Sadie P. Hutson

The mountains hold things in: the use of community research review work groups to address cancer disparities in Appalachia.

PURPOSE/OBJECTIVESnTo review regional findings about cancer disparities with grass roots community leaders in Appalachia and to identify perspectives about what makes the cancer experience unique in Appalachia.nnnRESEARCH APPROACHnA community-based participatory approach that includes focus-group methodology.nnnSETTINGnWork groups gathered in well-known community locations in northeastern Tennessee and southwestern Virginia.nnnPARTICIPANTSn22 lay adult community members (12 in Tennessee and 10 in Virginia), all of whom had a personal and community interest in cancer and were reputed as informal community leaders.nnnMETHODOLOGIC APPROACHnWork groups engaged in a series of five sequential sessions designed to (a) review regional data about cancer disparities and identify perspectives about what makes the cancer experience unique in Appalachia, (b) promote dialogue between the work group members and healthcare providers to identify methods for improved collaboration, and (c) integrate the work group with regional efforts of the states comprehensive cancer control plans.nnnFINDINGSnFour major themes emerged from the focus group sessions with each work group: cancer storytelling, cancer collectivism, healthcare challenges, and cancer expectations. The community research review work groups proved to be a successful method to disseminate information about regional cancer disparities.nnnCONCLUSIONSnStudy findings provide a unique foundation so that healthcare providers and researchers can begin to address cancer disparities in the Appalachian region.nnnINTERPRETATIONnNurses are in key positions to partner with trusted community leaders to address disparities across the cancer continuum in Appalachia.

Experiences of siblings of patients with Fanconi anemia

Clinical management of families with autosomal recessive genetic disorders focuses almost exclusively on the affected family members. However, clinically unaffected members of such families may also be severely troubled by the serious illness in a family member. The purpose of this study was to explore the experiences of healthy siblings of patients with a chronic genetic disease, Fanconi Anemia (FA).

The use of haematopoietic stem cell transplantation in Fanconi anaemia patients: a survey of decision making among families in the US and Canada

Fanconi anaemia (FA) is a rare genetic disorder associated with bone marrow failure (BMF), congenital anomalies and cancer susceptibility. Stem cell transplantation (SCT) offers a potential cure for BMF or leukaemia, but incurs substantial risks. Little is known about factors influencing SCT decision making.

Survivor guilt: analyzing the concept and its contexts.

Survivor guilt, a concept associated with the interpersonal process of “surviving” harm while others do not, increasingly appears in nursing, medicine, and psychology literature. Paradoxically, the phenomenon is rarely defined and often poorly described. Combining Rodgers evolutionary concept analysis with a comprehensive literature review, we explain the attributes, antecedents, consequences, related concepts, and surrogate terms of survivor guilt. A new definition emerged from the evolving use of the concept in new contexts. Survivor guilt is a valid form of suffering for which effective interventions need to be developed. This analysis extends the concept, laying the foundation for comprehensive treatment strategies.