; however, there are few studies showing how relatives can be involved.
Inclusion criteria:
Studies that defined or assessed relatives' wants and needs for involvement with the care of patients with an acquired brain injury in all settings were included. Studies were included if they described any kind of wants and needs for involvement experienced from the perspective of relatives. The review considered all study designs, except for literature reviews.
Methods:
The JBI methodology for conducting a scoping review was employed in accordance with an a priori published protocol. An extensive search was conducted in MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in September 2021. This review was limited to studies published in English, German, or Scandinavian languages since January 2010. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. The review findings are reported as a descriptive summary, with tables and figures supporting the data.
Results:
The search identified 3854 studies, 31 of which were included. The studies were published between 2010 and 2021 and were conducted across 9 countries. In total, 16 studies applied a qualitative study design, 4 studies used a descriptive approach, 4 studies used a quantitative research design, 4 studies reported using a mixed methods design, and 3 studies employed a multi-methods design. The studies were conducted across a variety of settings, ranging from acute care to home. The international literature on the involvement of relatives with patients with acquired brain injuries comprises multiple published studies on different aspects of the topic and within various care contexts. The findings identified few studies describing wants and needs experienced by relatives in relation to involvement in the patient's disease trajectory.
Conclusions:
The findings show that relatives' wants and needs are primarily related to information and communication, but are also related to collaboration with health care professionals. The findings illustrate that the complexity of involvement is comprehensive, with multiple aspects to consider.
... Adapting to the changes in PWA Overall, conversations in the family lacked depth and meaning due to the limited speech ability of persons with aphasia. Several spousal caregivers of PWA articulated that the conversations were difficult and mostly filled with silence after a stroke (Brown et al., 2011;Hallé & Le Dorze, 2014). Role changes in conversations were apparent after a stroke in the family. ...
... PWAs and their family caregivers remained hopeful toward successfully overcoming aphasia (Baker et al., 2020;Brown et al., 2011). Time to re-adjust PWAs took time to acknowledge speech-related changes and readjust with their lives after a stroke. ...
Background:
Previous studies have predominantly focused on the needs of persons with aphasia (PWA), after a stroke diagnosis. However, aphasia is found to cause communication challenges in persons with stroke and their family caregivers as a unit. Evidence is inconclusive about the communication patterns of both persons with aphasia and their family caregivers after a stroke. Studies have not been synthesized on facilitators and barriers of communication patterns between PWA and family caregivers after a stroke.
Aims:
A meta-synthesis of qualitative evidence was conducted to explore family communication patterns after post-stroke vascular aphasia.
Methods:
An electronic literature search of PubMed, CINAHL, Cochrane Library, PsyINFO, and Scopus was performed from January to March 2021. The methods of qualitative meta-synthesis were underpinned by Sandelowski and Barosso's guidelines. Data analysis was facilitated by Braun and Clarke thematic analysis, using NVivo 11 software.
Results:
A total of twenty studies were included for meta-synthesis. Three themes with corresponding subthemes were identified: (1) changes in family communication patterns (subthemes: adapting to the changes in PWA after a stroke, striving toward communication recovery); (2) facilitators of family communication patterns (subthemes: supportive communication techniques, hope of recovery, time to re-adjust, and community engagement [recreational activities]); and (3) barriers of communication (subthemes: emotional turmoil and daunting tasks of rehabilitation).
Linking evidence to action:
Although persons with aphasia and family caregivers are striving to achieve normalcy in communication, they are often challenged by communication deficits and protective family behaviors. Therefore, to establish effective communication, it is of paramount importance for nursing professionals to educate PWAs and their caregivers on facilitators and barriers of family communication patterns. Technology-based family communication facilitation and support groups for PWA and their family caregivers are recommended to promote family communication. The review was registered with PROSPERO (CRD42021235519).
... Aphasia is a life-altering occurrence for PwA and CPs. Family members are often closely involved in aphasia management [59], with CPs identified as a key support source [60][61][62]. Along with general daily care requirements, CPs take on responsibility for assisting with speech therapy and helping PwA communicate [63]. ...
... Communicative participation was another element related to embedding self-management into everyday life. CPs and PwA have previously identified involvement in meaningful activities as paramount to living successfully with aphasia [60,97] and improving quality of life [93]. In fact, engaging in "activities" had the most powerful influence on the quality of life [98]. ...
Purpose
“Self-management” empowers individuals to take responsibility for their healthcare through skill-building, personal growth, and self-efficacy related to chronic health condition management. Self-management approaches may benefit people with aphasia (PwA); however, PwA are often excluded from stroke self-management research and there is no published research reporting on aphasia-specific self-management programs. Communication partners (CPs) are involved in the rehabilitation and day-to-day lives of PwA, thus giving them unique insights and knowledge of PwA needs. The present study aimed to investigate CP experiences and perspectives regarding aphasia self-management and to explore CP perceptions of the use of technology in aphasia self-management.
Methods
In-depth, semi-structured interviews with 14 CPs living in Australia. Interview data was analysed using qualitative content analysis.
Results
Analysis revealed six core themes: (1) aphasia self-management is embedded into everyday life, (2) CPs provide comprehensive self-management support, (3) speech-language pathologists (SLPs) provide tools and support to enable PwA to self-manage, (4) aphasia self-management can be enhanced by technological supports, (5) potential positive outcomes of aphasia self-management, and (6) factors influencing successful aphasia self-management.
Conclusions
Aphasia self-management programs should focus on individual needs, functional communication in daily life, and social interaction. PwA and CPs are central to these programs, assisted by SLPs. Technology should be explored to augment aphasia self-management.
•
Implications for Rehabilitation
• Communication partners suggest that people with aphasia are already engaging in aspects of self-management and that more formal aphasia-specific self-management approaches may be beneficial.
• Dedicated aphasia self-management programs should be situated in daily life with a focus on functional communication, life participation, confidence, and independence.
• Communication partners, speech-language pathologists, and technology are key support sources for aphasia self-management.
• Further input should be sought from communication partners in the development of aphasia self-management programs.
... Social isolation, depression, loneliness, reduced autonomy are likely secondary impacts of aphasia (Bakas et al., 2006). Relatives of people with aphasia also report their own emotional consequences of aphasia such as irritation, stress and anxiety (Brown et al., 2011;Grawburg et al., 2014) and even third-party disabilities, including physical, emotional and mental health problems, limiting their own functioning (Cruice et al., 2006). Even though communication difficulties can limit conversations in daily life, people with aphasia and their relatives may also be faced with a range of difficulties in healthcare settings. ...
... As research studies have shown, aphasia affects relationships (Grawburg et al., 2014;Hilton et al., 2014). Relatives often experience inadequate service provision, including the lack of information provision, a discouraging manner in which information is provided, or a lack of support for the relatives to cope with communication difficulties and changed lives (Brown et al., 2011). ...
Background
There is an increasing amount of research that investigates the needs and wishes of people with aphasia and their relatives with regards to improving the accessibility of communication with healthcare professionals (HCP). An important way to improve this is by training HCP to use supportive conversation techniques and tools.
Objectives
This study aimed to inform the development of such a training, by adding to previous findings in the literature regarding the experiences, needs and wishes of people with aphasia and their relatives. We were interested in their experiences with the accessibility of communication and support from HCP and how they believed this can be improved.
Methods
An exploratory qualitative research design was chosen. Data was collected through qualitative semi-structured interviews with 20 people with aphasia and 12 relatives. The time post stroke ranged from 3 months to 41 years.
Results
Four themes described the data. According to people with aphasia and relatives (1) information transfer in healthcare settings and (2) the use of supported conversation techniques by HCP are inadequate, (3) there is a lack of shared decision-making in healthcare settings, and (4) support, guidance, counseling and education is mainly targeted at the person with aphasia.
Conclusions
People with aphasia and relatives reported a variety of positive and negative experiences in all themes. Even though guidelines and interventions have been developed to improve healthcare for people with aphasia and their relatives, we found that people still encounter substantial challenges in access to- and provision of information, shared decision-making, support and communication with HCP. The findings in this study provide some important recommendations for improvement, including the improvement of transfer of information, shared decision-making and individual support for the relatives.
... Participation in life situations naturally encouraged communication and required PwA to assume responsibilities. Partaking in meaningful activities, sustaining and expanding social circles, developing and nurturing relationships, engaging in activities related to personal interests, contributing back to society, and undertaking work and study were examples of life participation valued by PwA in previous research [5,6,49,52]. Participants in the current study described how involvement in social/recreational activities and community organisations allowed for communication opportunities, keeping busy, and having a sense of purpose. ...
... All these functions were noted in the current study; for example, talking about living with aphasia, learning about community supports, and feeling satisfied when they were able to offer help. Likewise, several aphasia research studies have demonstrated the importance of peer support to PwA outlining benefits, such as building new friendships, bonding, general support, and mutual understanding [36,52,56]. ...
Purpose
Self-management can lead to increased self-efficacy and improved quality of life for individuals with chronic conditions; however, there is little research exploring how self-management approaches can be used for chronic communication disorders, such as aphasia. Modifications to self-management approaches would be required to accommodate for aphasia; therefore, the input of people with aphasia (PwA) should be sought. The aims of the present study were: (1) To investigate and document the experiences and perspectives of PwA regarding self-management; (2) To explore how technology can be used to support aphasia self-management.
Materials and methods
In-depth, semi-structured interviews were conducted with 26 PwA living in Australia. Qualitative content analysis was used to analyse interview data.
Results
Analysis resulted in six themes: (1) In self-management, PwA take control of life with aphasia and assume responsibility for engaging in opportunities to improve overall communication; (2) Community aphasia groups are important enablers of self-management because they facilitate peer support; (3) Communication partners (CPs) provide multifaceted support in aphasia self-management; (4) SLPs provide integrated support and coordination in aphasia self-management; (5) Technology supports PwA to self-manage speech therapy and communication in daily life; (6) Psychological and physical health issues and societal factors may impact aphasia self-management abilities.
Conclusion
From the perspective of PwA, aphasia self-management involves enhancing skills enabling communication and life participation. PwA are central to aphasia self-management, with support provided by CPs, peers, and SLPs. Technology has a range of applications in aphasia self-management. PwA identified potential personal and contextual barriers that may impact self-management.
•
IMPLICATIONS FOR REHABILITATION
• For people with aphasia, engaging in conversation and social interaction are primary means of managing/improving communicative life participation; therefore, this should be a key focus of aphasia self-management programs.
• Aphasia self-management approaches should maximise the use of available support and provide tailored information, education, and training in the area of self-management to key stakeholders (people with aphasia, communication partners, and speech-language pathologists).
• People with aphasia should be supported to use technology for aphasia self-management, encompassing communication specific and daily life use.
• People with aphasia should be heavily involved in the development of structured aphasia self-management approaches.
... What makes activities meaningful is personal and changes dynamically throughout life, depending on age, experiences, responsibilities, environment, health, and other circumstances. Informal caregivers are aware that participation in meaningful activities is essential to their own well-being (Brown, Worrall, Davidson, & Howe, 2011), but research indicates they spend little time doing activities of their choice. Reduced participation in social and recreational activities has been reported in several studies (Anderson, Linto, & Stewart-Wynne, 1995;Cao et al., 2010;Kniepmann & Cupler, 2014;Le Dorze & Signori, 2010;Lurbe-Puerto, Leandro, & Baumann, 2012), as has the presence of small social networks and feelings of loneliness ( Bakas et al., 2006;Grawburg et al., 2013a;Nätterlund, 2010). ...
