Using a Macro Social Work Strategy to Improve Outreach in Parkinson's Disease Research.
Using a Macro Social Work Strategy to Improve Outreach in Parkinson's Disease Research.
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使用宏观社会工作策略来改善帕金森病研究的推广。
DOI：
10.1093/sw/swy026
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发表时间：
2018
期刊：
影响因子：
2.9
通讯作者：
Tickle-Degnen,Linda
中科院分区：
文献类型：
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作者：
SpragueMartinez,Linda;Thomas,CathiA;Saint-Hilaire,Marie;McLaren,Jaye;Young,Jaime;Habermann,Barbara;Tickle-Degnen,Linda
宏观实践旨在促进影响人们生活的系统的变化，因此重点放在个人和群体运作的生态背景上。宏观从业者从赋权和社会正义的角度出发，在很大程度上依赖于社区伙伴关系和参与，并关注可用于促进社会正义的社区优势和资产。为了吸引有色人种社区参与帕金森病（PD）研究，提高有色人种社区对帕金森病的认识，宏观社会工作策略被帕金森病社会自我管理（SocM-PD）研究小组的出现和发展所采用。SocM-PD是一项前瞻性队列研究，旨在研究PD患者的社会自我管理系统和轨迹（Tickle-Degnen et al., 2014）。PD临床试验参与存在差异；一项系统综述显示，非裔美国人在PD临床试验中的代表性尤其不足（Schneider等，2009）。在报告纳入有色人种的研究中，非裔美国人仅占研究人口的1.7%（仅针对有色人种的研究被排除在外）（Schneider等，2009）。然而，招聘挑战并非PD研究人员所独有。有色人种，尤其是非洲裔美国人和拉丁裔美国人，在临床研究中的代表性不足，而且很难招募（Hussain-Gambles, Atkin, & Leese, 2004; Mosenifar, 2007; Shavers-Hornaday, Lynch, Burmeister, & Torner, 1997）。施耐德等人（2009）描述了有色人种参与PD研究的障碍，包括缺乏PD信息、恐惧、耻辱和没有通常的主要来源
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