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Detecting pain in people with profound learning disabilities

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VOL: 97, ISSUE: 40, PAGE NO: 38

Roberta Astor, MA, Cert FE & HE, RMN, RMNH, RGN, is staff nurse at Solent ICU, St James's Hospital, Portsmouth

Imagine feeling severe pain and not understanding what is happening, nor even being able to ask for help and information. That is frequently the case for people with profound learning disabilities who cannot communicate verbally. Yet when distress and anxiety alter their demeanour, it is often dismissed as 'challenging behaviour' until the illness causing the pain reveals itself in some other way.

Imagine feeling severe pain and not understanding what is happening, nor even being able to ask for help and information. That is frequently the case for people with profound learning disabilities who cannot communicate verbally. Yet when distress and anxiety alter their demeanour, it is often dismissed as 'challenging behaviour' until the illness causing the pain reveals itself in some other way.

The effects of this hidden pain can be distressing and damaging. Sometimes people with learning disabilities exhibit self-injurious behaviour in an attempt to communicate their pain or because of the frustration of not being understood.

Bosch et al (1997), in a study of 25 people with severe learning disabilities exhibiting self-injurious behaviour, found that seven had previously undiagnosed medical conditions. Six of these seven reduced their self-injurious behaviour when given relevant medical treatment.

That study has emphasised the importance of thorough health screening that goes beyond routine physical examination and history-taking.

When acute pain occurs as the result of disease, immediate medical treatment is the priority as it is likely that treating the health problem will remove the pain. But pain assessment for people with profound learning disabilities and multiple disabilities can be problematic.

As Bosch (1997) points out, such patients 'may be accompanied by staff who have only a limited knowledge of the patient'. History-taking must therefore include 'specific questions to the caregiver in an attempt to identify behaviours that may be associated with an underlying medical condition'; and primary care providers 'need to be aware of behaviours that could be indicative of medical concerns, particularly conditions associated with the gastrointestinal tract'.

Craig (1994) says that pain 'is intensely personal and not readily reduced to descriptive language', and that problems of judgement are therefore generated for observers in terms of coming to know and understand another person's pain.

This means that communication skills are vital when assessing the pain of people with profound learning disabilities. It is necessary to be able to interpret non-verbal pain expression as well as being able to describe your observations in a way that is unambiguous to others.

Pain assessment based on non-verbal communication has been successfully used with neonates. Hodgkinson et al (1994) devised a pain assessment test (PAT) based on scores that reflected nurses' perception of the pain experienced by babies. They used a scoring system to measure posture/tonus, sleep pattern, expression, colour, crying, respiration, heart rate, oxygen saturations, blood pressure and the nurse's perception.

This kind of assessment has relevance to assessing pain in non-verbal individuals with profound learning disabilities because it emphasises the observational skills of the nurse rather than the patient's ability to consciously communicate his or her experience.

Certain indicators of pain in prelingual infants can be used in pain assessment for non-verbal adults with low cognitive functioning and associated disabilities. These include the physiological indicators of tachycardia, tachypnoea, hypo/hypertension, tension in posture and changes in colour. Other likely behavioural similarities are crying, restlessness and eye aversion.

Giusiano et al (1995) acknowledge that 'different combinations of disabilities and their severities result in a great diversity in the expression of pain'.

They say that descriptions of children's behavioural characteristics in particular situations, such as those used in paediatric scales, cannot be used with children who have profound learning disabilities and multiple disabilities.

Their use of neural networks enabled them to relate certain combinations of behavioural characteristics to the degree of clinical dependence. They found that for 'not very dependent' children, crying, protection of a painful zone, searching for a pain-easing position, increased involuntary movements and guarding reactions were significant.

For 'quite dependent' children, crying, protection of a painful zone, reaction to painful care, interest in surroundings and increased tonus problems were important.

For 'very dependent' children crying, pain-easing posture, interest in surroundings and increased tonus problems were significant.

However, where a child has extremely reduced motor skills and cannot significantly protect a painful zone or search for a pain-easing position, his or her posture must be carefully examined.

Giusiano et al (1995) caution that their results should be interpreted with care 'as a large number of examples is necessary to go beyond simple descriptive analysis'.

So effective pain assessment for people with profound learning disabilities and multiple disabilities is hard. PATs used for adults and children without neurological impairment include many indicators that cannot be used for people who are unable to verbalise and have difficulty even with non-verbal communication.

However, criteria set by the use of PATs with neonates offer a way forward, and functional analysis of behaviour together with monitoring of physiological signs can lead to the recognition of pain indicators.

Devising a PAT for people with profound learning disabilities
At the Solent ICU at St James's Hospital in Portsmouth, we decided that a relevant PAT could be designed for people with profound learning disabilities and multiple disabilities. We hope that someone will use our ideas in a qualitative action research pilot study and that practitioners will consider them when devising their care plans.

We used research by Giusiano et al (1995) and Hodgkinson et al (1994) to help draw up a baseline/checklist of significant indicators of pain for this patient group. This, together with functional analysis outcomes, can be combined to form an assessment tool.

Functional analysis can cover:

- A review of patient case histories to establish health status and medical treatment past and present;

- Interviews with significant carers to identify possible indicators of pain for their client/relative;

- Initial observation of patients to correlate baseline/checklist indicators with information gathered from the above reviews and interviews;

- A recording tool that incorporates the above correlated information. This tool will take into account context, duration, frequency, intensity and outcome of behavioural and physiological indicators.

Carers should be taught to use the tool to record their observations at times when their patient/relative is indicating that they are in pain. Data can be reviewed at the end of the first week so that any user problems with the tool can be corrected. Reviews should then be carried out at fortnightly intervals over a month. This relatively short time span will prevent people suffering pain unnecessarily.

As recorded data is analysed, together with information from functional analysis, it may reveal that patients have been given inappropriate interventions. Where this happens, recommendations can be given for possible interventions such as health screening and a review of medication.

If data reveals that patients are not indicating they are in pain but are instead communicating other needs, recommendations for a care review should be made.

Data may also reveal that the patient is indicating pain whereby appropriate interventions should be taken to relieve their pain. In this case, carers should be asked to continue observations, using the checklist of behavioural and physiological indicators and recording any interventions. This can be reviewed after two weeks.

The assessment tool could include the following:

- Antecedents - what happened immediately before possible communication of pain?

- Behaviour/physiological indicators - crying or moaning, pain-easing posture, increased tonus problems, change of interest in surroundings, self-injurious behaviour, change to skin colour, increased sweating, hypo/hypertension, tachycardia, tachypnoea. It is hoped that functional analysis will be added to this list. The tool will ask observers to note the duration, frequency and intensity of the indicators, although this should be a short-term measure, as reflection in action should prompt immediate care interventions in response to the client's communication.

- Consequences - what was the outcome for the patient? Observers will be asked to record care interventions and then reuse the checklist. If the intervention included administration of pain-relieving medication, an appropriate interval of time should be given to allow the medication to take effect.

Conclusion
Pain assessment and alleviation are a necessary part of health and social care for people with profound learning disabilities and multiple disabilities. Every effort should be made to help them live a life that is pain-free.

Although pain assessment approaches used for neonates are not completely transferable to adults who have little capacity for communication, either verbally or non-verbally, they do have value, especially if they can be expanded and refined. We hope the work we have done will be a start to this process.

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