Monday, January 12, 2015

The Emerging Non Profit World in Saudi Arabia: A Promising Glimpse

By Tom Wolff


        The email arrived out of the blue in June of this year. The email was titled, “Invitation to speak at top Saudi NPO Conference!” They were inviting me to give a keynote address in early November at the annual non-profit conference at King Fahd University of Petroleum and Minerals in Khobar in the Kingdom of Saudi Arabia. I was baffled – how did they find me? Why did they want me? What were they asking of me?
     
        The last question was made clear in their email: “Knowing you are an expert, academic and consultant in the field of community development, we would like to invite you to speak at our conference and give a keynote presentation about community development and the role of the non-profit sector in light of the roles of the other two sectors (public, business).”

        So, over the next few weeks and months we talked, emailed and negotiated the topic and content of my talk. Ultimately it was titled: Enhancing Collaboration Across Government, Business and Non Profits: Building Healthy Communities in Saudi Arabia.  Throughout that time I wondered what they really wanted from me, what was awaiting me, and what was happening in Saudi Arabia. I let them know that all my community development work and healthy communities work is based on core principles of democracy and was that going to be okay to discuss in the Kingdom of Saudi Arabia (KSA)? They reassured me that it would be fine. So, I proceeded with their support to acquire a visa and booking flights etc.

        I read a few books on visiting Saudi Arabia and started to learn about the country as best I could from here in the US. I learned about the ‘religious police’ who enforce the wearing on burkas for women. I watched a wonderful Saudi movie, Wajdja, (from a female director) about a girl wanting to ride a bike (not acceptable). I checked out the websites on “women driving in Saudi Arabia” – which states that this is the only country in the world where women can’t drive. I learned that a large percent of the Saudi work force (especially lower level jobs) were performed by foreigners (ie 1.5 million from the Philippines). I read on the visa application that violations of Saudi drug laws were punishable by death. I was fascinated and remained baffled.

        I was told that there are 1400 non-profits in Saudi Arabia, 700 of them being Islamic teaching organizations. That leaves 700 doing the work that non-religious non-profits do here in the US. That’s not many non-profits, I imagine we have 700 non-profits just here in western Massachusetts.

        They later informed me that on top of the keynote they also wanted me to offer a 6 hour workshop on the actual ‘how to’s’ of community development and to consult on some of their projects while I was there --- it was going to be a busy visit.

        Just before leaving,  I learned of the amazing roster of presenters that they had lined up for this two day event:  Bunker Roy and Meagan Carnahan of the Barefoot College in India; Iqbal Quadir from MIT focused on inclusive ventures in low income countries ie. Grameenphone in Bangaladesh; Aaron Hurst on the Purpose Economy and  Pro Bono as a Powerful Solution; Rodrigo Baggio of Brazil Center for Schools on Digital Inclusion in Rio’s favelas; Tony Meloto who  builds sustainable communities in slum areas in the Philippines, Farm Village Universities; Robert Ashcroft from Arizona State University on  Creating and Sustaining Non -profit Workforce; Michael Grogan from Calgary, Canada on Workforce development in non-profit sector;, and Stephen Brien from England on Social Impact Bonds. This was a much more fascinating line up of speakers than I have heard at a US non-profit conference in decades.

        Most of them were much more prominent on the global scene than I was ie. Bunker Roy one of “the 100 most influential people in the world” and Rodrigio “top leader in South American to watch” both by Time Magazine. But as my visit evolved it became clear that my host, Salem Aldini (a professor of mechanical engineering), was planning to  develop a Non Profit Institute at King Fahd University and to launch community development projects across the country starting with a few pilots. This was my area of expertise.

        So I began to understand that I was chosen as someone who could convey specific processes and tools for their hand- picked audience of 150 non- profit and family foundation leaders. I could also expose them to tools in the Community Tool Box (ctb.ku.edu) which is translated into Arabic.



        During my four days I began on day one by working with a small group consultation with the faculty who would be the facilitators in my upcoming six hour workshop, gave the kick off keynote address, followed by an afternoon discussion session.  Then, two days later, a consultation to the teams planning the community development pilot and another team working on youth interventions who were looking for innovative ways of assessing youth needs. Finally I delivered a six hour workshop to a small hand chosen group of 35 non- profit and foundation leaders. It was a workout for them and me.

