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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.

SUBMITTER: Payne JB

PROVIDER: S-EPMC6819209 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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

Payne Jackelyn B JB Dance Kaylin V KV Farone Monique M Phan Anh A Ho Cathy D CD Gutierrez Meghan M Chen Lillian L Flowers Christopher R CR

Cancer 20190729 22

<h4>Background</h4>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.<h4>Methods</h4>In the first phase, 2 semistr ...[more]

PMID: 31355929

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Project description:Background: Deficits in quality of care for patients with heart failure (HF) contribute to high mortality in this population. This qualitative study aimed to understand the barriers and facilitators to high-quality HF care in Kerala, India. Methods: Semi-structured, in-depth interviews were conducted with a purposive sample of health care providers (n=13), patients and caregivers (n=14). Additionally, focus group discussions (n=3) were conducted with patients and their caregivers. All interviews and focus group discussions were transcribed verbatim. Textual data were analysed using thematic analysis. Results: Patients' motivation to change their lifestyle behaviours after HF diagnosis and active follow-up calls from health care providers to check on patients' health status were important enablers of high-quality care. Health care providers' advice on substance use often motivated patients to stop smoking and consuming alcohol. Although patients expected support from their family members, the level of caregiver support for patients varied, with some patients receiving strong support from caregivers and others receiving minimal support. Emotional stress and lack of structured care plans for patients hindered patients' self-management of their condition. Further, high patient loads often limited the time health care providers had to provide advice on self-management options. Nevertheless, the availability of experienced nursing staff to support patients improved care within health care facilities. Finally, initiation of guideline-directed medical therapy was perceived as complex by health care providers due to multiple coexisting chronic conditions in HF patients. Conclusions: Structured plans for self-management of HF and more time for patients and health care providers to interact during clinical visits may enable better clinical handover with patients and family members, and thereby improve adherence to self-care options. Quality improvement interventions should also address the stress and emotional concerns of HF patients.

Dataset Information

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

Publications

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

Similar Datasets

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