Informal caregiving in Hematopoietic Blood and Marrow Transplant patients

Abstract

Purpose-Hematopoietic cell transplant patients are among the most vulnerable and acutely ill cancer populations (Bevans, Mitchell, & Marden, 2008). The responsibility of caring for the daily physical and psychosocial needs of these patients after transplant is placed mostly on family caregivers (Williams, 2007). The purpose of this descriptive correlational research study was to describe caregiving experiences of 56 caregivers of HCT patients 3-12 months following transplant.Methods & Sample-Patients and caregivers were recruited from two west coast regional transplant programs in the United States. Variables studied were: relationship quality, rewards of caregiving, predictability, role strain, patient function, caregiving activities, and caregiver quality of life (QOL).Key Results-Results indicated that all areas of role strain are significantly negatively correlated with caregiver's QOL. Predictability was negatively associated with problem solving and emotional strain indicating that as the level of predictability of the situation decreases, caregiver strain and problem solving increase. Predictability was positively correlated to caregiver QOL indicating that as the situation is more predictable caregiver QOL increases. Emotional strain, problem-solving strain, and usual care strain were significantly positively related, indicating that emotional strain and problem solving strain increased together. As usual care strain increased, so did problem-solving strain and emotional strain.Conclusions-Suggestions for interventions include assessing and responding to caregiver issues such as emotional strain, problem-solving strain, usual care strain, unpredictability, and QOL. Examples of caregiver-focused interventions include providing timely appropriate information about these caregiver concerns including elements that make the caregiving situation predictable, and incorporating best practices for preventing and minimizing

A scoping review of caregiver burden during allogeneic HSCT: lessons learned and future directions

“…The majority of studies indicated in either their titles or abstracts that caregiver burden was conceptually of interest, however, only four included a comprehensive multidimensional measure of burden (8, 26–28). One additional study examined role strain (29) which is very closely linked conceptually to burden. Instead, 75% of studies examined specific correlates of burden, including anxiety and depression (27, 28, 30–32), quality of life (29, 31), unmet needs (33), fatigue (27, 30, 32), and relationship quality (29, 30, 34).…”

Coming of Age With Cancer: Physical, Social, and Financial Barriers to Independence Among Emerging Adult Survivors

“…The dynamics of caregiving after HCT have been fairly well-documented for younger and older groups. The pediatric literature has focused on parental caregivers (Forinder, Claesson, Szybek, & Lindahl Norberg, 2015; Lindahl Norberg, Mellgren, Winiarski, & Forinder, 2014; Rodday et al, 2012; Virtue et al, 2014); meanwhile, adult studies report on spousal caregivers (Cooke, Grant, Eldredge, Maziarz, & Nail, 2011; Langer, Yi, Storer, & Syrjala, 2010; Meehan et al, 2006; Sabo, McLeod, & Couban, 2013; Wilson, Eilers, Heermann, & Million, 2009). Our findings suggest that the strongly dyadic relationship portrayed in both the pediatric and adult HCT research may not reflect the unique caregiving configurations of young adults.…”

Having a sibling as donor: Patients' experiences immediately before allogeneic hematopoietic stem cell transplantation

“…Those in the immediate circle of patients who undergo HSCT are easily forgotten but are probably in need of better support. It has been shown that being a caregiver of a spouse undergoing HSCT is a heavy burden that entails psychological distress and a need for support (Beattie & Lebel, 2011;Cooke et al, 2011;Sabo et al, 2013).…”