To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking. A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized by family members relating to the person with aphasia, primarily linked to body functions (60%). People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of body function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Implications for Rehabilitation Important outcomes for people with aphasia and their families span all components of the ICF. The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia. The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF. The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families.

Purpose. It is important for professionals working with individuals with acquired neurogenic communication disorders to consider their clients' psychological well-being. Much is known about the significant emotional, social and psychological consequences of aphasia after stroke; however, little is known about the individuals' psychological well-being. This article reports the psychological well-being of community-dwelling older adults with chronic aphasia in the context of their unaffected peers. Method. Thirty participants who were affected by aphasia and 75 unaffected participants completed the 24-item measure ‘How I feel about myself’ (drawn originally from Ryff C. Happiness is everything, or is it? Explorations on the meaning of well-being. J Pers Soc Psychol 1989;57:1069–1081) and the ‘Geriatric Depression Scale’ (GDS) (Sheik J, Yesavage J. Geriatric Depression Scale (GDS): recent evidence and development of a shorter version. Clin Gerontol 1986;5:165–172). Results. Individuals with aphasia after stroke had a statistically similar range and average psychological well-being as the unaffected population, with the exception of lower environmental mastery (independence) and lower mood. There was a range of well-being, suggesting that a number of individuals (affected and unaffected) had low positive psychological well-being. Many individuals with aphasia also reported restricted physical functioning. Conclusions. Many persons with chronic aphasia need support to manage the demands and responsibilities of their everyday lives and raise their mood. Clinicians need to be aware of this possibility and formally assess all persons with aphasia, as well as explore the potential impact of physical limitations. Identifying low well-being in older adults is important for all professionals working with the ageing population. The implications for speech and language therapy and for multi-disciplinary research and cross-sector joint working (health, social and community services) are discussed.

Background: Developing the knowledge base on the impact of aphasia on people's social lives has become increasingly important in recent times to further our understanding of the broad consequences of communication disability and thus provide appropriate services. Past research clearly indicates that relationships and social activities with family members and others undergo change with the onset of aphasia in an individual, however more evidence of a quantitative nature would be beneficial. Aims: The current research furthers our knowledge by quantifying chronically aphasic older people's regular social contacts and social activities, and places them in context by comparing them with healthy older people of similar age and education. Methods & Procedures: A total of 30 aphasic participants aged 57 to 88 years, and 71 non‐aphasic controls aged 62 to 98 years were interviewed by a speech and language therapist using self‐report measures of Social Network Analysis (Antonucci & Akiyama, 1987 Antonucci, T. C. and Akiyama, H. 1987. Social networks in adult life and a preliminary examination of the convoy model.. Journal of Gerontology, 42(5): 519–527. [Google Scholar] ) and Social Activities Checklist (Cruice, 2001 Cruice, M. 2001. Communication and quality of life in older people with aphasia and healthy older people Unpublished doctoral dissertation completed within Department of Speech Pathology and Audiology, University of Queensland, Australia [Google Scholar] , in Worrall & Hickson, 2003 Worrall, L and Hickson, L , eds. 2003. Communication disability in ageing, San Diego, CA: Delmar Press. [Google Scholar] ). Demographic information was also collected. Descriptive statistics are presented and independent samples t tests were used to examine differences between the groups. Outcomes & Results: Participants with primarily mild to moderate aphasic impairment reported a considerable range of social contacts (5–51) and social activities (8–18). Many significant differences were evident between the two groups' social contacts and activities. On average, aphasic participants had nine fewer social contacts (mainly “friend” relationships) and three fewer social activities (mainly “leisure” activities) than their non‐aphasic peers. The majority of controls were satisfied with their social activities, whereas the majority of aphasic participants were not and wanted to be doing more. There were some general similarities between the groups, in terms of range of social contacts, overall pattern of social relationships, and core social activities. Conclusions: Older people with chronic aphasia had significantly fewer social contacts and social activities than their peers. People with aphasia expressed a desire to increase the social activity of their lives. Given the importance of leisure activity and relationships with friends as well as family for positive well‐being, speech and language therapists may direct their rehabilitation efforts towards two areas: (1) conversational partner programmes training friends to maintain these relationships; and (2) encouraging and supporting aphasic clients in leisure activities of their choice.

