Kyla Brown

Living successfully with aphasia: A qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists

The concept of living successfully with aphasia has recently emerged as an alternative to more traditional “deficit” models in aphasiology, encouraging a focus on positive rather than negative outcomes. This research aimed to integrate findings from studies exploring the perspectives of three participant groups (individuals with aphasia, speech-language pathologists, and family members) about living successfully with aphasia. Qualitative meta-analysis of three studies conducted by the authors was used to integrate perspectives across the participant groups. Steps in the qualitative meta-analysis were based on those described in the process of “meta-ethnography” by 47. Analysis was an inductive process, in which data from each study were re-analysed and translated into each other in order to identify higher-level overarching themes that accounted for similarities and discrepancies across the original studies. A total of seven overarching themes related to living successfully with aphasia were identified. These were: participation, meaningful relationships, support, communication, positivity, independence and autonomy, and living successfully with aphasia as a journey over time. Findings indicate the need for a holistic, client-centred approach that considers communication in the broader context of an individuals daily life. The overarching themes may act as guides for areas of importance to be addressed in clinical practice, as well as in future research. By working in partnership with individuals with aphasia and their families, speech-language pathologists are challenged to continue to improve services and assist clients on their journey of living successfully with aphasia.

Snapshots of success: An insider perspective on living successfully with aphasia

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, 1999). 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.

Living Successfully with Aphasia: Family Members Share Their Views

Abstract 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.

The evidence for a life-coaching approach to aphasia

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.

Aphasia LIFT: Exploratory investigation of an intensive comprehensive aphasia programme

Background: Intensive comprehensive aphasia programs (ICAPs) are gaining popularity in the international aphasia rehabilitation community. ICAPs comprise at least three hours of treatment per day over at least two weeks, have definable start and end dates for one cohort and use a variety of formats including individual treatment, group therapy, education and technology to improve language and communication. While intensive treatment approaches have demonstrated equivocal results on impairment-based measures, positive changes on activity/participation measures provide support for ICAPs in rehabilitation of chronic aphasia. Aphasia Language Impairment and Functional Therapy (LIFT) is a research-based ICAP developed for the purpose of evaluating treatment outcomes across the International Classification of Functioning, Disability and Health (ICF) domains. Aims: The aim of this study was to estimate the magnitude of treatment effects yielded by Aphasia Aphasia LIFT in the domains of language impairment, functional communication and communication-related quality of life (QOL). Methods & Procedures: Eleven individuals with chronic post-stroke aphasia (mean = 26.9 months) completed Aphasia LIFT. The programme comprised individual impairment-based and functional treatment, group therapy, and computer-based treatment for 40 hours over two weeks (n = 4, LIFT 1) or 100 hours over four weeks (n = 7, LIFT 2). Assessments of confrontation naming, discourse production, functional communication and communication-related quality of life were completed at pre-treatment, immediately post-treatment and six to eight weeks following treatment termination. Outcomes & Results: Group-level analyses revealed acquisition and maintenance of treatment effects, as evidenced by significant improvement on at least one outcome measure at follow-up in all domains. The most consistent pattern of improvement at an individual level was observed on measures of functional communication and communication-related QOL. Conclusions: Aphasia LIFT yielded positive outcomes across ICF domains, and in many cases the treatment effect was enduring. These results demonstrate that Aphasia LIFT was successful in meeting the overarching goal of ICAPs, to maximise communication and enhance life participation in individuals with aphasia. Further research into ICAPs is warranted.

Environmental factors that influence the community participation of adults with aphasia: The perspective of service industry workers

Background: The loss of language and the inability to communicate effectively as a result of aphasia often affects community participation. Within the World Health Organisation International Classification of Functioning, Disability and Health, disability is recognised as a dynamic interaction between the individuals health condition, such as aphasia, and his or her personal and environmental factors. There has been little research identifying the environmental facilitators and barriers to participation for people with aphasia in the community, and no research focusing on the perspective of service industry workers. Aims: This study aimed to identify barriers and facilitators to community participation for adults with aphasia from the perspective of service industry workers. Methods & Procedures: Eight focus groups were conducted with 24 service industry employees. Transcripts of the focus group discussions were analysed using qualitative content analysis procedures, and barriers to and facilitators for participation of people with aphasia were identified. Outcomes & Results: Results revealed that the participation of people with aphasia in the community can be affected by many environmental factors within three broad categories: (1) people environmental factors, (2) physical environmental factors, and (3) business or organisational environmental factors. Conclusions: Service industry employees were able to identify a range of factors that would act as barriers and facilitators for people with aphasia. Some of the more significant findings include the lack of other peoples awareness about aphasia, the willingness of service industry workers at the individual level to accommodate people with aphasia, and the difficulty in making the necessary system, policy, and procedural changes at the organisational level. Speech pathologists are encouraged to assist service industry providers to be more aphasia‐friendly through education and training, in addition to assisting people with aphasia to become self‐advocates.

