user involvement

Beyond impairment
READ THIS IF YOU WANT TO GET BETTER AT GOAL SETTING SHIFT THERAPY EMPHASIS TO ACTIVITY AND PARTICIPATION DEVELOP MORE EFFECTIVE OUTCOME MEASURES
Sylvia Dickson

Having carried out much needed research into the activity and participation elements of dysarthria with clients and carers, Sylvia Dickson, Marian Brady, Rose Barbour, Alex Clark and Gillian Paton took the unusual step of giving those involved the opportunity to reflect on the findings. What followed demonstrates the potential of the shared enthusiasm of users and therapists to transform services and outcomes.
the evidence base for speech and language therapists has been recognised (SEHD, 2002) and doing this in partnership with clients and their carers (SEHD, 2003) would generate an understanding of the activity and participation impact of dysarthria while creating a foundation from which to develop key outcome measures. Such measures would be functionally relevant, reflect the individuals experiences of activity and participation and enable therapists to evaluate the success of therapy in relation to these parameters. These developments would allow a shift in therapeutic emphasis away from the approaches currently available that focus on the pathology and the dysarthric impairment (WHO, 2001), to a participation-based focus that addresses client and carer-identified priorities. A joint project completed by the Nursing Midwifery and Allied Health Professions Research Unit, Glasgow, University of Dundee, University of Alberta, Canada and NHS Greater Glasgow and Clyde addressed this issue. Twenty-four individuals with varying severities of dysarthria following stroke were recruited from twelve hospitals across Scotland for semi-structured, in-depth interviews over a 12 month period. Therapists from six NHS Boards (Ayrshire & Arran, Forth Valley, Grampian, Greater Glasgow & Clyde, Lanarkshire and Tayside) participated in the study by approaching suitable individuals from their caseloads and informing them about it. The results are fully described elsewhere (Dickson et al., in press) but indicate that the effects of dysarthria following stroke extend beyond the physiological characteristics of the impairment. In turn, the resulting communication difficulties lead to changes in self-identity, relationships, social and emotional disruptions and feelings of stigmatisation or perceived stigmatisation. For more than half the participants, dysarthria had a negative impact on self-identity. Individuals reported feeling different, and wanting to be treated as normal. Many described changes in how their voice sounded, which also had a negative impact on self-identity. Relationship disruptions were common. Interactions with strangers were particularly problematic and were frequently associated with stigmatisation. Dysarthria also had considerable social implications, with more than two thirds of participants experiencing social disruptions. For example, speaking to people in shops or by telephone was problematic for many participants, with two thirds reporting avoidance of these situations. The communication difficulties experienced by participants also had associated emotional implications, with nearly all reporting emotional disruptions, including depression, anger and frustration. Interestingly, the impact of these difficulties was equally as significant for mildly-affected clients as it was for those with moderate impairment, with participants continually striving to get their speech back to normal. Although participants generally spoke about the negative impact of dysarthria, a few discussed how dysarthria had had a positive impact on certain aspects of their lives. One participant reported that their dysarthria had brought the family closer together, while another (who frequently worked away from home prior to his stroke) reported having a changed, more appreciative outlook on life.

ysarthria is a frequent consequence of stroke, experienced by approximately 2030 per cent of individuals in the early post-stroke stages (Warlow et al., 2000). Despite its prevalence, there is little research into the condition to inform practice. Searching the relevant electronic databases (such as Language and Linguistic Behaviour Abstracts and Cinahl) few papers focusing on stroke-related dysarthria are highlighted. A relevant Cochrane systematic review of the evidence relating to interventions for dysarthria confirms this (Sellars et al., 2005). What little information is available is concerned with the pathology of dysarthria (disease and diagnosis) and related impairments (symptoms and signs). Despite recognition of the psychosocial consequences of aphasia and other communication impairments, little consideration has been given to the activity (disability) and participation (handicap) elements of dysarthria (WHO, 2001). The central aim of a multidisciplinary stroke rehabilitation team is to ensure an individuals participation within their family, social networks and community (SIGN, 2002). Exclusion from participation in such circles however can be exacerbated by a co-existing communication impairment (Parr et al., 1997). As with many communication disorders the impact of the communication impairment extends beyond the individual to the family, in particular the spouse and children. Yet few have explored the nature of this impact of dysarthria, the obstacles experienced, expectations for the future and activities considered supportive of both the individual and communication. The critical role of speech and language therapists in communication and rehabilitation is often highlighted (SEHD, 2002) as is the key aim of poststroke dysarthria rehabilitation to maximise participation for the dysarthric speaker (SIGN, 2002). However, before this method can be adopted, an understanding of the psychosocial impact of dysarthria is required. Current approaches to the assessment, treatment and evaluation of effectiveness have arisen from the current pathology / impairment focus of the dysarthria literature and as a result are pathology / impairment-based. The need to extend