... Interventions that increase the independence of individuals with aphasia form one way to improve mental well-being and activity participation. Studies have indicated that such interventions can create more time for informal caregivers to engage in preferred life activities (Araújo, Lage, Cabrita, & Teixeira, 2015;Bakas et al., 2014;Brown et al., 2011). Whereas rehabilitation efforts usually address self-care skills, motor abilities, and cognitive functioning, they give much less attention to the more complex instrumental activities of daily living that are essential to independence. ...
Background: With increased attention to third-party disability, there is a need to evaluate how informal caregivers of people with aphasia participate in diverse life activities. Qualitative research has improved our understanding of experiences and priorities in this essential group of stakeholders. However, there has been limited effort to confirm results quantitatively and based on robust sample sizes.
Aims: To characterize the balance and preference among home/work, leisure, and social activities for informal caregivers based on questionnaires that can also be used with people who have aphasia.
Methods & Procedures: Seventy caregivers for people with aphasia and 46 control participants who were not caregivers completed the Community Integration Questionnaire (CIQ) and a questionnaire version of the Life Interests and Values (LIV) Cards.
Outcomes & Results: CIQ scores did not differ statistically between groups, but the frequency of endorsed activities on the LIV Cards did. Whereas current engagement in home and community activities was similar for the two groups, caregivers reported doing significantly fewer activities in social, physical, and creative and relaxing categories. In contrast to the balance difference for their current life, participants in both groups agreed about wanting to do more social and leisure activities, with many activities rising to the top in both groups.
Conclusions: Informal caregivers for people with aphasia experience a measurable difference between activities they currently do in their lives and activities they want to do. With modification, interviews and questionnaires intended for people with disability can provide a caregiver perspective on living with aphasia that may facilitate coordinated and relationship-focused intervention.
... Over the last ten years, research has identified factors associated with living successfully with aphasia. Most of these studies have been qualitative in nature, involving interviews with PWA, with speech language therapists (SLTs), and with family members and/or friends (Brown, Davidson, Worrall, & Howe, 2013;, 2011a, 2011bCruice, Worrall, & Hickson, 2006;Grohn, Worrall, Simmons-Mackie, & Brown, 2012;Grohn, Worrall, Simmons-Mackie, & Hudson, 2014;Holland, 2006). Themes from these studies such as maintaining meaningful social relationships, making new friends with aphasia, taking responsibility for continued communication improvement, confidence in communication skills, acknowledgement that successful living with aphasia is a journey over time, acceptance of the changes that have happened and coming to terms with one's new identity, have been found to be associated with successful living with aphasia. ...
... A number of psychosocial aspects associated with successful living with aphasia have been reported. These include acceptance, adjustment, taking responsibility for oneself, re-engagement in life roles, self-esteem, mood, positive attitude, hope, transforming identity, autonomy, self-determination, empowerment and self-advocacy, self-expres- sion, self-efficacy and confidence, communication confidence, QoL, and QCL ( Brown et al., 2013Brown et al., , 2010Brown et al., , 2011aBrown et al., , 2011bBrown et al., , 2012Cruice et al., 2006;Grohn et al., 2012Grohn et al., , 2014Holland, 2006). It may be that GC participants' confidence in their communication abilities and in their ability to make decisions increased their QCL thereby supporting positive identity changes, self-empowerment, and successful living with aphasia. ...
Background: Many factors that contribute to successful living with aphasia intersect with the benefits one can get from attending an aphasia group. Affiliated with Toastmasters International, Gavel Clubs (GCs) for people with aphasia (PWA) provide a range of communication activities that promote public speaking and leadership skills. The constructs of communication confidence and quality of communication life (QCL) were introduced over a decade ago but have not been widely investigated.
Aims: This study aims to investigate the association between weekly participation in GC public speaking activities for PWA and the constructs of QCL and communication confidence. In addition, the study aims to explore the association between the severity of aphasia, QCL and communication confidence.
Methods & Procedures: Eight members of a GC for PWA, who attended 31–33 weekly GC meetings per year between 2012 and 2016, participated in assessments of their QCL (using the ASHA Quality of Communication Life (ASHA QCL)), communication confidence (using the Communication Confidence Rating Scale for Aphasia (CCRSA)), and aphasia severity (using the Western Aphasia Battery-Revised (WAB-R)). A link was sought between severity of aphasia and the constructs of QCL and communication confidence.
Outcomes & Results: QCL improved significantly over four years of participation in the GC (Z = 2.103, n = 8, p = .035, r = .74). Communication confidence also improved significantly (Z = 1.973, p = .049, r = .70). No associations were found between the two scales or between the scales and severity of aphasia.
Conclusions: Weekly participation in GC group activities was associated with improved QCL, as measured by the ASHA QCL, and improved communication confidence as measured by the CCRSA. Decision-making (measured by the CCRSA) and the Roles and Responsibilities domain (in the ASHA QCL) also improved. More research is needed to verify these findings using a study design that includes a control group, to identify the links between the various psychosocial aspects at play in the life of PWA and to conceptualise how the gains achieved with GC participation can be applied more broadly to successful living with aphasia.
... Significant others are often directly affected by aphasia, 5,6,8,10,11 and they play an important role in rehabilitation. 12,13 Their needs and priorities for rehabilitation should therefore be considered in order to ascertain buy-in and appropriateness of therapeutic intervention to everyday contexts. ...
... The fact that the SLPs in the current study selected many of the life areas as important for adults with aphasia to work on, suggests that they were able to focus on participation goals rather than only on discipline-specific goals, as was previously suggested in some studies 8,9 . Similar results were found by Harty et al. 25 , as well as Brown et al. 10 , who found that SLPs were well aware that adults with aphasia tend to select goals related to participation and life activities rather than to focus on discrete, discipline-specific goals. These results that life activities targeted in SLP intervention did not need to pertinently fall into the realm of communication. ...
Objectives:
Client-centred rehabilitation implies that persons with aphasia and their significant others are actively involved in all decisions regarding rehabilitation, including the setting of rehabilitation priorities and goals. This study aimed to describe and compare the perspectives of adults with aphasia, their significant others and their speech-language pathologists (SLPs) regarding the importance of nine life areas for the rehabilitation of adults with aphasia.
Method:
A total of 15 adults with expressive aphasia rated the importance of nine life areas using the Talking Mats™ framework. A questionnaire was used to obtain the ratings of 15 of their significant others and the 15 SLPs treating them.
Results:
Most life areas were rated as important to work on in rehabilitation by most participants. The adults with aphasia rated the areas as important more frequently than their significant others and SLPs. All participants rated Communication as important. Statistically significant differences were noted for three of the nine life areas.
Discussion:
The life areas which the participants were questioned about seem to provide a good starting point for rehabilitation teams to find common ground for collaborative goal setting. The Talking Mats™ approach allowed adults with aphasia to participate in the process. It can be a useful tool to promote client-centred rehabilitation for adults with expressive communication difficulties.
... For example, some authors have suggested that generalisation may be supported by the adoption of a group treatment approach (Elman & Bernstein-Ellis, 1999;Kearns & Elman, 2001;Palchalska, 1991). Group treatment provides an increased range of conversational partners and conversational topics (Ross, Winslow, Marchant, & Brumfitt, 2006), increased friendships and support (Brown, Worrall, Davidson & Howe, 2011). Groups have also been reported to provide a range of psychosocial benefits such as reduced depression (Brumfitt & Sheeran, 1997), improved social participation and reduced feelings of social isolation (Vickers, 2010), and increased confidence (Ross et al., 2006). ...
... This choice is also consistent with the findings of Davidson, Worrall and Hickson (2003) who identified news and current affairs and expressing opinions on social issues amongst areas that were limited in the communication of people with aphasia when compared with healthy controls (see Renvall, Nickels & Davidson, 2013b, for discussion). Improving communication on these topics may therefore help reduce the social isolation that is commonly experienced by people with aphasia (Parr, 2007): improving social interaction has been noted a key area of concern often identified by people with aphasia and their families (Brown et al., 2011). ...
Background:
Traditional group-based aphasia intervention has been shown to benefit people with aphasia in a variety of ways. However, despite the prevalence of anomia and the impact it has for communication, there has been little investigation as to whether these interventions improve word retrieval.
Objective:
This study aimed to determine the effects on word retrieval of a 'traditional' out-patient group intervention.
Methods:
A 6-week group therapy programme focused on current-affairs topics with facilitator-led discussion and language tasks. Half the topics received a supplementary, self-directed, anomia home programme. Using a single case experimental design, replicated across three participants, we examined the effectiveness of the group, and the group+home programme, in facilitating word retrieval in picture naming and connected speech.
Results:
The participants showed a pattern of improved picture naming over the course of the study for the treated topics which was not evident for the untreated control topics. However, it was difficult to attribute this improvement unequivocally to the treatment.
Conclusions:
While participants felt that the group was beneficial, there was little clear evidence for treatment-related gains in word retrieval. 'Traditional' group treatment has many positive features, but clinicians need to be cautious regarding the extent of impairment-related gains that can be expected, which seem small at best.
... Parr et al's (1997) seminal work found that the impacts of aphasia are extensive and complex, and sparked interest in exploring the 'insider perspective' and hearing the unique voices of people with aphasia. Research has focused on how people live successfully with aphasia (Holland, 2006;Holland et al, 2011) and which aspects of quality of life they value as most meaningful and important (Cruice et al, 2010). In this study we used Frank's (1995) illness narrative types (chaos, quest and restitution) to analyse the perceptions of aphasia in three participants with different aetiologies and experiences. ...
... We found similar findings in our prior work exploring aphasia naming ability which showed a strong association between family size and naming performance [27]. The general stroke literature has shown that families play a key role in stroke recovery [61]. The relationship between families and aphasia recovery is less clear yet families engaging in the lives of stroke survivors has been shown to be related to better recovery [62]. ...
Introduction
Traditionally, the study of aphasia focused on brain trauma, clinical biomarkers, and cognitive processes, rarely considering the social determinants of health. This study evaluates the relationship between aphasia impairment and demographic, socioeconomic, and contextual determinants among people with aphasia (PWA).
Methods
PWA indexed within AphasiaBank—a database populated by multiple clinical aphasiology centers with standardized protocols characterizing language, neuropsychological functioning, and demographic information—were matched with respondents in the Medical Expenditure Panel Survey based on response year, age, sex, race, ethnicity, time post stroke, and mental health status. Generalized log-linear regression models with bootstrapped standard errors evaluated the association between scores on the Western Aphasia Battery-Revised Aphasia Quotient (WAB-R AQ) and demographic, economic, and contextual characteristics accounting for clustering of respondents and the stratification of data collection. Region, age, and income specific models tested the sensitivity of results.
Results
PWA over age 60 had 2.4% (SE = 0.020) lower WAB-R AQ scores compared with younger PWA. Compared to White PWA, Black and Hispanic PWA had 4.7% (SE = 0.03) and 0.81% (SE = 0.06) lower WAB-R AQ scores, respectively, as did those and living in the Southern US (-2.2%, SE = 0.03) even after controlling for age, family size, and aphasia type. Those living in larger families (β = 0.005, SE = 0.008), with income over $30,000 (β = 0.017, SE = 0.022), and a college degree (β = 0.030, SE = 0.035) had higher WAB-R AQ relative to their counterparts. Region-specific models showed that racial differences were only significant in the South and Midwest, while ethnic differences are only significant in the West. Sex differences only appeared in age-specific models. Racial and ethnic differences were not significant in the high-income group regression.
Conclusion
These findings support evidence that circumstances in which individuals live, work, and age are significantly associated with their health outcomes including aphasia impairment.
... Furthermore, in the context of post-stroke recovery, significant others of people with aphasia are known to adopt a diverse range of roles both as providers and recipients of care (Brown, Worrall, Davidson, & Howe, 2011;Grawburg, Howe, Worrall, & Scarinci, 2019;Luker et al., 2017;Shafer et al., 2019). This suggests that a closer examination of their various roles in relation to the person with aphasia may be necessary for the interpretation of their perspective on conversations about prognosis. ...
