Living with Long-Term Pain after a Stroke

Abstract: The general aim of this thesis was to classify and describe long-term pain two years after a stroke and to describe the experiences of pain, and the consequences it has on the persons’ lives. The studies were conducted from a multidimensional perspective on pain, combining quantitative and qualitative methods. Three types of long-term pain were classified and described among the 43 participants included, aged 33-82 years. These were central post-stroke pain, nociceptive, mainly shoulder pain, and tension-type headache. Pain onset, within one to six months in most of the cases was after discharge from the hospital. Continuous pain or pain almost every day was reported by nearly two-thirds. The pain was mostly described as troublesome, annoying and tiring in all pain groups. The rating of pain intensity revealed individual differences among the participants within the pain groups. In addition to long-term pain, the participants suffered several impairments and nearly half of them were dependent on others, and two-thirds on assistive devices. Several coping strategies were described, most often problem-focused. Their health-related quality of life was decreased, mostly related to their long-term pain and physical impairments. Their experiences of caring revealed the need of improvements in knowledge about longterm pain, attention and understanding among the professionals, and continuity in the contacts.