Caregiver availability and patient access to hematopoietic cell transplantation: social worker perspectives inform practice

Preussler, Jaime M.; Mau, Lih‐Wen; Majhail, Navneet S.; Bevans, Margaret; Clancy, Emilie; Messner, Carolyn; Parran, Leslie; Pederson, Kate; Ferguson, Stacy Stickney; Walters, Kent; Murphy, Elizabeth A.; Denzen, Ellen M.

doi:10.1007/s00520-019-04696-2

Cited by 22 publications

(13 citation statements)

References 42 publications

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“…Children who undergo HSCT therapy experience a long and intense treatment process, which includes not only immunosuppression and intravenous infusion of stem cells but also the risk of complications, all resulting in costly and lengthy hospitalizations of one month or more (Broder et al, 2017;Kaziunas et al, 2016). HSCT for pediatric patients requires identification of a primary caregiver, such as a parent or family member, to provide critical support and oversee the child's health care needs during lengthy hospitalization (Kaziunas et al, 2016;Preussler et al, 2019). This support necessitates high caregiving demands, which can 911358J POXXX10.1177/1043454220911358Journal of Pediatric Oncology NursingLiu et al…”

Section: Introductionmentioning

confidence: 99%

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

Liu

Wen

Weng

et al. 2020

J Pediatr Oncol Nurs

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More than one fourth of primary caregivers report clinically significant distress during the hematopoietic stem cell transplantation (HSCT) process. Providing early support to primary caregivers could reduce caregiver distress and improve the quality of life. This study examined the effects of a three-stage caregiver support intervention designed to reduce caregiver distress and improve quality of life during pediatric HSCT hospitalization. A two-group comparative study was conducted with repeated measures. Participants were randomly assigned to an intervention group or a control group. The intervention group received the support intervention 5 days before the transplant, 14 days after transplant, and 1 week before hospital discharge. The control group received standard support provided in the hospital ward. Measures were obtained at all three time points from self-report questionnaires, which were related to anxiety, depression, perceived stress, and quality of life. Findings indicated that primary caregivers in the intervention group ( n = 22) reported significantly lower levels of perceived stress and higher levels of quality of life than the control group ( n = 23) at 14 days after transplant. In the intervention group, caregiver distress significantly decreased from pretransplant through 14 days after transplant, while over the same period caregiver quality of life significantly increased. The intervention effectively changed the trend of distress and quality of life for caregivers of children during the process of HSCT and hospitalization. The findings of this study suggest that it is important to provide early targeted interventions at critical junctures for caregivers at risk of adverse outcomes.

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Section: Introductionmentioning

confidence: 99%

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

Liu

Wen

Weng

et al. 2020

J Pediatr Oncol Nurs

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“…The difficulties of recovery after transplant, often characterized by severe complications, patients feeling unwell, fatigued, and socially limited due to their immunosuppressed state, make caregiver support essential for day-to-day living (So et al, 2003;Soubani, 2006;Rini et al, 2011;Wulff-Burchfield et al, 2013;Posluszny et al, 2018). Financial support seems essential for patients after alloHCT (Preussler et al, 2019). Our culturally diverse sample showed a uniformly high reliance on social support, although ethnicity and cultural background played a role in providing appropriate concrete supportive acts (e.g., support for adequate nutrition and hydration with buying bread and soft drinks vs. cooking rice with lots of water).…”

Section: Discussionmentioning

confidence: 99%

“…For recipients of an allogeneic hematopoietic cell transplant (alloHCT, commonly used to treat blood and lymphoid cancers), social support is especially critical. Many hematopoietic cell transplant programs require a caregiver to become eligible for transplant (National Marrow Donor Program, 2017;Preussler et al, 2019). However, so far, there is conflicting evidence regarding the impact of social support on survival after alloHCT.…”

Section: Introductionmentioning

confidence: 99%

“…Larger studies relied on marital status as a support indicator, while smaller studies used more elaborate and nuanced measures. Overall, social support was not consistently measured, with marital status likely being too coarse a measure for support, as it ignores other sources than the spouse (such as parents, siblings, or children, Foster et al, 2013;Sato et al, 2018;Preussler et al, 2019). Taken together, the mixed outcomes of the available studies and varying indicators of social support suggest the need for a deeper understanding of the characteristics of caregivers and functions of social support in patients after alloHCT (Beattie et al, 2013;Tay et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