... 13 The burden on relatives is multifaceted, and research has shown that relatives often neglect their own physical, emotional, and social needs. [14][15][16][17] The most common symptoms reported by relatives are disturbed sleep, 18,19 stress, anxiety, 6,20 and social isolation. 21 Additionally, relatives of patients with an MBT experience a reduced quality of life compared with relatives of patients with other kinds of brain tumors. ...
Objective:
This scoping review identifies and maps the breadth of available evidence on relatives' wants and needs for involvement throughout the course of the disease of patients with a malignant brain tumor.
Introduction:
Patients diagnosed with a malignant brain tumor often have a poor prognosis, including a rapid progression of the disease, with changing physical, cognitive, and psychosocial symptoms. The caregiver burden is described as multifaceted, and relatives often neglect their own physical, emotional, and social needs.
Inclusion criteria:
This review included studies that defined or assessed the wants and needs for involvement of relatives of patients with a malignant brain tumor throughout the disease and treatment trajectory. The populations were relatives of patients with a malignant brain tumor in various settings.
Methods:
The JBI methodology for scoping reviews was employed in accordance with a previously published a priori protocol. An extensive search was conducted in the MEDLINE (PubMed), CINAHL (EBSCO) and Embase (Ovid). Gray literature was searched for using Grey Matters (CADTH) and BASE. The initial search was conducted in February 2020 and updated in March 2022. This review was limited to studies published since January 2010 in English, German, or Scandinavian languages. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. Textual data mapping of wants and needs for involvement were synthesized narratively using a basic qualitative content analysis The review findings are reported in this paper as a descriptive summary, with tables and figures to support the data.
Results:
The search identified 3830 studies, of which 10 were included. The studies were conducted in 6 countries and were published between 2010 and 2018. In total, 4 studies applied a qualitative study design that used semi-structured interviews, 2 studies applied a mix-method design that used questionnaires and semi-structured interviews, 1 study applied a multi-method design, and 3 studies used a quantitative survey. Research was conducted in a variety of settings, from an inpatient neurology center/neuro-oncology to post-bereavement. The findings showed that most of the relatives' needs were related to the caregiver role. The relatives were actively involved in the patients' disease and treatment trajectories. However, relatives were often required to adopt the caregiver role and a large amount of responsibility at short notice. Thus, they expressed their need for a stronger connection with health care professionals because their needs changed as rapidly as the disease progressed. Relatives also had a need related to maintaining hope, which was essential for their involvement, and their wants for involvement in the patients' disease and treatment trajectories depended on a significant and timely amount of information.
Conclusions:
The findings reveal that relatives are actively involved in the patients' disease and treatment trajectories. The relatives want and need support for their involvement, and these desires are related directly to the accessibility and availability of health care professionals, as the demands placed on them change rapidly throughout the progression of the disease. One way to address relatives' wants and needs might be to further strengthen the relationship between the relatives and health care professionals.
Supplemental digital content:
A Danish-language version of the abstract of this review is available as Supplemental Digital Content [http://links.lww.com/SRX/A26].
... Although it is well known that aphasia affects the entire family, not just a person with aphasia (Grawburg et al., 2019), there are few studies addressing parenting with aphasia (for example Manning et al., 2021;Ryan & Pitt, 2018). These studies document that parents with aphasia wish for support to engage with their children and that families with aphasia strive to communicate well, which contributes to better living with aphasia (Brown et al., 2011). However, we lack insights into how aphasia can affect the organisation of ordinary, everyday family life to be able to offer relevant support. ...
Negotiating bedtime or table manners with children can be challenging, probably even more so for parents with aphasia. This study aims to explore how parents with aphasia deal with children's resistance to requests in everyday interactions. It examines the interactional practices of parents with aphasia and their consequences for deontic authority (the right to direct another person's future action). Using conversation analysis, I conducted a collection-based study of request sequences in 10 hours of video recordings involving three parents with aphasia (two with mild and one with severe aphasia). Two different types of child resistance following a parental request were analysed: passive resistance (indicated by the child's inaction) and active resistance (indicated by the child's attempt to bargain or give an account for not doing the requested action). It is shown that all three parents with aphasia respond to passive resistance with pursuits, such as 'hey' and other prompts. However, while the two parents with greater linguistic resources deal with active resistance by seeking compliance with counterarguments and by cautiously upgrading their deontic rights, such fine-tuning is not present when the parent with more limited linguistic resources deals with his child's resistance. This parent uses intrusive physical practices, gestures, increased volume and repetition. This analysis offers insights into practices that appear to affect the ability of these parents with aphasia to negotiate with their children and thus engage in parenting and participate in family life. In order to be able to offer support when engaging with children as desired by parents with aphasia, it is important to gain further insights into how aphasia can affect the organisation of everyday family life.
... Similar to high income, this study showed that family size is important to naming ability and aphasia recovery. Families play an important role in the lives of PWA and their new onset of communication difficulties (Brown et al., 2011). While the link between families and aphasia recovery is not entirely clear, research in the general stroke literature has highlighted the key role of family in the recovery process. ...
Introduction:
Significant attention has been given to the role of brain function and disruption in determining performance on naming tasks among individuals with aphasia. However, scholarly pursuit of a neurological explanation has overlooked the fundamental cornerstone of individual health-the underlying social, economic, and environmental factors that shape how they live, work, and age, also known as the social determinants of health (SDOH). This study examines the correlation between naming performance and these underlying factors.
Methods:
Individual level data from the 2010 Moss Aphasia Psycholinguistic Project Database (MAPPD) was matched with the 2009-2011 Medical Expenditure Panel Survey (MEPS) using a propensity score algorithm based on functional, health, and demographic characteristics. Multilevel, generalized, nonlinear regression models were applied to the resulting data set to assess the correlation between the Boston Naming Test (BNT) percentile score and age, income, sex, race, household size, marital status, aphasia type, and region of residence. Poisson regression models with bootstrapped standard errors were used to estimate these relationships RESULTS: Discrete dependent variable estimation with non-normal prior specification included individual level (age, marital status, years of education), socioeconomic (family income), health (aphasia type), household (family size), and environmental (region of residence) characteristics. Regression results indicated that, relative to individuals with Wernicke's, individuals with Anomic (0.74, SE = 0.0008) and Conduction (0.42, SE = 0.0009) aphasia performed better on the BNT. While age at the time of testing was not significantly correlated, higher income level (0.15, SE = 0.0003) and larger family size (0.002, SE = 0.002) was associated with higher BNT score percentiles. Finally, Black persons with aphasia (PWA) (-0.0124, SE = 0.0007) had lower average score percentiles when other factors were held constant.
Conclusions:
The findings reported here suggest higher income and larger family size are associated with better outcomes. As expected, aphasia type was significantly associated with naming outcomes. However, poorer performance by Black PWA and individuals with low income suggests that SDOH can play a critical role (positive and negative) in naming impairment in some populations with aphasia.
... mendukung self management antara lain adalah kesulitan untuk melibatkan anggota keluarga dalam rehabilitasi (14). Pada penelitian kualitatif tentang perspektif keluarga dengan salah satu anggota keluarga dengan afasia di dapatkan bahwa dukungan keluarga untuk individu dengan afasia penting untuk mencapai keberhasilan (15). Bentuk dukungan keluarga antara lain dengan mendampingi pasien pada saat dilakukan sesi terapi, dimana pasien membutuhkan kehadiran keluarga yang diharapkan sebagai pemberi semangat untuk mencapai keberhasilan. ...
Stroke dapat menyebabkan kematian dan menimbulkan dampak kecacatan. S elf management dengan dukungan keluarga diperlukan untuk beradaptasi dengan kondisi pasca stroke serta mencegah stroke berulang. Dukungan keluarga mempunyai peran untuk keberhasilan self management . Tujuan : literature review bertujuan untuk mengidentifikasi dan menganalisa peran penting dari dukungan kelurga terhadap self management pasien pasca stroke. Desain : naratif literature review. Metode: analisis penelitian yang diterbitkan pada data base online ProQuest, EBSCO, Google scholar dan Scopus, CINAHL, MEDLINE, Science direct. Penelitian dipilih menggunakan kriteria dan kata kunci periode 2015-2019. Sembilan penelitian dilakukan analisa menggunakan proses literature review. Hasil: Dukungan keluarga yang dapat diberikan pada pasien stroke dalam melaksanakan self management meliputi: dukungan terhadap manajemen penyakit, dukungan terhadap manajemen peran, dukungan terhadap manajemen emosi Kesimpulan : dukungan yang kuat dari keluarga diperlukan untuk meningkatkan self management pada pasien stroke karena keluarga merupakan pendamping utama pasien dalam beradaptasi dengan perubahan yang terjadi pasca stroke.
... In keeping with a policy shift towards person-centred care for living well with chronic conditions, including stroke [16][17][18], aphasia researchers are increasingly focused on understanding how to support wellbeing and life participation [19,20]. There is a growing body of qualitative literature examining the insider perspectives of PWA on a range of inter-related topics including participation, community integration, life roles, coping, adjustment and quality of life [14,[21][22][23][24][25][26][27][28][29][30][31][32][33] as well as specific research in living successfully or living 'well' with aphasia (LWA) [34][35][36][37][38][39]. In a recent qualitative evidence synthesis exploring the perspectives of PWA towards topics relating to LWA, we found that LWA is promoted via: personal integration and acceptance of aphasia; flexible, responsive, long-term health and related support services for PWA; opportunities for community participation and contribution; support for, and from, family and friends; access to aphasia information; and healthcare workers who are knowledgeable about aphasia and supporting communication with PWA [40]. ...
Purpose
This study aimed to explore the perspectives of working-aged adults with post-stroke aphasia (PWA) towards what has or would help them in living well with aphasia (LWA). This paper reports the findings in relation to stroke care and its relevance for LWA.
Materials and methods
This qualitative study was designed with input from a Public and Patient Involvement advisory group. We conducted in-depth, semi-structured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis.
Results
Support services and LWA spanned five themes: Inpatient care; Support in the community; Speech therapy; Mental health; and Aphasia education and training. Per the findings, all aspects of stroke care were affected and challenged by aphasia. Access to services and information was variable. PWA of working-age, their families and children need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. Healthcare workers must be equipped with aphasia competency.
Conclusions
The results highlight a need for equitable, transparent, responsive access to services, information and stroke liaison support. The findings extend knowledge of the importance of stroke care for supporting working-aged adults and their families to live well in the context of aphasia.
•
Implications for rehabilitation
• There is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia.
• People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery.
• This includes flexible access to mental healthcare and speech and language therapy.
• In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support.
• Training to improve aphasia competency is imperative for healthcare workers.
... SLTs provide this at every stage across the pathway, but people living with aphasia for many years need the opportunity to develop their continual understanding of aphasia. 14 We deliver this in both 1:1 and group formats, as PWA find the sharing of their aphasia stories and questions about what has happened to them to be particularly helpful. ...
Less is more, right? Wrong: more is more. Here we make the case that the total dose of speech and language therapy (SLT) is a key factor in improving persons with aphasia’s (PWA) outcomes. The challenge is: how can we deliver high-dose therapy when resources are stretched? We review the recent evidence for dose and timing of SLT and then describe one solution to the problem of dose that we are trialing at Queen Square, an Intensive Comprehensive Aphasia Programme (ICAP).
... Models of health and wellbeing that consider emotional, physical, spiritual and family impacts of a health condition and treatment, such as te whare tapa wh a, fit well with community-based therapy approaches. The importance of family highlighted in our studies of choral singing and Gavel Club is consistent with other research highlighting the impact of aphasia on families and the need to consider the significant role of families in rehabilitation (Brown, Worrall, Davidson, & Howe, 2011). ...
