INT J LANG COMMUN DISORD, JULY–AUGUST VOL.
2012,
47, NO. 4, 398–412
Research Report Evaluating the effectiveness of intervention in long-term aphasia post-stroke: the experience from CHANT (Communication Hub for Aphasia in North Tyneside) Katharyn Mumby† and Anne Whitworth‡ †Speech and Language Sciences, School of Education Communication and Language Sciences, Newcastle University, Newcastle-upon-Tyne, UK ‡School of Psychology and Speech Pathology, Faculty of Health Sciences, Curtin University, Bentley, Perth, WA 6102, Australia
(Received September 2011; accepted February 2012) Abstract Background: Despite recognition of the need for increased long-term support for people with aphasia following stroke, there remains limited evidence for effective service-level interventions. Aims: To evaluate the outcomes and experiences of people participating in the Communication Hub for Aphasia in North Tyneside (CHANT), a 2-year partnership project between health, local authority and third-sector services, shaped by people with aphasia, which provided a coordinated programme of support and interventions for people with long-term aphasia following stroke. Methods & Procedures: Quantitative and qualitative methods were used in the evaluation. Thirty-nine participants with aphasia were recruited to the 12-month study as they became part of CHANT, with 20 completing all measures at the end of the study. Participants had no other speech and language therapy during the study. Quantitative measures (before and after intervention) were used for quality of life, self-report outcomes and goal attainment. Three of the participants with aphasia and three further people involved in the service (carer, volunteer, public sector worker) each agreed to a series of five semi-structured interviews over a 9-month period. A total of 28 interviews were collected using neutral interviewers; these were transcribed and analysed by a team within NVivo8 software, based on interpretive principles from grounded theory. Thematic analysis of the narratives explored the experience of engaging with CHANT, and the barriers and facilitators affecting quality of life. Outcomes & Results: People with aphasia made significant gains in quality of life (in particular, in communication and psychosocial adjustment to stroke) and self-report measures of change. A total of 82% of real-life goals set as part of intervention were fully or partially achieved at follow-up. Five core themes emerged from the narratives: ‘Quality of life’, ‘Barriers’, ‘Facilitators’, ‘Types of CHANT activity’ and ‘Effectiveness’. The intervention was evaluated through the theme of ‘Effectiveness’ in relation to the other themes, encapsulating emerging participant views (including the type and timeliness of activity, expectations of outcomes, resources and perceived value). The impact of the intervention was also analysed in terms of identifying barriers and providing facilitators. Conclusions & Implications: The quantitative and qualitative (narrative) findings were complementary in demonstrating the effectiveness of the CHANT service delivery model. Moreover, the narratives, through a longitudinal perspective, provided evidence about people’s experience of intervention for long-term aphasia. The findings provide foundations for further work into long-term recovery, intervention and adjustment to aphasia post-stroke. Keywords: aphasia, stroke, outcome measures, evidence-based practice.
Address correspondence to: Katharyn Mumby, Speech and Language Sciences, School of Education Communication and Language Sciences, King George VI Building, Newcastle University, Newcastle-upon-Tyne NE1 7RU, UK; e-mail:
[email protected] International Journal of Language & Communication Disorders c 2012 Royal College of Speech and Language Therapists ISSN 1368-2822 print/ISSN 1460-6984 online DOI: 10.1111/j.1460-6984.2012.00153.x
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What this paper adds What is already known on this subject Existing research explores the nature of quality of life and social participation in long-term aphasia post-stroke, but little is known about the effectiveness of service-level interventions in promoting positive outcomes. What this study adds This study employed quantitative and qualitative methods to evaluate an intervention for long-term aphasia after stroke. Quantitative measures set the context for narratives on the participants’ experience of the CHANT intervention. Intervention was shown to be effective in terms of gains in quality of life, patient-reported outcomes and goal attainment. The narratives offered multiple perspectives on the longitudinal processes involved in engaging with CHANT. Introduction Long-term support for people living with aphasia has been identified as a key issue facing the National Health Service (NHS) and other organizations in the UK (National Stroke Strategy, Department of Health 2007, McKevitt et al. 2010, Care Quality Commission 2011). To date, stroke services in the UK have tended to focus on the acute and early rehabilitation phases of recovery, with longer-term needs receiving considerably less attention. Moreover, there remains insufficient evidence about the effectiveness of long-term services in supporting people with aphasia, compounded by research often explicitly excluding people with aphasia due to their communication difficulties (Hackett and Anderson 2005, Daniel et al. 2009) and likely to perpetuate the limited commissioning of services specifically for long-term support. Funded by a government stroke grant through North Tyneside Council, the Communication Hub for Aphasia in North Tyneside (CHANT) was set up as a pilot community based intervention to identify and meet the communication needs of people living in the community in North Tyneside with aphasia post-stroke. This paper reports an evaluation of the effectiveness of CHANT, using a combination of quantitative and qualitative methods with a view to informing future commissioning, design and delivery of services for people with aphasia. Despite the large numbers of people living with aphasia after stroke (Code and Petheram 2011), there are few studies reporting service-level interventions that support recovery and quality of life (QOL) in the longterm (Hoen et al. 1997, Kagan et al. 2001, van der Gaag et al. 2005) although some recent studies have explored aspects of living with aphasia, providing information to inform service design (Brown et al. 2010, McClung et al. 2010, Dalemans et al. 2010, Ross et al. 2006, Pound et al. 2001). Within the framework of the ‘International Classification for Functioning, Disability and Health’ (ICF) proposed by the World Health Organisation (WHO) (2001), health is accounted for not only just by impairments, but also in terms of the consequences for
