SIGN Guideline 119: Management of Patients with Stroke: Identification and Management of Dysphagia

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8 Provision of information

This section reflects the issues likely to be of most concern to patients and their carers. These points are provided for use by health professionals when discussing dysphagia with patients and carers and in guiding the production of locally produced information materials.

8.1 PATIENT INVOLVEMENT IN GUIDELINE DEVELOPMENT

In November 2001, a meeting was held with eight patients and four carers with experience of stroke dysphagia. The meeting was facilitated by SIGN staff and members of the guideline development group. Attendees were asked to consider what they would have changed about their NHS care, what they most valued and what information they had received.

The feedback highlighted both positive and negative aspects of the NHS care the patients had received. The most consistent comment was the poor level of information received by patients and carers, as regards stroke in general, stroke dysphagia and the likely consequences of the condition.

Areas in which patients would have liked more and earlier information include:

• the causes of stroke and how to prevent another
• what help is available
• how they can help in their own care and recovery
• types of treatment available and how they work
• how drugs work and their possible side effects
• explanations of why treatments might change.

A series of patient and carer quotes are included in section 8.2 to highlight the main issues raised.

Given the information gap identified by patients, a literature search was performed to answer the question: what information is needed for patients and their families to understand and cope with the diagnosis, treatment and outcome? When and how should this information be given?

The small amount of published material identified was consistent with the general points raised by the patients.^136-150

The views of the patients and carers also agreed with a survey of 1,206 stroke patients and carers carried out by the Clinical Standards Board for Scotland (now part of NHS Quality Improvement Scotland).¹⁵¹

This identified the following issues as being of most importance to the patients and carers (in order of priority):

• explanation of the condition given by the doctors and nurses
• adequate physiotherapy
• adequate speech and language therapy
• overall hospital care/treatment given
• information provided (eg leaflets on the condition, information on allowances available)
• postdischarge care (general lack of it barring one or two exceptions)
• opportunity to talk to doctors and nurses about the condition (ie the health professionals
  offering time to speak to patients and carers)
• understanding/attitude shown by the health professionals
• information on the likely outcome, degree of recovery or long term care needs
• adequate occupational therapy.

The participants stressed the value of the availability of a programme of therapies rather than occasional or limited numbers of sessions.

8.2 PATIENT AND CARER QUOTES

Carer: “A lot more information could have been given a lot earlier.”

Patient: “The treatment from the nurses on the ward was great once the speech and language therapist had given me the exercises.”

Carer: “There was a lack of continuing care after being discharged from the hospital. We could have benefited from longer treatment from a speech and language therapist.”

Carer: “I felt more involved with the speech therapist/occupational therapist and was kept much more informed. I learnt a lot more about the condition through working with them.”

Patient: “The doctor’s attitude left much to be desired. He was not very encouraging about me getting my PEG tube out and told me to prepare for the worst. I would like to have been told it was only temporary. I have now had the tube removed after 7 months.”

Patient: “The time taken to start the exercises to improve the muscles of the throat was very long. I had to wait 12 weeks and felt I had to practice this earlier myself.”

Patient: “I felt I was well looked after all the time – the girls took the time to come and talk to you and they were very nice.”

Patient: “I needed a better explanation about the treatment – the side effects, what each drug was for, the reasons for the treatment – it should have been explained to me step by step.”

Patient: “Perhaps the biggest handicap which I faced on leaving hospital was the inability to swallow my own saliva, requiring me to be continually spitting, which I felt very embarrassed about whenever I was in company.”

8.3 PATIENT PREFERENCES

Information should be imparted in a format suitable to the patient and carers.¹³⁵ Written information, such as the leaflets provided by Chest, Heart and Stroke Scotland, should be given to patients/carers to take away with them.

Patient feedback has suggested people experiencing stroke dysphagia appreciate receiving encouragement that their condition may improve.

Stroke patients with dysphagia and their families or carers should be given information to enable them to make informed decisions about management of the swallowing disorder.

Patients/carers should be informed about the full implications of their treatment, the timescale for altered diet or PEG feeding and how often they will be reviewed.

8.4 QUALITY OF LIFE

Research into the pathophysiology and management of swallowing has been clinically led. There is a paucity of data on health outcomes from the patient’s perspective, such as quality of life and patient satisfaction. Some attempts are now being made to redress this with the use of quality of life questionnaires and patient focused outcome measures.¹⁵²

Healthcare professionals should be aware of the importance of the social aspects of eating. An inability to eat normally may affect patient morale, lead to feelings of isolation and could contribute to clinical depression.

8.5 SOURCES OF FURTHER INFORMATION

The following organisations provide support and information for stroke patients and their carers:

British Association for Parenteral and Enteral Nutrition (BAPEN)
www.bapen.org.uk

BAPEN has produced resources and information leaflets for healthcare professionals and patients on tube feeding and the administration of medicines.

