Perceptions of tissue storage in a dementia population among spouses and offspring.

Cognitively impaired patients with dementia often rely on health advocates or guardians, such as spouses or adult offspring, to consent for medical procedures. These family members may also decide whether an autopsy is performed after death or whether their family member donates tissues. However, spouses are not genetically related to the patient and may have different perspectives than genetically related family members when making medical decisions with genetic implications, such as participation in a tissue repository (biobank). Interviews were conducted with spouses and adult offspring of individuals with a progressive dementing disease. Both spouses and offspring were supportive of the patient with dementia to participate in tissue storage. The top perceived benefits of tissue storage in both offspring and spouses were future value for family members and advancement of medical knowledge. Concerns included misuse of the tissue and insurance discrimination. Although the personal genetic implications differ between spouses and offspring, they share similar attitudes about the importance of tissue banking for the individual with a dementing disease.

Concerns of newborn blood screening advisory committee members regarding storage and use of residual newborn screening blood spots.

OBJECTIVES: We assessed attitudes and opinions of members of newborn blood screening (NBS) advisory committees regarding the storage and secondary research use of residual specimens from NBS. METHODS: We conducted focus groups in 2008 and 2009 with NBS advisory committees (4 focus groups; n = 39 participants) in the Mountain States region (i.e., AZ, CO, MT, NM, NV, TX, UT, and WY). RESULTS: Participants identified several challenges to implementing policies for storage of and research on residual newborn blood specimens. Themes that emerged from the data were public health relevancy; improvement of parental knowledge; impact of enhanced parental involvement; concerns over ownership, privacy, and confidentiality; identification of secondary research uses; and role of advisory committees. CONCLUSIONS: Participants indicated that secondary uses of residual specimens entailed opportunities for improvements in NBS programs but also carried significant risks for their programs. Addressing concerns from stakeholders will be necessary for state-level adoption of national recommendations.

Tele-health: lessons and strategies from specialists in poison information.

OBJECTIVE: The use of the telephone for providing healthcare is growing. The aim of this exploratory study was to describe tele-health lessons and strategies as discussed by specialists who provide information and recommendations on poison control hotlines. METHODS: Three focus groups of 25 participants who work as specialists in poison information in poison control centers were conducted. Group discussions were analyzed using qualitative content analysis. RESULTS: Themes that emerged from the data on strategies for telephone communication include: taking control of the call, developing a therapeutic relationship, tailoring communication to fit each caller, preventing information overload, confirming caller understanding, and hands-on training for the development of telephone communication skills. CONCLUSION: Specialists in poison information identified challenges specific to communicating with patients over the telephone and reported several types of strategies they used to manage them. PRACTICE IMPLICATIONS: Telephone communication training may be needed to assist health care providers in improving their communication skills.