TY - JOUR

T1 - Experiences and Needs of Caregivers of Adult Patients With Hematologic Malignancies During Treatment

T2 - A Qualitative Longitudinal Study

AU - Husted Nielsen, Iben

AU - Piil, Karin

AU - Grønbæk, Kirsten

AU - Kjeldsen, Lars

AU - Jarden, Mary

N1 - Publisher Copyright: Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.

PY - 2022

Y1 - 2022

N2 - BACKGROUND: Family caregivers play a vital role in providing care and support for patients with life-threatening hematologic diseases. Extensive patient care needs and long-term treatment trajectories can negatively affect the health of caregivers. Despite the importance of supporting caregivers, few studies examine family caregivers' experiences and support needs during treatment. OBJECTIVE: To explore the role, experiences, and needs of family caregivers of patients with hematologic malignancies during treatment. METHODS: An exploratory longitudinal qualitative study using serial semistructured interviews with caregivers of hematologic patients was carried out. Data were analyzed using thematic analysis. RESULTS: A sample of 16 caregivers completed 47 interviews. Three themes and 2 subthemes were identified: (1) committing to an unconditional mission while adjusting to a changeable situation: developing resilience over time; (2) being an invisible and inseparable sufferer: cultivating hope one day at a time; and (3) balancing between sacrificing one's own needs and self-care. CONCLUSIONS: During treatment, caregivers face long-term psychological and physical distress, social isolation, and loneliness due to the extended life-threatening situation imposing shifting challenges and needs. Future research should explore the concept of social support in caregiver resilience and investigate psychosocial interventions in hematologic caregivers. IMPLICATIONS FOR PRACTICE: Healthcare professionals should address caregiver needs throughout the patient's treatment and provide new supportive initiatives to lessen the burden of care in hematologic caregivers. Facilitating peer support and deploying a family-oriented approach considering the patient-caregiver dyad as a subject for care have implications for clinical nursing practice.

AB - BACKGROUND: Family caregivers play a vital role in providing care and support for patients with life-threatening hematologic diseases. Extensive patient care needs and long-term treatment trajectories can negatively affect the health of caregivers. Despite the importance of supporting caregivers, few studies examine family caregivers' experiences and support needs during treatment. OBJECTIVE: To explore the role, experiences, and needs of family caregivers of patients with hematologic malignancies during treatment. METHODS: An exploratory longitudinal qualitative study using serial semistructured interviews with caregivers of hematologic patients was carried out. Data were analyzed using thematic analysis. RESULTS: A sample of 16 caregivers completed 47 interviews. Three themes and 2 subthemes were identified: (1) committing to an unconditional mission while adjusting to a changeable situation: developing resilience over time; (2) being an invisible and inseparable sufferer: cultivating hope one day at a time; and (3) balancing between sacrificing one's own needs and self-care. CONCLUSIONS: During treatment, caregivers face long-term psychological and physical distress, social isolation, and loneliness due to the extended life-threatening situation imposing shifting challenges and needs. Future research should explore the concept of social support in caregiver resilience and investigate psychosocial interventions in hematologic caregivers. IMPLICATIONS FOR PRACTICE: Healthcare professionals should address caregiver needs throughout the patient's treatment and provide new supportive initiatives to lessen the burden of care in hematologic caregivers. Facilitating peer support and deploying a family-oriented approach considering the patient-caregiver dyad as a subject for care have implications for clinical nursing practice.

U2 - 10.1097/NCC.0000000000001054

DO - 10.1097/NCC.0000000000001054

M3 - Journal article

C2 - 35067578

AN - SCOPUS:85137125375

VL - 45

SP - E801-E809

JO - Cancer Nursing

JF - Cancer Nursing

SN - 0162-220X

IS - 5

ER -