Importance of Communication for Family Caregivers of Lung Cancer Patients

Background and Purpose: Despite the important role that informal caregivers play in providing care for the seriously ill, understanding the communication needs of family caregivers has only recently been an area of social work research. This qualitative study explored caregivers’ perspectives regarding their lived experiences in caring for a family member with lung cancer. As our population ages and our healthcare system evolves, growing numbers of caregivers are engaged in providing increasingly complex physical, emotional, social and spiritual care for family members.

Methods: An interpretive phenomenological analysis was conducted with a purposive sample of 10 adult family caregivers. Participants were referred by the intervention nurse following participation in a tailored palliative care educational intervention at an urban cancer center. Interviews were typically one hour long and followed a semi-structured format. The interviews were digitally recorded, transcribed verbatim, and cross-checked for accuracy of content. Following the initial phenomenological coding, the researcher began the interpretive coding process to identify specific themes and meanings. Further reflection (and re-reading) led to the identification of preliminary themes into thematic clusters.

Results: Participants ranged in age from 36-81. Caregivers were predominantly female, (four wives, one fiancé and two daughters). The three males were all husbands. Participants identified time and resource challenges related to their roles as caregivers and noted having limited time or energy to pursue their own quality of life. They reported finding participation in the educational sessions to be useful.

Several key themes related to the importance of communication emerged. Family caregivers noted that outside of the educational intervention, clinician conversations focused almost exclusively with the patient, with little communication directed toward the caregiver (and with seemingly little attention or interest in the impact of the illness on the caregiver). Participants voiced frustration that friends and other family members also tended to talk with them almost exclusively about the patient’s situation, while ignoring the caregivers’ needs and concerns. Participants reported that they found themselves initially guarded when communicating with the patient about the illness, due to a desire to protect and encourage their loved one, but as the patient’s illness advanced, conversations with the patient became more authentic and open.

Conclusions and Implications: Despite the many challenges and burdens associated with caregiving, participants reported finding a sense of meaning and purpose in their caregiving role. Participants reported that clinicians who made the effort to communicate directly with them increased their confidence in their caregiving abilities and was related to increased satisfaction with the provider. Findings from this study support future research into the effectiveness of more nuanced family support programs and underscore the importance of enhanced communication awareness among clinicians.