Struggling to be seen and understood as a person – Chronic back pain patients’ experiences of encounters in health care: An interview study

Abstract

Aim The aim of this study was to describe how patients with chronic back pain experience encounters with health care. Persons with chronic back pain are a stigmatized group often treated based on stereotypes, which may lead to misunderstandings and create frustrated patients and healthcare personnel. Few studies have examined the generic aspects of quality of care in this context. Design A descriptive design with a qualitative approach was used. Methods Nine individual interviews were conducted with chronic back pain patients after admission to an orthopaedic hospital ward. Data were analysed using content analysis. Results The patients’ experiences of healthcare encounters can be described by the theme “Struggling to be seen and understood as a person,” comprising the categories “Lack of access and trust to care,” “A desire to be taken care of and listened to” and “Own strength to handle healthcare situations.”

“No one wants you” – a qualitative study on the experiences of receiving rejection from tertiary care pain centres

“…The finding that informants experienced the rejection as an extra burden to their struggles resonates with previous studies' findings on experiences of distrust, disbelief and pain invalidation in chronic pain patients' consultations within the health care system [34,35]. These experiences have been linked to powerlessness and mistrust [29], to which the informants reports in the current study of resignation, frustration, sadness and anger can be added.…”

“…This finding adds to previous reports of that persons with chronic pain have difficulties accessing health care [10,11,27] and to the literature on experienced injustice among chronic pain patients [28]. For instance, studies have found that this group of patients have experienced refused access to treatments because healthcare providers assumed they would not benefit from them [29], and that persons with neuropathic pain found interacting with the healthcare system as a struggle [17].…”

Stratification of spine patients based on self-reported clinical symptom classes: Evaluation of long-term outcomes and subsequent interventions

“…Management of LBP has remained a challenge, and clinical decision-making for referrals to PT, pain management, and other specialists is currently inconsistent [ 13 , 14 ]. Additionally, patients with LBP have expressed concerns that care is not individualized [ 36 ]. Our study demonstrated differences in the utilization patterns of patients across the symptom classes.…”

‘Engaging on a slightly more human level’: A qualitative study exploring the care of individuals with back pain in a multidisciplinary pain clinic

“…People with LBP manage and negotiate aspects of their pain with healthcare professionals, significant others and social systems (Holloway et al, 2000). Unfortunately, they are sometimes treated impersonally by healthcare professionals (Hadi et al, 2017), who have to follow guidelines and routines and miss listening to individual’s wishes and preferences (Allvin et al, 2019). In a study by Allvin et al (2019), for example, participants with chronic back pain tried to explain their feelings and preferences to their clinicians, but felt obligated to comply and adapt to care requirements.…”

“…Unfortunately, they are sometimes treated impersonally by healthcare professionals (Hadi et al, 2017), who have to follow guidelines and routines and miss listening to individual’s wishes and preferences (Allvin et al, 2019). In a study by Allvin et al (2019), for example, participants with chronic back pain tried to explain their feelings and preferences to their clinicians, but felt obligated to comply and adapt to care requirements. This obligation often made them feel vulnerable, frustrated and not seen nor understood as a person.…”