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 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. A Macro Social Work–Informed PD Outreach Strategy Primary and secondary assets in the PD community in and around Massachusetts—as well as assets in Boston neighborhoods with high concentrations of people of color not connected to the PD community—were mapped. Within the PD community support groups, programs and community events designed for individuals with PD and their caregivers were explored. In the broader community, the focus was on assets across multiple sectors of community life, such as religious, cultural, health, social services, elder-serving organizations, housing communities, media outlets, and community wellness events. Identified assets were categorized using a spreadsheet. Assets were grouped on the basis of the services and programming provided by the organization—for example, health care delivery organizations, housing supports, religious institutions, media outlets, and advocacy organizations. Spreadsheet data were imported to Google Earth to explore the geographic distribution of identified assets. In addition, based on Kretzmann and McKnight (1993), we determined the extent to which assets were locally controlled and operated, and the location of each asset. Primary and secondary assets were contacted by telephone and visited in person by members of the research team who shared general information about PD and information about the SocM-PD study. Sites were also invited to host educational sessions, which described PD symptoms and strategies for communicating with primary care providers about healthy aging. Sessions were available in English and Spanish. Outcomes Of the assets identified during our community outreach, primary assets included locally owned media outlets and PD support groups, as well as religious and cultural organizations. Secondary assets fell into the following categories: community health centers, hospitals, senior housing sites, community development corporations, social services organizations, and libraries. Potential assets identified included the following: elder services and local policymakers focused on elder issues. Insurers were also identified as potential assets, although we did not disseminate information to them. Figure 1 (based on Kretzmann & McKnight, 1993) provides an illustration of organizational assets identified in the community. Figure 1: View largeDownload slide Asset Map Figure 1: View largeDownload slide Asset Map In total, information about PD and the study was disseminated at 308 locations; 32 informational sessions about PD and healthy aging were held, and presentations about the study were made for 35 support groups. Figure 2 illustrates the geographic distribution of (a) PD-specific assets (support groups and programs) and (b) assets embedded in communities of color. Figure 2: View largeDownload slide Massachusetts Outreach Map and Boston Outreach Map Figure 2: View largeDownload slide Massachusetts Outreach Map and Boston Outreach Map The PD community demonstrated high awareness of PD, whereas among communities of color not connected to the PD community, knowledge of PD varied greatly. Within the PD community we found greater levels of interest in the SocM-PD study in cases where leaders shared positive personal experiences with research and were excited about research. When leaders were neutral, people were less likely to request further information. Educational sessions were well received by housing sites; however, resident awareness of PD was low. In-person outreach in communities of color was more effective than telephone and e-mail outreach. Lessons Learned Using the tools of macro practice social work aided in our ability to understand community systems and dynamics. Meanwhile, identifying and connecting with organizational leaders helped with the identification of individual assets and expanded our team’s reach. The more time we spent in the community, the more organizational contacts we received for sites interested in learning more about PD. Taking the time to provide resident forums and information sessions related to healthy aging and PD enhanced our relationships with housing and support organizations and increased community awareness. While spending time in the community, we learned about the extent to which health promotion programming designed for older adults of color in Boston is predominantly focused on chronic diseases such as diabetes, hypertension, cardiovascular disease, obesity, and cancer. During outreach and information sessions at community housing sites, we found few older adults of color with an awareness of chronic neurological conditions like Alzheimer’s and PD. Of note was the frequency with which older adults we spoke with saw these two very different conditions as being the same. Those who did report knowing about PD shared that they had a personal relationship with someone with a PD diagnosis. We found that there is great diversity with respect to the organization and structure of PD-specific groups. Among groups, some identified as traditional support groups, lending sympathetic ears to one another. Others were solely focused on the dissemination of community resources and symptom management. Nontraditional PD groups focused