Collective Leadership, Academic Collaborations and Health Disparities: A Framework for Success

Implementing collaborative approaches to addressing health disparities involves multiple individuals who have leadership roles both within their own sectors and within the collaborative effort’s infrastructure. Understanding how that collective leadership operates and the skills and behaviors each member of the team brings to the collaborative process can shed light on what makes for a successful outcome. The Center of Excellence for Health Disparities in the Nation’s Capital (CEHD) was a collaborative effort between two universities and among multiple schools within the same institution, across departments and with multiple community partners. This paper presents a case example of collective leadership in an academic setting with the goal of reducing health disparities in the District of Columbia utilizing the leadership model of Kouzes and Posner (2007) as a conceptual framework.The self-assessment of leadership practices within the leadership team of this collaborative effort demonstrated that while across the team there was the array of leadership practices needed to support successful collaboration, no one team member reported high frequencies of all practices. It was the collective profile of behaviors that aligned with the elements needed for successful collaboration

Addressing Disparities in Access to Information for Hispanic Families of Children with Special Health Care Needs

Objectives: Utilizing a diffusion of innovation (DOI) framework, the study seeks to increase access to information for Hispanic families of children with special health care needs (SHCN) by increasing their use of Family-to-family Centers (F2Fs) in their states. Methods: Focus groups were implemented of both English-speaking and Spanish-speaking Hispanic families in two states with a confirming Delphi procedure exploring factors within DOI framework related to using F2Fs and the nature of current family communication networks. Results: Families seeking information at key change points turn to formal sources, although Spanish-speaking families, noted that due to language barriers, they also turned to family and friends. Families prefer getting information in one-on-one encounters rather than via technologies. F2Fs being staffed by parents of children with SHCN is a relative advantage over other sources of information and race or ethnicity of the staff was not an essential feature in using F2Fs, although services in Spanish was. Findings indicated that cultural values might impede turning outside the family for support and that concerns about federally funded programs serving all families or being suddenly cut impacted families views of using F2Fs. Conclusions: Increasing the use of F2Fs by Hispanic families will entail increasing awareness and acceptance of the centers by their social networks and by social marketing efforts that focus on factors identified. In addition, at the policy level, there needs to be a recognition of the strong preference for person-to-person support rather than technological approaches, which has fiscal implications

Cancer genetic health communication in families tested for hereditary breast/ovarian cancer risk: a qualitative investigation of impact on children\u27s genetic health literacy and psychosocial adjustment.

Children\u27s literacy about the genetics of late-onset hereditary breast/ovarian cancer (HBOC) often develops through conversations with parents about BRCA gene testing and adults\u27 cancer diagnoses. These conversations may promote early understanding of HBOC, but the long-term impact on children\u27s psychosocial adjustment remains unclear. We investigated cancer genetic health communication in BRCA-tested families to consider benefits, risks, and moderating influences on children\u27s understanding and well-being. Adolescent and young adult children (ages 12-24) of mothers who underwent BRCA testing 1+ years previously completed qualitative interviews that were transcribed, coded (intercoder K ≥ .70), and content-analyzed (N = 34). Children readily recalled conversations about BRCA testing and HBOC (100%) that they considered important (94%), but implications for children were ambiguous and obfuscated their concerns. Psychosocial impacts were muted, multifaceted, and displayed a range of favorable (82%), neutral (71%), and unfavorable (59%) response-frequently co-occurring within the same child over different aspects (e.g., medical, concern for self and others). Children verbalized active (50%) and avoidant (38%) coping strategies: about 1:5 endorsed transient thoughts about vulnerability to HBOC, 1:3 had not further considered it, and all reported specific actions they had or would undertake to remain healthy (e.g., diet/exercise). A majority (94%) of children had or would consider genetic testing for themselves, usually later in life (59%). Long-term outcomes highlighted benefits (awareness of HBOC, psychological hardiness, healthier lifestyle behaviors), as well as some psychosocial concerns that could be managed through interventions promoting genetic health literacy