Digest Commentators: Beth Edwards, PhD Candidate, Dalla Lana School of Public Health, University of Toronto & Lynn R Gauthier, Postdoctoral Fellow, ELLICSR Health Wellness and Cancer Survivorship Centre, Princess Margaret Cancer Centre, University Health Network
With the aging population and focus on community-based care, more older patients and their caregivers will manage cancer pain at home. Age-related comorbidities and functional decline add to pain management complexity. Little is known about how older patients and caregivers navigate these challenges. Therefore, McPherson et al. conducted a study to describe the roles and perceptions of older cancer patients and their caregivers managing cancer pain at home.
Using a qualitative descriptive approach with an inductive thematic analysis, they analyzed data collected through semi-structured interviews with 18 patients and 15 caregivers. Although the goal was to understand pain management among patient-caregiver dyads, interviews were primarily conducted with patients and caregivers separately. Patients were 65 years of age or older, had advanced cancer, experienced pain for at least 1 month, and received home palliative care. Most patients required assistance with daily activities and had moderate pain. Most caregivers lived with and were partners of the patients they cared for.
A qualitative approach is especially suited to understanding such a complex phenomenon. McPherson et al. clearly outlined their methods including interview guides, detailed analytic description, and appropriate references. As such, this article is appropriate for those interested in qualitative research approaches, as well as those interested in understanding the challenges of pain management among older patients and caregivers.
Analysis revealed two main themes related to pain assessment and management, with four subthemes each. Briefly, in one theme, patients and caregivers discussed challenges related to “adopting roles in pain assessment”. While patients adopted the lead role, they were not always forthcoming about reporting pain. Caregivers adopted the communication role when patients did not communicate with healthcare professionals. Elsewhere within this theme, patients described the multidimensional experience of pain. Some did not use the word “pain”, but used words like “discomfort”, “cramp”, and “ache”. They also described their reluctance to burden caregivers, especially when caregivers had health challenges themselves. Caregivers described verbal and nonverbal cues and relied on their personal history with the patient to assess pain. Some caregivers’ assessments were impacted by their own pain and health history. In the other theme, caregivers described patients’ desire to remain in control of pain management, but age-related impairments and treatment side effects made self-management difficult. Patients described reluctance towards pharmacological management, whereas caregivers remained open to pharmacological approaches. Some patients described a desire to sacrifice pain control to avoid analgesic side effects. Both patients and caregivers discussed fears of addiction and beliefs that pain is an inevitable consequence of aging and cancer. Here, an interesting dyadic analysis revealed that patient and caregiver pain management goals were not always congruent. Cognitive impairment was identified throughout as a challenge to pain assessment and management.
These data outline for healthcare professionals the challenges faced by older patients and their caregivers managing pain at home, including the impact of functional limitations, cognitive impairment, and the potential impact of caregivers’ own health challenges. As a result, this study clearly identifies an urgent need for education to address fears of addiction and side effects, and beliefs about the inevitability of pain as well as future research to further elucidate dyadic coping with cancer pain across the adult lifespan.
McPherson, C.J., Hadjistavropoulos, T., Devereaux, A., Lobchuk, M. (2014). A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home. BMC Palliative Care, 13(39). http://dx.doi.org/10.1186/1472-684X-13-39
Journal website: http://www.biomedcentral.com/bmcpalliatcare
Author website: http://www.health.uottawa.ca/sn/personnel/cmcpherson.htm
CAPO Digests are summaries of recent psychosocial oncology research which have been published in peer-reviewed journals in and out of the main psychosocial oncology outlets that may be of interest to CAPO members. We hope you enjoy these Digests. If you are interested in submitting a Digest please contact the CAPO office at email@example.com