on healthy aging through active engagement in exercise. Group size varied dramatically, ranging from three to 27 attendees; group venues included churches, community centers, independent and dependent living accommodations, and fitness centers. We found few people of color participating in PD groups. Of note, the majority of PD support groups are in suburban communities; only one was identified in the city of Boston. Overall, community and organizational leaders were open to participating in educational, social, and research opportunities; this was true in both the PD community and the communities of color. The leaders of PD groups set the tone for their members. Many, for example, were adamant about getting their members involved in research as a way to give back to the PD community. They spoke about each and every person’s role in enhancing PD awareness and understanding, emphasizing a collective responsibility to increase quality of life for individuals living with PD, their families, and those who will be diagnosed in the future. A significant number of community leaders were skeptical of research. This hesitancy stemmed from unfamiliarity with research and previous negative experiences, including results not being reported back at the end of the study or feelings of being “over-tapped” by researchers to help with recruitment alone. However, even those not interested in the research were interested in the information about healthy aging and PD. Conclusion The barriers to engaging individuals with PD are complex; a lack of PD awareness and the absence of discourse related to healthy aging and PD in communities of color play a role. Although the prevalence of PD in communities of color is not clear, there are indicators that underdiagnosis persists (Branson & Saint-Hilaire, 2017). The more aware communities of color are of the signs and symptoms associated with PD, the more likely they will be diagnosed. Similarly, the more community providers are thinking about PD, the more likely they will be to discuss it. Community-driven campaigns and strategies conducted in partnership with community stakeholders may improve awareness. This might include campaigns designed in collaboration with religious and secular leaders as well as residents; older adult research advocacy training; hiring local community members who reflect the racial and ethnic makeup of the target population, to inform the development and implementation of research, as well as volunteer registries for neurodegenerative disorders; and engaging macro social workers as research team members and in the training of PD research teams in community partnership research. References Alvarez , R. A. , Vasquez , E. , Mayorga , C. C. , Feaster , D. J. , & Mitrani , V. B. ( 2006 ). Increasing minority research participation through community organization outreach . Western Journal of Nursing Research, 28 , 541 – 560 . Google Scholar CrossRef Search ADS Branson , C. , & Saint-Hilaire , M. ( 2017 ). A short commentary on the racial disparities in Parkinson’s disease . Journal of Neurological Disorders, 5 ( 338 ), 2 . doi:10.4172/2329-6895.1000338 Hussain-Gambles , M. , Atkin , K. , & Leese , B. ( 2004 ). Why ethnic minority groups are under-represented in clinical trials: A review of the literature . Health and Social Care in the Community, 12 , 382 – 388 . Google Scholar CrossRef Search ADS Kretzmann , J. P. , & McKnight , J. ( 1993 ). Building communities from the inside out: A path toward finding and mobilizing a community’s assets . Evanston, IL : Northwestern University, Center for Urban Affairs and Policy Research, Neighborhood Innovations Network . Mosenifar , Z. ( 2007 ). Population issues in clinical trials . Proceedings of the American Thoracic Society, 4 , 185 – 188 . Google Scholar CrossRef Search ADS Schneider , M. G. , Swearingen , C. J. , Shulman , L. M. , Ye , J. , Baumgarten , M. , & Tilley , B. C. ( 2009 ). Minority enrollment in Parkinson’s disease clinical trials . Parkinsonism & Related Disorders, 15 , 258 – 262 . doi:10.1016/j.parkreldis.2008.06.005 Google Scholar CrossRef Search ADS Shavers-Hornaday , V. L. , Lynch , C. F. , Burmeister , L. F. , & Torner , J. C. ( 1997 ). Why are African Americans under-represented in medical research studies? Impediments to participation . Ethnicity & Health, 2 , 31 – 45 . Google Scholar CrossRef Search ADS Sprague Martinez , L. , Freeman , E. R. , & Winkfield , K. M. ( 2017 ). Perceptions of cancer care and clinical trials in the black community: Implications for care coordination between oncology and primary care teams . Oncologist, 22 , 1094 – 1101 . Google Scholar CrossRef Search ADS Tickle-Degnen , L. , Saint-Hilaire , M. , Thomas , C. A. , Habermann , B. , Martinez , L. S. , Terrin , N. , et al. . ( 2014 ). Emergence and evolution of social self-management of Parkinson’s disease: Study protocol for a 3-year prospective cohort study . BMC Neurology, 14 , 95 . doi:10.1186/1471-2377-14-95 Google Scholar CrossRef Search ADS Young , I. M. ( 2009 ). Five faces of oppression. In G. Henderson & M. Waterstone (Eds.), Geographic thought: A praxis perspective (pp. 55 – 71 ). New York : Routledge . © 2018 National Association of Social Workers This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Social Work Oxford University Press

