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Good practice for keeping stroke patients and carers informed

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Geraldine Edwards, RN, Staff Nurse.

Stroke Rehabilitation Ward, Queens Medical Centre, Nottingham

People who have had a stroke, their friends and families need timely, accurate and appropriate information as a vital part of their care. Relevant information can help people understand their illness, feel in control, reduce anxiety and uncertainty, and is often the most important factor in ensuring satisfaction with the care they receive (Paul and Fleck, 2001).

From the health-care professional’s point of view, a well-informed person is more likely to co-operate with treatment, have reduced complications, enhanced recovery times and participate in and make well-informed choices (Paul and Fleck 2001; Warner 2000).

Patients and families identify poor communication as the foremost cause of dissatisfaction with hospital care (Audit Commission, 1993). Several national initiatives have addressed this issue, highlighting that information is essential to the stroke patient’s well-being (Royal College of Physicians, 2000; Department of Health, 2001; NHS Executive, 1998). Smaller studies among patients reinforce these findings, revealing patient concerns about the amount and clarity of information they receive (Jarrett and Payne, 1995; Pound et al, 1995).

It is a duty of NHS trusts and stroke care services to ensure that people who have suffered a stroke and their families are kept well informed and to maintain accurate documentation to show this has occurred (RCP, 2000).

Confidentiality

Confidentiality is the first consideration, and the practitioner must identify to whom it is appropriate to give information. Patients should be able to express their wishes about who receives information about their condition. These should be met.

If the patient cannot verbalise their wishes, the health-care professional must use their own judgement and seek other team members’ views.

Sharing information is a two-way process. If the patient discloses personal information to the practitioner they have the right to believe it is given in confidence and will be used only for the purposes for which it was given (Nursing and Midwifery Council, 2002). The practitioner needs to make the patient aware if it going to be made available to other health-care and social service providers. The NMC (2002) proposes providing printed literature in the ward area to inform people of this fact.

The person closest to the patient and thus most likely to receive information about their condition is usually known as the ‘carer’ (RCP, 2000; Wellwood et al 1994; Wiles et al, 1998). The nurse needs to identify this person. However, practitioners should consider how appropriate the word ‘carer’ is. When addressing the patient, it may hold negative connotations relating to physical care and dependency and reinforce a negative self-image.

Health promotion and reducing risk factors

Patients can be anxious about having another stroke and often desire information about reducing risks. Issues can include improving diet, reducing alcohol consumption, increasing physical activity and stopping smoking. While much pre-printed literature is available, feedback from patients and their carers highlights the need for more individualised and targeted information (Wellwood, 1994; Wiles et al, 1998). Specific information is more likely to impact on behavioural changes (Walsh and Shaw, 2000) and makes better use of resources.

Prognosis and diagnosis

Detailed and realistic explanations about recovery are vital in helping people deal with the uncertain effects of a stroke (Wiles et al, 1998), although the inherent uncertainty that comes with this condition cannot always be wholly overcome. The patient and carer may have to learn to accept this over time (Close and Proctor, 1999).

Information about prognosis and diagnosis should be accurate and consider the best available evidence. Making predictions about precise outcomes could leave the practitioner open to criticism if they prove inaccurate.

It is important to maintain patients’ hope and motivation, as this is essential to their rehabilitation. But the truth, according to the National Service Framework for Older People, is that 30% of stroke patients will die in the first month, 35% will still have significant disabilities after one year and 5% will be admitted to long-term residential care (DoH, 2001).

Nurses can overcome these difficulties by focusing on specific ways to treat and manage symptoms, rather than focusing on the diagnosis and prognosis (Wiles et al, 1998). They should address the specific psychological and physical effects of the stroke on the individual, how their symptoms can be managed, what treatments will be given and when.

When discussing diagnosis, prognosis and risk factors with a patient and their carer, the practitioner must be sensitive to verbal and non-verbal cues and have the means to assess their existing knowledge, insight and desire to know more.

The aim of providing information is to build a partnership which ultimately shifts the balance of power away from the health-care professional to the patient (Le-May, 1998). Ideally an ethos that values partnership, choice and individuality is needed. Achieving this means considering individuals’ values and needs, welcoming feedback and inviting questioning (Henderson, 2002; DoH, 2001).

