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

Jackelyn B. Payne; Kaylin V. Dance; Monique Farone; Anh Phan; Cathy D. Ho; Meghan Gutierrez; Lillian Chen; Christopher R. Flowers

doi:10.1002/cncr.32401

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

Jackelyn B. Payne, Kaylin V. Dance, Monique Farone, Anh Phan, Cathy D. Ho, Meghan Gutierrez, Lillian Chen, Christopher R. Flowers

Research output: Contribution to journal › Article › peer-review

13 Scopus citations

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.

Original language	English (US)
Pages (from-to)	4096-4104
Number of pages	9
Journal	Cancer
Volume	125
Issue number	22
DOIs	https://doi.org/10.1002/cncr.32401
State	Published - Nov 15 2019
Externally published	Yes

Keywords

caregivers
focus group
interviews
lymphoma
needs
patient
qualitative

ASJC Scopus subject areas

Oncology
Cancer Research

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10.1002/cncr.32401

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@article{51385161525b4920b81ebfba6c0b74b5,

title = "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.",

keywords = "caregivers, focus group, interviews, lymphoma, needs, patient, qualitative",

author = "Payne, {Jackelyn B.} and Dance, {Kaylin V.} and Monique Farone and Anh Phan and Ho, {Cathy D.} and Meghan Gutierrez and Lillian Chen and Flowers, {Christopher R.}",

note = "Funding Information: Christopher R. Flowers has acted as a paid consultant for the design of clinical trials for AbbVie, AstraZeneca, Bayer, BeiGene, Celgene, Denovo Biopharma, Gilead, OptumRx, Karyopharm, Pharmacyclics/Janssen, and Spectrum for work performed outside of the current study and has received grants to his institution for clinical research from AbbVie, Acerta, BeiGene, Celgene, Gilead, Genentech/Roche, Janssen Pharmaceuticals, Millennium/Takeda, Pharmacyclics, TG Therapeutics, the Burroughs Wellcome Fund, the Eastern Cooperative Oncology Group, the National Cancer Institute, the V Foundation for Cancer Research, and the National Institutes of Health. Funding Information: Supported in part by National Cancer Institute awards 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. Publisher Copyright: {\textcopyright} 2019 American Cancer Society",

year = "2019",

month = nov,

day = "15",

doi = "10.1002/cncr.32401",

language = "English (US)",

volume = "125",

pages = "4096--4104",

journal = "Cancer",

issn = "0008-543X",

publisher = "John Wiley and Sons Inc.",

number = "22",

}

TY - JOUR

T1 - Patient and caregiver perceptions of lymphoma care and research opportunities

T2 - A qualitative study

AU - Payne, Jackelyn B.

AU - Dance, Kaylin V.

AU - Farone, Monique

AU - Phan, Anh

AU - Ho, Cathy D.

AU - Gutierrez, Meghan

AU - Chen, Lillian

AU - Flowers, Christopher R.

N1 - Funding Information: Christopher R. Flowers has acted as a paid consultant for the design of clinical trials for AbbVie, AstraZeneca, Bayer, BeiGene, Celgene, Denovo Biopharma, Gilead, OptumRx, Karyopharm, Pharmacyclics/Janssen, and Spectrum for work performed outside of the current study and has received grants to his institution for clinical research from AbbVie, Acerta, BeiGene, Celgene, Gilead, Genentech/Roche, Janssen Pharmaceuticals, Millennium/Takeda, Pharmacyclics, TG Therapeutics, the Burroughs Wellcome Fund, the Eastern Cooperative Oncology Group, the National Cancer Institute, the V Foundation for Cancer Research, and the National Institutes of Health. Funding Information: Supported in part by National Cancer Institute awards 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. Publisher Copyright: © 2019 American Cancer Society

PY - 2019/11/15

Y1 - 2019/11/15

N2 - 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.

AB - 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.

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KW - needs

KW - patient

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ER -

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

Abstract

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