Purpose: Te whare tapa whā represents a Māori view of health and wellness in four dimensions: taha wairua (spiritual health), taha hinengaro (mental health), taha tinana (physical health) and taha whānau (family health). This model of health focuses on indigenous Māori in Aotearoa/New Zealand but has relevance for all people. Speech-language pathologists, including those not familiar with this model, recognise that all four dimensions are needed to support health and wellbeing. Taha wairua includes the importance of culture and heritage to personal identity, an area that speech-language pathology (SLP) recognises as key to clinical competency. Taha hinengaro includes the need to express thoughts and feelings, another area particularly salient to SLP. The other two dimensions taha tinana (physical health) and taha whānau (family health) are arguably more familiar in the day-to-day work of speech-language pathologists.
Method: Two broad strands of research are examined within this model of health exploring the challenges faced by vulnerable populations namely: (1) two community based groups (a Choir and a Gavel Club) for people with acquired neurological conditions such as stroke and Parkinson’s disease, and (2) diagnosis and management of hearing loss and auditory processing disorder.
Result: Community based groups, explored through the CeleBRation Choir and the Gavel Club, highlighted the application of all aspects of te whare tapa whā to the experiences of people with neurological conditions participating in these community therapies. In the area of hearing loss and auditory processing disorder, gaps across all four dimensions of taha wairua, taha hinengaro, taha tinana and taha whānau were identified in the available literature and in examination of clinical provision for participants.
Conclusion: Te whare tapa whā provides a framework to consider all the elements that contribute to people living well while experiencing communication challenges within their whānau (extended family). This approach relies on strong partnerships between clinicians, extended family, researchers, communities, organisations and other professionals. Clinicians and researchers are encouraged to consider how their beliefs, practices and impact could improve through consideration of Indigenous health models such as te whare tapa whā.
... All patients living with at least one relative had significantly higher SSQOL indices than those living alone or in nursing homes. Our research data are similar to the results of a study conducted in Portugal and Luxembourg that demonstrated a strong correlation between patient satisfaction and family integration in aphasia rehabilitation therapy [49] as well as other works [59][60][61][62]. ...
... One of the most common consequences of stroke is aphasia, a language disorder that affects about one-third of stroke survivors (Berthier, 2005;Ingall, 2004). Aphasia commonly impairs a person's communicative and social functioning, employability, and QOL and places a tremendous financial, psychosocial, physical, and emotional burden on family caregivers (Brown et al., 2011;Grawburg et al., 2014;Johnson et al., 2019). In the context of stroke and aphasia rehabilitation, the primary aim is to improve people's sense of well-being and QOL (Party, 2008). ...
Background: Aphasia is one of the frequent consequences of stroke. The Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39) is a commonly used instrument for measuring the quality of life in persons with aphasia following stroke.
Aims: The aim of this study was twofold: (1) to examine the reliability and validity of the Persian version of the SAQOL-39, and (2) to examine the agreement between the self- and proxy-report versions of the scale.
Methods and procedures: This cross-sectional study included 30 stroke people with aphasia in Tehran, Iran from January to April 2018. The SAQOL-39, 12-Item Short Form Health Survey (SF-12), Visual Analogue Scale (VAS), Barthel index (BI), and Modified Rankin Scale (MRS) were administered to all patients. In addition, the proxy version of SAQOL-39 was completed by the patients’caregivers. Tests of data quality included descriptive statistics of the data, ceiling and floor effects, internal consistency reliability, test-retest reliability, convergent validity, and agreement between self-report and proxy-report versions of the SAQOL-39.
Outcomes and results: The mean SAQOL-39 total scores for the self- and proxy-report versions were 3.19 (SD = 0.79) and 3.38 (SD = 0.83) respectively. There were no significant floor and ceiling effects for both self- and proxy-report versions of the SAQOL-39 and its subscales. Both self- and proxy-report versions of the SAQOL-39 demonstrated satisfactory internal consistency (Cronbach’s alpha>0.7) and test-retest reliability (intraclass correlation coefficient>0.7). Convergent validity of the SAQOL-39 was supported by its moderate to strong correlation with SF-12 (r = 0.701 for the self-report and r = 0.432 for proxy-report version). The intraclass correlation coefficient and visual inspection of a Bland-Altman plot demonstrated satisfactory agreement between self- and proxy-report versions.
Conclusions: The Persian version of the SAQOL-39 demonstrated satisfactory reliability and validity; these results support its use to measure quality of life for Persian stroke people with aphasia.
... Essence in phenomenology refers to the essential elements, generalisations, and meaning of experiences under study (Giorgi, 1997). Recently, phenomenology has helped uncover SLP views on various professional issues such as evidence-based practice (Foster, Worrall, Rose, & O'Halloran, 2015) and living successfully with a disability (Brown, Worrall, Davidson, & Howe, 2011). However, voices in these studies are primarily female, creating a gap in our knowledge of the male perspective and its influence on practice. ...
Purpose: A significant gender imbalance exists in the profession of speech-language pathology and the perspectives of male speech-language pathologists are underrepresented in the professional literature. This study explored the role of gender as a factor related to the academic and professional experiences of male speech-language pathologists working in the United States.
Method: Phenomenology was used to understand factors influencing the lived experiences of males in the profession. In-depth semi-structured interviews were collected from fifteen male speech-language pathologists and subjected to inductive thematic analysis.
Result: Four superordinate and thirteen subordinate themes emerged from the data. Findings suggest that males experience challenges working in a female-dominated profession. That said, males highlighted their progression towards inclusion in the profession and overall perceived their academic and professional life as positive and rewarding. Participants valued the distinctive quality of being male in a female-dominated profession and described a sense of empowerment by virtue of being male.
Conclusion: A gender disparity remains present in the field of speech-language pathology, which limits the ability to best serve a diverse population and creates health disparities. While participants reported many challenges working in a female-dominated profession, these obstacles appeared to motivate rather than hinder work-related performance and overall job satisfaction. The themes presented here help to develop a deeper understanding of the perspectives of males in the field and the specific factors that contribute to their experiences. Additionally, these data can inform future strategies for recruitment and retention of males in the profession.
... This finding was supported by the significant improvement on the QCL in Socialization and Activities and Roles and Responsibilities and increased engagement in relevant communication activities on the COMACT. Several authors have identified similar outcomes of aphasia group therapy (Elman & Bernstein-Ellis, 1999b;Hoen, Thelander, & Worsley, 1997;Ross et al., 2006;van der Gaag et al., 2005) with Brown, Worrall, Davidson, and Howe, (2011) identifying that this may be an important facilitator to living successfully with aphasia. It is possible that TeleGAIN contributed to these outcomes in three ways-first by providing PWA access to a meaningful activity, second by enhancing communicative confidence and third, identifying and problem-solving participation barriers. ...
Purpose:
Aphasia group therapy can result in improvements in communication, participation and quality of life (QOL). However, evidence for aphasia group interventions with combined aims across the International Classification of Functioning, Disability and Health (ICF) is limited. TeleGAIN is a holistic aphasia group intervention that can be delivered via telepractice. This study builds on prior pilot work and addresses the need for additional research into the effectiveness of TeleGAIN. The aim of this study was to describe changes in aphasia severity, communication related QOL and participation, for people with chronic aphasia following TeleGAIN.
Method:
Nineteen participants with aphasia were assessed on a range of outcome measures before and after a twelve-week block of TeleGAIN delivered via web based videoconferencing. Treatment provided opportunities to participate in conversation, engage with others with aphasia and complete functional communication activities.
Result:
Statistical analyses revealed statistically significant improvements in communication related QOL, increased engagement in communicative activities, and decreased aphasia severity.
Conclusion:
Results from this study suggest that the online delivery of a multi-purpose group intervention for people with aphasia can result in improved communication, communicative participation, and QOL. It also highlights the potential for intervention provided via telepractice to offer an alternative to face-to-face services.
... Similar to our first study using the LIV Cards, we observed that a review and discussion of response differences between the PWA and proxy responder had therapeutic value in that it helped the partners see each other's point of view and often prompted immediate problem solving and resolutions of misunderstandings. Additionally, it may be important to understand how caregivers feel about their own life activities and address those needs to reduce third-party disability (Brown, Worrall, Davidson, & Howe, 2011;Grawburg, Howe, Worrall, & Scarinci, 2013). Regardless of reason and strategy for seeking input from close family members and friends, it seems the value of this input lies in its relationship to the priorities identified by the individual with aphasia, not in the potential for replacing them. ...
Background: Person-centered rehabilitation requires that meaningful life activities are identified on a case-by-case basis, but the discovery process can be inaccessible for clients with aphasia. Card-sorting methodology addresses core barriers and help clients communicate their preferences.
Aims: To characterize life activities that people with aphasia want to do, to estimate consistency in selections over time, and to replicate previous findings about the ability of family members and friends to identify their loved ones’ activity preferences.
Methods & Procedures: We administered the Life Interests and Values (LIV) Cards to 26 people with aphasia, asking them which of 95 depicted life activities they wanted to do more in their lives. Half the activity cards were presented again one to ten weeks later. Twenty family members or friends responded as proxies by selecting from a questionnaire with the same items.
Outcomes & Results: Participants with aphasia selected diverse activities, though as a group they identified significantly more activities from the “social” activity category than from the “home and community”, “creative and relaxing”, or “physical” categories. Across the repeated interviews, they selected identical activities on average 78% of the time. Item-to-item agreement between people with aphasia and their proxy responders was significantly lower at 69%.
Conclusions: People with aphasia have diverse activity interests and are reliable informants about their preferences. Because significant others have limited ability to predict these choices, their impressions are inadequate substitutes for direct interviews.
... Those which did, either adopted Grounded Theory [43,48,55,64,66] or phenomenology. [8,29,31,32,34,60,65] A variety of analytical methods were reported ( Table 2). ...
Objective
To describe and explain stroke survivors and informal caregivers’ experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services.
Design
Systematic review and meta-ethnography.
Data sources
Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015).
Eligibility criteria
Primary qualitative studies focused on adult community-dwelling stroke survivors’ and/or informal caregivers’ experiences of primary care and/or community healthcare services.
Data synthesis
A set of common second order constructs (original authors’ interpretations of participants’ experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods’ criteria.
Results
51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke.
Limitations
Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems.
Conclusions
Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services.
Systematic review registration number
PROSPERO 2015:CRD42015026602
... 52 53 55 56 62 63 76 Brown et al52 suggest that participating in meaningful activity is a process and describe participants' experiences of finding a balance between the things they could still do and those they were no longer capable of.I can't read anymore . . . spelling is horrible since my stroke . . . ...
Objective
To review and synthesise qualitative literature relating to the longer-term needs of community dwelling stroke survivors with communication difficulties including aphasia, dysarthria and apraxia of speech.
Design
Systematic review and thematic synthesis.
Method
We included studies employing qualitative methodology which focused on the perceived or expressed needs, views or experiences of stroke survivors with communication difficulties in relation to the day-to-day management of their condition following hospital discharge. We searched MEDLINE, EMBASE, PsycINFO, CINAHL, The Cochrane Library, International Bibliography of the Social Sciences and AMED and undertook grey literature searches. Studies were assessed for methodological quality by two researchers independently and the findings were combined using thematic synthesis.
Results
Thirty-two studies were included in the thematic synthesis. The synthesis reveals the ongoing difficulties stroke survivors can experience in coming to terms with the loss of communication and in adapting to life with a communication difficulty. While some were able to adjust, others struggled to maintain their social networks and to participate in activities which were meaningful to them. The challenges experienced by stroke survivors with communication difficulties persisted for many years poststroke. Four themes relating to longer-term need were developed: managing communication outside of the home, creating a meaningful role, creating or maintaining a support network and taking control and actively moving forward with life.
