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Developing aphasia-friendly services for stroke survivors

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VOL: 102, ISSUE: 47, PAGE NO: 32

Isatu Mason, PGDipEd, SRN, SCM, RN, is stroke services coordinator, Tower Hamlets PCT and Barts and The London NHS Trusts

Stroke has the potential to affect the health and quality of life not only of the individuals affected but also of their carers, which may subsequently affect outcomes (Han and Haley, 1999). These difficulties can be compounded by a lack of adequate support and education from professionals.

Stroke has the potential to affect the health and quality of life not only of the individuals affected but also of their carers, which may subsequently affect outcomes (Han and Haley, 1999). These difficulties can be compounded by a lack of adequate support and education from professionals.

Identifying a need
During a series of workshops held in 2004 with key professionals to review service delivery in the stroke rehabilitation unit, we identified lack of communication with patients and carers. Although the service was producing good patient outcomes, it was felt that better information could be provided.

The stroke rehabilitation unit at Mile End Hospital in London is a 20-bed unit providing specialist care for stroke patients.

Limited resources were available for people with aphasia but patients reported that verbal information they received was too complex. Their families and carers felt that they did not have an appropriate forum for asking questions and accessing information. Overall 22% of patients admitted to the unit last year were Bengali.

Although patient education is a core standard in stroke service guidelines, this unit did not have a structure in place for a multidisciplinary approach to patient teaching. So we set up a working group to design and implement a patients' and carers' information and education group.

Developing the programme
Speech and language is affected in most stroke patients resulting in problems with expression and understanding. Identifying strategies to manage communication problems is vital. We set out to produce and deliver aphasia-friendly materials that were simple and concise and could promote comprehension in patients who had diminished abilities in abstract thinking.

The main objectives for this programme were based on the National Service Framework for Older People stroke standard 5 (Department of Health, 2001) and the Royal College of Physicians' National Clinical Guidelines for Stroke (RCP, 2004).

The working group identified the following areas for teaching on the basis of questions received most frequently from patients and their families during the rehabilitation phase:

- What is a stroke?

- Introducing the team;

- Stroke rehabilitation and goal-setting;

- Sexuality, self-image and potential emotional changes;

- Healthy eating and dysphagia;

- Bladder and bowel management, skin care and common medications;

- Communication problems;

- Preparing for going home.

The programme was set up on a seven-week rotation on the basis that this is the average length of stay in the unit.

Each session lasted an hour in total with presentations no longer than 30 minutes, to allow for discussion. Some people who have experienced a stroke are unable to hold their concentration for longer periods.

A pilot of two series of the programme started in January 2006. Each session was included on individual patients' timetable as part of their rehabilitation programme. Flyers advertising sessions were displayed weekly on the unit. To encourage participation, an invitation was given to all patients, their families and their carers.

In session one the stroke services coordinator gave an introductory presentation with support from the nurse, speech and language therapist, dietetic assistant, physiotherapist and occupational therapist. This included an audio tape in English from the Stroke Association on 'What is a stroke?', which includes information on types of strokes, warning signs, risk factors, prevention, rehabilitation and healthcare professionals involved in patients' care.

Session two covered 'What is rehabilitation?' and included the benefits of patient and carer involvement, the role of the multidisciplinary team, expectations and our approach to rehabilitation.

In session three the occupational therapist discussed 'Sexual and emotional changes' as a result of stroke. Sexual changes are not often discussed by the team but are of great concern for clients.

Session four was a joint presentation from the dietetic and speech and language therapy teams. It covered healthy eating, problems with swallowing, and managing modified diet and fluids. This session included strategies to assist in making adjustments to lifestyle and the practicalities of a varied textured diet and fluids. There was also an opportunity to become familiar with feeding tubes and equipment.

In session five the nurse discussed aspects of bladder and bowel management, including incontinence, constipation, skin care, changes due to the stroke and devices. The pharmacist talked about common medications used in stroke medicine, the importance of concordance and routes of administration.

In session six the speech and language therapist presented simple diagrams to show the areas in the brain that are responsible for communication, articulation and comprehension and the relevance of dominant hemispheres.

Session seven was jointly presented by the nurses, social worker and occupational therapist. The pharmacist also addressed issues around obtaining repeat prescriptions and how to deal with medication problems. The nurse and occupational therapist talked about the home environment, safety issues, recommendations for home adaptations and minimising the risks of falls.

In both series, different approaches were used because of the variety of cognitive and perceptual problems of the patients. Educational aids such as posters, diagrams, leaflets and a display of equipment were used to maintain interest and encourage learning.

During the pilot phase the stroke services coordinator facilitated the first series. The second series was managed by the nursing team. Evaluation was carried out after each session and the speech and language therapist assisted those patients with impaired communication.

Unfortunately we experienced difficulty with interpreting for the Bengali-speaking clients due to lack of language support. In addition the Stroke Association leaflets were not available in Bengali.

An analysis of the feedback by the clinical audit department showed that the programme was useful and helped the team to make improvements.

Overall 76% found the information useful, relevant and easy to understand. Comments included 'very well done', 'points were clearly presented' and 'we need Bengali interpreters at all sessions'.

The programme is now a permanent feature of the weekly rehabilitation timetable. It is now better promoted through a display of posters and pamphlets on the unit. Although nurses take the lead in advertising and handing out invitations, it is the responsibility of the multidisciplinary team to encourage attendance by patients and family members.

This programme has provided an opportunity for nurses to develop their presentation skills in a supportive and structured environment and their competence and confidence is further enhanced through the multidisciplinary team in-service teaching programme.

We are planning to include a stroke survivor and/or carer in session seven of future programmes so they can share their experiences with existing patients and discuss what life is like after discharge. We are also planning to involve community groups and the voluntary sector for signposting to appropriate agencies. As the transition from the structured rehabilitation environment to home can be difficult and daunting, this patient information and education series is one way of assisting with discharge planning and reducing anxiety.

There is no structured programme for patients and carers in the acute unit of our stroke service but this programme will hopefully be adapted. We also need to ensure a Bengali interpreter is available for all sessions, perhaps through the use of trained volunteers. This will ensure the information is accessible to all people, from all communities, who have experienced a stroke.

- Stroke is the commonest cause of adult disability in the UK.

- Families and carers of stroke survivors require support, information, education and preparation at all stages of recovery from stroke (Robinson et al, 2005) to enable them to participate in care in and out of hospital.

- Stroke survivors and their families and carers have identified gaps in knowledge and information about stroke treatment and services (Wellwood et al, 1994). Patients, their families and carers need user-friendly relevant information and support during the stages of rehabilitation, particularly on making the transition from hospital to the community (Kelson and Ford, 1996).

- Effective information and education to increase knowledge and skills could greatly benefit stroke survivors, their families and carers (Forster et al, 2001).

Implications for practice
- Patient information and education should take into account difficulties that patients have with communication. An education programme ensures that patients receive consistent and structured information specific to stroke recovery.

- The programme can help with the transition from the structured rehabilitation environment to home, which can be difficult for patients and for family and carers.

- The programme should be open to patients, carers and friends, and interpreting services should be available where necessary. This article has been double-blind peer-reviewed

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