Carers Scotland
91 Mitchell Street, Glasgow, G1 3LN
Tel: 0141 221 9141
www.carerscotland.org | Email: info@carerscotland.org

Provides information and advice to carers on all aspects of caring.

Chest, Heart and Stroke Scotland
65 North Castle Street, Edinburgh, EH2 3LT
Tel: 0131 225 6963 | Advice Line: 0845 077 6000 | Fax: 0131 220 6313
www.chss.org.uk | Email: admin@chss.org.uk

Offers communication support through the volunteer stroke service (VSS), the CHSS Advice Line, website and patient information, stroke nurses and young stroke support workers, local stroke support groups, stroke training programmes, Stroke Voices, enabling patients and carers to participate meaningfully in MCNs and other NHS stroke planning groups, backed up by free booklets, fact sheets DVDs and videos.

Different Strokes (Scotland)
53 Elmore Avenue, Glasgow, G44 5BH
Tel: 0141 569 3200
www.differentstrokes.co.uk | Email: glasgow@differentstrokes.co.uk

Helps people of working age who have had a strokes to optimise their recovery, take control of their own lives and regain as much independence as possible by providing a national network of weekly exercise classes, practical, easy to use information, newsletters, interactive website and ‘StrokeLine’ telephone service.

Intowork (Edinburgh)
Norton Park, 57 Albion Road
Edinburgh EH7 5QY
Tel 0131 475 2369 | Fax 0131 475 2379

Employment consultancy and support for people after acquired brain injury

Intowork West Lothian (Livingston)
Braid House, Upper Floor, Labrador Avenue
Howden, Livingston EH54 6BU
Tel 01506 443100 | Fax 01506 443055
Email: iwwl@intowork.org.uk

Princess Royal Trust for Carers
Charles Oakley House, 125 West Regent Street, Glasgow, G2 2SD
Tel: 0141 221 5066
www.carers.org | Email: infoscotland@carers.org

Provides information, advice and support to Scotland’s carers and young carers.

Speakability
1 Royal Street, London, SE1 7LL
Helpline: 080 8808 9572
www.speakability.org.uk | Email speakability@speakability.org.uk

Offers impartial information and support and self-help for people with aphasia and their carers through its helpline, website and training courses, and distributes its own fact sheets, low-cost publications and videos.

8.6 CHECKLIST FOR PROVISION OF INFORMATION

This section gives examples of the information patients/carers may find helpful at the key stages of the patient journey. The checklist was designed by members of the guideline development group based on their experience and their understanding of the evidence base. The checklist is neither exhaustive nor exclusive.

Screening and assessment

• Explain to patients and carers what dysphagia is and what we mean by ‘aspiration’.
• Advise about the assessment process, highlighting the water swallow test, what it is and how long it takes.
• Explain that if the water swallow screening test identifies problems, they will be referred for a full assessment of their swallowing function.
• Give details of when the situation will be reviewed.
• Ensure patients and carers are fully informed of tests (eg, videofluoroscopy of swallow) and outcomes plus reassurance that they will be carried out by fully trained staff.
• Discuss the need to assess the risk of the patient becoming malnourished.

Treatment

• Explain the different types of treatments that are available and ensure patients are aware of how they work. Ensure patients are aware of why they may or may not be getting a particular treatment. Provide sufficient information on why treatments may change.
• Ensure patients and carers have sufficient information to comply with their specific recommendations for safer swallowing (eg, how to modify food textures or specific postures and positioning).
• Discuss the alternative ways of feeding with patients and carers. The possibility of maintaining/improving nutritional status using a nasogastric (NG) tube or a percutaneous endoscopic gastrostomy tube (PEG) tube should be discussed. Inform patients and carers about the full implications of their treatment, the timescale for treatment and how often they will be reviewed.
• Discuss quality of life issues with patients and carers when considering long term PEG feeding:
• risks and benefits
• support required in the community
• social aspects of eating.
• Reassure patients and carers that they will be trained in eating techniques.
• Ensure patients and carers are aware of the importance of maintaining good oral hygiene and provide advice on how to do this.
• Advise patients and carers of the alternative methods for administering medication and discuss any anxieties with them.
• Inform patients that they may be asked to take part in a clinical trial. Explain what this involves and ensure patients and carers are aware of the risks involved

Communication

• Provide information to patients with communication difficulties or cognitive dysfunction in an appropriate manner (eg, use accessible and easy to read information resources and communication aids, as appropriate).
• Acknowledge that patients with communication difficulties can still be fully involved in discussions and making decisions with appropriate communication support.
• Provide encouragement to patients and carers that the condition may improve.
• Ensure that time is made available to discuss the conditions and answer questions.
• Give written information to patients and carers to read in their own time.
• Ensure patients and carers are aware of what help is available in the community for people who have had a stroke, including communication partners and, where appropriate, telerehabilitation services, including speech and language therapy.
• Explain to patients and carers how they can help in their own care and recovery.
• Advise patients and carers of how they can access CHSS stroke services and other stroke clubs.

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