Everyday living with persistent pain in old age. Pain and its alleviation as perceived by functionally dependent older persons and by staff

Abstract: This thesis explores everyday living with persistent pain from the perspectives of functionally dependent older persons in pain and of staff. A combination of qualitative and quantitative methods was chosen. Data were collected using interviews and tools for assessing pain. The first data collection included 66 persons (65+) living in sheltered accommodation and their corresponding contact nurses. Seventy-five per cent of those who managed to perform a self-assessment of pain were in pain frequently. The staff assessed frequent pain in 57% of persons with impaired cognition. Agreement between assessment by the staff and the older persons was no higher than moderate, in general pain characteristics were underestimated and those with impaired speech were at risk of not having their pain identified. Pain recognition was interpreted as an interactive communicative process that could be facilitated or hindered by characteristics of both the older persons and the staff. Among cognitively impaired older persons, pain was mainly identified by verbal, para-linguistic, facial, and bodily expressions and immobility was viewed as the most common cause of pain. Another data collection included staff (n=52) and persons (n=94, 75+) with persistent pain living in special accommodation or receiving home help in their ordinary homes. One group of older persons felt competent and were proud of their ability to manage life. Others felt confident and serene despite a high level of dependence due to pain. Resignation and feeling sad or misunderstood and inadequately treated characterised other groups. How the pain restricted their daily life was often considered more problematic than the pain itself. The pain was mainly handled by medication, distraction and a balance between rest and mobility. In the 50% of the cases, the older persons had taken prescribed medication although they perceived the effect as not helpful or only somewhat helpful. Non-pharmacological pain-specific methods were seldom employed. A tendency for staff to perceive activities to alleviate pain as more helpful than older persons was marked for ‘medication’, and ‘talking about pain.’ The staff perceived older persons with pain as a heterogeneous group. When the pain was perceived as ‘real’, ‘endured’ and ‘inarticulate’, caring was satisfying, while caring for persons with ‘exaggerated’, ‘care-inflicted’, ‘concealed’ and ‘self-caused’ pain was demanding or frustrating. How the staff perceived the older persons’ pain seemed to influence how the pain was handled. Findings demonstrate that recognising and alleviating older person’s pain is complicated and requires that the older persons’ perspectives are found out and considered.