Conclusions
Understanding the experiences of stroke survivors with communication difficulties is vital for ensuring that longer-term care is designed according to their needs. Wider psychosocial factors must be considered in the rehabilitation of people with poststroke communication difficulties. Self-management interventions may be appropriate to help this subgroup of stroke survivors manage their condition in the longer-term; however, such approaches must be designed to help survivors to manage the unique psychosocial consequences of poststroke communication difficulties.
... Among patients, it is interesting to note that they believe that social support plays an important role in their therapy. Brown et al. (2011) of family members of patients with aphasia. ...
... Las limitaciones para comunicarse efectivamente con las personas con afasia generan actitudes de frustración para el sujeto y sus interlocutores (40,41). La escritura, también con dificultades, limita la comunicación y de acuerdo con sus preferencias y cotidianidad, el impacto de esta será mayor (42,43). ...
... [25][26][27] Similarly, people who identify as living successfully with aphasia attribute their success to positive mood traits and attitudes. [28][29][30] ...
Considerable attention has been given to the identification of depression in stroke survivors with aphasia, but there is more limited information about other mood states. Visual analog scales are often used to collect subjective information from people with aphasia. However, the validity of these methods for communicating about mood has not been established in people with moderately to severely impaired language.
The dual purposes of this study were to characterize the relative endorsement of negative and positive mood states in people with chronic aphasia after stroke and to examine congruent validity for visual analog rating methods for people with a range of aphasia severity.
Twenty-three left-hemisphere stroke survivors with aphasia were asked to indicate their present mood by using two published visual analog rating methods. The congruence between the methods was estimated through correlation analysis, and scores for different moods were compared.
Endorsement was significantly stronger for "happy" than for mood states with negative valence. At the same time, several participants displayed pronounced negative mood compared to previously published norms for neurologically healthy adults. Results from the two rating methods were moderately and positively correlated.
Positive mood is prominent in people with aphasia who are in the chronic stage of recovery after stroke, but negative moods can also be salient and individual presentations are diverse. Visual analog rating methods are valid methods for discussing mood with people with aphasia; however, design optimization should be explored.
The definitions and features of resilience, the process and outcome of successfully responding to adversity, are variable across the disability and rehabilitation literatures, and its influence on aphasia treatment and outcomes is as of yet unknown. This scoping review identified and thematically categorized characterizations and descriptions of resilience and the similarly used terms adaptation, adjustment, and coping in the aphasia research literature. Frequently noted features of resilience included internal/cognitive emotional responses, such as positive self-concept, attitude/outlook, and psychological function, as well as external/behavioral responses, such as engaging in new activities and opportunities for social connection. These general features align with a definition of resilience recently developed for individuals with chronic impairment. And, although little information about the influence of resilience on treatment engagement and outcomes emerged from the reviewed literature, a number of clinical considerations and research directions are suggested.
Purpose: Healthcare models have incorporated self-management approaches to facilitate increased patient responsibility for chronic condition management. As aphasia is a chronic condition, self-management may be beneficial for people with aphasia; however, the possible impacts of the language disorder on self-management must be acknowledged and addressed. Speech-language pathologists would likely be principal providers of self-management support; therefore, their perspectives should be sought when considering development of aphasia self-management approaches. This study aims to explore speech-language pathologist perspectives of aphasia self-management.
Method: In-depth, semi-structured interviews conducted with 15 speech-language pathologists in Australia. Interview data analysed using qualitative content analysis.
Result: Aphasia self-management was viewed as a person- and family-centred approach enabling comprehensive long-term care for people with aphasia and promoting control, responsibility, and independence. Speech-language pathologists were seen to have a substantial role providing self-management support and consultation, and training was required to expand this role. Communication partners and peer support were highly valued. Personal and environmental factors may influence successful aphasia self-management. Differences between aphasia self-management and chronic condition self-management were considered.
Conclusion: Self-management could facilitate long-term sustainable aphasia management. Aphasia self-management approaches should factor in how to maximise communication partner and peer support. Aphasia-friendly self-management resources are necessary.
Purpose:
Knowing what to expect poststroke is important for many significant others of people with aphasia, yet an understanding of their perceptions and preferences in receiving prognostic information is limited. This knowledge is needed to inform the formulation and delivery of aphasia prognoses as conversations about prognosis can be harmful or helpful depending on their alignment with key stakeholder perspectives. Our preliminary study sought insight into the perspectives of significant others of people with aphasia on receiving prognostic information, with an aim toward informing evidence-based practice in aphasia prognostication.
Method:
We interviewed seven significant others of people with aphasia, 3-12 months poststroke. The interviews were semistructured, conducted one-to-one, and analyzed qualitatively using reflexive thematic analysis.
Results:
Five themes were drawn from the interviews: (a) You don't know what you don't know. (b) Having them alive is the best you can ask for. (c) Recovery in the eye of the beholder. (d) Outcomes don't matter unless they help me help them. (e) It's my prognosis too if I'm living with aphasia.
Conclusions:
A significant other's prognosis-related perceptions and preferences are products of their poststroke reality and may inadvertently shape that of the person with aphasia. In order to facilitate recovery, prognostication practices need to consider the needs of significant others both as providers of care and as requiring care themselves for their first-hand experiences of third-party disability.
Background: Prior research suggests that initial aphasia severity, lesion size, and lesion location are the most salient factors in predicting recovery outcomes. While these factors provide important prognostic information, information that is individualized and readily available to clinicians is limited. Deficits in naming are common to all aphasia types and are routinely targeted in aphasia assessment and treatment, with cues provided to facilitate lexical retrieval.
Objectives: In this study, we examine aphasia recovery factors that are readily available to clinicians, examining whether a person’s ability to improve naming with cues, indicating “stimulability,” will be predictive of future word retrieval.
Methods: Ten participants with aphasia following a left-hemisphere stroke participated in initial assessment, seven of whom met criteria for longitudinal assessment. Stroke and early clinical recovery data were collected for all participants. At four timepoints over one year we evaluated longitudinal participants’ naming ability and measured the proportion of successful lexical retrieval with the presentation of phonemic, feature, and sentence cues.
Results: For all participants, multiple descriptive factors regarding recovery, including lesion information, information from the acute inpatient timeframe, and communication opportunities, were examined. For individuals followed longitudinally, naming stimulability did not consistently predict naming accuracy at the subsequent assessment timepoint. Individuals’ attempts at naming emerged as a metric related to future naming performance warranting further evaluation.
Conclusions: Multiple factors related to recovery must be considered when providing prognostic information. Naming stimulability and attempts at naming provide some information regarding future performance, but are not consistently reliable across timepoints.
Background
Intensive comprehensive aphasia programs (ICAPs) have gained popularity in recent years. Outcomes from ICAPs have demonstrated measurable improvements for most who take part, but how do people with aphasia and their family members experience an ICAP?
Aim
The aim of this paper was to explore, through qualitative interviews, the experiences of persons with aphasia and their family members who took part in an ICAP.
Methods & Procedures
Twelve interviews were conducted with persons with aphasia and family members regarding their experiences with the ICAP that they had just completed. Nine persons with aphasia were interviewed with their family members and three chose to take part in the interview alone. The Framework Analysis method was used to identify themes from the transcribed interviews.
Outcomes & Results
The interviewees discussed four themes related to treatment, psychosocial environments, physical environments, and outcomes. The interviewees remarked on the challenges that were provided by the treatment and how the treatment was different from previous treatment. Comments were made related to the relationships the participants and families developed within the context of the program. The physical environment allowed for relationships to develop. The interviewees discussed the physical and social environment as important additional factors that contribute to the overall therapeutic effect of the ICAP. Positive outcomes were noted in language skills and psychosocial contexts.
Conclusions
Based on interviewees’ descriptions of this one ICAP, the concept of a therapeutic milieu was developed to describe how the intersection of the treatment, psychosocial interactions, and physical setting related to outcomes. Interviewees described how the therapeutic milieu of the ICAP was interwoven with the intensive therapy to create a “package” of therapy that led to improved outcomes. Implications for non-ICAP clinical practice is that participants linked more intensive therapy and greater social interactions with better outcomes.
Background: Self-management approaches are increasingly recommended after stroke with the aim of supporting longer-term adaptation, adjustment and condition management. Stroke survivors with aphasia (SSWA) have particularly poor longer-term outcomes; however, the suitability of self-management for SSWA is unclear. Speech and language therapists (SLTs) play a key role in the provision of care for this group of stroke survivors; however, UK SLTs views of self-management have not been explored.
Aims: To explore UK SLTs views of “self-management” as an approach in stroke rehabilitation including its application in practice with SSWA.
Methods & Procedures: In depth, semi-structured qualitative interviews were conducted with SLTs from five NHS speech and language therapy services. Interview data were analysed using thematic analysis.
Outcomes & Results: Eighteen SLTs participated in interviews. Many SLTs were not familiar with the term “self-management”. However, SLTs were positive about the connotations of this term which aligned closely with the values they held about their role and the desired outcomes of rehabilitation. SLTs described multiple aspects of their existing practice which they associated with enabling “self-management” (e.g., self-directed practice of therapy tasks, encouraging SSWA to take responsibility for their own rehabilitation, involving family members in therapy). However, some SLTs identified difficulties involving SSWA as active participants in the rehabilitation process and in facilitating “readiness” to take responsibility for managing in the longer-term. Other barriers to enabling self-management were identified including limited session time for speech and language therapy in the community setting, difficulties involving family members in rehabilitation and a lack of access to other services to support self-management (including specialist psychological support).
Conclusions: Making the transition to longer-term adaptation, adjustment and condition management is a complex and challenging task which is likely to require tailored support for many SSWA and their families. Supported self-management may help to facilitate this process; however, SLTs require a structured and clearly defined approach and training to assist implementation in practice. Organisational “buy-in” and support for self-management as a therapeutic approach within speech and language rehabilitation will also be required for successful implementation.
Purpose: Influential value-driven approaches to aphasia rehabilitation have been proposed previously, but have emphasised how service providers need to deliver their services. The aim of this article is to extract a set of values or habits that define effective aphasia therapists, from a 16-year programme of research that has sought to capture the perspectives of people with aphasia, their family and speech-language pathologists.
Method: The findings of 58 studies published by members of our team which have sought the views of people with aphasia (38 studies), speech-language pathologists (11 studies) and family members (5 studies), and those which compared all stakeholder’s perspectives (2 studies), were synthesised into seven themes. Presented as habits, these were subsequently described in the same manner as the popular “Seven Habits of Highly Effective People”.
Result: The seven habits of highly effective aphasia therapists described by people with aphasia and their family were (1) Prioritise relationships; (2) Find a rope team; (3) Begin with the end in mind; (4) Practise SMARTER therapy; (5) Leave no person behind; (6) Look behind the mask and (7) Find a voice.
Conclusion: While there are similarities to other value-based approaches to aphasia rehabilitation, these seven habits are detailed using our published research that has privileged the voices of people with aphasia. The seven habits therefore reflect what people with aphasia view as the features of highly effective aphasia therapists. The next steps are to identify how to evaluate evidence-based practices in these areas and ensure their implementation into practice. Effective aphasia therapists are at the heart of effective aphasia rehabilitation.
Resumen
Introducción
Actualmente no se usa ninguna prueba estandarizada que proporcione la cuantificación de la comunicación funcional del paciente con afasia castellanohablante. El estudio tiene como principales objetivos la traducción y adaptación al contexto español y el análisis de fiabilidad del instrumento de evaluación llamado Communication Activities of Daily Living (CADL-3).
