Deborah Hersh

What people with aphasia want: Their goals according to the ICF

Background: The goals of people with aphasia should guide service delivery. Services are increasingly influenced by the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001), but little is yet known about whether the goals of people with aphasia span the full spectrum of the ICF. Aims: The purpose of this study was to describe the goals of people with aphasia and to code the goals according to the ICF. Methods & Procedures: A qualitative descriptive research approach was used involving semi-structured in-depth interviews with 50 participants with aphasia post-stroke. Interviews were videotaped and transcribed verbatim and then analysed using qualitative content analysis. The goals of a 30% consecutive subsample were then coded using the ICF. Outcomes & Results: Nine broad categories of goals were identified. Participants with aphasia wanted to return to their pre-stroke life and to communicate not only their basic needs but also their opinions. They also wanted information about aphasia, stroke, and available services; more speech therapy; greater autonomy; and dignity and respect. They identified the importance of engagement in social, leisure, and work activities as well as regaining their physical health. Interestingly, their goals included wanting to help others. Goals could be linked to all ICF components within the ICF, with the majority linked to Activities and Participation, followed by Environmental Factors, Body Functions and Structures, and Personal Factors. Conclusions: People with aphasia in this study were able to articulate a wide range of goals post-stroke that encompassed all of the ICF components but had a particular focus on the Activity and Participation components.

SMARTER goal setting in aphasia rehabilitation

Background: There have been numerous calls for rehabilitation professionals to involve patients or clients in decisions about the goals of therapy. And yet collaborative goal setting in rehabilitation remains uncommon and is particularly difficult to achieve for people with aphasia. Aims: This discussion paper describes a new framework for conceptualising and structuring collaborative goal setting in aphasia rehabilitation. The framework has been developed based on the results of a large, multi-centred Australian study, the Goals in Aphasia Project, which explored client, family, and speech pathology experiences of rehabilitation goal setting. This framework, called SMARTER Goal Setting, describes a process of goal setting that is Shared, Monitored, Accessible, Relevant, Transparent, Evolving and Relationship-centred. Methods & Procedures: The methods and results from the Goals in Aphasia Project have already been published elsewhere but involved in-depth interviews with 50 people with aphasia, 48 family members, and 34 treating speech pathologists. This paper reviews the broader literature and summarises relevant findings from the Goals in Aphasia Project as a basis for discussion of each category of SMARTER. Outcomes & Results: Our new SMARTER framework both challenges and complements elements of the pervasive SMART goal paradigm (that goals should be Specific, Measurable, Achievable, Realistic and Time-bound), which currently dominates rehabilitation goal setting. SMARTER offers an easy way to summarise much of the collaborative work that already takes place in clinical practice but also emphasises aspects that could be improved. SMARTER does not replace SMART, but we suggest that SMART goals can be negotiated in a SMARTER way. Conclusions: While this paper discusses SMARTER goal setting within aphasia rehabilitation, a particularly challenging context for the implementation of collaborative practice, it may be applicable to rehabilitation more broadly. Given that person-centred goal setting within stroke rehabilitation remains infrequent, we suggest that there is an urgent need to raise awareness of its importance and challenge current practice. The SMARTER framework provides a useful structure to support collaborative goal setting.

“Well it has to be language-related”: Speech-language pathologists' goals for people with aphasia and their families

Goal-setting is considered an essential part of rehabilitation practice and integral to person-centredness. However, people with aphasia are not always satisfied with goal-setting, and speech-language pathologists are concerned about the appropriateness of therapy. Furthermore, family members are often excluded from goal-setting, despite the impact aphasia has on them. The actual goals set by clinicians for clients with aphasia and their family members have not yet been investigated. This study aimed to examine the goals that clinicians set for their clients with aphasia and their family members. Data from in-depth interviews with 34 speech-language pathologists describing 84 goal-setting experiences with people with aphasia were coded into superordinate goals for both groups. Clinicians expressed a wide range of goals for people with aphasia and their family members, relating to communication, coping and participation factors, and education. In addition, evaluation was considered a goal for the clients. There were clients for whom no goals were set, particularly for family members, due to a lack of/limited contact. The goals described broadly addressed all aspects of the International Classification of Functioning, Disability and Health (ICF) and reflected the use of both functional and impairment-based therapeutic approaches; they also emphasize the importance of providing goal-setting options for the family members of these clients.

