Abstract
Purpose. The emotional distress caused by pain is one of the most disruptive aspects of living with the condition. This study investigates how individuals experience pain and its consequences for family life and work.
Method. Unstructured interviews, using the ‘Framework’ approach with topic guide, were recorded and transcribed. Patients were sampled for age, sex, ethnicity and occupation from new referrals with spinal pain (SP) to a rheumatology outpatient clinic. Eleven patients (five males and six females) were interviewed in English (n = 9) or their preferred language (n = 2). Interviews were read in depth twice to identify the topics. Data were extracted in phrases and sentences using thematic content analysis.
Results. Emergent themes reported were relationships with: spouses and partners (n = 7), children/parents (n = 6), with other family and friends (n = 7) and work-related issues (n = 11). Patients valued support from family but expressed concerns about causing them worry. Work-related issues included physical and emotional efforts to keep working when in pain, fear of losing employment and financial problems.
Conclusion. Patients expressed anxiety about how their pain affected other family members, regret at losing full work capacity and worry about financial consequences. The lived experience of chronic SP has ramifications that go beyond the individual, reaching into work and social relationships.
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Acknowledgements
We like to acknowledge Kalpa Kharicha and Jayne Neville for help with the interviews and Vidyut Sharma for help with translations.