Patient and Caregiver Adjustment to Hematopoietic Stem Cell Transplantation: a Systematic Review of Dyad-Based Studies

Langer, Shelby L.; Lehane, Christine M.; Yi, Jean C.

doi:10.1007/s11899-017-0391-0

Cited by 29 publications

(21 citation statements)

References 55 publications

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“…Also, involving survivors' supportive others, are cornerstones of optimal patient-centered care which has become the gold standard of care delivery ( 25 , 26 ). However, only few studies include data provided by partners, and to our knowledge, none has focused specifically on the long-term needs and wishes of alloHSCT-survivors and also included their partners' views in relationship to survivors' needs and care using a qualitative approach ( 27 ). Most studies in this area investigate specific aspects of survivors' and partners' needs such as QoL, focus on partners' own needs or use quantitative methods to explore survivors' and partners' views ( 28 ).…”

Section: Introductionmentioning

confidence: 99%

“This Graft-vs.-Host Disease Determines My Life. That's It.”—A Qualitative Analysis of the Experiences and Needs of Allogenic Hematopoietic Stem Cells Transplantation Survivors in Germany

Parisek

Loss

Holler

et al. 2021

Front. Public Health

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Background: Allogeneic hematopoietic stem cell transplantation (alloHSCT) is the only curative treatment modality for many patients affected by hematologic malignancies. However, it can cause debilitating long-term effects. Understanding the impact of alloHSCT on all aspects of the patients' life is required for optimal survivorship management.Aim: To explore in-depth HSCT-survivors' experiences and needs post-transplant. Partners were included to provide further information on survivors' needs and how care could be improved in this area.Methods: We conducted semi-structured face-to-face and phone interviews with alloHSCT-survivors and their partners referred to a survivorship clinic in Germany. Theoretical sampling was used to recruit participants. Data were analyzed using framework analysis.Results: Thirty-two survivors (consent rate: 100%, response rate: 100%) and eighteen partners (consent rate: 84%, response rate: 72%) participated. Survivors were aged between 25 and 68 years (Median: 48, IQR: 25.3) and partners were aged between 26 and 64 years (Median: 54, IQR: 16, SD: 12.8). The themes emerging from the data involved survivors' needs included (i) the diversity of long-term treatment side-effects; and (ii) time post discharge as a dynamic process with individual peaks of burden. Survivors and their partners also suggested strategies for mitigating these unmet needs, i.e., (iii) transparent communication and patient empowerment; and (iv) improvement in continuity of care system and help with claiming social benefits as cornerstones of optimal survivorship care.Conclusion: To our knowledge, this is one of the first qualitative studies focused on the views of German alloHSCT-survivors on the long-term effects of alloHSCT and the first study integrating the view of their partners. Healthcare providers could better support survivors with managing their symptoms and adhering to their prescribed care by ensuring comprehensive, transparent communication that helps increase survivors' understanding and involvement in their care. Further efforts should be made to provide patient-centered, continuous survivorship care that involves additional support with navigating the healthcare and social service system. Intervention studies are required to test the effectiveness of the suggested strategies.

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Section: Introductionmentioning

confidence: 99%

“This Graft-vs.-Host Disease Determines My Life. That's It.”—A Qualitative Analysis of the Experiences and Needs of Allogenic Hematopoietic Stem Cells Transplantation Survivors in Germany

Parisek

Loss

Holler

et al. 2021

Front. Public Health

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“…Moreover, the patients need to comply with the post-HCT medical regimen, in which caregiver assistance is recommended [ 33 ]. HCT affects all domains of patient and caregiver well-being [ 33 , 34 ], and may require them to cope and activate support. Mutual support and beliefs about the coping ability following HCT may significantly affect their daily emotional well-being.…”

Section: Introductionmentioning

confidence: 99%

Interaction effect of coping self-efficacy and received support in daily life of hematopoietic cell transplant patient-caregiver dyads