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.

Stroke management: updated recommendations for treatment along the care continuum

The Australian Clinical Guidelines for Stroke Management 2010 represents an update of the Clinical Guidelines for Stroke Rehabilitation and Recovery (2005) and the Clinical Guidelines for Acute Stroke Management (2007). For the first time, they cover the whole spectrum of stroke, from public awareness and prehospital response to stroke unit and stroke management strategies, acute treatment, secondary prevention, rehabilitation and community care. The guidelines also include recommendations on transient ischaemic attack. The most significant changes to previous guideline recommendations include the extension of the stroke thrombolysis window from 3 to 4.5 h and the change from positive to negative recommendations for the use of thigh‐length antithrombotic stockings for deep venous thrombosis prevention and the routine use of prolonged positioning for contracture management.

I can't sleep at night with discharging this lady: The personal impact of ending therapy on speech-language pathologists

The ending of therapy is a crucial time for speech-language pathologists and can impact on their sense of achievement and satisfaction. Drawing on literature from psychotherapy, social work and rehabilitation as well as from the area of aphasia therapy, this paper explores how speech-language pathologists juggle the tensions of coping with real versus ideal endings, of managing the building of close therapeutic relationships which then have to be broken, and of balancing a respect for client autonomy while retaining control over caseloads and fair allocation of resources. I suggest that the way in which therapy finishes reflects a merger of how clinicians manage these tensions. Clinicians may benefit from a greater recognition of what they do and feel at discharge, not only to further reflective practice, but also to encourage more sensitive involvement with both clients and students.

Development and validation of Australian aphasia rehabilitation best practice statements using the RAND/UCLA appropriateness method

Objectives To develop and validate a national set of best practice statements for use in post-stroke aphasia rehabilitation. Design Literature review and statement validation using the RAND/UCLA Appropriateness Method (RAM). Participants A national Community of Practice of over 250 speech pathologists, researchers, consumers and policymakers developed a framework consisting of eight areas of care in aphasia rehabilitation. This framework provided the structure for the development of a care pathway containing aphasia rehabilitation best practice statements. Nine speech pathologists with expertise in aphasia rehabilitation participated in two rounds of RAND/UCLA appropriateness ratings of the statements. Panellists consisted of researchers, service managers, clinicians and policymakers. Main outcome measures Statements that achieved a high level of agreement and an overall median score of 7–9 on a nine-point scale were rated as ‘appropriate’. Results 74 best practice statements were extracted from the literature and rated across eight areas of care (eg, receiving the right referrals, providing intervention). At the end of Round 1, 71 of the 74 statements were rated as appropriate, no statements were rated as inappropriate, and three statements were rated as uncertain. All 74 statements were then rated again in the face-to-face second round. 16 statements were added through splitting existing items or adding new statements. Seven statements were deleted leaving 83 statements. Agreement was reached for 82 of the final 83 statements. Conclusions This national set of 82 best practice statements across eight care areas for the rehabilitation of people with aphasia is the first to be validated by an expert panel. These statements form a crucial component of the Australian Aphasia Rehabilitation Pathway (AARP) (http://www.aphasiapathway.com.au) and provide the basis for more consistent implementation of evidence-based practice in stroke rehabilitation.