        The Saudi faculty, foundation and non- profit leaders whom I met with in the small group consultations were very serious about trying to bring community development innovations to the Saudi non- profit and foundation world. They asked lots of questions, took lots of notes. Clearly, they were most curious about this work. This is startling in light of the repression and limited practice of democracy in Saudi Arabia. We often got to the point in a discussion, especially when talking about evaluation and documentation, where they said that although the government collects data it is generally unavailable to those in the university, foundation and the non-profit world.

        In one small group I did learn of people working at the community level bringing the three sectors (business, government, non- profit) together to address crises over the last few years such as: the flooding in Jeddah, the influx of Kuwaiti refugees after the Gulf War, and helping female teachers get transportation to work.

        The second class citizenship of women was always present in our discussion. The keynote audience was all male in the auditorium, while the talk and slides were also shown in a separate conference room to the women. At the buffet breakfast one morning a woman in full burka addresses me; she was a participant in the other room – liked my talk but complained about Bunker’s Barefoot College because it took the Grandmas away from villages to become solar engineers. Why not take the men? She is Secretary General of the International Islamic Women’s Association. I asked if it was alright for me to sit with her for breakfast (I was fascinated). Although, she said ‘yes’, when I sat down she spent all her time of the cell phone – so I assumed it was not really acceptable and I moved.

        A few people attending the conference explained to me that Mohammed both worked and prayed side by side with his wife – so that the precedent for the separation of the women was not really clear.

        Of course, in most cultures, to my knowledge women do the core community building work, often below the radar. That has been true in almost all my community development and coalition building work in the US. But in KSA, it is tricky to build coalitions because men and women have to be separate – we were deep into a conversation about a planned model community development project in a limited geographic area (a city neighborhood) when I asked whether we would be able to mobilize the men and the women together – I was told “no”, that it would be two separate but coordinated efforts – mind boggling to an American community builder.

        But interestingly enough, at 9 PM in my workshop all of a sudden a number of the men left – I was later told that they had promised their wives that they would be home by 9 PM!



        Religious questions often surfaced during my visit. In almost all the question and answer sessions there would be statements about what the Koran said. Often these questions were not really questions but some statement of Islamic teachings that might or might not relate directly to what had just been said. Many of the Saudis were eager for us to leave with a better understanding of Islam. To that end, we were presented with copies of the Koran and a six set DVD set on understanding Islam.

        My workshop was entitled “Enhancing Collaboration with Government Business and Non Profits – A workshop on Tools and Processes for Success.”  It included an overview of collaboration, and the five key principles of collaborative solutions from my book (The Power of Collaborative Solutions). I helped them take a view of non-profit functions beyond individual, remedial work done by professionals and to expand to working with families, tribes, the whole society and going beyond remediation to include prevention, development and empowerment as legitimate non-profit functions. This seemed to be an important expansion of scope for them. We covered planning tools such as: coalition start up and planning, SWOT Analysis, visioning, force field analysis, developing a road map, barriers, tools for engaging the community and finally collaborative leadership. The Community Tool Box was demonstrated. The participants were eager to engage with all the material but it was hard to tell exactly how much they would actually take back with them and use. Doing an English/Arabic bilingual workshop for 35 participants over six hours with two breaks for prayer was a new experience for me. Having all the worksheets translated into Arabic was wonderful but it made it impossible for me to indicate which the appropriate page was. They all seemed to humor me as we proceeded, and I will be anxious to see the evaluations. The informal feedback after the workshop was very positive.

Some startling other learnings: 

  • English is the official language at King Fahd University (and also in the Saudi business world), KSA was described jokingly as the 51st US state.
  • The average size of a Saudi Family Foundations was said to be $10 Billion!
  • The warmth and hospitality of the Saudis was remarkable. People were always offering to help and sincerely interested in our well- being during the stay. One afternoon my very accommodating host, Ahmad, was going to take me to a store where we could buy dates to take back to my family. We went to the nearby mall but it was closed for prayer, so as we were leaving we saw two men having a cup of coffee (or Arabic tea). Ahmad asked them for a recommendation of a store and directions and they had a lengthy chat. We then went to find Ahmad’s car, but just like in the US who can find their car in a Mall’s parking lots? About five minutes later one of the men we had just talked to came running up. He had thought of a better date store for us to go to. Amazing hospitality! 