Kroemeke

Sobczyk‐Kruszelnicka

2021

PLoS ONE

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Objectives According to the social cognitive theory, social support and self-efficacy may interact with each other i.e. compete or account jointly for better adaptation. This study examined the nature of the interaction between coping self-efficacy and received social support in daily lives of patient-caregiver dyads after cancer treatment. We tested whether the effect of daily fluctuations in coping self-efficacy and received support on daily affect was synergistic (positive jointed effect), compensatory (positive competing effect), or interference (negative competing effect). Design A dyadic daily-diary study conducted for 28 days after hospital discharge following hematopoietic cell transplantation. Methods Coping self-efficacy, received support, and positive and negative affect were measured in 200 patient-caregiver dyads. The analysis was based on the actor-partner interdependence moderation model using multilevel structural equation modeling. Results Statistically significant effect of interaction between daily coping self-efficacy and received support on negative affect was found, although only in the caregivers. In that group, higher daily received support compensated for lower daily coping self-efficacy but had a negative effect when coping self-efficacy was significantly higher than typical. Also, direct beneficial effects of higher daily coping self-efficacy and received support on caregiver positive affect were found. In the patients, higher daily coping self-efficacy was directly associated with better daily affect. Conclusions Diverse effects of daily coping self-efficacy and received social support were found—the interference effect in the caregivers and the main effect of coping self-efficacy in the patients. Higher daily coping self-efficacy and optimal received social support may provide resilience against affect disturbance after cancer treatment.

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“…Recent research demonstrates the importance of addressing patient and caregiver needs at the individual and dyad level; however, the feasibility of dyad engagement with a financial navigation program has not been reported. 14,15 Building on our prior work, we have expanded our oncology financial navigation program to include caregivers and patients with advanced-stage cancer, and have partnered with another organization that provides direct funding to families for nonmedical bills.…”

Section: Introductionmentioning

confidence: 99%

A Pilot Study of a Comprehensive Financial Navigation Program in Patients With Cancer and Caregivers

Watabayashi

Steelquist

Overstreet³

et al. 2020

Journal of the National Comprehensive Cancer Network

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Background: Few studies have engaged patients and caregivers in interventions to alleviate financial hardship. We collaborated with Consumer Education and Training Services (CENTS), Patient Advocate Foundation (PAF), and Family Reach (FR) to assess the feasibility of enrolling patient–caregiver dyads in a program that provides financial counseling, insurance navigation, and assistance with medical and cost of living expenses. Methods: Patients with solid tumors aged ≥18 years and their primary caregiver received a financial education video, monthly contact with a CENTS counselor and PAF case manager for 6 months, and referral to FR for help with unpaid cost of living bills (eg, transportation or housing). Patient financial hardship and caregiver burden were measured using the Comprehensive Score for Financial Toxicity–Patient-Reported Outcomes (COST-PRO) and Caregiver Strain Index (CSI) measures, respectively, at baseline and follow-up. Results: Thirty patients (median age, 59.5 years; 40% commercially insured) and 18 caregivers (67% spouses) consented (78% dyad participation rate). Many participants faced cancer-related financial hardships prior to enrollment, such as work change or loss (45% of patients; 39% of caregivers) and debt (64% of patients); 39% of caregivers reported high levels of financial burden at enrollment. Subjects received $11,000 in assistance (mean, $772 per household); 66% of subjects with income ≤$50,000 received cost-of-living assistance. COST-PRO and CSI scores did not change significantly. Conclusions: Patient–caregiver dyads were willing to participate in a financial navigation program that addresses various financial issues, particularly cost of living expenses in lower income participants. Future work should address financial concerns at diagnosis and determine whether doing so improves patient and caregiver outcomes.

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Patient and Caregiver Adjustment to Hematopoietic Stem Cell Transplantation: a Systematic Review of Dyad-Based Studies

Cited by 29 publications

References 55 publications

“This Graft-vs.-Host Disease Determines My Life. That's It.”—A Qualitative Analysis of the Experiences and Needs of Allogenic Hematopoietic Stem Cells Transplantation Survivors in Germany

“This Graft-vs.-Host Disease Determines My Life. That's It.”—A Qualitative Analysis of the Experiences and Needs of Allogenic Hematopoietic Stem Cells Transplantation Survivors in Germany

Interaction effect of coping self-efficacy and received support in daily life of hematopoietic cell transplant patient-caregiver dyads

A Pilot Study of a Comprehensive Financial Navigation Program in Patients With Cancer and Caregivers

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