Women's Choices Regarding Use of Their Newborns' Residual Dried Blood Samples in Research.

OBJECTIVE: To determine the proportion of informed choices women made about donating their newborns' blood samples for research. DESIGN: A quantitative analysis of informed choice using data on women's knowledge and attitudes from a descriptive, cross-sectional survey. SETTING: The state of Michigan. PARTICIPANTS: Women (N = 69, ≥18 years old) who had (a) newborns 0 to 3 months of age, (b) yes or no decisions regarding use of the blood sample for research on file, (c) no evidence of an infant death in the state database, (d) completed the knowledge scale, (e) completed the attitude scale, and (f) recalled the decision (i.e., yes or no) about donating blood samples. METHODS: We used the multidimensional measure of informed choice to calculate the proportion of informed choices in data on women's knowledge, attitudes, and decisions about biospecimen research. RESULTS: Fifty-five percent (38/69) of participants made informed choices about donating newborn blood samples for research, and 45% made uninformed choices (31/69). Inadequate knowledge about biospecimen research contributed to 87% of uniformed choices (27/31). Participants who declined to donate their newborns' blood samples struggled with making decisions consistent with their values. CONCLUSION: Nearly half of the participants made uninformed choices about donating the blood samples of their newborns for research. Women need more information about genetics and the storage and research use of newborns' blood samples to make informed choices. Nurses need to be made aware of the ethical, legal, and social implications of such research because they are primary sources of advocacy, information, and support for childbearing women and may be charged with overseeing or obtaining informed consent. Additional research with larger, more diverse samples is needed.

Mothers' Decisions About Donating Newborns' Blood Spots for Research: A Qualitative Study.

Residual dried blood spots from millions of newborns are being stored and used for research. The state of Michigan proactively developed a broad consent process for research use of newborns' blood spots. However, the extent to which mothers make informed choices about this research is unclear. A descriptive, qualitative study was conducted examining this issue. Twenty-nine observations of the consent process and 20 semistructured interviews were conducted with mothers on the postpartum unit of a large, academic hospital in Michigan. Content analysis of the transcripts was conducted. While most mothers agreed to donate the blood spots (n = 14/20; 70%), findings indicated that most decisions were uninformed (n = 16/20; 80%), as mothers lacked knowledge of biobanking research. Misunderstandings about anonymity, the consenter's credentials, and entity conducting the research seemed to influence decision making. Suggestions for improving the consent process include (1) changing the venue of blood spot education and consent from the postpartum period to the perinatal period, (2) strengthening the depth of information and delivery of information provided about the topic, including ethical and values clarification, and (3) increasing consenter education and training. Implementation may help increase the proportion of informed decisions.

Participants' Understanding of Informed Consent for Biobanking: A Systematic Review.

Nurses are increasingly asked to obtain consent from participants for biobanking studies. Biobanking has added unique complexities to informed consent. The purpose of this systematic review was to evaluate participants' level of understanding of the information presented during the informed consent process unique to the donation of biological specimens for research. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were utilized to conduct the review. PubMed, EMBASE, CINAHL, PsycINFO, Scopus, Web of Science, and ProQuest bibliographic databases were searched. Results indicated that elements of informed consent unique to biobanking were poorly understood. Most studies had authors or funding associated with a biobank. Only one study disclosed and assessed participants' understanding of moral risks. Increased disclosures, values-clarification, and presenting information via multiple modalities may facilitate understanding. There is a need to improve the quality of informed consent for biobanking studies by utilizing standardized instruments, definitions, and encouraging research about informed choice outside the biobanking industry.

Outcome after tracheostomy for respiratory failure in the elderly.

The purpose of this study was to determine hospital and postdischarge survival and functional status at follow-up in elderly patients receiving tracheostomy for respiratory failure and to determine if these outcomes differed between the younger elderly (65-74 years) and the older elderly (> or = 75 years). This was a retrospective chart review with prospective administration of the SF-36 conducted in 228 patients aged 65 years or older who had undergone tracheostomy to facilitate mechanical ventilation for respiratory failure at a tertiary care, university-affiliated, urban medical center. Demographics, comorbidities, hospital survival, liberation from mechanical ventilation, long-term survival, and functional status were determined. Combined hospital and hospice mortality did not differ by age, being 34% and 26% in the 65- to 74-year and > or = 75-year groups, respectively (P> .05). However, older patients (> or = 75 years old) were more likely to be discharged still requiring mechanical ventilation (62% vs 45%, P< .05). Only one half of hospital survivors survived for 1 additional year. Those discharged ventilator-dependent were more likely to die. Of the 20 participants in the SF-36 portion of the study, most had fair to good emotional and social functioning but were extremely limited physically.