So what did I bring home?


        I loved the adventure and foreignness of the whole experience in a totally different culture.

        I was excited by the opportunities that Salem Aldini has opened up for a developing non-profit world in KSA.

        I am eager to help in the next phases of their progress. Many participants indicated that they were eager to have me come back – but in all honesty I am not sure that that wasn’t just Arabian hospitality and warmth. On the other hand, Salem informed me that he arranged for my visa to be good for five years (the visa is in Arabic so I have no idea what it says) – so maybe I will return. I would enjoy that.

        Also, I was able to reflect on how my enthusiasm for the future of non-profits in KSA did not match my experience of the non- profit world in the US in 2014. Here, I see the non- profit world becoming increasing conservative, become averse to risk, and to sticking their neck out and naming the issues that stare us in the face (racism, economic inequality, etc.). Maybe we in the US can re-capture that sense of adventure that comes from an emerging non-profit sector – but I am not sure what will make that happen.


Tom Wolff

Friday, January 2, 2015

Community Tool Box: 2015 Out of the Box Prize



The Community Tool Box is celebrating its 20th anniversary by hosting an Out of the Box Prize to honor innovative and promising approaches to promoting community health and development happening in communities worldwide. The Grand Prize winner will receive $5,000 USD. We hope you will submit your own application and video, and share the contest information with others.


ELIGIBILITY AND SELECTION CRITERIA

Groups engaged in building healthier and more just communities during the last three years can apply. This may include efforts to improve community health, education, urban or rural development; or to address poverty, the environment, or promote social justice. Applicants must be willing to have their group’s efforts shared via the Community Tool Box.

We are seeking to honor “out of the box”—innovative and high impact — approaches to bringing about change and improvement in communities. “Innovation” may include a unique or effective way of bringing about change, generating or using existing resources, or generating participation and advocacy for change. We seek clear descriptions of how applicants took action in the community; including Assessment, Planning, Taking Action, Evaluation, and Sustainability of the group’s efforts.

Download the application


AWARDS AND SELECTION PROCESS


  • Grand Prize: $5,000 cash award (USD)
  • Second Prize: $3,000 cash award (USD)
  • Award Finalists: Applicant stories will be shared via the Community Tool Box. Judges will select approximately 10 Finalists, whose stories will be posted on the Tool Box home page. Site visitors will vote on the Finalists to receive the top two prizes.

KEY CONTEST DATES


  • April 30, 2015: Deadline for submission of applications
  • August 1, 2015: Award Finalists posted on the homepage of the Community Tool Box; public voting begins
  • October 1, 2015: Public voting on Award Finalists closes
  • October 15, 2015: Grand Prize and Second Prize announced and awards given


View community stories from Out of the Box 2010.

To receive Out of the Box Prize updates and for other news and information from the Community Tool Box, please subscribe to our eNewsletter or follow us on Facebook.



The Community Tool Box Team

Friday, December 19, 2014

Community at the Heart of Safe Routes to School and Feet First

THEory into ACTion 

A Bulletin of New Developments in Community Psychology Practice 
December, 2014

Mary C. Benton, Seattle

        Recently I had the opportunity to speak with Lisa Quinn, the Executive Director of Feet First, about the Safe Routes to School (SRTS) grant program under the Washington State Department of Transportation (WSDOT). The objective is to enable and support active commuting (walking and biking) by school children and families. The program is multi-faceted and involves a wide range of community partners in health, public safety, education, and transportation.

        Developing safe routes for children to commute to and from school is obviously important from a public safety perspective. However, the implications extend beyond just issues of safety and accessibility. Active commuting can play an important role in student health and readiness to learn. For example, children who actively commuted to school showed lower levels of body fat and obesity (Mendoza et al., 2011). Additional research has demonstrated better academic performance and better attendance (Letsmoveschools.org, 2014) among those who actively commute.





        From the beginning, community involvement is at the heart of the SRTS grant program. Indeed, inclusion into the program requires that the members of the school apply for the grant. Once accepted, the school community remains an active participant throughout the process, partnering with key government and community organizations to help make active commutes safer and more enjoyable. This is where Feet First comes in.