Giving information verbally

Inviting questions from the patient and carer makes staff more approachable and values the patient’s input. Traditionally patients have seen nurses as a good source of information and an important contact at a time of great change. It may be because they are around 24 hours a day, provide emotional as well as practical support, and are seen as accessible (Kirkevold, 1997). They may also need to interpret medical jargon used by others.

Although patients want knowledgeable staff to look after them (RCP, 2000), evidence suggests that the verbal information stroke patients receive from nurses is inadequate (Wiles et al, 1998). Many possible reasons have been put forward, including nurses’ lack of knowledge, wanting to avoid giving bad news, a lack of time or poor communication skills (Wiles et al, 1998).

While information about treatments and future care is important to the patient and carer, people also want to know how these decisions are reached (Wiles et al, 1998). Specific information may be of value, such as the dates and times of scans or therapy sessions, why they are done and what their implications are.

Some stroke units are addressing this issue. Examples include patient-held records for weekly rehabilitation goals and daily timetables for rehabilitation sessions, investigations and treatments. The National Service Framework for Older People (DoH, 2001) recommends that all patients hold a copy of their own plan of care.

Some of these initiatives may be easier to introduce in a designated stroke care unit, and are particularly valuable during rehabilitation. They may be less easy to implement in general wards, where there is less co-ordination between members of the multidisciplinary team, or in acute stroke care wards, where the patient’s physical condition may make it unfeasible.

Also, the information people want and need varies according to their physical and psychological status. People who are stressed or anxious may be unable to retain information (Paul and Fleck, 2001). Those with physical discomfort, for example a headache or painful shoulder, may also find it hard to absorb information. Patients who suffer from post-stroke depression (RCP, 2000) may be apathetic, pessimistic or unable to respond to information in an unemotive way. Those suffering from visuospatial dysfunction may deny the true extent of their disability or disbelieve what they are told (Warlow et al, 2001). This type of physical and psychological factor can affect the person’s ability to process information at any stage of care. After talking to them, practitioners should assess their retention of information and level of understanding. Box 1 provides advice on information-giving.

Empowering the patient

The traditional premise that health-care professionals should decide when to give patients information and at what level should be challenged. Ultimately patients should have ownership of their health, and information should be provided about how to access their health-care records (NMC, 2002). People are becoming better informed, more aware of legal issues and more likely to challenge medical decisions. This increases the need for transparency in all areas of care, including information about benefits, risks, side-effects and possible complications.

Practitioners must be proactive in providing information, as stroke patients may have specific difficulties such as expressive dysphasia or immobility that hinder their ability to ask.

Some patients, particularly older people, may want information but be reluctant to initiate questioning and wait to be invited to participate, believing health-care professionals are more knowledgeable and should control decision-making (Henderson, 2002).

Verbal communication lies at the heart of effective information provision. Initiatives that reinforce verbal information and provide additional psychological support for patients and carers are essential.

For example, doctors’ ward rounds can be held during visiting hours so that carers can be present, self-administration of medicines can be introduced and relatives invited to participate in therapy sessions. In some areas, groups have been set up to provide support and information to patients and carers (Warlow et al, 2001).

Written information

Written information can be particularly valuable because people often forget what they have been told, especially if they are stressed or anxious. Practitioners should consider how to help people whose first language is not English. Is literature available in their language? It may be appropriate to employ the skills of an interpreter.

With strokes it is broadly possible to anticipate information needs. Patients have a relatively long hospitalisation period, and many high-quality booklets, leaflets and other materials are available from voluntary organisations such as the Stroke Association and Different Strokes.

Multidisciplinary teams have access to resources from several specialities, which avoids the need for nurses to produce their own in-house literature. Though some say this is not difficult (Raisbeck 2000), in fact it requires a high degree of expertise and raises funding and resourcing issues.

Patients with communication difficulties

Patients can encounter serious communication and cognitive problems following a stroke. Twenty-five per cent of long-term survivors have severe cognitive impairment, which may include visuospatial neglect, apraxia, and impaired learning and reduced attention. Communication problems may include dysarthria, aphasia, dysphasia or higher-level language impairment associated with non-dominant hemisphere stroke.

The RCP (2000) recommends that every stroke patient with a dominant hemisphere stroke be assessed for dysphasia, using a reliable and valid method, and that every patient with communication difficulties be fully assessed by a speech and language therapist.

