Research Participants' Perspectives on Genotype-Driven Research Recruitment

Genotype-Driven Recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, “information is valuable,” and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally

The (Inter)Professional Identity of Hospital Social Workers: Integration and Operationalization of Profession-Specific Knowledge, Skills, and Values with Boundary-Spanning Competencies

Thesis (Ph.D.)--University of Washington, 2018Purpose: This dissertation examines the professional identity narratives of hospital social workers in a way that is conceptually grounded and relevant to efforts to engage with interprofessional collaborative practice. Although significant literature exists to describe the roles and contributions of hospital social workers, less is known about their perceptions of their professional identity as it relates to their efforts to collaborate with interprofessional healthcare teams. This study helps to fill that gap by analyzing interviews conducted with hospital social workers. Methods: Data include interviews (n=20) with Masters in Social Work-trained hospital social workers from three large university-affiliated hospitals in the Pacific Northwest region of the United States. Interviews were conducted in the summer of 2012 as part of the University of Washington TL1 Translational Research Training Program. Data were analyzed using the qualitative method of interpretive thematic analysis. Results: Three analyses were conducted in this study. First, was the examination of the unique elements of professional social work identity (knowledge, skills and values). This analysis yielded three themes: 1) Social Workers as “Bigger Picture People”, 2) Soft Skills Pervade, and 3) The Influential Code of Ethics. Second, was the examination of boundary spanning competencies required for effective collaboration. This analysis yielded four themes: 1) Collaborative Spirits, 2) Cross-Profession Synthesizers, 3) Boundary-Spanning Communicators, and 4) Owners of Practice Domains. Third, was the examination of social workers’ experiences working on interprofessional teams. This analysis demonstrated that facilitators and barriers to collaboration are impacted by variables across multiple levels. Five themes emerged: 1) Social Workers’ Confidence, 2) Role Ambiguity, 3) Time for Collaboration, 4) Institutional Support, and 5) Hierarchy and Power. Together, the analyses present a depiction of the “dual identity” or “interprofessional identity” of hospital social workers, and their experiences operationalizing this identity in their practice settings. Discussion and Implications: Findings from this study demonstrate strengths and possible areas of weaknesses related to the professional grounding and boundary-spanning capacities of hospital social workers. Several social workers were able to articulate a strong sense of what it means to “belong” to the profession, but at the same time social workers described challenges with their professional identities. Most provided positive reports related to their ability to work alongside their team members and effectively collaborate. However, some provided examples of feeling misunderstood, under-utilized, or unappreciated by other health care professions. Role ambiguity and overlap were commonly cited barriers to collaboration. Findings have implications for social work education and research priorities

Parental Views of Social Worker and Chaplain Involvement in Care and Decision Making for Critically Ill Children with Cancer

Background: Social workers (SWs) and chaplains are trained to support families facing challenges associated with critical illness and potential end-of-life issues. Little is known about how parents view SW/chaplain involvement in care for critically ill children with cancer. Methods: We studied parent perceptions of SW/chaplain involvement in care for pediatric intensive care unit (PICU) patients with cancer or who had a hematopoietic cell transplant. English- and Spanish-speaking parents completed surveys within 7 days of PICU admission and at discharge. Some parents participated in an optional interview. Results: Twenty-four parents of 18 patients completed both surveys, and six parents were interviewed. Of the survey respondents, 66.7% and 75% interacted with SWs or chaplains, respectively. Most parents described SW/chaplain interactions as helpful (81.3% and 72.2%, respectively), but few reported their help with decision making (18.8% and 12.4%, respectively). Parents described SW/chaplain roles related to emotional, spiritual, instrumental, and holistic support. Few parents expressed awareness about SW/chaplain interactions with other healthcare team members. Conclusions: Future work is needed to determine SWs’/chaplains’ contributions to and impact on parental decision making, improve parent awareness about SW/chaplain roles and engagement with the healthcare team, and understand why some PICU parents do not interact with SWs/chaplains