Dataset Information

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

ABSTRACT: Increasingly, adolescent, young adult, and adult children are relied upon as donors for their parents undergoing blood and marrow stem cell transplant. How family functioning impacts donors' decision making and whether haploidentical donor children have unique supportive care needs is unknown. In this qualitative research study, we conducted 15 semistructured telephone interviews among individuals who underwent blood or marrow stem cell donation for their parent. Interviews explored donors' perspectives of the transplant experience across the trajectory from screening through early post-transplant follow-up and elicited unmet needs. Major themes included: (1) perception of choice, (2) act of giving back, (3) burdens of donation, (4) anticipated health benefit to parent, and (5) impact of donation on parent/child relationship. The majority of participants described high family functioning, but strain was also evident. Family functioning rarely was reported as affecting the decision to donate, with all donors expressing a sense of obligation. Participants were overwhelmingly satisfied with their decision and the ability to give back to their parent. Suggestions for the health care team to improve the donation experience focused on increased education about potential delays in screening, better description of possible complications for recipients, and provision of emotional support following donation.

SUBMITTER: Wagner-Johnston ND

PROVIDER: S-EPMC7609517 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

Wagner-Johnston Nina D ND Hannum Susan M SM Heughan JaAlah-Ai JA Abshire Martha M Wolff Jennifer L JL Yarkony Kathryn K Symons Heather H Jones Richard J RJ Dy Sydney M SM

Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation 20200808 11

Increasingly, adolescent, young adult, and adult children are relied upon as donors for their parents undergoing blood and marrow stem cell transplant. How family functioning impacts donors' decision making and whether haploidentical donor children have unique supportive care needs is unknown. In this qualitative research study, we conducted 15 semistructured telephone interviews among individuals who underwent blood or marrow stem cell donation for their parent. Interviews explored donors' pers ...[more]

PMID: 32781288

Similar Datasets

Project description:Simple Summary Early-onset cancers, defined as cancers in adults aged 18 to 49 years, are increasing in a number of cancer sites in developed countries. Cancers commonly seen in older people are now being diagnosed in younger adults, for example bowel, breast, stomach and pancreatic cancers. In this review, we report statistics about early-onset cancers using exemplar data from a UK region and discuss issues unique to this age group. Topics covered include the long-term consequences of cancer treatment, how cancer treatment affects fertility and the use of social media by patients, healthcare professionals and researchers. We also outline important future research priorities for early-onset cancers. Abstract Rising incidence of specific types of early-age onset cancers in adults aged 18–49 years has been reported in high-income countries. In this review, we summarise the epidemiology of early-onset cancers using exemplar data from a high-income UK region, discuss supportive care needs for young patients and outline future research directions. The incidence rate of early-onset cancers increased by 20.5% from 1993 to 2019 in Northern Ireland. Differences in types of cancer were observed between sexes and across age groups of 18–29, 30–39 and 40–49 years. One and five-year net survival was mostly better in 18–29-year-olds for all cancers combined compared to older age groups for both sexes, but there were variations in specific cancer types. Poorer survival was observed for patients with brain/central nervous system, connective and soft tissue or lung cancers. Patients with early-onset cancers face unique supportive care needs and require holistic care. The impact of cancer treatment on fertility and fertility preservation treatments is an important consideration. Social media can be used for patient support, information, fundraising, advocacy work and recruitment to research studies. We also outline suggested future research priorities for early-onset cancers, spanning prevention, diagnosis, treatment and supportive care needs.

Dataset Information

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

Publications

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets