Survivor and Caregiver Perceptions of Lymphoma: A Qualitative Study

Background: With more than 80% of Hodgkin lymphoma patients being cured and non-Hodgkin lymphoma 10-year survival rates improving, there has been a dramatic growth in the number of lymphoma survivors. Despite these successes, survivors are often left coping with adverse outcomes resulting from cancer treatment. Research examining the needs of lymphoma survivors and their caregivers is needed as this population continues to grow.

Objective: We conducted a qualitative study with lymphoma survivors and caregivers to: 1) determine perceived needs and priorities regarding lymphoma care and 2) examine views, understanding, and priorities for participation in therapeutic and non-therapeutic research studies.

Methods: The qualitative study consisted of two phases: semi-structured focus groups and individual semi-structured telephone interviews. In Phase I, two semi-structured focus groups were conducted in 2017 with lymphoma survivors (n=8) and caregivers (n=7) recruited among attendees of regional and national lymphoma patient education conferences. Participants were asked to discuss their experiences, opinions, and priorities for lymphoma care and research. Results from the focus groups informed the telephone individual interview guide. In Phase II, researchers conducted 19 individual semi-structured phone interviews in the spring of 2018 with lymphoma survivors (n=17) and caregivers (n=2). Individual interviews allowed for an in-depth exploration of the themes garnered from the initial focus groups of lymphoma survivors and caregivers. Individual interview participants were recruited from regional patient education conferences and among current research participants at a university research hospital in the state of Georgia. Focus groups and interviews were recorded and transcribed verbatim. Thematic analysis was used to identify themes emerging from these data. MAXQDA 18.0.8 qualitative data analysis software was utilized to facilitate a constant-comparative coding process to identify the resulting themes.

Results: Most focus group participants were frustrated by a lack of information received regarding diagnoses, treatment options, survivorship-related care, and research opportunities. Survivors and caregivers commonly felt disconnected from their clinical care team due to lack of communication, although some described trusting relationships. In particular, caregivers described their needs as being completely unaddressed in the care process. Participants expressed great interest in research, but were frustrated by the difficulty of finding research studies and results relevant to them. In Phase II, individual interviewees described their own unmet emotional needs and those of their caregivers. Several participants described their desire for more holistic and survivorship-oriented research, including studies to generate guidance for quality of life of cancer patients and survivors, alternative and non-traditional medicine, diet, and emotional or mental health. Emotionally, participants described how debilitating the fear of the unknown can be and the coping strategies they employed to combat this, including reliance on support systems, practicing gratefulness, and fostering trusting relationships with their clinical care teams. Interestingly, participants also experienced benefits from their cancer experiences, most notably strengthened relationships with their loved ones and increased spirituality or mindfulness.

Conclusion: Results gleaned from focus groups and individual interviews provided insight into the unmet emotional and supportive needs of this population. Lymphoma survivors and their caregivers expressed their frustrations with their cancer experiences. These findings identified unmet patient-oriented research needs including research regarding quality of life after cancer treatment, messaging and communication between the scientific community and cancer patients, and emotional well-being. Health care professionals and investigators can utilize these data to provide meaningful information regarding care delivery, supportive services, and lymphoma research that meets the needs of lymphoma survivors and caregivers.