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Developing and implementing aphasia-friendly stroke information for patients, families and carers

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VOL: 102, ISSUE: 47, PAGE NO: 32-33

Author Isatu Mason, PGDipEd, SRN, SCM, RN

Stroke services coordinator, Tower Hamlets PCT and Barts and the London NHS Trusts.

Information provision for patients who have suffered a stroke and their families and carers is lacking. Cur...

Abstract Mason, I. (2006) Developing and implementing aphasia-friendly stroke information for patients, families and carers. www.nursingtimes.net.

Information provision for patients who have suffered a stroke and their families and carers is lacking. Currently available information may be difficult for patients with specific impairments, for example aphasia, to understand. Families and carers also experience significant distress following a stroke. Their need for accessible information and support can be overlooked.

Stroke is the commonest cause of adult disability in the UK. Over a million carers provide care for more than 50 hours a week in England and Wales (Office for National Statistics, 2003). 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. The sudden and usually unexpected nature of a stroke together with the wide range of profound physical, social, behavioural, emotional and financial problems encountered during rehabilitation present particular challenges for patients, their families and carers, and can lead to problems of adjustment. This can lead to post stroke depression, which in turn undermines the patient?s motivation and confidence in rehabilitation.

Stroke has the potential to affect the health and quality of life not only of the individuals affected but also of their families and carers, which may subsequently affect the recovery of the stroke survivors (Han and Haley, 1999). The effects of stroke are not just limited to that individual - the illness of one family member affects all (Rudd, et al, 2000). These difficulties are often compounded by a lack of adequate information, support and education from professionals.

Stroke survivors and their families and carers have identified gaps in knowledge and information about stroke treatment and services (Wellwood, et al, 1994; Pound, et al, 1993). 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; Clark and Smith, 1998).

Providing information and adequate support as part of an integrated specialist rehabilitation programme helps the patient and their family to understand the principles of stroke rehabilitation, their expectations and those of healthcare professionals, and participate in rehabilitation activities.

Identifying a need

During a series of workshops held in July, August and December 2004 with managers, clinicians and key professionals to review service delivery in the stroke rehabilitation unit, an area of concern that emerged was lack of communication with patients, their families and carers. This was also a key feature in the national stroke audit results. Even though the service was producing good outcomes for patients, it was felt that better information could be provided and a programme of education could be offered.

Tower Hamlets is an ethnically diverse area which presents specific challenges in terms of communication and differing expectations. In the most recent population census, 48% of Tower Hamlets population defined themselves as coming from a non-white ethnic group. By far the largest of these is the Bangladeshi population at 34% (Office of National Statistics, 2001). Results of an audit of minority ethnic communities (Healthcare Governance Directorate, 2005) show that patients from this group were less likely to receive information and less likely to understand the information provided. These challenges are not well addressed and key standards for patient education as laid out in the National Service Framework for Older People (Department of Health, 2001) and the Royal College of Physicians? National Clinical Guidelines for Stroke (2004) are not being met. The guidelines recommend that a specialist stroke service should have educational programmes for staff, patients and carers.

The stroke rehabilitation unit at Mile End Hospital in London is a 20-bed unit providing specialist care for stroke patients. Patients and their families and carers did receive some information but this was inconsistent and there was no formal education programme or any structured information specific to stroke recovery. For people with aphasia, limited resources were available but patients reported that verbal information provided by doctors and nurses 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 combined multidisciplinary approach to patient teaching with language support and repetition to promote learning, understanding and retention of information. So we set up a working group to design and implement the patients -and carers -information and education group. The nursing team took the lead in ensuring compliance ensuring the group worked.

Developing the programme

Communication - speech and language - is affected in the majority of stroke patients resulting in problems with expression and understanding, which can be frustrating for patients and their families. Identifying strategies to manage communication problems is vital and we set out to produce and deliver aphasia-friendly materials that are simple and concise and could promote comprehension in patients who had diminished abilities in abstract thinking.

The main objectives for this programme are 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):

  • To provide patients and their families and carers with specific education about stroke, its aftermath and the rehabilitation process;
  • To reduce anxiety levels by resolving misconceptions and providing honest answers to their questions;
  • To ensure everyone has equal access to information;
  • To provide an emotionally supportive environment in which people with common problems can share their concerns and coping abilities;
  • To provide an opportunity for the nursing team to develop and enhance their practice and teaching skills.