Métodos
Se llevó a cabo con una muestra de 107 pacientes con afasia. La media de edad fue 60.68 (DE=15.104). A todos ellos se les administró individualmente la prueba CADL-3 versión española. Este incluyó fases de traducción, adaptación y fiabilidad.
Resultados
La versión final de la prueba CADL-3 versión española incluye 50 ítems con calificaciones positivas en la revisión de expertos. Se obtuvo una alta fiabilidad con una alfa de Cronbach de .949 y un coeficiente de fiabilidad test-retest .903 (p<.001).
Conclusión
La prueba CADL-3 versión española facilita la evaluación de la capacidad del paciente para comunicarse funcionalmente, con la finalidad de desarrollar programas de rehabilitación que respondan de forma más específica a las necesidades del paciente.
Background: The literature on communication partner training (CPT) includes mainly studies with a small number of participants, because methods to measure changes in conversation pose practical challenges limiting the analysis of large samples.
Aim: The aim of this study was to explore a quantitative procedure that would allow one to measure specific behavioral changes occurring in conversational exchanges involving a person with aphasia and a partner.
Methods & Procedures: Forty-three problem-solving situations presented visually as well as with a simple written explanation were created to elicit conversation. In order to test the situations and develop further a procedure, we used data from a spouse of a man with aphasia during CPT delivered in a clinical setting. We developed specific definitions related to conversational behaviors targeted in the CPT. These defined behaviors were analyzed using a transcription-less method and an annotation software in the couple’s 39 conversation samples collected before, throughout, and 3-months post CPT. Reliability data were collected.
Outcomes & Results: The procedure enabled us to create a protocol with two types of conversational situations and reliable definitions for measurement of conversational behaviors in a timely fashion. Pilot data of the measures are provided.
Conclusions: It is expected that the method presented in this pilot study may be used to document the outcomes of CPT. It could be used with single-subject designs that require repeated measures and multiple group designs that require comparable data over large samples. It provides a method of data collection and analysis to better evaluate the effects of conversation-based treatments such as CPT.
Objective:
To determine factors that contribute to living well with aphasia in the first 12 months post stroke.
Design:
Prospective longitudinal cohort study SETTING: Hospitalized care, ambulatory care and general community PARTICIPANTS: A referred sample of 58 people with a first incidence of aphasia after stroke was assessed at 3, 6, 9 and 12 months post onset. Participants were recruited through speech- language pathologists in two capital cities of Australia. Presence of aphasia was determined through the Western Aphasia Battery Revised (WAB-R)(6) by an experienced speech-language pathologist.
Interventions:
N/A MAIN OUTCOME MEASURES: The main outcomes were the five domains of the Assessment for Living with Aphasia at 3, 6, 9 and 12 months post stroke. The independent variables included demographics, physical functioning, social network, mood, aphasia severity and a self-rating of successfully living with aphasia at the same time points. Mixed effects modelling was used to determine which factors contributed to the trajectory of each of the five domains of Participation, Impairment, Environment, Personal Factors, Life with Aphasia.
Results:
Higher household income, larger social network size, being female and having a milder aphasia were positively associated with the Participation domain. Graduate or postgraduate educational levels, low mood and poor physical functioning were negatively associated with the Participation domain. Factors positively associated with other domains included higher income, self-ratings of successfully living with aphasia and aphasia severity. Low mood was consistently negatively associated with all domains.
Conclusion:
Psychosocial determinants were the most significant predictors of living well with aphasia in the first 12 months post onset. Aphasia rehabilitation needs to attend more to these factors to optimise outcomes.
This chapter addresses the effects of stroke and anoxic brain injury on the tier 1 caregiver and tier supports. First, the neuropathology of various types of strokes and anoxia is reviewed. Family scenarios are employed to address common sequelae of strokes and/or anoxia, specifically, aphasia; cognitive (especially attention, memory, and executive functions) and behavioral deficits as well as vision and motor changes (e.g., hemianopia, visuoperceptual, visuospatial, constructional skills, visual neglect, hemiplegia/hemiparesis, and other movement disorders). A series of psychotherapeutic “helpful hints” are presented for each realm for the caregiver and family to better comprehend and cope with their loved one’s stroke or anoxic symptoms and recovery. An emphasis is placed on new assistive technology that can be incorporated in therapy and at home to compensate for language, cognitive, vision, and motor impairments. This chapter also describes common areas of caregiver angst and disillusionment after stroke or anoxia with a variety of proposed psychoeducational and therapeutic tools to promote adaptation. Some of the unique challenges and useful strategies for spouses are also addressed within this chapter. Finally, an integrative case study is presented, illustrating core concepts and techniques.
Purpose:
To explore the perceptions of audiologists' about the role of family members in hearing rehabilitation for older adults with hearing impairment (HI), the influence of family member involvement on outcomes, and factors affecting their involvement.
Method:
A qualitative descriptive research study was undertaken. Using a purposeful sampling strategy, nine audiologists were recruited. Audiologists participated in individual semi-structured interviews. Interview transcripts were analysed using thematic analysis and a process of member checking was used to enhance the trustworthiness of findings reported.
Results:
The importance of "promoting partnership" emerged as the overarching theme. Audiologists valued promoting partnership with family members so that: a shared understanding could be established; family members could be active participants with distinct roles in hearing rehabilitation; and the rehabilitation outcomes for the person with HI could be improved. Audiologists generally reported low attendance rates of family members to appointments and identified five major factors impacting on family participation.
Conclusions:
There is growing recognition among audiologists of the importance of promoting partnership with family members during the hearing rehabilitation process. More research is needed to develop and evaluate a family-centred model of hearing health care that considers the service-level barriers identified by audiologists in the present study.
Despite widespread support for user involvement in health care, people with aphasia (PWA) report feeling ignored and disempowered in care contexts. They also rarely have the opportunity to give feedback on their experiences of care post-stroke. However, it is important for health care professionals to hear this feedback, both to understand the broader illness narrative and potentially to inform improved practice. Health care professionals who work with PWA should be trained and supported to co-construct narratives of feedback on care. In this article, I consider the knowledge, skills, and attitudes underpinning co-construction in this context and use examples from interviews with 2 PWA to illustrate narrative competence, the richness of their stories, and what lessons might be learned. The development of responsive, person-centered health care systems would be assisted by valuing such narratives and giving a voice to a group of people so familiar with health care services but also so rarely heard.
Background: Conversational coaching involves teaching communication strategies to individuals with aphasia and their spouses. Strategies are chosen by the couple and are taught and practised in the context of a conversation. Although strategy training has been explored in previous research studies, many questions regarding treatment implementation and outcomes remain unanswered. Aims: The aims of this study were to investigate the effects of conversational coaching and to determine variables for consideration in future efficacy research of this treatment technique. Methods & Procedures: Two couples participated in a single-subject experimental design across subjects. Mr and Mrs Y were 76 and 70 years old, and Mr and Mrs G were 41 and 39 years old, respectively. During baseline sessions, the individual with aphasia watched a videotaped story about a real-life event and then attempted to share the content of that story with his spouse. During treatment sessions, the same procedure was used, but the clinician intervened and coached both participants in the use of selected verbal and non-verbal strategies to improve the quality of the conversation. The primary dependent measure in the study was the number of main concepts successfully communicated during conversations. Outcome measures included pre/post treatment probes, standardised testing using the Communications Activities of Daily Living - Second Edition (CADL-2; Holland, Frattali, & Fromm, 1999) and social validation ratings. Outcome and Results: Experimental data were variable for both dyads. However, positive outcomes were obtained. First, the percentage of main concepts successfully communicated was significantly greater during post-treatment probes than during pre-treatment probes for both dyads. Second, Mr Y demonstrated significant improvement in his total CADL-2 scores following treatment. Third, individuals who judged the quality of pre- and post-treatment conversations understood more of the conversation between both couples during post-treatment probe conversations than during pre-treatment ones. Conclusions: Positive outcomes, including participants' perceptions of treatment effects, support further experimental study of this technique. Strategy selection, stimuli for conversational topics, and procedural specificity of the intervention were variables identified as necessitating further research in a controlled experiment design.
Background & Aims : Stroke and aphasia can have a profound impact on people's social activities, and family and social relationships. This study looked at patterns of social support in people with chronic aphasia following stroke. It examined the relationship between social support and quality of life, exploring which aspects of social support (social network versus perceived social support) were most associated with health-related quality of life (HRQL). Methods & Procedures : A cross-sectional interview-based survey study was conducted. A cluster-sampling framework was used to recruit participants with chronic aphasia following stroke (> 1 year) from three different sites in the south-east of England. Measures included the Stroke and Aphasia Quality of Life Scale-39 item version (SAQOL-39), the MOS Social Support Survey (SSS), and a social network questionnaire. Descriptive statistics, correlation, t -tests, and ANOVAs were used as appropriate. Outcomes & Results : The results of those able to self-report (83 out of 95 participants, 87%) are reported here. In terms of social networks, the mode of the size of network was 4. Size of network was associated with HRQL for women only. Most participants (71%) reported they had the same amount of contact with their children following the stroke, while 64% reported they saw their friends less. Those who had the same level of contact with their family as before the stroke had the highest HRQL scores; those who saw them either less or more than before the stroke had lower HRQL. In terms of perceived social support, the SSS scores were negatively skewed with a mean (SD) of 3.69 (.95), suggesting that participants felt overall well supported. Two types of support were significantly correlated with HRQL: social companionship and informational support. Clinical implications : Therapy services for people with aphasia could consider ways to enhance social companionship and informational support as this may positively impact on HRQL. Implications could include complementing and supporting existing social networks, and facilitating access to information and social participation.
Stroke research and rehabilitation has traditionally focussed on the physical impact of a stroke, with less attention given to associated psychosocial factors. This study aimed to identify psychosocial predictors of health-related quality of life (HRQoL) in chronic stroke survivors and examine differences between nondepressed and depressed participants.
Participants were recruited primarily from six major metropolitan hospital databases. A total of 135 first-ever stroke survivors aged 25-96 years who were 6 to 24 months post stroke and community-dwelling were studied longitudinally over 6 months. HRQoL and psychosocial factors (optimism, self-esteem, perceived control, depressive status, and social support) were measured at baseline, 10 weeks, and 6 months.
Psychosocial factors were significantly associated with HRQoL at every time point, accounting for 33% to 53% of the variance after controlling for demographic and clinical characteristics. At least 26% of all participants reported clinically significant depressive symptoms throughout the study. Compared to nondepressed participants, depressed participants had significantly poorer scores for HRQoL, social support, optimism, self-esteem, perceived control, and physical functioning. There were improvements in participants' physical health, social participation, depressive status, and optimism over the course of the study.
These findings highlight the important role that psychosocial factors play in chronic stroke survivors' HRQoL and have implications for stroke rehabilitation programs: rehabilitation that targets poststroke depression and psychosocial adjustment to stroke has the potential to improve HRQoL for chronic stroke survivors, independent of functional impairment.
This article reports the development and evaluation of a new intervention termed "Supported Conversation for Adults with Aphasia" (SCA). The approach is based on the idea that the inherent competence of people with aphasia can be revealed through the skill of a conversation partner. The intervention approach was developed at a community-based aphasia center where volunteers interact with individuals with chronic aphasia and their families. The experimental study was designed to test whether training improves the conversational skills of volunteers, and, if so, whether the improvements affect the communication of their conversation partners with aphasia. Twenty volunteers received SCA training, and 20 control volunteers were merely exposed to people with aphasia. Comparisons between the groups' scores on a Measure of Supported Conversation for Adults with Aphasia provide support for the efficacy of SCA. Trained volunteers scored significantly higher than untrained volunteers on ratings of acknowledging competence [F(1, 36) = 19. 1, p < .001] and revealing competence [F(1, 36) = 159.0, p < .001] of their partners with aphasia. The training also produced a positive change in ratings of social [F(1, 36) = 5.7, p < .023] and message exchange skills [F(1, 36) = 17.6, p < .001 ] of individuals with aphasia, even though these individuals did not participate in the training. Implications for the treatment of aphasia and an argument for a social model of intervention are discussed.
