Abstract
BackgroundPain in advanced cancer is complex and multifaceted. In older patients comorbidities and age-related functional decline add to the difficulties in managing cancer pain. The current emphasis on care in the community, and preference by patients with life-limiting disease to receive care in the home, has meant that patients and their family caregivers have become increasingly responsible for the day-to-day management of cancer pain. An appreciation of patients’ and caregivers’ roles and perspectives managing pain is, therefore, fundamental to addressing cancer pain in this setting. Consequently, we sought to explore and describe their perspectives and roles.MethodsA qualitative descriptive approach was used. Semi-structured interviews were conducted with a purposeful sample of patient- family caregiver dyads. Participants included 18 patients aged 65 years and over, with advanced cancer, receiving palliative care at home, and 15 family caregivers. The interview data were analysed using thematic analyses. Strategies were used to establish rigour.ResultsTwo main themes were identified. The first theme, "Communicating the pain", represented pain assessment and incorporated four subthemes in which participants described: their roles in pain assessment, the identification and expression of pain, and the communication of pain between patients and caregivers. The second theme, "Finding a solution", comprised of four subthemes that reflected participants’ roles and approaches in controlling pain; as well as their beliefs about cancer pain control, experience with side effects, and perspectives on the goals of treatment.ConclusionsThe findings support other studies in identifying knowledge and attitudinal barriers to pain control; while adding to the literature by highlighting practical and relational barriers faced by older patients and their family caregivers. Health care professionals can do much to address the barriers identified by: correcting misconceptions regarding cancer pain, facilitating the communication of pain within dyads, and ensuring that patients and family caregivers have the knowledge, skills, and ability to assess and implement pain treatment strategies. This support needs to be individually tailored to meet the ongoing needs of both members of the dyad so that the shared goals of pain management are accomplished.
Highlights
Pain in advanced cancer is complex and multifaceted
The current emphasis on care in the community, and preference by patients with life-limiting disease to receive care in the home [11], has meant home is increasingly the setting for cancer pain management. In this context pain management is overseen by health care professionals, it is patients and their family caregivers who are primarily responsible for the day-to-day management of cancer pain [12,13,14]
From an analysis of the data two overriding themes were identified; “Communicating the Believing in pain control. Further restricting their role was the finding that patients were not always forthcoming with information regarding their pain, and caregivers were sometimes not included in discussions with health care professionals visiting the home
Summary
Pain in advanced cancer is complex and multifaceted. In older patients comorbidities and age-related functional decline add to the difficulties in managing cancer pain. The current emphasis on care in the community, and preference by patients with life-limiting disease to receive care in the home [11], has meant home is increasingly the setting for cancer pain management. In this context pain management is overseen by health care professionals, it is patients and their family caregivers (hereafter caregiver) who are primarily responsible for the day-to-day management of cancer pain [12,13,14]. Understanding patients’ and caregivers’ roles and experiences managing cancer pain is, fundamental to addressing the pain needs of older patients with advanced cancer in this setting, and for identifying barriers and challenges to effective pain control
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