Navigating the challenge of pain when diagnosed at an early age with Parkinson's disease: an interpretative phenomenological analysis

PurposeDespite the substantial impact of pain in Parkinson's, little attention has been given to understanding how individuals, especially those diagnosed at a younger age, perceive and manage their pain. This research aims to fill this gap by exploring the subjective experiences of pain in this population which is at a higher risk of experiencing pain.Materials and MethodsInterpretative Phenomenological Analysis (IPA) was used as a methodological framework. Non-directive, in-depth interviews were conducted with four French-speaking participants with Parkinson's (diagnosed before 50 years old, with various pain profiles), and analyzed using IPA.ResultsFour major themes emerged: (1) the history of the disease, (2) adaptation to the disease, (3) losses related to pain and (4) strategies deployed to regain control over pain. Results highlight the participants' processes of adaptation, despite the major identity disruption caused by the disease and pain. They also shed light on how the experience of pain is influenced by its relational dimension.ConclusionsOur results offer an understanding of the complexity and diversity of the experience of pain in this population. This complexity contributes to challenges in patients' ability to articulate and represent their pain accurately, advocating personalized, multidisciplinary pain management approaches within this population.