The Experience of Caring for a Spouse Undergoing Hematopoietic Stem Cell Transplantation Opening Pandora's Box
ABSTRACT : Hematopoietic stem cell transplantation (HSCT) is a major treatment option for patients with hematological malignancies. Spouses are frequently asked to provide physical, psychological, and emotional support in both the acute care and outpatient settings, yet few studies have explored the nature and implications of their caring work beyond the acute care phase.
: The aims of this exploratory study were to (1) highlight the effect of caregiving on the psychosocial health and well-being of spouses of HSCT recipients; (2) highlight the level of caregiver burden, depression, and/or secondary trauma experienced by spousal caregivers of HSCT recipients; and (3) identify when spouses are most vulnerable to caregiver burden, depression, and/or secondary trauma. METHOD/METHODOLOGICAL APPROACH:: A mixed-method exploratory study was undertaken. Participants were followed over 1 year from immediately before transplantation to 1 year after transplantation. Descriptive statistics and thematic analysis highlighted the effect of spousal caregiving on psychosocial health and well-being.
: Eleven spouses participated in the study. Caregivers experienced caregiver burden, psychological distress (depression), and risk for secondary traumatic stress at 3 points in time over 1 year from before transplantation to 1 year after transplantation.
: Findings suggest that spouses may be at risk for adverse psychological effects as a result of their role in providing care for a partner undergoing HSCT.
: Nurses need to integrate regular psychosocial assessments of caregivers to recognize the early signs of distress and intervene to support and promote psychosocial health and well-being.
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ABSTRACT: Waiting is an inevitable reality for cancer patients and their families. To date, a paucity of research has explored the meaning given to the emotional experience of waiting by spouses who provide care for cancer patients. The purpose of this discussion article is to introduce readers to the concept of liminality as a mechanism to enhance understanding of the experience of waiting. Liminality may be thought of as the space betwixt and between. The findings from a mixed-methods exploratory study that explored the experience of caregiving among spouses of hematopoietic stem cell transplant recipients are used to illustrate the experience of waiting. Waiting is discussed from the perspective of disembodied (clock/calendar time) and embodied (how waiting is lived) time. Liminality is introduced as a transitional and transformational phase where individuals create meaning out of the experience of waiting. Although waiting may be a universal experience, our understanding of the experience within the context of cancer remains a poorly understood phenomenon. Lost in disembodied time are the myriad and complex nuances of the individual experience. Conceptualizing waiting as embodied and liminal may offer an alternative perspective that may enhance our understanding of the experience particularly as it applies to caregivers of cancer patients. By enhancing our understanding of the experience of spousal caregiving, in particular waiting, effective interventions may be developed to better support spousal caregivers across the cancer care continuum to reduce psychosocial distress.Cancer nursing 05/2014; 37(3):184-188. DOI:10.1097/NCC.0b013e31828ee266 · 1.93 Impact Factor
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ABSTRACT: Abstract Haematological malignancies are often treated with haematopoietic stem cell transplants (HSCT). The disease and its treatment are challenging and life threatening, as they not only affect the recipients, but also their families. This review highlights the available data on the psychological, psychiatric and social impact of these illnesses and their treatment on recipients and families. There are robust data that correlate HSCT with emotional distress, as emotional and physical functioning significantly affect quality of life. Psychiatric co-morbidity including anxiety, depression, adjustment and post-traumatic stress disorder, delirium and cognitive deficits have been reported at different stages in the transplant process. This review will highlight the psychosocial and clinical research findings relevant to HSCT patients and will summarize recommendations for future psychosocial research in this population.International Review of Psychiatry 02/2014; 26(1):74-86. DOI:10.3109/09540261.2013.866075 · 1.80 Impact Factor