activity and participation in life. Therefore, each domain needs to be considered in service design (Cruice et al. 2003) as well as taking into account the perspectives of those with aphasia and their carers (Worrall et al. 2011, Horton et al. 1998). The Communication Hub for Aphasia in North Tyneside (CHANT) The CHANT intervention grew out of collaboration between people with aphasia and their carers, the NHS, the Stroke Association, the local authority and other third-sector organizations within North Tyneside, providing a novel service model aimed at improving QOL in people living with chronic aphasia after stroke. CHANT was led by a speech and language therapist (SLT) employed by the NHS and a communication support coordinator employed by the Stroke Association. Providing mutual training and group and one-to-one support, CHANT was designed with the involvement of participants with aphasia via individual interviews, two focus groups and a separately commissioned scoping project (the ‘Back to Work’ project) using the skills of aphasia consultants from Connect in London. People with aphasia continued to shape the service via a ‘Planning group’. A schematic representation of the model of service delivery is set out in figure 1. Aims of CHANT The primary aim of CHANT was to support people with aphasia and their carers through a combination of direct contact (based on a structured programme of real-life goal setting), provision of information and a bridge to other services, and indirect support via training of other key people in the immediate environment about communication access and aphasia. The direct intervention, where possible, took place in groups; where people were restricted physically (or emotionally) in their ability to engage in groups, individual
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Katharyn Mumby and Anne Whitworth Table 1. Characteristics of participants with aphasia at initial assessment (n = 39) (Data for the 30 participants who completed the assessments are shown in parentheses)
Age (years) Time post-stroke (months) Gender (male:female)
Figure 1. The CHANT service delivery model.
sessions were offered. The direct support from CHANT staff was supplemented by volunteers recruited to the project under the auspices of the Stroke Association and trained by the CHANT staff in collaboration with ‘expert patients’ with aphasia (Quinn et al. 2008). Methods An evaluation of the impact of the intervention was undertaken over a 1-year period, using a mixed-methods approach; quantitative behavioural and perceptual measures were used in conjunction with qualitative interview data. Three research questions are addressed in this paper, the first of which is the primary focus: • Was the CHANT intervention effective in helping people to live with long-term aphasia, and if so which aspects of the intervention underpinned this success? • What is the experience of the service offered by CHANT from the point of view of people with aphasia, partners, volunteers and professionals, including change over time? • Do particular factors emerge that have an impact on the QOL of people living with aphasia after stroke, in terms of barriers and facilitators? Participants CHANT drew on people within North Tyneside, an urban population comprising 195 000 people covering a range of socio-economic groups. Participants in the research were recruited from within CHANT (hosted by the Speech and Language Therapy (SLT) service, North Tyneside PCT). Adults with aphasia after stroke were referred to CHANT by their usual SLT when they were reaching the final stages of their regular SLT provision (minimally 4 months post-onset and more usually a year or more after their stroke) or
Mean
Range
SD
69.15 (68.13) 37.15 (40.5)
37–92 4–144
12.8 (12.59) 34.86 (36.41)
24:15 (20:10)
–
–
self-referral was accepted. The service was advertised locally using two launch events to which people with known aphasia were invited with their carer. People were not excluded on the basis of severity of aphasia, age, the presence of additional communication impairments such as dysarthria and apraxia, or other co-morbidity. Any referrals with diagnosed dementia were guided to other services. Other people (partners or carers, volunteers, local authority employees and staff from other organizations in the public, voluntary and private sectors) were involved in CHANT through volunteering or invitation to take part in training or group support. All people with aphasia referred to CHANT were approached to take part in the study as part of their assessment, and their permission was sought for using the routine information collected from their SLT assessments. Informed consent procedures, following NHS research ethics protocol, included the use of ‘total communication’ techniques for those with aphasia based on their preferred communication methods. A cohort of 39 people consented to take part in the evaluation (see table 1 for participant details). Twenty further participants were part of the core cohort of people who took part in CHANT, but they were excluded from the research as they joined the intervention too late to be included in the 9–12-month follow-up. A smaller subset of participants was recruited to take part in a series of interviews as part of the study. Three people with aphasia after stroke were recruited from the wider group (PWA1, PWA2 and PWA3), in addition to three people without aphasia. The participants with aphasia were selected by the CHANT SLT with input from the referring therapist, with the explicit intention of sampling a range of age (including participants of working age and retired), gender (male and female), communication difficulties, and experiences (including previous experience in an NHS expert patients programme through to adjusting to a more recent stroke). Participants with severe aphasia or severe hearing loss were not selected for interview due to the demands of the interview situation. Each interviewee needed to agree to complete all five interviews. One participant died during the course of the study, requiring
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Table 2. Interview participants (n = 6): personal and social characteristics Aphasia severity
Gender
Age (years)
Months post-stroke
Receptive
Expressive
PWA1
Male
70
13
Mild
Mild
Solicitor
PWA2
Male
40
29
Moderate
Mild
Chef
PWA3
Female
76
26
Moderate
Moderate
PWA4
Male
68
27
Mild
Mild
Carer
Female
(57)a
(52)a
(Moderate)a
(Severe)a
Volunteer Public sector worker
Female Female