        Feet First, Washington’s only pedestrian advocacy nonprofit organization, works to ensure that all communities across Washington are walkable (Feet First, 2014). And one of the most unique things they do is something called a walking audit” – an assessment of the municipal geography, the routes pedestrians take, and the obstacles they face in walking and biking. For the SRTS grant, Feet First organized a walking audit for each school and surrounding neighborhoods. Participants were given clipboards and maps of commute routes; children were given digital camera: and all were instructed to record their observations on a worksheet. Members of the community who were unable to participate in the walking audit were given worksheets electronically so they could submit their observations.


        According to Quinn, the key to a successful audit is involving the local residents – people who know the area, who live or work there, and know what it’s like to walk or bike around the neighborhood. In the case of the SRTS program, community members, parents, teachers and students were encouraged to join in and share their observations and feedback during the walking audit. Says Quinn, “It makes a big difference having the school principal on the walk. Experiencing the walk first hand has greater impact than simply receiving a copy of the walking audit”. Participating in the walking audit engenders more buy-in and ownership of the program for all who participate.





        At the end of the audit, Feet First compiled a report based on the feedback provided; the report is used to identify and prioritize commute improvements. Improvements are subject to community input and span a wide range of solutions and project partners. Solutions included engineering improvements such as sidewalks and curb bulbs from the Seattle Department of Transporation (SDOT), increased enforcement of speed limits in school zones from the Seattle Police Department (SPD), and encouraging local residents to trim vegetation to improve vehicle and pedestrian sightlines. 


        Approaches and solutions are individualized for each school community depending on the strengths, needs and challenges. For example, one of the schools is located at the top of a steep hill with a 70-foot elevation change. Obviously, walking and biking to this school presents unique challenges requiring innovative solutions. The result is Hike and Bike Fridays where student bike trains are led by the school physical education teacher and volunteers from the Cascade Bicycle Club (another community partner) from the local coffee shop (this is Seattle) up the hill and to school. 
        
        At another school, barriers to a safe route to school were transformed into a community strength. One of the main routes to school was through a park where there were crime concerns. Instead of simply avoiding the park, the local community center, White Center Community Development Association (WCCDA), whose goals include helping parents get involved in their children’s education and helping them understand how to work within the school to effect change, established a parent-led Walking School Bus through the park. A Walking School Bus is a group of children walking to school with one or more adults. The Walking School Bus had many benefits including empowerment of multilingual, multicultural families and the attainment of greater community connections in addition to creating a safer route to school. 

        Regardless of the school, the one constant in the SRTS Program is community involvement in all steps of the process: from grant application, to walking audit, and to approaches and solutions. The community IS the client. Which makes sense because they are the ones experiencing the environment well beyond the school day.



Works Cited:

Feet First. (2014). Retrieved from http://www.feetfirst.org/about-us/people

Let’s Move Schools. (2014) Retrieved from http://www.letsmoveschools.org/assets/lmas-

partner-infographic.pdf

Mendoza, J. A., Watson, K., Nguyen, N., Cerin, E., Baranowski, T., & Nicklas, T. A. (2011). 
Active commuting to school association with physical activity and adiposity among US youth. The Journal of Physical Activity and Health, 8, 488-495.


This is one of a series of bulletins highlighting the use of community psychology in practice. Comments, suggestions, and questions are welcome. Please direct them to Bill Berkowitz at Bill_Berkowitz@uml.edu.

Friday, December 5, 2014

Making a difference: Community Practice for Social Change

by JJ Ramirez

        A person with a mission to help their community and make a positive change can take many routes to accomplish their goal. The most popular schooling route is social work. Once the degree in social work is obtained, many will assist specifically individual or families with counseling or health care access. For those that want to help on a larger scale continue their schooling and enter either the mezzo or macro fields. Mezzo social workers assist with entire neighborhoods and institutions by helping with community organizing and management. Macro is the highest level assisting with states and countries with lobbying, policy research and advocacy.

        The following infographic by Case Western Reserve Universities Online Masters of Science in Social Administration explains this further, describing the growth of the social work and today’s most influential community practice leaders (click on the image to enlarge).