When patients have cognitive, concentration or perceptual difficulties, information may have to be simplified, reinforced and restricted to essentials. It may help to use the same format at all times, or to use aids such as calendars, timetables and lists.

Visual field defects may require specific interventions. Hemianopia may make reading difficult and the patient may lose their place easily.

Using a ruler to underline each line can sometimes help. For left visual field loss, putting a brightly-coloured object at the left-hand margin may encourage patients to look at this before starting a new line.

Using large print may also help. Placing a patch over one eye may relieve double vision. The use of picture charts and gestures (Warlow, 1996) may help dysphasia and dysarthria. It is useful to know if the patient is left- or right-handed if they are trying to use writing to communicate.

Communication difficulties that are specific to stroke may be compounded by problems relating to old age, such as visual impairment and hearing loss.

Alternative to speech and writing

Audio information is one alternative for those with visual impairment, and pre-recorded tapes are available on a variety of health topics. In some areas the use of audio recordings has been extended to include conversations between the patient and health-care professionals and doctors’ rounds. A copy is given to the patient and their families, who can then take in and review the information at their own pace (Warlow et al, 2001).

The internet is another valuable source of information. It can also provide on-line support via chat rooms and self-help groups (Pierce, 2002). The need for this type of support may be most apparent after discharge, when other sources of information become inaccessible. The nurse can play a valuable role in directing patients towards reliable websites.

Discharge from hospital

The pre- and post-discharge periods can cause great uncertainty for patients and their carers. Some may worry about coping once home; others may have to address concerns about moving into a long-term care setting.

For most people, moving into an institution involves not only losing their home but also their independence, social status and privacy. This can be exacerbated if the person is not fully involved in decision-making (Clisset and Kopp, 2001). Patients should be made aware of their choices and allowed to determine their own level of acceptable personal risk when considering care options (DoH, 2001).

Patients and carers may want information about the long-term physical effects of the stroke and ways to cope during day-to-day activities. As well as the physical effects, they may worry about psychological effects such as depression and irritability (Close et al, 1999). These demands, as well as role changes within a relationship, may impact greatly on the carer as well as the patient, and they, too, may have questions and concerns. However, these may not become apparent until after discharge when issues such as driving, resuming a sexual relationship or coping with depression become important (Wiles et al, 1998).

Ideally the patient and carer should have access to voluntary organisations such as local stroke clubs. Practitioners should give patients and carers written details of their nearest group before they leave hospital (RCP, 2000).

Written discharge information should be individualised and include contact numbers of key professionals, follow-up arrangements and details of voluntary and statutory services (RCP, 2000) (Box 2).

A formal follow-up service after discharge should be considered, to identify any information needs. This enables the patient to provide feedback on services and sources of information they have encountered, and may be of use to future patients.

Documentation

Effective communication between health-care team members is essential. This includes accurate record-keeping. When core issues such as diagnosis and prognosis are discussed with the patient, accurate documentation helps avoid duplications or omissions. There is a danger of assuming that someone else has taken responsibility for passing on information within a multidisciplinary team. Ideally there should be a continuity of paperwork in all hospital areas, so that as the patient passes through the care system it is clear what they have been told before (RCP, 2000).

Continuity of paperwork eliminates the need to duplicate patient assessment. It reduces the number of times the patient is interviewed and asked the same questions by professionals from different specialties. Within stroke care services, there is a strong drive towards the use of a single multidisciplinary assessment (DoH, 2001).

Box 3 lists sources of information on stroke.

Conclusion

Giving effective information relies on everyone knowing when, why, how and who will do it. It is a two-way process and nurses should encourage questioning and feedback. The information needs of both patient and carer must be clearly identified at different stages of care and information given should be accurate, specific and individualised.

Effective communication and documentation relies heavily on the motivation, attitude and creativity skills of individual staff. There is scope for training to improve communication skills, encourage accurate documentation and promote the benefits to staff of well-informed patients. Efforts to promote good practice need support and appropriate resources.

We cannot underestimate how important this topic is and its impact on patients’ levels of satisfaction with care. Practitioners may need to address challenging issues such as sharing knowledge and relinquishing power, for good practice to ensue.

A stroke patient may have lost control of many aspects of their life. Health-care professionals can help to restore a sense of control and empowerment through effective communication. This means sharing information, working in partnership with the patient and valuing a common vision.

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