Barriers to conceiving sibling donors for sickle cell disease: perspectives from patients and parents

Jae, Gina; Lewkowitz, Adam K.; Yang, Joanna C.; Shen, Leyi; Rahman, Amal; Toro, G. Del

doi:10.1080/13557858.2011.558619

Cited by 15 publications

(26 citation statements)

References 27 publications

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“…Stakeholders considering HCT for malignancy perceived HCT as the only option, while those considering HCT for nonmalignant diseases perceived options other than HCT . Some stakeholders actually preferred supportive care strategies over HCT for SCD and MPS1 .…”

Section: Resultsmentioning

confidence: 99%

“…Regardless of the indication for HCT, stakeholders recognized HCT as a cure, with the awareness that HCT offered both hope and danger . Perception of HCT effectiveness was influential to some stakeholders with SCD and FA, but Friedrich et al.…”

Section: Resultsmentioning

confidence: 99%

“…found concern for treatment failure to be influential in only 7% of parents considering HCT for SCD . Others concentrated on the dangers associated with HCT, such as side effects (i.e., death) and risk to the sibling donor . The possibility for a better quality of life was recognized by stakeholders pursuing HCT in those with nonmalignant diseases, but the influence of survival and life itself dominated the decision‐making process in those with malignancy .…”

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases

Schulz

Kelly

Holtmann

et al. 2017

Pediatric Blood & Cancer

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Hematopoietic cell transplantation (HCT) is not a trivial treatment decision in pediatrics. We sought to understand what influences this decision-making process from the perspectives of the pediatric patients, their family, and physicians. Using integrative review methods, we identified 19 relevant studies: six qualitative, ten quantitative, and three mixed methods. Synthesis of the results revealed six themes describing patient, family, and provider decision-making processes with distinct subthemes contrasting influential factors among malignant and nonmalignant diseases. Identification of what influences HCT decision making will aid in development of decision support, education, and communication strategies. The child/adolescent voice and provider perspective warrant more attention.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases

Schulz

Kelly

Holtmann

et al. 2017

Pediatric Blood & Cancer

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“…Low utilization of in vitro fertilization and preimplantation genetic diagnosis has been reported in families affected by SCD. 50 Again, the role of clinicians and patient advocates as educators in family planning decisions is paramount.…”

Section: Discussionmentioning

confidence: 99%

Lessons Learned From Talking With Parents About the Role of Hematopoietic Stem Cell Transplantation in the Treatment of Children With Sickle Cell Disease

Friedrich

Steinfield

Kim

et al. 2015

American Journal of Health Education

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Background: Hematopoietic stem cell transplantation (HSCT) is currently the only cure for sickle cell disease (SCD), but only a fraction of eligible children proceed to transplantation. We aimed to understand parental awareness and perceptions as a contributor. Purpose: To discuss HSCT with parents of children with SCD and assess their awareness and perceptions. Methods: A standardized educational session and pre-post surveys were used. Results: Fifty-seven parents completed the educational session. Parental awareness of HSCT and independent search for information were poor; only 40% of parents were previously aware of HSCT as a treatment option in SCD. However, 91% reported that the information was valuable, and 67% that they would consider HSCT as a treatment option for their child. Parents' main concerns were death, isolation, and infertility. Discussion: Our results support the use of structured educational materials during routine SCD health visits to provide information to parents about HSCT and begin discussing complex treatment options. Translation to Health Education Practice: Our results are relevant to clinicians, health educators, and patient advocates responsible for counseling parents of children with chronic conditions about high-risk curative options. A patient education sheet was generated from this experience and will be used to standardize ongoing parental education at our institutions.

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“…The overall finances required for PGD can present an economic barrier for prospective parents hoping to significantly reduce their chances of passing on known genetic disorders (Jae et al, 2011). Additionally, many genetic high-risk individuals are not diagnosed with infertility, which is often a prerequisite for health insurance plans in the United States that do cover costly IVF treatments.…”

Section: Introductionmentioning

confidence: 99%

A Qualitative Inquiry of the Financial Concerns of Couples Opting to Use Preimplantation Genetic Diagnosis to Prevent the Transmission of Known Genetic Disorders

Drazba

Kelley

Hershberger

2013

Journal of Genetic Counseling

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Preimplantation genetic diagnosis (PGD) is an innovative prenatal testing option because the determination of whether a genetic disorder or chromosomal abnormality is evident occurs prior to pregnancy. However, PGD is not covered financially under the majority of private and public health insurance institutions in the United States, leaving couples to decide whether PGD is financially feasible. The aim of this qualitative study was to understand the role of finances in the decision-making process among couples who were actively considering PGD. In-depth, semi-structured interviews were completed with 18 genetic high-risk couples (36 individual partners). Grounded theory guided the analysis, whereby three themes emerged: 1) Cost is salient, 2) Emotions surrounding affordability, and 3) Financial burden and sacrifice. Ultimately, couples determined that the opportunity to avoid passing on a genetic disorder to a future child was paramount to the cost of PGD, but expressed financial concerns and recognized financial access as a major barrier to PGD utilization.

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Barriers to conceiving sibling donors for sickle cell disease: perspectives from patients and parents

Cited by 15 publications

References 27 publications

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases

Lessons Learned From Talking With Parents About the Role of Hematopoietic Stem Cell Transplantation in the Treatment of Children With Sickle Cell Disease

A Qualitative Inquiry of the Financial Concerns of Couples Opting to Use Preimplantation Genetic Diagnosis to Prevent the Transmission of Known Genetic Disorders

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