Perceptions of the Provision of Pain Care Services from the Perspective of People with Parkinson’s Disease: A Qualitative Descriptive Study

Anthony Mezzini,1 Saravana Kumar,2 Sue Sharrad,1 Joanne Harmon,1 Marion Claire Eckert1 1Rosemary Bryant AO Research Centre, Clinical and Health Sciences, University of South Australia, Adelaide, South Australia, Australia; 2IIMPACT in Health, Allied Health and Human Performance, University of South Australia, Adelaide, South Australia, AustraliaCorrespondence: Anthony Mezzini, Rosemary Bryant AO Research Centre, Clinical and Health Science, University of South Australia, City East Campus, Playford Building P5-41, North Terrace, Adelaide, South Australia, 5000, Australia, Tel +61 427 820 256, Email [email protected]: Pain is a common, debilitating, and complex non-motor symptom of Parkinson’s disease (PD), often requiring input from healthcare providers across various disciplines for effective management. The aims of this study were to explore the perspectives of people with PD on the provision of pain care services.Methods: A qualitative descriptive research methodology employing a maximum variation sampling strategy was used to recruit people with PD, living in Australia. Data were collected using individual, semi-structured interviews and analyzed thematically. To ensure trustworthiness, the study was conducted and reported in accordance with the Standards for Reporting Qualitative Research guidelines.Results: Eighteen participants (10 female), with a median age of 71 years (IQR 68– 77), shared their perceptions of the provision of PD pain care services. Thematic analysis of interview data resulted in five themes: empathy and understanding (care); acknowledging needs and concerns (listening); explaining diagnoses and treatment options (explaining); expertise in PD (knowledge); and responding to needs with tailored solutions (individualization). Participants’ experiences were influenced by the presence, or the lack thereof, of these elements during clinical encounters. Furthermore, participants noted that these features were expressed to varying extents by different types of healthcare providers (neurologists, general practitioners, allied health professionals, and PD nurse specialists), which led to differing perceptions of the quality of pain care services.Conclusion: The findings show that perceptions of pain care are influenced by a healthcare provider’s ability to address both the emotional and physical needs of PD patients. The variability observed in participants’ experiences highlights the need to ensure that all healthcare providers involved in PD pain care are equipped to deliver empathetic, individualized, patient-centered care that addresses the complex and multifaceted needs of this population.Keywords: Parkinson’s disease, pain, pain care, perceptions, healthcare providers