Patient and caregiver perceptions of lymphoma care and research opportunities: A qualitative study

Abstract

Background Although the number of lymphoma survivors has increased, the needs and research priorities of survivors and their caregivers rarely are examined and addressed. Determining the needs and priorities for this population requires an assessment of the attitudes and experiences of patients and caregivers. The authors conducted a qualitative study with lymphoma survivors and their caregivers to determine care needs and research priorities. Methods In the first phase, 2 semistructured focus groups were conducted with 15 lymphoma survivors and their caregivers. In phase 2, a total of 19 individual semistructured telephone interviews were conducted with lymphoma survivors and their caregivers. In both phases, participants discussed cancer experiences and research priorities. All interviews were transcribed. MAXQDA software (version 18.0.8) was used for coding and identifying themes. Results The majority of participants felt disconnected from their clinical care team due to a lack of communication. Focus group participants noted a lack of information regarding diagnoses, treatment, research, and survivorship care. Participants coped with fear through strong social support and fostering relationships with their clinical care teams. Some caregivers felt completely ignored by clinicians. Participants expressed interest in research, but had difficulty finding relevant studies. Several interviewees desired holistic and survivorship‐oriented research and more studies regarding quality of life and mental health. Conclusions The results of the current study identified unmet needs in clinical care and patient‐oriented research, including needs for a focus on quality of life after treatment, communication between patients and the scientific community, and emotional well‐being. Health care professionals can use these data to provide care delivery, supportive services, and research that meets the needs of lymphoma survivors and their caregivers.

Unmet Supportive Care Needs of Patients with Hematological Malignancies: A Systematic Review

“…In particular, two review articles and 27 research articles of nonrelevance to the subject and the inclusion criteria were excluded. From the remaining 25 articles, five were excluded after the full-text assessment[ 11 12 13 14 15 ] because of nonrelevance to the end points of the study. Finally, twenty studies that met all the inclusion criteria were included in this review [ Table 1 ].…”

Perceptions of clinical care and research among African-American patients with lymphoma

“…Despite the limitations in making comparisons across qualitative studies, our findings from two previous studies involving predominantly White patients recruited in the same healthcare environment as the current study are distinct from the findings presented in this population. In the aforementioned studies, White patients expressed broad awareness of available clinical trials and commonly described the emotional impact that their lymphoma diagnosis had on them [34,35]. Several participants in our study stated that their illness did not affect them emotionally at all.…”

“…The semi-structured interview guide was based on previous research in lymphoma populations [17,34,35], literature review, and the expertise of the researchers. Topics discussed included research experience, treatment plans, experiences with their clinical care team, and areas the participants felt researchers need to prioritize.…”

Living with or beyond lymphoma: A rapid review of the unmet needs of lymphoma survivors

“…Survivorship issues are of particular importance to this population with high survival rates 6 . Yet, despite the rapidly increasing number of lymphoma survivors, their needs and research priorities rarely receive attention or are addressed 25,26 . Therefore, a rapid review has been undertaken to assess and assimilate current knowledge 27 …”