The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses
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Understanding chronic pain complicating disability: finding meaning through focus group methodology.
Although extensive literature exists on the experiences of people living with chronic nonmalignant pain as a primary condition, little is known about the phenomenon of pain as it is experienced by the person with a chronic disabling condition. This focus group study explored the experience of disability-related pain among 32 people with multiple sclerosis (MS) living in the community. Thematic analysis of transcripts revealed 4 broad conceptualizations of the experience of living with chronic MS-related pain. ⋯ The participants shared how MS had transformed their worlds into ones in which pain and discomfort had become a normal part of everyday life, requiring careful negotiation and planning to undertake activities and prevent exacerbation. It is vital that healthcare providers give people with MS opportunities to talk about pain and pain-related concerns, validate their experiences, and provide interventions that enable self-management. Clinicians are encouraged to challenge their own meanings and expectations about disability-related pain so that therapeutic interventions can be facilitated.
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The goals of this study were to describe the ways in which patients with multiple sclerosis (MS) manage chronic sorrow and to apply this information to the theoretical model of chronic sorrow. This descriptive study involved 38 participants with MS who were experiencing chronic sorrow. Using the theoretical model of chronic sorrow, we applied content analysis to participants' accounts of how they attempted to manage this sorrow. ⋯ Healthcare personnel should acknowledge chronic sorrow as one aspect of psychological distress in MS. Knowledge of patients' experiences of chronic sorrow should be included in the education for neuroscience nurses. Furthermore, it is necessary to develop support interventions for patients with chronic sorrow and their families.