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Martinez, Linda Sprague.

Using a Macro social work strategy to improve outreach in Parkinson’s disease research [electronic resource] / Linda Sprague Martinez, Cathi A Thomas, Marie Saint-Hilaire, Jaye McLaren, Jaime Young, Barbara Habermann, Linda Tickle-Degnen. - pp. 265-268.

Macro practice is intended to catalyze change in the systems that affect people’s lives, as such the focus is on the ecological context in which individuals and groups operate. Working from a place of empowerment and social justice, macro practitioners rely heavily on community partnerships and engagement and focus on community strengths and assets that can be leveraged to advance social justice. In an attempt to engage communities of color in Parkinson’s disease (PD) research, and to increase awareness of PD in communities of color, macro social work strategies were used by the emergence and evolution of Social Self-Management of Parkinson’s Disease (SocM-PD) research team. SocM-PD is a prospective cohort study examining the social self-management systems and trajectories of people living with PD (Tickle-Degnen et al., 2014).

There are disparities in PD clinical trial participation; a systematic review revealed that African Americans in particular were poorly represented in PD clinical trials (Schneider et al., 2009). Among studies that reported enrolling people of color, African Americans represented just 1.7 percent of the study population (studies that targeted only people of color being excluded) (Schneider et al., 2009). Recruitment challenges, however, are not unique to PD researchers. People of color, particularly African Americans and Latinos, are underrepresented in clinical research and can be difficult to recruit (Hussain-Gambles, Atkin, & Leese, 2004; Mosenifar, 2007; Shavers-Hornaday, Lynch, Burmeister, & Torner, 1997). Schneider et al. (2009) described barriers to engaging people of color in PD research that include a lack of information about PD, fear, stigma, and not having a usual source of primary care. Added challenges to engaging people of color in PD research include historical and contextual factors. For example, systematic oppression has contributed to African American distrust and suspicion of the academic research enterprise (Alvarez, Vasquez, Mayorga, Feaster, & Mitrani, 2006; Sprague Martinez, Freeman, & Winkfield, 2017; Young, 2009). It is for this reason that studies seeking to work in collaboration with traditionally marginalized communities might consider drawing on macro practice strategies, such as community assessment and asset mapping.

Asset mapping includes the identification and categorization of individual, organizational, and institutional assets. Assets are generally grouped in three categories based on control or ownership and place (Kretzmann & McKnight, 1993). Primary assets are located within and controlled by a given community, whereas secondary assets may be located within the community but controlled by outsiders (Kretzmann & McKnight, 1993). Finally, potential assets are those that are neither in nor controlled by a target community but may be leveraged by the community (Kretzmann & McKnight, 1993).

This article adds to the literature, highlighting a need for community partnerships and campaigns designed to leverage existing community assets and engage diverse community stakeholders in the promotion of PD awareness. The macro social work–informed strategy used is described in detail, followed by a discussion of lessons learned.


Mode of access: Internet.