Background : Definitions reflect the current state of knowledge about a health condition. An agreed definition of aphasia is central to the progression of the science and clinical practice relevant to aphasia. Aim : To establish consensus on a definition of aphasia. Methods & Procedures : A three-round modified e-Delphi study was conducted with aphasia researchers who were members of the Collaboration of Aphasia Trialists (CATs). In round one, participants were provided with a draft definition developed by the Societal Impact and Reintegration Working Group of CATs. Participants were asked whether they agreed with the definition and were asked to comment on any aspects that they perceived to require amendment. Comments were collated and analysed using inductive content analysis. In round two, participants were presented with the collated and de-identified results of the first round and the participants were asked to vote “yes/no” on two contentious aspects of the definition. In round three, agreement on the revised definition was again sought using closed “yes/no” voting. Consensus was defined a priori as at least 70% agreement by 80% of all CATs members. CATs membership fluctuated across the study period and ranged between 131 and 141 members. Outcomes & Results : The proposed definition was Aphasia is a communication disability due to an acquired impairment of language modalities caused by focal brain damage. Aphasia may affect participation and quality of life of the person with aphasia as well as their family and friends. Aphasia masks competence and affects functioning across relationships, life roles and activities, thereby influencing social inclusion, social connectedness, access to information and services, equal rights, and wellbeing in family, community and culture. Two main categories of proposed amendments to the definition were identified: (1) definition of aphasia as a communication disability versus a language impairment; and (2) definition of aphasia as being the result of a focal and/or diffuse lesion. After three rounds of surveys, consensus was unable to be achieved with an almost even split across participants on both amendment issues. Conclusion : Further debate about the use of the term communication disability to describe aphasia and whether aphasia is a result of focal or diffuse lesions is required before consensus is again attempted.

Background: There is an increasing need in speech and language therapy for clinicians to provide intervention in the context of the broader life‐quality issues for people with aphasia. However, there is no descriptive research that is explicitly focused on quality of life (QoL) from the perspectives of older people with aphasia. Aims: The current study explores how older people with chronic aphasia who are living in the community describe their QoL in terms of what contributes to and detracts from the quality in their current and future lives. The study is descriptive in nature, and the purpose is to conceptualise the factors that influence QoL. Methods & Procedures: A total of 30 older participants (16 women, 14 men) with mild to moderate aphasic impairment took part. All participants had adequate communication skills to participate, demonstrating reliable yes/no response and moderate auditory comprehension ability. Participants were interviewed in their own homes using six brief, unprompted, open questions about QoL, in a structured interview. The first five questions were drawn from previous gerontological research (Farquhar, 1995 Farquhar, M. 1995. Elderly people's definitions of quality of life.. Social Science & Medicine, 41(10): 1439–1446. [Crossref], [PubMed], [Web of Science ®] [Google Scholar] ), and a sixth question specifically targeting communication was added. Content analysis was used, identifying discrete units of data and then coding these into concepts and factors. Additional demographic information was collected, and participants' mood on day of interviewing was assessed using the Geriatric Depression Scale (Sheikh & Yesavage, 1986 Sheik, J. and Yesavage, J. 1986. Geriatric Depression Scale (GDS): Recent evidence and development of a shorter version.. Clinical Gerontology, 5: 165–172. [Crossref] [Google Scholar] ). Outcomes & Results: Activities, verbal communication, people, and body functioning were the core factors in QoL for these participants, and they described how these factors both contributed quality in life and detracted from life quality. Other factors that influenced QoL included stroke, mobility, positive personal outlook, in/dependence, home, and health. While the findings are limited by the lack of probing of participants' responses, the study does present preliminary evidence for what is important in QoL to older people with aphasia. Conclusions: Quality of life for older people with predominantly mild to moderate chronic aphasia who are living in the community is multifactorial in nature. Some factors lie within the remit of speech and language therapy, some lie beyond the professional role, but all are relevant for consideration in rehabilitation and community practice. Further qualitative research is implicated to better understand QoL with aphasia, using in‐depth interviewing with a broader range of people with aphasia.

Background: There are many validated and widely used assessments within aphasiology. Few, however, describe language and life with aphasia from the perspective of the person with aphasia. Across healthcare, patient experience and user involvement are increasingly acknowledged as fundamental to person-centred care. As part of this movement, Patient Reported Outcome Measures (PROMs) are being used in service evaluation and planning. Aims: This paper reports the quantitative aspects of a mixed methods study that developed and validated a concise PROM, the Aphasia Impact Questionnaire (AIQ), co-produced with People with Aphasia (PWA). Methods & Procedures: The AIQ was developed within the social model of disability and all stages of the development of the AIQ were performed in partnership with PWA. It was adapted from a pre-existing and lengthier PROM for PWA, the Communication Disability Profile. The first iterations of the AIQ focused on domains of communication, participation and well-being/emotional state. Subsequently the AIQ was extended to include additional items relating to reading and writing (AIQ-21). The research design was iterative. Initially, concurrent validity, internal consistency, and sensitivity of the AIQ-prototype were obtained. The AIQ-prototype was modified to become the AIQ-21. Statistical testing with a new group of PWA was performed, investigating internal consistency and concurrent validity of the AIQ-21. Outcomes & Results: Results for both the AIQ-prototype and AIQ-21 showed statistically significant concurrent validity and good internal consistency. Repeated measurement using the AIQ-prototype demonstrated statistically significant change after PWA accessed a community intervention. Conclusions: The AIQ-21 is a PROM that has great potential to be one of the core set of aphasia tests for clinical and research use. Results can be used alongside language assessment to enable person-centred goal setting and partnership working for people with aphasia.