Understanding the client's perspective is essential for good practitioner care in rehabilitation after stroke, and nothing is more relevant than enquiring directly about our clients' quality of life to inform our management. Relatively little is known about how older people with aphasia consider the quality of their current lives, and this article seeks to explore this issue. Four women's accounts of their life quality are presented, as well as their husbands' or daughter's accounts of their lives. Their stories share some common elements. Who you love or share your life with; where you live; feeling independent and/or in control; and engaging in satisfying activities mattered to these women's life quality. The impact of aphasia varies across the cases, and the need to accept change for successful living is illustrated in all accounts.
Doing interpretative phenomenological analysis This chapter introduces one particular form of qualitative analysis, interpretative phenomenological analysis (IPA) and takes the reader through the stages of conducting studies employing IPA, with illustrations taken from the authors’ own research in health psychology. 1 The main aim is to provide the reader with detailed descriptions of the analytic process, and therefore the theoretical orienting material is kept to a minimum. Readers interested in knowing more about the theoretical underpinning and rationale of IPA are referred to Smith (1996). After a brief introduction, the bulk of the chapter is taken up with two extended examples of IPA in practice. In the first, an idiographic, case-study approach is outlined, where the analysis slowly builds from the reading of individual cases to claims for a group. This procedure is illustrated with material from a project on patients’ perceptions of chronic back pain. In the final The ...
This report documents the progress of four individuals with aphasia through a seven-week course of Conversation Partners Therapy using a conversation analysis (CA). The CA as used in this study reveals changes otherwise unavailable from more traditional testing methods. Four individuals with aphasia participated. Their treatment comprised a seven-week regimen of therapy which used a family member as a trained facilitator, with the speech-language pathologist serving as ‘coach’. Weekly conversation probes were later analysed to determine whether progress documented with formal measures was observable from conversation. In the two patients with more satisfactory progress with conventional testing, parallel changes were realised in the CA, particularly with measures of verbal output and use of conversation self-repair. In the two patients with less satisfactory progress, little change in verbal output was noted, and no change or a decrease in conversation self-repairs occurred. The analyses in this study led directly to modification of therapeutic goals and objectives for each conversational dyad. For example, when little or no change in verbal output was recorded, the conversational partner was trained to facilitate more elaborate utterances by the partner with aphasia.
A speech-language pathologist (SLP) and a social worker co-treated a couple using Solution Focused Therapy (SFT). The female member of the couple had aphasia, and sought therapy with her husband because they were having difficulty in their relationship. A single session of SFT is analysed. Finding exceptions to ‘problem behaviour’, emphasizing the positive, solution-focused reinforcement, and the changing roles of the SLP and social worker are highlighted. A ‘fully collaborative’ role was adopted by the therapists.
Background: A life-coaching and positive psychology approach to aphasia has recently been advocated by Audrey Holland, to whom this issue is dedicated. Aims: This paper reviews our recent research which informs the three basic assumptions behind a life-coaching approach to aphasia: (1) learning to live successfully with aphasia takes time; (2) aphasia is a family problem; and (3) the goal is to help people with aphasia fit it into their lives. Methods Procedures: We assimilate results from three independent qualitative data sets: (1) a project that sought the perspective of 50 people with aphasia, their families, and their treating speech-language pathologist about their goals over time; (2) a project that seeks the views of 25 people with aphasia, their family, and speech-language pathologists about what it means to live successfully with aphasia; and (3) a qualitative structured interview on quality of life with 30 people with aphasia. Outcomes Results: The three basic assumptions of the life-coaching approach to aphasia are supported and extended by the data. Participants with aphasia in our studies report how their goals change over time to reflect how they are learning to live with aphasia, but the journey is different for each person. The stories from families elucidate how aphasia is indeed a family concern and requires family involvement. Finally, not only did participants in our studies fit aphasia into their lives, but they also fitted it into a new lifestyle after their stroke. Conclusions: The assumptions behind the life-coaching approach are well supported by the narratives of people living with aphasia. Even if the life-coaching approach is not adopted wholeheartedly by the profession, the principles of positive psychology and the life goal perspective appear highly relevant to living successfully with aphasia.
This qualitative research aimed to identify and describe the needs perceived by spouses of persons with severe aphasia. The analyses revealed different categories of needs: (1) information, (2) need to acquire an effective mode of communication with the aphasic partner, (3) better interpersonal relationships, (4) need to be considered as a partner in the caring process, (5) support, (6) respite. These needs were not static but in interaction with one another. Moreover, they varied within a temporal axis and appeared at different time periods: within the acute hospitalisation phase, rehabilitation phase, and after the aphasic person returned home. Taking into consideration the needs of spouses of persons with severe aphasia requires an eco-systemic and interdisciplinary approach aiming for the social reintegration of the person with aphasia. Services should be developed in order to respond to the unique and individual experiences and needs of people affected by aphasia. Speech language pathologists play a pivotal role within this approach because communication problems are central to the consequences of severe aphasia.
Background: Comprehensive aphasia treatment includes interventions aimed at assisting family and friends in learning about and adjusting to aphasia. These interventions include education-oriented information, counselling and support, and communication skill training. While the need for family training and support is recognised, there is very little empirical evidence about the content or value of such assistance at different stages of aphasia.Aims: The primary objective of this study was to identify information needed by family members at the onset of aphasia (hospitalisation), initial rehabilitation, and chronic phases of aphasia.Methods and Procedures: A qualitative approach was used for this study. Focus groups of four to six participants were interviewed. Transcripts from the focus groups were analysed using a five-stage framework approach: familiarisation, identifying a thematic framework, indexing, charting, and mapping with interpretation. A total of 16 adult family members participated in the study.Results: Three thematic recommendations were identified across the three time periods. Based on number of times cited, family members rated information about aphasia most important, followed by psychosocial support and hopefulness. The specific type of information needed by families varied depending on the time post-onset of aphasia.Conclusions: Results from this study support research and educational materials that address the needs of family members of people with aphasia. This research provides guidelines for information from the perspective of a family member.
Background: Families living with aphasia often have unmet needs despite intervention provided in hospital and rehabilitation environments (Denman, 1998; Michallet, Le Dorze, & Tétreault, 2001). Michallet and colleagues found that families living with aphasia need information and support throughout the care continuum. If needs are unmet during the early stages of rehabilitation they persist, and as families deal with the long term sequelae of aphasia, new needs emerge in relation to communication and role changes. Few recent interventions have addressed the complex needs experienced by caregivers of people with aphasia (e.g., Hinckley & Packard, 2001; Hinckley, Packard, & Bardach, 1995; Pound, Parr, & Duchan, 2001). Aims: This research aimed to identify the critical elements and outcomes of a residential intervention for families living with aphasia. Methods & Procedures: Narrative data were collected from 19 spouses, siblings, and adult children of persons with aphasia who attended a residential intervention over 3 years. Data collected from participants during and following the intervention were triangulated with field notes recorded by 34 students trained in field observation techniques. All narrative data were transcribed, coded, and analysed using procedures described by Luborsky (1994). Outcomes & Results: Data analysis revealed four critical intervention elements: (a) an emotionally and physically safe environment; (b) respite from the demands of caregiving; (c) peer learning; and (d) participation of families with different amounts of time post aphasia onset. Outcomes from the perspective of the participants included: (a) a renewed sense of hope; (b) improved ability to access their social support resources; (c) improved ability of caregivers to monitor their well-being; (d) greater acceptance of the family's altered state; and (e) emergence of a new social support network. Analysis of thematic relationships showed a web of interconnections between all critical elements and outcomes of the intervention. A central intervention element was learning from peers with different levels of caregiving experience. Conclusions: Some aspects of caregiver learning appear to depend on interventions that are structured to maximise reflective learning from peers. Professionals may underestimate the value of such learning in intervention for caregivers of persons with aphasia.
Background: The investigation into conversational interaction in aphasia and its therapeutic implications has received much interest. It is increasingly accepted that people with aphasia cannot be treated in isolation but as part of a social unit. Training conversation partners has been shown to impact on the disabling effect of aphasia. Aims: The principal aim of this study was to evaluate a programme designed to train a relative/friend to communicate more effectively with an aphasic partner. The intervention was assessed in terms of effects on communication and on wellbeing. Methods & Procedures: Four single-case studies were completed. The aphasic participants had severe impairment affecting both comprehension and expression. The baseline was a series of three assessments. The dyads were videotaped having a conversation, and completed a Visual Assessment for Self-Esteem Scale (VASES). The non-aphasic partner also completed a Hospital Anxiety and Depression Scale (HADS). The training programme ran for 5 weeks (1.5 hours/week) at the couples' homes. It included education, video feedback, and role-play. The initial assessments were repeated post-intervention. Outcomes & Results: Conversation data were subject to a conversation analysis as well as frequency counts of nonverbal behaviours. We found positive individual changes and positive trends: three of the four dyads increased their use of gesture and the proportion of successful repair sequences increased post-intervention, although these changes were not statistically significant. There were no significant differences for the HADS but there were differences between the aphasics and the non-aphasics on the VASES. Conclusions: The positive trends suggest that working with couples can produce beneficial effects. Future research may help establish who will benefit from this approach and the optimal number of sessions.
Background : Aphasia changes the links an individual has with his/her social milieu. However, information about these changes is sparse as most research on aphasia has been centred on understanding this language disorder and testing treatment methods. Moreover, information about the psycho-social consequences of severe aphasia is even rarer. Aims : To determine the consequences of severe aphasia as experienced by spouses of persons with aphasia. Methods & Procedures : A qualitative phenomenological approach was adopted. Spouses of five persons with relatively longstanding severe aphasia were interviewed with a semi-structured qualitative schedule. The analysis was guided by the data and by a model of the adaptation process. Outcomes & Results : Spouses' perceived sources of stress related to various changes in lifestyle habits more or less explicitly related to the aphasic person's communication impairment. These consequences were experienced in the realms of communication, interpersonal relationships, responsibilities, leisure activities, and finances. Spouses employed coping strategies. These strategies were directly based on the problems they encountered or on the control of the significance of these problems. Spouses experienced various indicators of adaptation such as fatigue, anxiety, discouragement, loss of privacy, social isolation and burden. These consequences, coping strategies, and indications of adaptation were functions of the contextual stimuli of these couples. Conclusions : These results serve to describe how spouses experience lifestyle changes associated to the aphasia in their partner. Speech-language therapy could contribute to minimise the impact of aphasia on both spouses and aphasic people by considering how spouses adapt to aphasia.
Recent research findings have suggested that there is a need for an individualized approach to the development of facilitation strategies which takes into account the unique effects of aphasia. The aim of this paper is to examine the use of conversation analysis (CA) to guide individualized advice to the brother (RB) of a man with aphasia (JB) and to provide a mechanism to evaluate the effect of the interaction. RB attended a weekly communication skills training group which ran once a week for six consecutive weeks. Prior to his inclusion in the group a qualitative analysis of a conversation between him and his brother provided detailed information on collaborative repair management. An assessment of his perception of the linguistic and pragmatic manifestations of his brother s aphasia was performed using the Conversation Analysis Profile for People with Aphasia (CAPPA). The detailed insights provided by the analyses guided the issues covered during the group. Following the intervention, the assessments were repeated and a comparison was made with the pre-intervention results to investigate the outcome of the group.This paper illustrates the effective use of CA to guide an intervention programme which addresses issues specific to the person with aphasia and their key conversational partner. Furthermore, the comparison of the pre-and post-intervention analyses demonstrates the use of CA to evaluate the outcome of an intervention.