Living with aphasia: Three Indigenous Australian stories

Abstract The incidence of cardiovascular disorders and stroke in Australian Aboriginal communities is more than twice as high as non-Indigenous Australians. Approximately 30% of people who survive stroke are left with some level of aphasia, and yet Indigenous Australians appear to be infrequent users of speech-language pathology services, and there is virtually no research literature about the experiences of aphasia for this group of people. This paper presents the stories of living with aphasia for three Indigenous Australian men living in Perth, Western Australia. Their narratives were collected by an Indigenous researcher through in-depth, supported interviews, and were explored using both within-case and cross-case analyses for common and recurring themes. It is argued that there is value for speech-language pathologists, and other health professionals, to be aware of the broad experiences of living with aphasia for Indigenous Australians because their stories are rarely heard and because, as with people with aphasia generally, they are at risk of social isolation and tend to lack visibility in the community. This study explores the key issues which emerge for these three men and highlights the need for further research in this area.

“Ward talk”: Nurses’ interaction with people with and without aphasia in the very early period poststroke

Background: Nursing staff are the most frequent communication partners, after family members, for people in hospital poststroke, and they play an essential role in the multidisciplinary team. Recent research has found that patients are more cognitively and socially active when wards provide an “enriched environment” as compared to standard care. Therefore, language enrichment on acute wards is now being considered as a possible way to discourage “learned nonuse” of language in people with aphasia. Aims: This study involved an exploration of the nature of nurses’ interactions with three patients on an acute stroke ward, two with aphasia and one without, in order to understand the nature of the communicative environment in more detail. Methods & Procedures: Following all necessary ethics approval processes and consents, continuous video recordings of 7.5 hr each were run for three male patients (two aged 68 years and one aged 48 years) on the acute stroke ward within a teaching hospital in an Australian city. Two had left hemisphere strokes resulting in a Wernicke’s aphasia (WAB AQ = 47) and a global aphasia (WAB AQ = 9.2) and one had a right hemisphere stroke and no aphasia. All instances of interaction with nurses over that period were transcribed orthographically and analysed at a discourse level using a speech function analysis based on a systemic functional linguistic framework. Outcomes & Results: Overall, nurses made most of the opening moves, used closed questions, controlled the conversational floor, and did not generally interact about issues other than physical care. The patients with aphasia had restricted opportunity to use continuing and developing moves and most commonly fell into a pattern of closed question and simple response. There was little evidence of communicative repair by nurses and few supported conversation strategies employed. Patterns of moves identified through the speech function analysis revealed the disempowered position of the patients with aphasia compared to the patient without who used a wider range of speech functions that demonstrated more assertive interactions. Conclusions: This study suggests that nurses, in their role as key communication partners on the acute stroke ward, could help counter the development of learned nonuse by integrating more effective communication strategies into their daily care routines. Further conversation partner training could relieve communication breakdown and frustration and increase opportunities for satisfying conversational exchanges in this setting.

An analysis of the “goal” in aphasia rehabilitation

Background: Despite the central importance of goal setting in aphasia rehabilitation, the notion of the goal itself has not been fully explored. Aims: This paper considers how speech pathologists conceptualise the nature of the “goal” in aphasia rehabilitation. Methods & Procedures: The researchers conducted a qualitative study involving 34 speech pathologists (32 female and 2 male; mean age 41 years, range 24–60 years) from Adelaide, Brisbane and Newcastle, Australia, who worked across acute and rehabilitation inpatient, outpatient, community, and domiciliary services. The speech pathologists participated in semi-structured in-depth interviews about their experiences of providing therapy to people with aphasia post stroke and their family members. Transcriptions of the recorded interviews were subjected to an interpretive thematic analysis involving careful reading and re-reading for recurring themes around notions of goals. Outcomes & Results: The analysis of the transcripts revealed six main categories of goal concepts: goals as desires; SMART goals; impairment and functional goals; goals as steps; goals as contracts; and implicit goals. The first two of these conceptual categories competed with each other reflecting broader tensions within speech pathology practice, and the relative prominence of these goal categories differed according to the rehabilitation context. Conclusions: The findings suggest that the notion of the goal is multifaceted, dynamic, context dependent, and involves inherent tension. A more detailed understanding of the different facets of a goal might assist speech pathologists in their efforts towards collaborative goal setting. A conceptual shift to include the goal as a vehicle of empowerment may be helpful as a precursor to effective, collaborative, and person-centred goal setting with people with aphasia.