Academic journal article Visible Language

Designing a Questionnaire to Gather Carer Input to Pain Assessment for Hospitalised People with Dementia

Academic journal article Visible Language

Designing a Questionnaire to Gather Carer Input to Pain Assessment for Hospitalised People with Dementia

Article excerpt


We describe development of a questionnaire to elicit pain symptoms and experience, for use by people with dementia or their carers, at hospital admission. The questionnaire provided contextual information to support professionals' use of the Abbey Pain Scale, a validated tool used by nursing staff internationally. Appropriate information and physical design were required in order, not only to create an approachable questionnaire for patients and carers, but also to ensure fit with hospital processes. Fit with hospital process had significant influence on the final form of the questionnaire, compromising some aspects of design for patients and carers, but this compromise was considered essential to ensure pain management procedures were supplemented by wider, contextual information.

anagement of pain symptoms in hospitalized, older people can be compromised by communication difficulties, particularly if patients' ability to describe their experience is limited by conditions such as dementia (Horgas, Elliott and Marsiske 2009; Manias 2012). Coe and Miller (2000) have highlighted the importance of both relatives and nursing staff In mediating communication between physicians and older patients. However relatives are rarely able to remain with a patient all the time they are in hospital and so their contribution to such communication can be limited. Manias (op clt.) has described situations where pain symptoms may go untreated because nursing staff mistakenly attribute expressions of pain to delirium or dementia. Such attribution may be more likely if no family carer, with knowledge of the patient, is available to give clarification. Furthermore delirium and dementia symptoms can, themselves, be exacerbated by pain, increasing the difficulty of recognizing and assessing pain symptoms (Herr and Garand 2001 ).

In this context of potentially limited communication between patient and hospital staff and practical constraints on how much a carer can contribute we describe development of a questionnaire to be used as a communication tool for family carers of people with dementia. The aim of the questionnaire (which might be completed by a family carer on their own or in consultation with a member of hospital staff) was to elicit information from carers about their relative's expe- rience of and response to pain. This Information would then be available to hospital staff to help disambiguate pain symptoms in patients who were unable to communicate their experience them- selves and, hence, support appropriately targeted pain relief. Note that the purpose of the research described In this paper Is the development of a viable questionnaire, the effectiveness of which (on pain relief procedures and outcomes) could then be assessed through subsequent clinical trial.

The setting for this study was a large (800 bed) district general hospital in the UK. The hospital had made effective pain relief for people with dementia a clinical priority, in line with guidance from the UK Department of Health to reduce inappropriate antl-psychotlc prescription (Banerjee and Owen 2009, ch. 5). Systematic monitoring of pain symptoms had been newly instigated, using the Abbey Pain Scale (Abbey et al. 2004), a professional monitoring tool, designed for assessment of pain symptoms In people with dementia. The scale is used internationally and, simple and quick to use, is recommended by UK national guidelines for assessment of pain in older people with impaired cognition/communication (Royal College of Physicians 2007). Used at regular intervals, the scale (Figure 142) tracks and assigns a score to pain symptoms, along six dimensions, In order to guide prescription of pain relief.

As part of the introduction of the Abbey Scale, the hospital's Pain Team conducted an education programme for care staff who were Implementing it and became aware of potential misinterpretation of patients' pain symptoms, similar to that described by Manias (op cit. …

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