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It Takes a Team to Make It Through: The Role of Social Support for Survival and Self-Care After Allogeneic Hematopoietic Stem Cell Transplant

et al. 2021

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BackgroundSocial support plays an important role for health outcomes. Support for those living with chronic conditions may be particularly important for their health, and even for their survival. The role of support for the survival of cancer patients after receiving an allogeneic hematopoietic cell transplant (alloHCT) is understudied. To better understand the link between survival and support, as well as different sources and functions of support, we conducted two studies in alloHCT patients. First, we examined whether social support is related to survival (Study 1). Second, we examined who provides which support and which specific support-related functions and tasks are fulfilled by lay caregivers and healthcare professionals (Study 2).MethodsIn Study 1, we conducted a retrospective chart review of alloHCT patients (N = 173, 42.8% female, age: M = 49.88) and registered availability of a dedicated lay caregiver and survival. In Study 2, we prospectively followed patients after alloHCT (N = 28, 46.4% female, age: M = 53.97, 46.4% ethnic minority) from the same hospital, partly overlapping from Study 1, who shared their experiences of support from lay caregivers and healthcare providers in semi-structured in-depth interviews 3 to 6 months after their first hospital discharge.ResultsPatients with a dedicated caregiver had a higher probability of surviving to 100 days (86.7%) than patients without a caregiver (69.6%), OR = 2.84, p = 0.042. Study 2 demonstrated the importance of post-transplant support due to patients’ emotional needs and complex self-care regimen. The role of lay caregivers extended to many areas of patients’ daily lives, including support for attending doctor’s appointments, managing medications and financial tasks, physical distancing, and maintaining strict dietary requirements. Healthcare providers mainly fulfilled medical needs and provided informational support, while lay caregivers were the main source of emotional and practical support.ConclusionThe findings highlight the importance of studying support from lay caregivers as well as healthcare providers, to better understand how they work together to support patients’ adherence to recommended self-care and survival.

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“…This finding is consistent with the study of Preussler et al ., in which caregiver availability is an important concern for patients considering and receiving hematopoietic cell transplantation, and maybe a barrier proceeding to hematopoietic cell transplantation when a caregiver is unavailable. [ 41 ]…”

Section: Discussionmentioning

confidence: 99%

The need for renovating patient education in kidney transplantation: A qualitative study

Mahdizadeh

Oskouie

Khanjari

et al. 2020

J Edu Health Promot

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BACKGROUND: Many kidney transplant recipients lack the knowledge, abilities, and support they need for self-care. On the other hand, most kidney transplant centers do not have a well-planned and specific training program for them, and educational interventions for kidney transplant recipients have not been adequately effective. This study aimed to describe strategies for improving patient education in kidney transplantation. MATERIALS AND METHODS: Data were collected through semi-structured individual and group interviews with 24 patients, family members, and health-care staff in one of the main kidney transplant centers in Tehran. Participants were selected purposefully, and qualitative content analysis was used to analyze the data. RESULTS: The main finding emerged from the data was the shift from current patient education program to patient- and family-centered education (PFCE). The strategies to achieve this goal were categorized into four main categories including “continuous patient and family education” (pre- and posttransplant patient education), “facilitating the process” (using new technologies, teamwork education, and patient and family accessibility), “strengthening human resources” (empowerment health-care team, allocation of human resources, promoting staffs' motivation, and updating educational content and materials), and “monitoring and evaluation” (correcting patient education recording, supervising the patient education, and appropriate educational evaluation). CONCLUSIONS: Transforming from the current patient education program to PFCE seems to be essential to increase the effectiveness of patient education in kidney transplant process. To this end, providing continuous patient and family education, facilitating the processes, strengthening human resources, and monitoring and evaluation in health-care organizations conducting the kidney transplantation is necessary.

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Caregiver availability and patient access to hematopoietic cell transplantation: social worker perspectives inform practice

Cited by 22 publications

References 42 publications

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

It Takes a Team to Make It Through: The Role of Social Support for Survival and Self-Care After Allogeneic Hematopoietic Stem Cell Transplant

The need for renovating patient education in kidney transplantation: A qualitative study

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