The Psychosocial Impact of Being a Caregiver and a Care Recipient During a Hematopoietic Stem Cell Transplant

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Title: The Psychosocial Impact of Being a Caregiver and a Care Recipient During a Hematopoietic Stem Cell Transplant
Authors: Beattie, Sara Margaret
Date: 2014
Abstract: Hematopoietic stem cell transplant (HSCT) is a demanding cancer treatment for HSCT recipients and their caregivers. The thesis objectives were to (a) critically review the literature evaluating the psychosocial impact of being a caregiver to a HSCT patient; (b) evaluate a conceptual framework to examine the individual and dyadic experience of HSCT patients and their caregivers; and (c) gain a better understanding of how couples navigate the HSCT. Study 1 was a comprehensive literature review that demonstrated that caregiver distress is highest pre-HSCT and predictors of caregiver distress include female gender, elevated subjective burden, and higher patient symptom distress. This study also highlighted the need for theoretically driven research that examines reciprocal relationships between HSCT dyads. Study 2 proposed a conceptual model based on equity theory to examine the individual and dyadic experience of HSCT dyads that includes feelings of inequity, patient self-perceived burden (SPB), caregiver burden and distress. A cohort study with 72 HSCT patient-spousal caregiver dyads was conducted pre-HSCT. Questionnaire data was subjected to path analysis. Consistent with the model, pre-HSCT caregiver burden mediated the relationship between caregiver underbenefit and caregiver distress. Patient overbenefit was related to patient SPB, patient distress, and caregiver burden. Overall, the theoretical framework appeared to describe patient and caregivers individual experience of distress pre-HSCT, but did not as clearly encompass the dyadic experience of distress. Study 3 was a qualitative study of patient-caregiver dyads to gain insight on how some successfully navigate, whereas others have difficulties. One year post-HSCT five patient-caregiver dyads were interviewed separately (N =10). Five themes emerged. While all couples adopted patient and caregiver roles, four demonstrated effective adaptation whereas one couple experienced difficulties. Ongoing physical limitations, lack of mutual empathy and relational awareness, limited social support, and poor communication were associated with difficulty adjusting to the HSCT. This thesis provides a greater appreciation of the psychosocial challenges the patients and caregivers are experiencing and highlights that the experience of HSCT recipients and caregivers is unique and intertwined. Importantly, this thesis identifies current knowledge gaps in care of HSCT dyad, discusses its clinical implications and suggests avenues for future research.
URL: http://hdl.handle.net/10393/31443
http://dx.doi.org/10.20381/ruor-6324
CollectionThèses, 2011 - // Theses, 2011 -
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