About this item:

62 Views | 36 Downloads

Author Notes:

Professor Christopher R. Flowers, Department of Hematology and Medical Oncology, Winship Cancer Institute, Health Science Research Building, 1760 Haygood Drive NE, 2nd Floor, W220, Emory University, Atlanta, GA 30322, Ph: 404-778-3942, crflowe@emory.edu

J.P. developed the protocol, conducted interviews and focus groups, analyzed data, contributed to manuscript writing, and approved the final manuscript. K.D. conducted phone interviews, analyzed data, transcribed interviews and focus groups, contributed to manuscript writing, and approved the final manuscript. M.F. helped develop the protocol, conducted focus groups, analyzed data, contributed to manuscript writing, and approved the final manuscript. A.P. helped develop protocol, conducted focus groups, analyzed focus group data, contributed to manuscript writing, and approved the final manuscript. C.H. conducted interviews, transcribed interviews, contributed to manuscript writing, and approved the final manuscript. M.G. conceived the project, approved the protocol, contributed to manuscript writing, and approved the final manuscript. L.C. conducted interviews, analyzed data, and transcribed interviews, contributed to manuscript writing, and approved the final manuscript. C.F. conceived the project, developed the protocol, analyzed data, contributed to manuscript writing and editing, and approved the final manuscript.

Conflicts of Interest: None

Subjects:

Research Funding:

Research reported in this publication was supported in part by National Cancer Institute award number K24CA208132 and U01CA195568. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Keywords:

  • Science & Technology
  • Life Sciences & Biomedicine
  • Oncology
  • caregivers
  • focus group
  • interviews
  • lymphoma
  • needs
  • patient
  • qualitative
  • NON-HODGKINS-LYMPHOMA
  • CANCER SURVIVORS
  • SOCIAL SUPPORT
  • NEEDS
  • COMMUNICATION
  • EXPERIENCES
  • AWARENESS
  • SOCIETY
  • TRIAL
  • LIFE

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

Tools:

Journal Title:

CANCER

Volume:

Volume 125, Number 22

Publisher:

, Pages 4096-4104

Type of Work:

Article | Post-print: After Peer Review

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.
Export to EndNote