Between three chairs: Experiences of being a patient with chronic widespread pain in an intersectoral setting in Denmark

Abstract

This study explores how patients with chronic widespread pain experience their contacts with health and social services in Denmark, including general practice, hospitals, and municipality job centers. We analyzed interviews with 10 patients using interpretative phenomenological analysis and found the following four superordinate themes: meeting different attitudes, fragmentation of treatment, the importance of time, and feeling trapped. Findings show that when patients do not feel understood by professionals, they can resort to withdrawal strategies. On an organizational level, patients said that they needed sufficient time in meetings and better coordination of interventions in and between the health and social care sectors.

“My private theory is that it’s all in the head”: Understandings of chronic widespread pain among social workers from municipality job centers in Denmark

“…The study was qualitative and based on interviews with social workers from municipality job centers. It was part of a larger project, which also investigated how people with CWP experience their meetings with social workers, general practitioners and hospital staff (Schultz et al, 2019(Schultz et al, , 2020. During the study, we collaborated closely with a group of social workers; we had a total of 18 meetings with them in order to gain background knowledge of this practice field, and to discuss the findings of the study.…”

“…Literature on social workers' understanding and conceptualization of pain in general shows that in their assessment of pain rehabilitation they mainly focus on patients' relationships, the conditions at the patients' workplace, and their return to work; areas such as stress management, problem solving, and self-care are overlooked (Larsson et al, 2019). People who suffer from chronic pain often feel delegitimized, stigmatized, and rejected in the community by a systematic disconfirmation of their illness perceptions and by a disbelief of the reality of the pain (Quintner, 2020;Telbizovaa and Arnaoudova, 2020); and they often experience a lack of understanding and acknowledgement in meetings with social workers in the job centers (Schultz et al, 2019). However, there is limited research on social workers' understandings of CWP.…”

Online Patient Work

“…According to WHO, continuity of care as a concept "reflects the extent to which a series of discrete health care events is experienced by people as coherent and interconnected over time and consistent with their health needs and preferences" (WHO, 2018, p. 9). It has been documented that patients increasingly experience a lack of continuity of care, for instance, due to encounters with too many different health professionals, too much waiting time, too many cancellations, and ineffective coordination of treatment (Martin, 2010;Schultz et al, 2019).…”

“…WHO also notices that a lack of continuity is a "particular problem for people with chronic or complex conditions" (WHO, 2018, p. 9). A qualitative study of Danes with chronic widespread pain documented that this patient group experienced frustrations when treatment was fragmented or specialised professionals did not coordinate with each other, when time was too limited during consultations, or when they had to wait too long between consultations (Schultz et al, 2019).…”

“…The concept continuity of care is used to describe a situation, where the patient experiences health care in a way which is well-informed, well-coordinated and characterised by relational stability. In Western countries patients increasingly experience a lack of continuity of care, often due to ineffective coordination of treatment (Martin, 2010;Schultz et al, 2019), inadequate sharing of clinical information, and failures of communication (WHO, 2018). Discontinuity of care can be linked both to (1) actually experienced failures (e.g.…”