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"Being alone for a whole year [is hard]" Families reflect on the emotional toll of stem cell transplantation for sickle cell disease.

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Title: "Being alone for a whole year [is hard]" Families reflect on the emotional toll of stem cell transplantation for sickle cell disease.
Authors: Steinberg, Dara M1,2 (AUTHOR), Mulinda, Carly3 (AUTHOR), Castaño, Katerina1 (AUTHOR), DiCola, Katie4 (AUTHOR), Tanenbaum, Molly L5 (AUTHOR), Gold, Abigail Onderwyzer3 (AUTHOR), Beauchemin, Melissa P6 (AUTHOR), Bhatia, Monica1 (AUTHOR)
Source: Journal of Pediatric Psychology. Feb2025, Vol. 50 Issue 2, p187-196. 10p.
Subject Terms: *Caregiver attitudes, *Quality of life, *Teenagers, Stem cell transplantation, Psychosocial factors, Family policy, Sickle cell anemia, Psychological distress
Abstract: Objective Sickle cell disease (SCD) is associated with significant morbidity and mortality. Hematopoietic stem cell transplantation (HCT) can improve health-related quality of life (HRQOL) but may be physically and emotionally challenging. Thus, the aim of this study was to understand the experience of HCT from the perspective of youth and young adults (YYAs) post-HCT for SCD and their parents. Methods YYAs were recruited from an urban hospital. Sociodemographic and HCT-specific information was analyzed for all enrolled. YYAs and/or their primary caregivers during HCT, participated in semi-structured interviews (e.g. pre-HCT knowledge, challenges, advice for families/health care providers). Interviews were audio-recorded, transcribed, and analyzed using content analysis. Results There were 19 YYAs enrolled (63.2% male; 68.4% Black or African American; 47.4% Hispanic or Latino; M days post-HCT = 1946.53 ± 1329.13; M age at HCT = 10.95 ± 6.10 years old; M current age 15.74 ± 5.78 years old). Interviews were done with six YYAs alone, five YYA-caregiver dyads, and eight caregivers alone. The caregivers were all mothers. Participants reported underestimating the emotional impact HCT would have on themselves and their family members. They experienced challenges related to isolation, academics, finances, and post-HCT medical needs. In contrast, they felt well prepared for physiological aspects of HCT. They sought HCT to improve YYAs' HRQOL and encouraged others to consider it, but to be cognizant of the potential psychosocial impact. Conclusions This study highlights the importance of preparing families for the psychosocial effects of HCT. Incorporating psychosocial assessment, education, and intervention throughout HCT has the potential to promote HRQOL for YYAs and their families. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Pediatric Psychology is the property of Oxford University Press / USA and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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  Data: "Being alone for a whole year [is hard]" Families reflect on the emotional toll of stem cell transplantation for sickle cell disease.
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  Data: <searchLink fieldCode="AR" term="%22Steinberg%2C+Dara+M%22">Steinberg, Dara M</searchLink><relatesTo>1,2</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Mulinda%2C+Carly%22">Mulinda, Carly</searchLink><relatesTo>3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Castaño%2C+Katerina%22">Castaño, Katerina</searchLink><relatesTo>1</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22DiCola%2C+Katie%22">DiCola, Katie</searchLink><relatesTo>4</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Tanenbaum%2C+Molly+L%22">Tanenbaum, Molly L</searchLink><relatesTo>5</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gold%2C+Abigail+Onderwyzer%22">Gold, Abigail Onderwyzer</searchLink><relatesTo>3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Beauchemin%2C+Melissa+P%22">Beauchemin, Melissa P</searchLink><relatesTo>6</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Bhatia%2C+Monica%22">Bhatia, Monica</searchLink><relatesTo>1</relatesTo> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Pediatric+Psychology%22">Journal of Pediatric Psychology</searchLink>. Feb2025, Vol. 50 Issue 2, p187-196. 10p.
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  Data: *<searchLink fieldCode="DE" term="%22Caregiver+attitudes%22">Caregiver attitudes</searchLink><br />*<searchLink fieldCode="DE" term="%22Quality+of+life%22">Quality of life</searchLink><br />*<searchLink fieldCode="DE" term="%22Teenagers%22">Teenagers</searchLink><br /><searchLink fieldCode="DE" term="%22Stem+cell+transplantation%22">Stem cell transplantation</searchLink><br /><searchLink fieldCode="DE" term="%22Psychosocial+factors%22">Psychosocial factors</searchLink><br /><searchLink fieldCode="DE" term="%22Family+policy%22">Family policy</searchLink><br /><searchLink fieldCode="DE" term="%22Sickle+cell+anemia%22">Sickle cell anemia</searchLink><br /><searchLink fieldCode="DE" term="%22Psychological+distress%22">Psychological distress</searchLink>
– Name: Abstract
  Label: Abstract
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  Data: Objective Sickle cell disease (SCD) is associated with significant morbidity and mortality. Hematopoietic stem cell transplantation (HCT) can improve health-related quality of life (HRQOL) but may be physically and emotionally challenging. Thus, the aim of this study was to understand the experience of HCT from the perspective of youth and young adults (YYAs) post-HCT for SCD and their parents. Methods YYAs were recruited from an urban hospital. Sociodemographic and HCT-specific information was analyzed for all enrolled. YYAs and/or their primary caregivers during HCT, participated in semi-structured interviews (e.g. pre-HCT knowledge, challenges, advice for families/health care providers). Interviews were audio-recorded, transcribed, and analyzed using content analysis. Results There were 19 YYAs enrolled (63.2% male; 68.4% Black or African American; 47.4% Hispanic or Latino; M days post-HCT = 1946.53 ± 1329.13; M age at HCT = 10.95 ± 6.10 years old; M current age 15.74 ± 5.78 years old). Interviews were done with six YYAs alone, five YYA-caregiver dyads, and eight caregivers alone. The caregivers were all mothers. Participants reported underestimating the emotional impact HCT would have on themselves and their family members. They experienced challenges related to isolation, academics, finances, and post-HCT medical needs. In contrast, they felt well prepared for physiological aspects of HCT. They sought HCT to improve YYAs' HRQOL and encouraged others to consider it, but to be cognizant of the potential psychosocial impact. Conclusions This study highlights the importance of preparing families for the psychosocial effects of HCT. Incorporating psychosocial assessment, education, and intervention throughout HCT has the potential to promote HRQOL for YYAs and their families. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
  Label:
  Group: Ab
  Data: <i>Copyright of Journal of Pediatric Psychology is the property of Oxford University Press / USA and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1093/jpepsy/jsae101
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      – Code: eng
        Text: English
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        PageCount: 10
        StartPage: 187
    Subjects:
      – SubjectFull: Caregiver attitudes
        Type: general
      – SubjectFull: Quality of life
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      – SubjectFull: Teenagers
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      – SubjectFull: Stem cell transplantation
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      – SubjectFull: Family policy
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      – SubjectFull: Sickle cell anemia
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      – SubjectFull: Psychological distress
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      – TitleFull: "Being alone for a whole year [is hard]" Families reflect on the emotional toll of stem cell transplantation for sickle cell disease.
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              Text: Feb2025
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              Y: 2025
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