Using a Macro Social Work Strategy to Improve Outreach in Parkinson’s Disease Research

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Publisher
Oxford University Press
Copyright
© 2018 National Association of Social Workers
ISSN
0037-8046
eISSN
1545-6846
D.O.I.
10.1093/sw/swy026
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Abstract

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. A Macro Social Work–Informed PD Outreach Strategy Primary and secondary assets in the PD community in and around Massachusetts—as well as assets in Boston neighborhoods with high concentrations of people of color not connected to the PD community—were mapped. Within the PD community support groups, programs and community events designed for individuals with PD and their caregivers were explored. In the broader community, the focus was on assets across multiple sectors of community life, such as religious, cultural, health, social services, elder-serving organizations, housing communities, media outlets, and community wellness events. Identified assets were categorized using a spreadsheet. Assets were grouped on the basis of the services and programming provided by the organization—for example, health care delivery organizations, housing supports, religious institutions, media outlets, and advocacy organizations. Spreadsheet data were imported to Google Earth to explore the geographic distribution of identified assets. In addition, based on Kretzmann and McKnight (1993), we determined the extent to which assets were locally controlled and operated, and the location of each asset. Primary and secondary assets were contacted by telephone and visited in person by members of the research team who shared general information about PD and information about the SocM-PD study. Sites were also invited to host educational sessions, which described PD symptoms and strategies for communicating with primary care providers about healthy aging. Sessions were available in English and Spanish. Outcomes Of the assets identified during our community outreach, primary assets included locally owned media outlets and PD support groups, as well as religious and cultural organizations. Secondary assets fell into the following categories: community health centers, hospitals, senior housing sites, community development corporations, social services organizations, and libraries. Potential assets identified included the following: elder services and local policymakers focused on elder issues. Insurers were also identified as potential assets, although we did not disseminate information to them. Figure 1 (based on Kretzmann & McKnight, 1993) provides an illustration of organizational assets identified in the community. Figure 1: View largeDownload slide Asset Map Figure 1: View largeDownload slide Asset Map In total, information about PD and the study was disseminated at 308 locations; 32 informational sessions about PD and healthy aging were held, and presentations about the study were made for 35 support groups. Figure 2 illustrates the geographic distribution of (a) PD-specific assets (support groups and programs) and (b) assets embedded in communities of color. Figure 2: View largeDownload slide Massachusetts Outreach Map and Boston Outreach Map Figure 2: View largeDownload slide Massachusetts Outreach Map and Boston Outreach Map The PD community demonstrated high awareness of PD, whereas among communities of color not connected to the PD community, knowledge of PD varied greatly. Within the PD community we found greater levels of interest in the SocM-PD study in cases where leaders shared positive personal experiences with research and were excited about research. When leaders were neutral, people were less likely to request further information. Educational sessions were well received by housing sites; however, resident awareness of PD was low. In-person outreach in communities of color was more effective than telephone and e-mail outreach. Lessons Learned Using the tools of macro practice social work aided in our ability to understand community systems and dynamics. Meanwhile, identifying and connecting with organizational leaders helped with the identification of individual assets and expanded our team’s reach. The more time we spent in the community, the more organizational contacts we received for sites interested in learning more about PD. Taking the time to provide resident forums and information sessions related to healthy aging and PD enhanced our relationships with housing and support organizations and increased community awareness. While spending time in the community, we learned about the extent to which health promotion programming designed for older adults of color in Boston is predominantly focused on chronic diseases such as diabetes, hypertension, cardiovascular disease, obesity, and cancer. During outreach and information sessions at community housing sites, we found few older adults of color with an awareness of chronic neurological conditions like Alzheimer’s and PD. Of note was the frequency with which older adults we spoke with saw these two very different conditions as being the same. Those who did report knowing about PD shared that they had a personal relationship with someone with a PD diagnosis. We found that there is great diversity with respect to the organization and structure of PD-specific groups. Among groups, some identified as traditional support groups, lending sympathetic ears to one another. Others were solely