Patient and carer experiences of pain care in an Australian regional comprehensive cancer care setting: a qualitative study

Abstract

INTRODUCTION: Pain is a common and distressing symptom in people living with cancer that requires a patient-centred approach to management. Since 2010, the Australian Government has invested heavily in developing regional cancer centres to improve cancer outcomes. This study explored patient and carer experiences of care from a regional cancer centre with specific reference to cancer pain management. METHODS: A qualitative approach was used with semi-structured telephone interviews. Participants were outpatients at a regional cancer centre in New South Wales who had reported worst pain of 2 or more on a 0-10 numerical rating scale, and their carers. Questions explored experiences of pain assessment and management, and perceptions of how these were affected by the regional setting. Researchers analysed data using a deductive approach, using Mead and Bower's (2000) framework of factors influencing patient-centred care. RESULTS: Eighteen telephone interviews were conducted with 13 patients and 5 carers. Participants perceived that living in a regional setting conferred advantages to the patient-centredness of care via influences at the levels of professional context, the doctor-patient relationship, and consultation. These influences included established and ongoing relationships with a smaller number of care providers who were members of the community, and heightened accessibility in terms of travel/parking, flexible appointments, and ample time spent with each patient. The first of these factors was also perceived to contribute to continuity of care between specialist and primary care providers. However, one negative case reported disagreement between providers and a difficulty accessing specialist pain services. Several participants also reported a preference, and unmet need, for non-pharmacological rather than pharmacological pain management. CONCLUSION: While much research has focused on lack of services and poorer outcomes for people with cancer in rural areas, the Australian regional setting may offer benefits to the patient-centredness of cancer pain management and continuity of care. More research is needed to better understand the benefits and trade-offs of cancer care in regional versus urban settings, and how each can learn from the other. An unmet need for non-pharmacological rather than pharmacological pain management is among the most consistent findings of qualitative studies of patient/carer preferences across settings.