Several factors influenced the development of the programme including:

  • The identification of basic areas for teaching within a rotational programme;
  • Calculation of the number of sessions in each programme;
  • Decision about a set day of the week for the programme and time, location and length of the sessions;
  • Development of presentations using an aphasia-friendly approach and provision of a resource file containing presentation materials accessible to everyone;
  • Provision of language support for non-English speaking clients and translated versions of handouts;
  • Involvement of social services and the voluntary sector.

The working group identified basic areas for teaching from nurses and therapists on the basis of questions received most frequently by the team from patients and their families during the rehabilitation phase (Box 1).

Box1. List of topics:

    • What is a stroke? Introduce the team and roles of each professional group
    • Stroke rehabilitation and goal setting
    • Sexuality, self-image and emotional changes
    • Healthy eating and dysphagia
    • Bladder and bowel management, skin care, common medications and how to manage them
    • Communication problems
    • Preparing for going home

After outlining the factors influencing the development of the programme and the action plans, the working team discussed the proposed structure and any further suggestions at the multidisciplinary stroke team development meeting.

With the exception of a clinical psychologist, this unit is fortunate to have a full complement of staff required for a specialist stroke rehabilitation unit and is ward based (Box 2), as recommended in the National Service Framework for Older People, standard five (Department of Health, 2001). As a result it was easy to enlist the support, participation and contribution of professionals in the programme. The speech and language therapists in the team agreed to design individual presentations using aphasia-friendly materials. They were designed in a way that enabled anyone in the multidisciplinary team to deliver presentations in the absence of a key professional. The team also engaged the clinical audit department for feedback on the evaluation form and to assist with the analysis. The Stroke Association were approached for relevant teaching materials.

Box2. The multidisciplinary team:

  • Stroke consultant
  • Ward doctor
  • Nurses
  • Stroke co-ordinator or clinical nurse specialist
  • Physiotherapists
  • Occupational therapists
  • Dietitians
  • Speech and language therapists
  • Pharmacists
  • Social workers
  • Bengali advocate/interpreter.

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

Each session lasts an hour in total with presentations no longer than 30 minutes, to allow for discussions, questions and feedback from participants. Also, some people who have experienced a stroke are unable to hold their concentration for long periods.

Implementation

At the stroke operational group meeting and meetings of the acute, rehabilitation and community teams, it was decided to carry out a pilot run of two series - a rolling programme each of seven sessions, repeat and review following analysis of the 14 sessions. A starting day was set for mid-January 2006 and the time set as Thursday afternoons between 3-4pm in the unit day room to avoid a clash with multidisciplinary ward rounds, discharge planning meetings, team meetings and family meetings.

Each session is included on individual patients' timetable as part of their rehabilitation programme, flyers advertising forthcoming sessions are displayed weekly at strategic points on the unit and a personal invitation is given to each patient and their families, carers and friends to encourage participation. All team members are also responsible for encouraging attendance.

In session one, the stroke services coordinator does the presentation with support from the speech and language therapist, nurse, dietetic assistant, physiotherapist and occupational therapist. The participants listen to 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, stroke rehabilitation and healthcare professionals involved in their care. Unfortunately there was no language support for the Bengali-speaking clients as the advocate was unavailable, but the team improvised by using pictures and diagrams with help from the speech and language therapist. The session generated a lot of interest around healthy eating and the dietetic assistant took the opportunity to have individual discussions with interested patients and families. One of the participants, an elderly lady, shared her experience with the group including her recollection of the warning signs of which, at the time, she had no knowledge, and how different it would have been for her if she had known what to expect. Time to discuss the roles of each professional group was limited.

Session two is a joint presentation with done by the therapists. The discussion is 'What is rehabilitation?' and includes the benefits of patient, family and carer involvement, the role of the multidisciplinary team members, expectations and our approach to stroke rehabilitation.

In session three, the occupational therapist discusses 'Sexual and emotional changes' as a result of stroke. Even though the team does not include a clinical psychologist, there is an overlap in this area with occupational therapy and post-stroke perceptual and cognitive problems. A joint presentation would have been of greater benefit to participants. Sexual changes are not often discussed by the team but are of great concern for clients.

Session four is a joint presentation from dietetic and speech and language therapy teams and includes healthy eating, problems with swallowing after stroke and managing modified diet and fluids. This session helps participants to understand the link between diet modification, swallowing and nutrition and includes strategies to assist in making adjustments to lifestyle and the practicalities of a varied textured diet and fluids. There is also an opportunity to familiarise with feeding tubes and equipment.

In session five, the nurse discusses aspects of bladder and bowel management, including incontinence, constipation, skin care, changes due to the stroke and devices. The pharmacist talks about common medications used in stroke medicine, importance of compliance, routes of administration, the use of different compliance aids and types of medications and bowel aids.

