The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review

Beattie, Sara; Lebel, Sophie

doi:10.1002/pon.1962

Cited by 113 publications

(96 citation statements)

References 80 publications

(157 reference statements)

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“…As a result, a dedicated caregiver is required following all types of allogeneic transplantation. This intense support, often referred to as burden, includes caring for the transplant recipient’s physical and emotional wellbeing as well as increasing household duties (Beattie & Lebel, 2011). This burden often forces a shift in roles and responsibilities for the caregiver, frequently requiring them to alter their work schedule and relocate to a temporary residence near the transplant center.…”

Section: Introductionmentioning

confidence: 99%

Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation

Bevans

Ross

Wehrlen

et al. 2016

Stress

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There is growing evidence linking caregiver stress with an increased risk for morbidity and mortality. While the emotional and practical burden experienced by caregivers is well established, the physiological changes that may affect the caregiver’s health are less understood. This study sought to compare self-reported stress, anxiety, and depression along with neuroendocrine and immune markers of stress among adult caregivers of allogeneic hematopoietic stem cell transplantation patients during the acute transplant recovery period to matched non-caregivers controls. Biomarkers and self-reported data were collected at three points during the patient’s HSCT: (1) before transplant, (2) after initial transplantation discharge (±7 days), and (3) six weeks after initial transplantation discharge. Mixed linear modeling was used to examine differences by group and time. Twenty-one caregivers and 20 controls completed all study procedures. The majority of caregivers were female (57.0%) and married (95.2%), with a mean age of 52±11.4 years. Caregiver perceived stress, anxiety, and depression scores were significantly higher than controls (p<0.001) with effect sizes (ES) ranging from 1.37 – 1.80 and they did not change over time (p>0.05) for either group. Caregivers had significantly lower serum cortisol levels than controls at both discharge (p=0.013; ES=0.81) and 6 weeks after discharge (p=0.028; ES=0.71) but exhibited no significant relationship between self-reported stress and serum cortisol. Additionally, caregivers showed a significant inverse relationship between stress and epinephrine levels (rs=− 0.654, p=0.021). These findings support the evidence of the caregiving experience being stressful. The counter-intuitive relationship between cortisol and epinephrine might suggest dysregulation of the HPA axis and central nervous system but additional research on the physiological impact of caregiving is warranted.

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Section: Introductionmentioning

confidence: 99%

Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation

Bevans

Ross

Wehrlen

et al. 2016

Stress

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“…Specific late effects preventive guidelines have been published for BMT survivors [32]. Other areas of BMT survivorship continue to be actively studied, particularly caregiver health [33][34][35], quality of life with GVHD [36][37][38], psychosocial burden [39][40][41], integration of care models [42,43], and health care utilization/financial toxicity [6,44,45]. To integrate aforementioned BMT survivorship issues and current preventive guidelines into clinical practice, a team effort, that can be facilitated by a dedicated LTFU clinic that follows BMT survivors lifelong, is required.…”

Section: Introductionmentioning

confidence: 99%

Lost in Transition: The Essential Need for Long-Term Follow-Up Clinic for Blood and Marrow Transplantation Survivors

Hashmi

Carpenter

Khera

et al. 2015

Biology of Blood and Marrow Transplantation

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Because of expanding indications and improvements in supportive care, the utilization of blood and marrow cell transplantation (BMT) to treat various conditions is increasing exponentially, and currently more than 60,000 BMTs are performed annually worldwide. By the year 2030, it is projected that the number of BMT survivors will increase 5-fold, potentially resulting in one half of a million survivors in the United States alone. As the majority of survivors now live beyond the first 2 years after BMT, they are prone to a unique set of complications and late effects. Until recently, BMT experts assumed responsibility for almost all of the care for these survivors, but now oncologists/hematologists, pediatricians, and internists are involved frequently in offering specialized care and preventive services to these survivors. To integrate and translate into clinical practice the unique BMT survivorship issues with current preventive guidelines, a team effort is required. This can be facilitated by a dedicated "long-term-follow-up (LTFU)" clinic that provides lifelong care for BMT survivors. In this review, we first illustrate with clinical vignettes the need for LTFU and then focus upon the following: (1) types of LTFU clinic models, (2) challenges and possible solutions to the establishment of LTFU clinic, and (3) vulnerable transition periods.

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“…PAC have also been related to feelings of personal growth (Beattie & Lebel, 2011). Personal growth in caregivers has been studied in terms of the positive transformation experienced by the caregiver who has lived through the traumatic experience of ac companying a loved one during a serious illness.…”

Section: Introductionmentioning

confidence: 99%

Positive aspects of caregiving in Spanish caregivers of individuals with acquired brain injury.

Hayas¹,

Arroyabe²,

Calvete³

2014

Rehabilitation Psychology

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The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review

Abstract: There are many limitations to the current research and future directions should include both members of the dyad to evaluate the reciprocal relation between caregiver and patient variables, as well as theory-driven research and research with direct clinical applications.

Cited by 113 publications

References 80 publications

Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation

Documenting stress in caregivers of transplantation patients: initial evidence of HPA dysregulation

Lost in Transition: The Essential Need for Long-Term Follow-Up Clinic for Blood and Marrow Transplantation Survivors

Positive aspects of caregiving in Spanish caregivers of individuals with acquired brain injury.

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