“Making a good time”: The role of friendship in living successfully with aphasia

Abstract Loss of friendship post-onset of aphasia is well documented, with reduced social network size and social isolation commonly reported. Because friendship has strong links to psychological well-being and health, increased knowledge about friendships of individuals with aphasia will have important clinical implications. This study aimed to explore the perspectives of 25 community dwelling individuals with chronic aphasia on the role of friendship in living successfully with aphasia. Thematic analysis of transcripts from semi-structured in-depth interviews revealed three over-arching themes relating to the role of friendship in participants’ experience of life with aphasia: living with changes in friendships, good times together and support from friends, and the importance of stroke and aphasia friends. Overall, findings highlighted the valued role of friendship in living successfully with aphasia, while also providing evidence of how friendships change and evolve in both negative and positive ways following onset of aphasia. Clinicians are challenged to work creatively to address the role of friendship in life post-stroke in partnership with individuals with aphasia, their families, and friends.

The first 3-months post-stroke: What facilitates successfully living with aphasia?

Abstract This study used a qualitative approach to describe the experience of the first 3 months post-stroke in order to identify factors which facilitate successfully living with aphasia. Fifteen participants completed semi-structured interviews and self-perceived ratings of how successfully he or she was living with aphasia. A number of themes were identified from the interviews, including: a need to do things in order to be actively engaged in rehabilitation; increase independence and have a purpose in life; the importance of social support; the value of rehabilitation; a need to adapt and make adjustments; and having a positive outlook. These results suggest that a range of service delivery models need to be considered during the early stages post-stroke in order to address individual needs and so that long-term outcomes of people with aphasia may be improved.

What makes a successful peer-led aphasia support group?

Background: People with aphasia frequently report reduced social networks as well as a desire for increased social interaction. Individuals with aphasia and speech-language pathologists have identified peer support as an important component of adjusting to post-stroke changes and learning to live successfully with aphasia. Peer-led aphasia support groups can provide greater, long-term access to peer support and social communication opportunities for people with aphasia and their families. However, more research is needed to facilitate their development and sustainability in local communities. Aims: The primary aim of this study was to identify the core components of a successful peer-led aphasia support group from the perspective of people with aphasia and their family members. A second aim of the study was to explore the information and support needs of peer leaders in starting and running a group. Methods & Procedures: The qualitative research approach of focused ethnography was used to understand and interpret the functioning of peer-led aphasia support groups in the community. Twenty-six people, who were attending a peer-led aphasia support group, participated in the study. Participants comprised 19 people with aphasia (mean age 64.8 ± 12.9) and seven family members (mean age 58.3 ± 9.0), including three peer leaders. Data were collected from the following sources: participant observation; focus group discussion; individual interview; and written artefacts. Thematic analysis of the focus group and interview transcripts was conducted, while field notes and written artefacts were used in triangulation of the identified themes. Outcomes & Results: The findings indicate that a number of themes are important for the successful functioning of a peer-led aphasia support group, including friendship, informality, a supportive communication environment, providing support and practical considerations for the timing and location of meetings. Factors that facilitated peer leaders to start and run groups included informational support, practical support, attracting new members, time and organisation, and particular personal qualities. Conclusions: The findings confirm the positive and empowering nature of peer-led aphasia support groups that provide opportunities for developing genuine friendships and authentic communicative interactions in a supportive environment. Results of the study provide useful guidelines to assist people with aphasia in developing and sustaining peer-led aphasia support groups in the community.

The World Report on Disability as a blueprint for international, national, and local aphasia services.

Abstract This commentary aims to extend the debate of the lead article authors (60) by translating the nine recommendations of the World Report on Disability into a plan of action for the aphasia community. Solutions for the advancement of aphasia science and services are presented at international (macro), national (meso), and local (micro) levels. Implications for speech-language pathologists and aphasia service delivery are discussed. An overarching call to action is the need for speech-language pathologists to support a strong and vibrant aphasia community at all levels, so that the voices of people with aphasia can be heard.