1. Combining the strengths of UMIST and The Victoria University of Manchester Background Pain “An unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.” (IASP, 1994, p210) Pain in Dementia Pain is often under-identified, under-assessed and under-managed in older people, particularly those with cognitive impairments and limited verbal skills (Defrin et al, 2006). This is mainly due to the inability of the patient to self-report. Patients often use behaviours to communicate the presence of pain, but are largely overlooked by healthcare professionals, particularly within acute care. Aim of the Study To explore how healthcare professionals and carers identify pain in people with severe dementia and limited verbal skills in an acute care setting. This is the first of two phases: Phase 1 = Exploratory (completed) Phase 2 = Main body (awaiting ethical opinion) Ethical approval for phase 1 was obtained by North Manchester Local Research Ethics Committee and The University of Manchester. Phase 1: Aim To examine the experiences of healthcare professionals and carers in identifying the presence of pain in people with advanced dementia and limited verbal skills and how they identify pain in this population. Methods There were six focus groups during which participants were also asked to complete a questionnaire. ● Nurses (2 focus groups) ● Physiotherapists (2 focus groups) ● Carers from the Alzheimer’s Society (1 focus group) ● Students (experienced group) from a postgraduate dementia care programme at a University in North West England (1 focus group). Analysis Framework analysis was performed using Excel. Results Total of 40 participants: Nurses n=10 Physiotherapists n=18 Carers n=9 Students n=3 Pain in Patients with Severe Dementia and Limited Verbal Skills in an Acute Care Setting. Caroline Swarbrick, Dr Cliff Richardson, Dr Kevin Hope and Prof Chris Todd. School of Nursing, Midwifery and Social Work. The University of Manchester. Key Points This study: ● Is the first to highlight the differences in meanings of the same behaviour by healthcare professionals and carers. ● Focuses on the ‘change’ in behaviour, rather than the behaviour itself. ● Is one of the few studies to involve carers in data collection. Pain is a subjective and individual experience, which is under-identified in patients with severe dementia and limited verbal skills. An absence of pain report does not equate to an absence of pain experiences. Behaviours are often used to communicate the pain experience by those who are unable to verbalise. Failure by healthcare professionals to look at behaviours beyond the Behavioural and Psychological Symptoms of Dementia results in pain being over-looked and highly neglected in this population. THEME CATEGORY Anticipation Reaction Habitual Facial expressionsScrewing eyes up Closing eyes Frightened Screwing eyes up Wincing Grimacing Frightened Wincing Grimacing Looking intense Frowning Body movementsStiffness and rigidity Guarding (body part or area) Reluctance to move ('freezing') Moving away Stiffness and rigidity Guarding Rigidity Grabbing body part Freezing (as in not moving) Rubbing Self-comforting Bracing Twitching Tense VocalisationsShouting outShouting Groaning Growling Yelping Screaming Verbal noises (e.g. 'ahh') Whimpering Shouting out Groaning Yelping Screaming Increase in verbalisation Moaning Whinging Singing Changes in traits and personality Withdrawal Lashing out Refusal to eat Withdrawal Lashing-out Crying Aggression (verbal or physical) Violent Laughing / giggling Pushing / pulling at others Pulling at clothes / undressing Refusal to eat or drink Withdrawal Stop other from moving them Crying Crying silently Eyes watering Very emotional Physical aggression Laughing Agitation Pacing Anxious Sleeping problems Being irritable Go very quiet Depressed Lethargic Frustration Loss of appetite Physiological Raise in blood pressure Tachycardia Change in temperature Sweating Change in normal skin colour (e.g. pale or red) CATEGORY DEFINITION: Anticipation = The physical approach of the healthcare professional / carer, without any physical contact, but with social interaction. Reaction = The actual physical interaction between the healthcare professional / carer and the patient. Habitual = Constant or intermittent displays of the behaviour(s) by the patient, but without any social or physical interaction with any other person. Most commonly identified behaviours: ● Withdrawal ● Grimacing ● Screaming ● Sleeping problems ● Guarding Discussion The ‘meaning’ of the behaviours played a central role in the analysis and consequently generated the categories above. Previous research has only discussed pain behaviours in terms of their presence. Identifying pain behaviours by context may assist healthcare professionals in recognising a ‘change’ in the behaviours. References Defrin R., Lotan M. & Pick C.G. (2006) The evaluation of acute pain in individuals with cognitive impairment: A differential effect of the level of impairment. Pain 124, 312- 320. International Association for the Study of Pain (1994) Classification of chronic pain: Descriptions of chronic pain syndromes and definitions of pain terms. International Association for the Study of Pain, Seattle. This ‘change’ in the behaviour is the key concept in identifying potential pain. This provides the basis for the second phase of the study, which will explore the issues of the focus groups in more detail, through semi-structured interviews (n=30) with nurses, physiotherapists and carers around index patients.