Caregivers of Patients with Hematological Malignancies within Home Care: A Phenomenological Study

Capodanno, Isabella; Rocchi, Mirta; Prandi, Rossella; Pedroni, Cristina; Tamagnini, Enrica; P, Alfieri; Merli, Francesco; Ghirotto, Luca

doi:10.3390/ijerph17114036

Cited by 15 publications

(17 citation statements)

References 54 publications

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“…Under the diagnosis of advanced cancer, caregivers experienced the emotional cycle of hope and despair toward patients’ deterioration and death 17,18,22,23,28,31–34,36 . As the patients’ physical symptoms and distress deteriorated, caregivers described mood swings similar to a “rollercoaster.” 17,18,22,27–29,34 They were shocked, felt guilty for the diagnosis of advanced cancer, 17,18,24,27,28,30,32,34,36 had fear and worry about the patients’ well-being, 18–20,31 felt helpless about the patient’s suffering, 17,18,21,27,29–31,33,34,36 and had grief about the unavoidable death 18,27,28,30,33,34,36 …”

Section: Resultsmentioning

confidence: 99%

“…[17][18][19]22,23,27,28,30,[33][34][35][36] The common negative health outcomes that FCGs experience include stress, anxiety, depression, sleep deprivation, insomnia, fatigue, weight loss, physical discomfort, and other chronic health conditions. [17][18][19]22,29,34 Psychological changes have been widely reported as mental suffering, which primarily means negative emotions, uncertainty, 17,23,24,[28][29][30][31]33,34 loneliness, 17,21,22,27,29,30 and anxiety. 22,29,30,33 I was very tired, because I had to take care of my husband and my children.…”

Section: Synthesized Findingmentioning

confidence: 99%

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Family Caregivers’ Experiences of Caring for Advanced Cancer Patients

et al. 2022

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Background: Advanced cancers qualify as severe stressors to family caregivers (FCGs), which can negatively impact caregivers' psychological and physical well-being because of their association with high symptom burden, distress, and poor prognosis.Objective: This review aims to synthesize FCGs' experiences of caring for advanced cancer patients using a qualitative systematic review method. Methods: A comprehensive search was conducted in 7 databases from inception until July 2020. Two reviewers independently screened and assessed each study using Joanna Briggs Institute instruments and subsequently undertook the meta-aggregation approach to synthesize findings. Results: A total of 26 studies were included, refined to 37 findings, and integrated into 9 categories and 5 synthesized findings. When a loved one with advanced cancer faced deterioration near the end of their life, FCGs showed a tremendous sense of responsibility for care and concerted great efforts to alleviate their loved one's suffering while lacking effective professional support. Cultural beliefs had a great impact on FCGs' responsibility and role recognition. Ultimately, the caregiving helped FCGs achieve personal transcendence inherent in their unique experience.Conclusions: Caring for advanced cancer patients is a unique, culture-specific experience marked by struggle. Effective professional support, including early palliative care, should be considered to improve the FCGs' experience of caring for advanced cancer patients. Cultural beliefs should be considered to understand and develop

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Section: Resultsmentioning

confidence: 99%

Section: Synthesized Findingmentioning

confidence: 99%

Family Caregivers’ Experiences of Caring for Advanced Cancer Patients

et al. 2022

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“…45, No. 5,2022 Nielsen et al as time passed and the patients' needs became more complex and severe, the caregiving role gradually became more demanding, and their own needs were given less priority: "Somebody asked me: 'Who takes care of you?' Well, no one does.…”

Section: E806mentioning

confidence: 99%

“…3,4 Patient care needs are extensive and complex. Treatment is commonly administered routinely in the outpatient setting or at home, followed by frequent hospital visits, [5][6][7] which may increase the intensity of informal caregiving and the responsibilities placed on the closest caregivers. 8 During treatment, patients are often highly dependent on practical and emotional support from their caregivers, and hematologic illness affects both patients and their caregivers as a unit.…”

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confidence: 99%

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

et al. 2022

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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.

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“…Increasing evidence on psychiatric consequences on caregivers of patients with mental disorders are available, some of which is on PTSD [10][11][12][13][14][15][16][17][18], however less data are available on caregiving burden of patients affected by severe somatic illnesses, mostly reporting on anxiety or depressive symptoms [19][20][21][22]. However, in a public health perspective it is extremely relevant to investigate PTSD in such population.…”

Section: Introductionmentioning

confidence: 99%

Risk and Protective Factors for PTSD in Caregivers of Adult Patients with Severe Medical Illnesses: A Systematic Review

Carmassi

Foghi

Dell’Oste

et al. 2020

IJERPH

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Caregivers of severely ill individuals often struggle to adjust to new responsibilities and roles while experiencing negative psychological outcomes that include depression, anxiety and Post-Traumatic Stress Disorder (PTSD). This systematic review aims to outline potential risk and protective factors for the development of PTSD in caregivers of adult subjects affected by severe somatic, potentially life-threatening illnesses. Twenty-nine studies on caregivers of adult patients affected by severe, acute, or chronic somatic diseases have been included. Eligibility criteria included: full-text publications reporting primary, empirical data; PTSD in caregivers of adult subjects affected by severe physical illnesses; risk and/or protective factors related to PTSD; and English language. Specific sociodemographic and socioeconomic characteristics, besides the illness-related distress, familiar relationships, exposure characteristics, coping style, and support, were identified as relevant risk/protective factors for PTSD. The review limitations are the small number of studies; studies on different types of diseases; studies with same samples. It is crucial to consider factors affecting caregivers of severely ill adult patients in order to plan effective intervention strategies aimed at reducing the risk of an adverse mental health outcome and at enhancing the psychological endurance of this population.

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Caregivers of Patients with Hematological Malignancies within Home Care: A Phenomenological Study

Cited by 15 publications

References 54 publications

Family Caregivers’ Experiences of Caring for Advanced Cancer Patients

Family Caregivers’ Experiences of Caring for Advanced Cancer Patients

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

Risk and Protective Factors for PTSD in Caregivers of Adult Patients with Severe Medical Illnesses: A Systematic Review

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