Beyond depression, anxiety and post‐traumatic stress disorder symptoms: Qualitative study of negative emotional experiences in hematopoietic stem cell transplant patients

Amonoo, Hermioni L.; Brown, L. David; Scheu, Carlyn F; Harnedy, Lauren E.; Pirl, William F.; El‐Jawahri, Areej; Huffman, Jeff C.

doi:10.1111/ecc.13263

Cited by 13 publications

(13 citation statements)

References 41 publications

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“…The latest report released by the IARC shows that the number of people suffering from cancer in the world is growing rapidly, with 18.1 million new cancer cases in 2018 [ 21 ]. Cancer is on its way to becoming the leading cause of death and illness in the world.…”

Section: Discussionmentioning

confidence: 99%

Study on the Conduction Analysis and Blocking Intervention Scheme of Emotional Disorders between Cancer Patients and Their Families

Zhang

Song

et al. 2022

Computational and Mathematical Methods in Medicine

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Objective. To analyze the transmission and blocking intervention scheme of emotional disorders between cancer patients and their families. Methods. About 150 patients with cancer and 150 family members with mood disorders treated in a tertiary hospital in North China from March 2021 to Octobor2021 were enrolled. The patients were randomly assigned into control group and study group. The control group received routine intervention, and the study group received the diagnosis, intervention, and treatment strategies of doctor-patient-affective disorder. The factors related to the transmission of emotional disorders between cancer patients and their families were analyzed, and the alterations of anxiety, depression, social support, and satisfaction of the two groups were compared under different blocking intervention schemes. Results. (1) Univariate analysis indicated that there were significant differences in family age, family income, sex, location of tumor, course of disease, TNM stage, somatic symptoms, and the incidence of anxiety and depression. There exhibited no significant difference between the gender of the family, the years of education of the family, the occupational status of the family, the relationship between the family and the patient, the mode of payment of the patient’s medical expenses, the age of the patient, the mode of treatment of the patient, the degree of knowledge of the disease, and the incidence of anxiety and depression ( P > 0.05 ). The anxiety and depression status of relatives were taken as dependent variables, and the age of family members, family income status, sex of patients, location of tumor, course of disease, TNM stage, and physical symptoms of patients were taken as independent variables, and the data were analyzed by Logistic regression analysis. Logistic regression analysis indicated that family income, tumor location, disease course, TNM stage, and somatic symptoms were the risk factors of anxiety and depression in relatives. (2) Comparison of social support status and intergroup, the objective support, subjective support, support utilization, and total score of social support in the study group were higher compared to the control group. In terms of the depression score before intervention, there exhibited no significant difference ( P > 0.05 ), but after intervention, the depression score of the two groups decreased, and the depression score of the study group was lower compared to the control group before intervention, 1 week, 2 weeks, 3 weeks, and 4 weeks after intervention ( P < 0.05 ). In terms of the anxiety score before intervention, there exhibited no significant difference ( P > 0.05 ), but after intervention, the anxiety score of the two groups decreased, and the anxiety score of the study group was lower compared to the control group before intervention, 1 week, 2 weeks, 3 weeks, and 4 weeks after intervention ( P < 0.05 ). Comparison of the satisfaction between the two groups and the study group was very satisfied in 56 cases, satisfactory in 14 cases, and general in 5 cases, and the satisfaction rate was 100.00%. The control group was very satisfied in 35 cases, satisfactory in 23 cases, general in 12 cases, and dissatisfied in 5 cases, and the satisfaction rate was 93.33%. The satisfaction of the study group was higher compared to the control group ( P < 0.05 ). Conclusion. Family income, tumor location, course of disease, TNM stage, and somatic symptoms are the risk factors of anxiety and depression in relatives. After establishing the diagnosis, intervention and treatment strategies of doctor-patient-affective disorder, the emotional disorder of family members of cancer patients, is significantly promoted, and the intervention satisfaction is high, so the scheme is worth promoting.

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Section: Discussionmentioning

confidence: 99%

Study on the Conduction Analysis and Blocking Intervention Scheme of Emotional Disorders between Cancer Patients and Their Families

Zhang

Song

et al. 2022

Computational and Mathematical Methods in Medicine

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“…Even patients who recall being warned about transplant challenges may still be surprised by and unprepared for the severity of complications, their duration, and the effects on their lives (15)(16)(17). Inconsistencies between expectations and experiences can have harmful effects on individual well-being and relationships (14,18,19). Support finding meaning in the BMT experience is desired by patients (20) and critical for effective coping (21).…”

Section: Introductionmentioning

confidence: 99%

Patient and Provider Perspectives on the Impacts of Unpredictability for Patient Sensemaking: Implications for Intervention Design

Fadem

Mikesell

2022

Journal of Patient Experience

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Patients facing situations with significant unpredictability are met with challenges to expectation formation and preparation. One such context with unpredictable clinical outcomes is bone marrow transplant (BMT) for patients with hematologic malignancies. To understand the experience of unpredictability and opportunities for intervention, semi-structured interviews with patients who had received BMT (n = 7) and transplant providers (n = 8) were conducted. Thematic analysis revealed conflict between the necessity of expectation formation and the unpredictability of transplant. Providers described a tension between adequately informing patients of potential risks of transplant and presenting so much information as to create unnecessary anxiety in patients. Patients described issues with outcome unpredictability (not knowing what particular complications they would experience) and temporal unpredictability (not knowing when complications would appear). Patients struggled to make sense of unexpected complications and resulting limitations post-BMT and plan for the future amid the nonlinear recovery timeline. The challenges of unpredictability warrant a support solution that enables patient sensemaking in their evolving illness journey and facilitates adaptation to new circumstances.

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“…Conducting qualitative research can further help discover areas for improvement of care and inform the development of interventions to help survivors better cope with their symptoms (30,31). Yet, only few qualitative studies explored alloHSCT-survivors' experiences post-transplant (19,(32)(33)(34)(35)(36)(37), with many of them focusing on survivors of leukemia or lymphoma (33). Also, there is still a lack of research on how care in this area could be improved and, to our knowledge, very few qualitative studies have focused on the views and perceptions of European alloHSCT-survivors taking into account that findings from other contexts may not be generalizable due to differences in healthcare settings and services.…”

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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Beyond depression, anxiety and post‐traumatic stress disorder symptoms: Qualitative study of negative emotional experiences in hematopoietic stem cell transplant patients

Cited by 13 publications

References 41 publications

Study on the Conduction Analysis and Blocking Intervention Scheme of Emotional Disorders between Cancer Patients and Their Families

Study on the Conduction Analysis and Blocking Intervention Scheme of Emotional Disorders between Cancer Patients and Their Families

Patient and Provider Perspectives on the Impacts of Unpredictability for Patient Sensemaking: Implications for Intervention Design

“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

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