Reflections on findings

Dissemination is an important component of research and we wanted to include the research participants. We invited study participants, their carers and the recruiting speech and language therapists to comment on the results of the study; 4 participants, 4 carers and 9 therapists attended. After hearing the results, the attendees split into two groups clients/ carers and speech and language therapists - to discuss the implications of the findings on services and structures. Members of the research team recorded and facilitated the discussions. The discussions can be summarised into five themes: Delivery of therapy, Information needs, Education, Carers needs, and Discharge and longterm support. It is of note that issues arising and discussed within both groups overlapped. This clearly demonstrates the shared interest and enthusiasm for improving the support given to individuals with dysarthria and their carers.

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SPEECH & LANGUAGE THERAPY IN PRACTICE Winter 2007

user involvement

1. Delivery of therapy

The groups discussed the implications of the findings in relation to the manner in which speech and language therapy is delivered to this client group. Many of the speech and language therapists described how, as a result of the study findings, they would now view dysarthria as much of a priority as other communication problems and difficulties experienced post-stroke. The individuals with dysarthria highlighted geographical and regional variations in the manner and frequency of service provision and called for these differences to be addressed. The experiences of treatment provided in small units (rural, mixed units) was discussed positively and believed to be better than that provided in larger units (stroke specific units and rehabilitation centres). Communication between departments was seen as problematic, particularly for larger units. Considerable time was spent discussing the concept of normal speech. The speech and language therapists described therapy which aims to improve speech, in many cases working towards a goal of speech that is perceived by others as normal. However, speech that is perceived as normal by others may not necessarily be considered normal by clients. This discrepancy might be reconciled by a matching of clients and carers needs to services through careful goal setting and detailed discussions of their expectations from therapy as well as recovery. The clients and carers felt a plan outlining what they could do themselves to improve the situation, including exercises and adaptive techniques, would be beneficial. The clients and their carers also suggested that an increase in the provision of services would allow a more appropriate response to the specific needs of individual clients over the course of experiencing dysarthria as a result of stroke. For example, they suggested that counselling might be offered to both clients and carers. It should be offered at different stages in the recovery (not just in the early stages) together with support and advice on moving on.

has long been identified as an area requiring attention. The group sought information in a variety of formats, not just in the form of information leaflets. Information described as helpful included the impact of dysarthria on the person and information on relevant support groups.

3. Education

Alongside providing additional information to clients and their carers the groups described the need for more information and education for the health care professionals themselves on what dysarthria is and how best to support communication with people who have dysarthria. The clients and their carers in particular highlighted the importance of adequate GP support, yet felt GPs needed more education not only in relation to dysarthria but also more generally in relation to stroke. Both groups discussed the need to raise the profile of dysarthria amongst the general public, in particular the association between stroke and the older population (the participants in our study were aged between 34 and 86). How this could actually be done was thought to be problematic, though the new stroke campaign (The Stroke Association, 2007) may go some way towards addressing the lack of knowledge about stroke amongst the general public.

important. The study highlighted that people may still be experiencing the impact of dysarthria years after its onset. The difficulties inherent in deciding when it is appropriate to discharge clients was discussed, but both groups agreed the possible psychosocial impact of dysarthria should be discussed with clients and their carers before discharge. The clients and carers recognised the difficulties for health care professionals in deciding when to offer support / advice. The speech and language therapists suggested an open door referral system might be appropriate, with clear instructions for those clients being discharged on how to re-access the service if needed. However, as talking on the telephone was now problematic for many of the clients, issuing a contact telephone number to re-access services may not be the most appropriate way. There was a clear consensus that support and services should not just be offered at the onset of dysarthria and support is needed not just from the speech and language therapy services, but from across the stroke care services. We found bringing together the people who were actively involved in the research a very valuable experience. The participants, carers and speech and language therapists who attended said they found it beneficial to hear and learn from other peoples experiences. Sylvia Dickson and Marian Brady are based at the Nursing Midwifery and Allied Health Professions Research Unit in Glasgow, Rose Barbour is based at the University of Dundee, Alex Clark is based at the University of Alberta in Canada and Gillian Paton is based at the Royal Alexandra Hospital, Paisley. Address for correspondence: Sylvia Dickson, Trial Coordinator, NMAHP Research Unit, Glasgow Caledonian University, 2nd Floor Buchanan House, Cowcaddens Road, Glasgow G4 0BA, tel. 0141 331 8106.