In session six, the speech and language therapist presents simple diagrams to show the areas in the brain that are responsible for communication, articulation and comprehension and the relevance of dominant hemisphere (being right-handed or left-handed). Different strategies used to manage communication problems based on individual assessment of needs are discussed - for example, not all patients with communication problems benefit from a picture chart or writing.

Session seven is jointly presented by the social worker, nurses and occupational therapist (however, in this case the social worker was unavailable). The pharmacist also addresses issues around obtaining repeat prescriptions, forging links with the community pharmacist and contacting the GP as soon as a problem is identified with a medicine. The nurse and occupational therapist talk about the home environment, safety issues, care provision, recommendations for home adaptations and adjustments and minimising the risks of falls.

No changes were made to the second series but the presentations were flexible enough to be given by different people.

In both series, different approaches were used because of the variety of cognitive and perceptual problems of the patients. Educational aids such as posters, pictures, diagrams, leaflets, different colours and a display of equipment were used to maintain interest and encourage learning. The Bengali advocate was not available at any of the sessions.

Evaluation

During the pilot phase, the stroke services coordinator facilitated the first series. The responsibility was later handed to the nursing team as a means of integrating nursing practices into the rehabilitation process. The team was keen, motivated and supportive of the programme. Evaluation was done after each session and the speech and language therapist assisted patients with impaired communication to fill out the form. Unfortunately we experienced difficulty with interpreting for the Bengali-speaking clients due to lack of language support. The Stroke Association leaflets on stroke are not available in Bengali.

The clinical audit department carried out a complete analysis of the feedback. This proved the programme useful and helped the team to make improvements.

Feedback from patients and carers:

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

Feedback from the multidisciplinary team:

  • Patients and carers seemed to enjoy the sessions and were interacting with each other;
  • The benefits far outweigh the amount of time spent putting the programme together;
  • There is a need to address issues regarding the availability of bilingual interpreters and translated versions of the handouts;
  • We need to promote the group more so that everyone knows about it.

Because of the feedback received and the success of the programme, these sessions are now a permanent feature on the patients? weekly rehabilitation timetables, and they are informed about it as soon as they are admitted on to the unit. Because the length of stay remains unchanged, we have stuck to the seven-week rolling programme. Better promotion of the programme is done through display of posters and pamphlets on the unit at strategic points. The time for the monthly multidisciplinary seminars has changed to 2pm-3pm to avoid clashing. 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 on the unit and what discuss what life is like after discharge. We are also planning to involve community groups and the voluntary sector for sign posting 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 associated anxieties.

There is no structured programme for patients and carers in the acute unit in our stroke service but this programme will hopefully be adapted. We also need to find ways of ensuring 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 who have experienced a stroke from all communities.

References

Clark, M.S., Smith, D.S. (1998) Knowledge of stroke in rehabilitation and community samples. Disability and Rehabilitation; 20: 90-96.

Department of Health (2001) National Service Framework for Older People. London: DH.

Forster, A. et al (2001) Information provision for stroke patients and their caregivers. Cochrane Database Systematic Review; 3: CD001919.

Han, B., Haley, W.E. (1999) Family care-giving for patients with stroke: review and analysis. Stroke; 30: 1478?85.

Health Care Governance Directorate (2005) Inpatient Survey. London: Barts and the London NHS Trust.

Kelson, M., Ford, C. (1996) Stroke Rehabilitation: Patient and Carer Views. London: RCP.

Office for National StatisticsEnglandandWales (2001) Ethnic profile of Tower Hamlets. http://publichealth.thpct.nhs.uk/publichealthreport/index.aspx?pid=47

Office of National StatisticsEnglandandWales (2003). Carers. www.statistics.gov.uk/cci/nugget.asp?id=347

Pound, P. et al (1993). Development and results of a questionnaire to measure carer satisfaction after a stroke. Journal of Epidemiology and Community Health; 47: 500-505.

Robinson, L. et al (2005) Caring for carers of people with stroke: developing a complex intervention following the Medical Research Council framework. Clinical Rehabilitation; 19: 560-571.

RoyalCollegeofPhysicians (2004) National Clinical Guidelines for Stroke. London: RCP.

Rudd, A. et al (2000) Stroke at Your Fingertips. London: Class Publishing.

Wellwood, I. et al (1994) Perceptions and knowledge of stroke among surviving patients with stroke and their carers. Age and Ageing; 23: 293-98.

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