Qualitative research participants who self-identified as having a history of childhood sexual abuse and abuse-related posttraumatic stress during the childbearing year were interviewed for the purpose of determining what these women perceive as optimal maternity care. Using a process of narrative analysis, desired care practices were identified. With the exception of one woman, all of the study participants wanted their maternity care provider to be competent to address trauma-related needs. Three groups emerged from the data, providing a useful structure for informing providers on how best to respond to diverse abuse-survivor clients: 1) women far along in recovery, 2) women who were not safe, and 3) women who were not ready to "know." The first group had the best trauma-related and maternity outcomes and the best childbearing experiences. For these women, having a provider who was a "collaborative ally" seemed beneficial. The second group had safety needs that required a "compassionate authority figure" who offered referral and follow-up care. Women in the third group were not ready to address trauma-related symptoms or issues overtly and appeared to need a provider who was a "therapeutic mentor." Four assessment factors help providers determine how to respond.

No consensus was found in the literature about the conceptual definition of continuity of care. Continuity of patient care is a multifactorial concept affected by environmental influences, communication, patient, professional, and system factors.

Manifestations of Huntington disease (HD) prior to clinical diagnosis are not well understood. This study documents adult family members' perceptions of changes and their attempts to manage these changes in persons who had received a positive predictive molecular HD test prior to clinical diagnosis. Data were obtained from 19 adult family members in six focus groups in the US and Canada and one individual interview in the US. Changes reported by family members included problems in cognition and behavior, which are consistent with prior reports. In addition, family members observed changes in motor functioning, the ability to complete usual activities at work or at home, and interpersonal relationships with family and friends. Family members attempted to manage these changes by taking on new responsibilities and preparing for future caregiving. Lack of information about preclinical HD, difficulty in understanding changes that may represent early stages of HD, and efforts to maintain secrecy of the preclinical HD situation contribute to compromising the abilities of family members to respond to changes in the person with preclinical HD. Findings provide insights into alterations in cognition, behavior, and functioning observed by the family members prior to clinical diagnosis. Findings further support the need for a more comprehensive assessment and management of early HD symptoms as well as support for family members.

Research on families with Huntington Disease (HD) has primarily focused on adult decision-making surrounding predictive genetic testing and caregiver stress. Little is known about the experiences of teens living in these families. This qualitative study explored the experiences of 32 teens living in families with HD. Six focus groups were conducted across the U.S. and Canada. Data were analyzed using descriptive qualitative analysis. HD appeared to cast a shadow over the experiences described by teens. Four themes were identified: Watching and waiting; Alone in the midst of others; Family life is kind of hard; and Having to be like an adult. These experiences highlight the need for genetic counselors, health care providers, and school personnel to be aware of issues facing teens living in families with HD. Recognizing patterns of teen experiences may help health care providers develop strategies to support coping by teens in HD families.