focused on the dissemination of community resources and symptom management. Nontraditional PD groups focused on healthy aging through active engagement in exercise. Group size varied dramatically, ranging from three to 27 attendees; group venues included churches, community centers, independent and dependent living accommodations, and fitness centers. We found few people of color participating in PD groups. Of note, the majority of PD support groups are in suburban communities; only one was identified in the city of Boston. Overall, community and organizational leaders were open to participating in educational, social, and research opportunities; this was true in both the PD community and the communities of color. The leaders of PD groups set the tone for their members. Many, for example, were adamant about getting their members involved in research as a way to give back to the PD community. They spoke about each and every person’s role in enhancing PD awareness and understanding, emphasizing a collective responsibility to increase quality of life for individuals living with PD, their families, and those who will be diagnosed in the future. A significant number of community leaders were skeptical of research. This hesitancy stemmed from unfamiliarity with research and previous negative experiences, including results not being reported back at the end of the study or feelings of being “over-tapped” by researchers to help with recruitment alone. However, even those not interested in the research were interested in the information about healthy aging and PD. Conclusion The barriers to engaging individuals with PD are complex; a lack of PD awareness and the absence of discourse related to healthy aging and PD in communities of color play a role. Although the prevalence of PD in communities of color is not clear, there are indicators that underdiagnosis persists (Branson & Saint-Hilaire, 2017). The more aware communities of color are of the signs and symptoms associated with PD, the more likely they will be diagnosed. Similarly, the more community providers are thinking about PD, the more likely they will be to discuss it. Community-driven campaigns and strategies conducted in partnership with community stakeholders may improve awareness. This might include campaigns designed in collaboration with religious and secular leaders as well as residents; older adult research advocacy training; hiring local community members who reflect the racial and ethnic makeup of the target population, to inform the development and implementation of research, as well as volunteer registries for neurodegenerative disorders; and engaging macro social workers as research team members and in the training of PD research teams in community partnership research. References Alvarez , R. A. , Vasquez , E. , Mayorga , C. C. , Feaster , D. J. , & Mitrani , V. B. ( 2006 ). Increasing minority research participation through community organization outreach . Western Journal of Nursing Research, 28 , 541 – 560 . Google Scholar CrossRef Search ADS Branson , C. , & Saint-Hilaire , M. ( 2017 ). A short commentary on the racial disparities in Parkinson’s disease . Journal of Neurological Disorders, 5 ( 338 ), 2 . doi:10.4172/2329-6895.1000338 Hussain-Gambles , M. , Atkin , K. , & Leese , B. ( 2004 ). Why ethnic minority groups are under-represented in clinical trials: A review of the literature . Health and Social Care in the Community, 12 , 382 – 388 . Google Scholar CrossRef Search ADS Kretzmann , J. P. , & McKnight , J. ( 1993 ). Building communities from the inside out: A path toward finding and mobilizing a community’s assets . Evanston, IL : Northwestern University, Center for Urban Affairs and Policy Research, Neighborhood Innovations Network . Mosenifar , Z. ( 2007 ). Population issues in clinical trials . Proceedings of the American Thoracic Society, 4 , 185 – 188 . Google Scholar CrossRef Search ADS Schneider , M. G. , Swearingen , C. J. , Shulman , L. M. , Ye , J. , Baumgarten , M. , & Tilley , B. C. ( 2009 ). Minority enrollment in Parkinson’s disease clinical trials . Parkinsonism & Related Disorders, 15 , 258 – 262 . doi:10.1016/j.parkreldis.2008.06.005 Google Scholar CrossRef Search ADS Shavers-Hornaday , V. L. , Lynch , C. F. , Burmeister , L. F. , & Torner , J. C. ( 1997 ). Why are African Americans under-represented in medical research studies? Impediments to participation . Ethnicity & Health, 2 , 31 – 45 . Google Scholar CrossRef Search ADS Sprague Martinez , L. , Freeman , E. R. , & Winkfield , K. M. ( 2017 ). Perceptions of cancer care and clinical trials in the black community: Implications for care coordination between oncology and primary care teams . Oncologist, 22 , 1094 – 1101 . Google Scholar CrossRef Search ADS Tickle-Degnen , L. , Saint-Hilaire , M. , Thomas , C. A. , Habermann , B. , Martinez , L. S. , Terrin , N. , et al. . ( 2014 ). Emergence and evolution of social self-management of Parkinson’s disease: Study protocol for a 3-year prospective cohort study . BMC Neurology, 14 , 95 . doi:10.1186/1471-2377-14-95 Google Scholar CrossRef Search ADS Young , I. M. ( 2009 ). Five faces of oppression. In G. Henderson & M. Waterstone (Eds.), Geographic thought: A praxis perspective (pp. 55 – 71 ). New York : Routledge . © 2018 National Association of Social Workers This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

Journal

Social WorkOxford University Press

Published: May 2, 2018

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