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

Abstract

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.

Living in the Shadow: A Qualitative Exploration of the Experience of Being a Caregiver of Patients Receiving Palliative Care for a Life-Threatening, Non-Malignant, Chronic Illness

“…It is also reported that being a caregiver of and caring for a person with a life-threatening, non-malignant, chronic illness can be a burden and negatively influence the caregiver's own everyday life, quality of life, health, and well-being [15][16][17]. It is also well known from cancer research that the emotional handling of illness by the ill person and caregiver does not seem to be independent of each other [18,19] meaning that illness can also be limiting for the caregivers' life and activities [20,21]. Caregiving, although at times experienced as emotionally rewarding [3], might as such be stressful [4] and caregivers are described in the scientific literature as a "hidden patient group" [15].…”

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“…It is also reported that being a caregiver of and caring for a person with a life-threatening, non-malignant, chronic illness can be a burden and negatively influence the caregiver's own everyday life, quality of life, health, and well-being [15][16][17]. It is also well known from cancer research that the emotional handling of illness by the ill person and caregiver does not seem to be independent of each other [18,19] meaning that illness can also be limiting for the caregivers' life and activities [20,21]. Caregiving, although at times experienced as emotionally rewarding [3], might as such be stressful [4] and caregivers are described in the scientific literature as a "hidden patient group" [15].…”