4. Carers needs

2. Information needs

Carers are often a clients main communicative partner and it is now commonplace for speech and language therapists to involve carers when working with clients with other acquired communication disorders such as aphasia. The carers attending this event called for increased involvement in speech and language therapy and described how they felt excluded from therapy and related discussions. It was also acknowledged however that some clients may not want carers involved in their therapy / discussions and so involvement of carers should be carefully considered. Overall both groups recognised that carers of individuals with dysarthria can be significantly affected and should be supported either on a one-to-one basis or alongside the person with dysarthria.

Acknowledgments

The individuals with dysarthria and their carers requested frequent provision of information by all health care professionals involved. The information needs of the post-stroke population and their carers

5. Discharge and long-term support

Discharge and long-term support was discussed in detail and all agreed that long-term support is very

We thank the following for their valuable contributions to this study: the individuals with dysarthria and carers for their participation; the recruiting speech and language therapists; Chief Scientist Office, Department of Health, Scottish Executive for funding; Dr. Ellen Townend and Vikki Milne for their contributions. SLTP

References

Dickson, S., Barbour, R.S., Brady, M., Clark, A.M. & Paton, G. (In press) Patients experiences of disruptions associated with poststroke dysarthria, International Journal of Language and Communication Disorders. Parr, S., Byng, S. & Gilpin, S. (1997) Talking about aphasia. Buckingham: Open University Press. Scottish Executive Health Department (2002) Building on Success. Future directions for the Allied Health Professions in Scotland. Available online at: http://www.scotland.gov.uk/Publications/2002/06/14963/7817 (Accessed 21 October 2007). Scottish Executive Health Department (2003) Partnership for Care. Scotlands health white paper. Available online at: http://www. scotland.gov.uk/Publications/2003/02/16476/18730 (Accessed 21 October 2007). Scottish Intercollegiate Guidelines Network (2002) Management of Patients with Stroke: Rehabilitation, Prevention and Management of Complications and Discharge Planning. Available online at: http://www.sign.ac.uk/pdf/sign64.pdf (Accessed 21 October 2007). Sellars, C., Hughes, T. & Langhorne, P . (2005) Speech and language therapy for dysarthria due to non-progressive brain damage, Cochrane Database of Systematic Reviews, 3. Available online at: http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/ CD002088/pdf_fs.html (Accessed 21 October 2007). The Stroke Association (2007) Stroke is a Medical Emergency campaign. Available online at: http://www.stroke.org.uk/campaigns/ current_campaigns/stroke_is_a_medical_emergency/index.html (Accessed 21 October 2007). Warlow, C.P ., Dennis, M.S., van Gijn, J., Hankey, G.J., Sandercock, P .A.G., Bamford, J.G. & Wardlaw, J. (2000) Stroke: a practical guide to management. 2nd edn. Oxford: Blackwell Scientific. World Health Organisation (2001) International Classification of Functioning, Disability and Health (ICF). Available online at: http://www.who.int/classifications/icf/site/onlinebrowser/icf.cfm (Accessed 21 October 2007).

DO I RECOGNISE THAT SEVERITY OF IMPAIRMENT DOES NOT NECESSARILY EQUAL SEVERITY OF IMPACT? DO I LISTEN TO CLIENTS AND FAMILIES TO FIND WHAT WOULD MAKE A DIFFERENCE TO THEM? DO I BRING PARTICIPANTS IN PROJECTS OR AUDITS TOGETHER TO REFLECT ON THE OUTCOME? How has this article been helpful to you? What are you doing to work with users to improve services? Let us know via the Winter 07 forum on the www.speechmag.com members area.

REFLECTIONS

SPEECH & LANGUAGE THERAPY IN PRACTICE Winter 2007

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