Background: The literature suggests that mild aphasia negatively affects everyday experiences, social life, and identity. However, while mild word‐finding problems and difficulty understanding abstract or grammatically complex language are typical clinical characteristics, their impact on everyday discourse and conversation partners remains relatively unexplored. Similarly, treatment studies addressing conversational difficulties have predominantly included those with moderate to severe aphasia, rather than those at the mild end of the severity scale.Aims: The current study examines conversational difficulties in mild aphasia and their accessibility to a conversational treatment procedure.Methods & Procedures: A woman with mild aphasia and her husband participated in the study. They underwent 14 sessions of conversational therapy, based on the procedures of Boles (1998) and Boles and Lewis (2003). Outcome measures included subjective ratings by the couple regarding conversational parameters they deemed important, ratings of their interactions by independent judges on the Measure of skill in Supported Conversation (MSC) and the Measure of Participation in Conversation (MPC) (Kagan et al., 2004), independent judgments of whether interactions were pre or post‐treatment, as well as a series of behavioural measures related to specific goals collaboratively set by the couple and the clinician.Outcomes & Results: Improvements were noted in both the participants’ ratings and the independent judges’ ratings. While some changes were noted on behavioural measures, clear patterns were not always evident.Conclusions: The study suggests that conversational treatment may be beneficial to couples dealing with mild aphasia as well as those at the more severe end of the continuum as reported previously. However, measures of the effects of treatment need to be further explored in terms of sensitivity to conversational changes in mild aphasia.
Aphasic patients and their relatives meet difficulties in various domains. They are confronted with communication problems. Together with the patient the family has to deal with the fact that the relative is dependent on their help as well as socially di erent. The goal of the research was to establish handicaps most commonly occurring in the life of aphasic patients and their relatives in a sample attending a speech therapy clinic in Slovenia. The authors were interested in their wishes and expectations. Twenty aphasic patients and 20 of their relatives were interviewed. It has been found that the everyday life of aphasic patients and their relatives is encumbered with a large number of difficulties. The patients are much more troubled by their communication problems than are the family. The latter are more concerned with the problems accompanying aphasia. In expressing wishes, both the patient and the relatives give priority to the hope that the patient will recover the capacity to speak.
Although the psychosocial problems faced by people with aphasia and their families are widely acknowledged, relatively little research has tried to evaluate attempts to assist them. Recently attention has focused on the feasibility of offering therapy to aphasics and their families. In this study we describe therapy given jointly by a family therapist and a speech and language therapist. We also explore the suitability of the Personal Questionnaire Rapid Scaling Technique (PQRST, Mulhall 1978) as a means of monitoring change during the therapy. The results of therapy for two families are described. Positive changes were found, though these were stronger for aphasics than their family members, and were more marked in the period following therapy than during the therapy itself.
Analyzed interview data from 9 recovered aphasic Ss (aged 41–69 yrs) and 9 relatives or friends (aged 20–70 yrs) to describe consequences of aphasia as experienced by these Ss. The aphasic Ss' language disabilities were the major cause of handicaps in that they negatively influenced communication, altered relationships, provoked a loss of autonomy, restricted activities, and triggered stigmatization. Relatives and friends also experienced handicaps in terms of communication, interpersonal relationships, work, and leisure activities. Ss reported using various types of coping strategies to deal with disabilities and handicaps. Most of the coping behavior adopted by Ss and their relatives and friends was associated with maintaining communication and relationships, although some behavior served to stifle communication. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
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This chapter describes interpretative phenomenological analysis (IPA), which involves self-report data elicitation through interview associated with a sophisticated thematic analysis. The approach is idiographic and invariably linked to non-experimental research designs. The IPA training exercise presented provides details of how to construct an appropriate interview schedule and the steps in recording and then reporting data. The chapter is appropriate for intermediate level courses. © 2004 The British Psychological Society and Blackwell Publishing Ltd.
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.
Background: While the negative impact of aphasia has been the focus of much research, few studies have investigated more positive examples of people living with aphasia. Exploring the concept of living successfully with aphasia from an insider perspective can enhance current research by providing positively framed data that balance this negative skew. Collectively, the perspectives of people with aphasia on themes of importance for living successfully with aphasia may inform clinical interventions and other community-based services, enabling positive adaptive factors and processes identified in the research to be promoted and ultimately improving the quality of life for people with aphasia. Aims: The aim of this study was to explore, from the perspectives of people with aphasia, the meaning of living successfully with aphasia. Methods & Procedures: Semi-structured in-depth interviews were conducted with 25 participants with aphasia. All participants had aphasia as a result of stroke, lived in the community, and were at least 2 years post-stroke. As an adjunct to the interview process participants were asked to take photographs of what living successfully with aphasia meant to them. These photographs formed the basis of discussion for a second interview. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis (Smith, Jarman, & Osborn, 199971.
Smith , J. A. ,
Jarman , M. and
Osborn , M. 1999. “Doing interpretative phenomenological analysis”. In Qualitative health psychology, Edited by:
Murray , M. and
Chamberlain , K. 218–240. London: Sage Publications. [CrossRef]View all references). Outcomes & Results: Analysis of participant transcripts revealed that the concept of living successfully with aphasia is complex, and highly individualised. Four core themes related to living successfully with aphasia emerged from the data: doing things; meaningful relationships; striving for a positive way of life; and communication. Conclusions: Research focusing on living successfully with aphasia challenges researchers and clinicians to focus on positive adaptive processes and factors. Further research is indicated to develop the concept of living successfully with aphasia further and explore how best to work in partnership with individuals with aphasia to ensure their priorities for living with aphasia are addressed.
Little is known about how spouses cope with their needs as a result of their partner's aphasia. This study described spouses' needs and identified the barriers and facilitators to satisfying them.
Four associations of people with aphasia were approached. Eleven spouses were interviewed in small groups. They described the results of their inquiries and efforts to satisfy their needs because their partner had aphasia (mean time since onset 6 years 8 months) as a result of stroke or surgery. Discussions were transcribed and coded. Excerpts were grouped into categories.
Spouses mainly needed support and respite, and perceived their partner to need help for communication and well-being. Personal factors like the availability of close others to provide help were facilitating. However, participants encountered barriers, mainly organisational, i.e. the help needed did not exist. Some needs persisted over time.
Results confirm the long-term needs of spouses in adjusting to the aphasia of their partner, as well as the limited services available to them. Many of the needs reflected spouses' concerns about their partner, while others were a consequence of their caregiving role as well as the unavailability of support. Spouses of people with aphasia should have access to support during and after rehabilitation.
The impact of various types and amounts of social support is examined in the context of recovery from first stroke. We conceptualize the rehabilitation process as a psychosocial transition. In a longitudinal design, 44 patients were followed for 6 months following first stroke. Growth-curve analysis (repeated measures MANOVA) was utilized to examine the impact of three types of social support on changes in functional status during recovery. While all three types of support (emotional, instrumental and informational) were shown to be significantly related to recovery of functional capacity, substantial differences were found in the nature of those effects. The impact of social support does not appear during the first month of rehabilitation, indicating the importance of longitudinal designs and longer observation. Patients reporting high level of emotional support showed dramatic improvement despite having the lowest baseline functional status. Instrumental support is most closely related to positive outcomes when provided in moderate amounts. Unlike the other two types, the effect of informational support is mediated by disease severity.
This investigation retrospectively examined changes in marital satisfaction following stroke. The relationship between such changes and other pertinent factors were also examined, including severity of aphasia, knowledge of aphasia, number of months after stroke, and length of the marriage. The subjects were 40 spouses of patients with aphasia grouped according to severity of the aphasia (mild, moderate, severe). Spouses completed two different measures of marital satisfaction--the Marital Satisfaction Scale (MSS) and the Marital Comparison Level Index (MCLI). These measures were completed in both a prestroke (retrospective reporting) and a poststroke format to allow for change to be assessed. In addition, a Knowledge of Aphasia questionnaire was completed by the normal spouses to evaluate their understanding of the disorder of aphasia. There was a significant difference between prestroke and poststroke scores on both the MSS and the MCLI, indicating a lower level of satisfaction following the stroke. The amount of change between prestroke and poststroke MSS and MCLI scores was not related to either number of months poststroke or number of years married. Although there was no relationship between changes in prestroke and poststroke scores on the MCLI and Knowledge of Aphasia scores, there was a significant correlation between changes in these scores on the MSS and Knowledge of Aphasia scores. Hence, the more knowledge spouses had regarding aphasia, the less the negative impact the stroke had on marital satisfaction, as measured by the MSS. Results are discussed in terms of the interdisciplinary treatment needs of aphasic patients and the implications for future investigations.
The aim of this paper is to show the way in which the decision trail of a qualitative research process can be maintained. It is argued that the trustworthiness (rigour) of a study may be established if the reader is able to audit the events, influences and actions of the researcher. The actual study containing the recording of this decision trail aimed to express the concerns of older patients who were admitted to the acute care sector. The study took place in two care of the elderly wards in a 1000-bed National Health Service hospital in the UK, in 1991. Eventually, 14 patients were interviewed, each on several occasions, and their concerns are expressed in themes, namely: routine geriatric style of care, depersonalization, care deprivation and geriatric segregation. I describe the preparations that were undertaken before patient interviews could commence. The literature recording the process of the interviewer's experience as data in qualitative research is scarce. I show the researcher's participation in making the data as part of an existential phenomenological research process. Existential phenomenology relies on recording influences while generating data such as significant literature, media reports, my value position and journal data.
The study aims to identify the needs of spouses caring for someone who has communication difficulties due to a stroke and to determine what solutions they felt would have helped to alleviate the difficulties they described.
A qualitative approach was chosen in order to determine the carers needs from their point of view. Nine indepth interviews were undertaken with a self selected group of spouses caring for an aphasic partner in their own home.
Analysis of the interviews indicated that the carers expressed needs in the five main areas of support, information, role change, training and day/respite care. The carers interviewed were also able to identify a variety of practical solutions which, in retrospect, may have helped them to care more effectively for their aphasic partner.
The solutions put forward by the carers highlight the areas in which the Health Trusts providing care for these people should focus future service provision in order to ensure that people caring for aphasic spouses in the home receive the services they feel they need.
To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties.
A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness.
The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures.
No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.
Adverse consequences are known to occur in family members responsible for providing care to stroke survivors. However, the differential effect of aphasic versus nonaphasic stroke on caregivers has not been well studied. This study compares selected outcomes (e.g., perceived task difficulty, depressive symptoms, and other negative stroke-related outcomes) among caregivers of aphasic (n = 46) and nonaphasic (n = 113) stroke survivors. Results indicated that caregivers of aphasic survivors perceived greater difficulty with tasks and had more negative stroke-related outcomes than caregivers of nonaphasic survivors. Communication with the survivor was rated as most upsetting and difficult by caregivers in the aphasic group, followed by managing behaviors. Lack of time for family and friends was evident. Female caregivers and caregivers of survivors with self-care deficits also perceived greater difficulty with tasks and negative outcomes. Comprehensive assessment of the unique needs of caregivers of aphasic survivors is suggested for more individualized nursing interventions.
This article describes three individuals who live full and satisfying lives despite aphasia following stroke. The three were deliberately chosen to reflect different types and severities of aphasia and lengths of time post onset, as well as different prestroke lifestyles and circumstances. Commonalities as well as unique features of their successful adjustments are discussed. The article then compares them in a general way to a larger sample of individuals who live well with aphasia and contrasts them to another larger sample of individuals who have been less able to establish fulfilling lives following stroke and aphasia. Implications for counseling aphasic individuals and their families are discussed.