Tuesday, November 25, 2014

Using a Community Psychology Framework to Address the Digital Divide

THEory into ACTion

A Bulletin of New Developments in Community Psychology Practice
November, 2014

Brittney Cofield-Poole, North Carolina State University
Dawn X. Henderson, Winston-Salem State University

        A major goal of THEory into ACTion is to share innovations in community practice.  Nothing speaks innovation louder than advancements in technology over the past ten years (e.g., Google Glass, iPhone6, High Definition Television, etc.).  However, advancement alone is not indicative of access.  In fact, there is a digital divide across the world between individuals who have access to electronic technology (e.g., internet) and those who do not. According to Norris (2001), the digital divide encompasses three dimensions: 1) the global divide indicates disparities in Internet access between industrialized and developing countries; 2) the social divide indicates disparities between affluent and impoverished communities within these countries; and 3) the democratic divide indicates disparities between those who do and do not use digital resources to engage and participate in public life.  

        Developing countries and economically disadvantaged communities are faced with the challenge of accessing technologies and moving toward digital literacy. By improving digital literacy and resources, individuals can be empowered to access information and use technologies to address a variety of issues faced within their communities.

        For many citizens, accessing technologies and moving toward digital literacy can be challenging and difficult to navigate.  Programs that address the “digital divide” are needed, specifically those that provide technology access through outreach and education.  Responding to this need, Raleigh Digital Connectors is an initiative developed by the City of Raleigh (North Carolina) to increase youths’ digital literacy. The program is nationally renowned and provides “technology training and mentoring for youth, ages 14-21. The program offers young people a chance to expand 21st century technology skills, professional life skills, participation in open data projects, exploration of career pathways, and serve their communities” (Raleigh Digital Connectors, 2014).  Brittney Cofield-Poole, a doctoral student in Psychology in the Public Interest Program at North Carolina State University, is using her training in community psychology to drive this effort forward.  



        Cofield-Poole serves as the program’s Community Outreach Support Specialist and has been integral in working with Raleigh’s IT Department in conducting training for partnering organizations and developing and implementing evaluation. Competencies associated with empowerment, group processes, and community leadership are vital in her role and shape how she works with community partners, staff, and youth.  Not only does she develop programmatic evaluations that examine youth as civic participants, but she also designs interactive classroom activities that aim to increase students’ awareness as global citizens and engagement in service-learning projects. 

        For instance, youth are engaged in technology centered service-learning projects such as refurbishing computers for families in need and conducting digital literacy trainings in communities with limited technological capital.  She also works with youth in implementing the curriculum, which plays an important role in increasing youths’ knowledge of technology as a catalyst for promoting personal and economic success. Youth are engaged in discussions around the relationship between socio-economic status and access to technology and begin to see that there is value in technology access beyond a recreational capacity. 



        Cofield-Poole is a member of a small (three-person) IT team; however, each individual brings a unique perspective and serves as a champion for using technology in improving communities. The program manager focuses on the big picture of program sustainability, the instructor concentrates on class dynamics that promote technology relevancy, and Cofield-Poole brings a research-grounded toolkit that supports all facets of the program’s evolution.  In particular, she played an important role in developing a curriculum that was based on evidence-based models. Moreover, her previous experience in community-based participatory research and civic engagement assists the program in creating avenues that bolster youth as change agents and not simply passive recipients of afterschool services.   

        Using community psychology as a framework, Cofield-Poole embeds learning technology within concepts of ethics, the socio-ecological model, and social structure dynamics. This framework guides curriculum activities and trainings with other youth-serving departments within the city.  For example, when working with youth and other staff, a socio-ecological model is used to understand information dissemination across multiple systems.  Through discussions with youth and partners, everyone can envision how civic innovation and technology serve as useful tools in community development.  Above all, putting youth at the center of digital literacy and empowering them to go within their communities to develop projects creates a reciprocal process between youth and their contexts. 

        The values of community psychology and training also engender the use of multiple perspectives and strong research skills that incorporate both quantitative and qualitative methods in designing evaluation. To examine impact, the evaluation plan includes pre/post programmatic surveys and a mid-program focus group with youth.  Data collection is implemented at various phases of the project to examine the impact of participation on an individual level as well as to receive feedback [from stakeholders] to improve learning modules, program structure, and community integration.  

        There are challenges associated with transitioning from graduate training to the real world. Coursework and hypothetically-focused research papers do not provide the proper hands-on learning experience that tangible community work can give.   Cofield-Poole, for instance, faces the challenge of translating theory into practice and balancing community psychology principles and values within a government setting.  Often administrative structures can create barriers that make program expansion difficult to achieve.  For one example, engaging in systems change with bureaucratic limitations and in socio-political contexts requires a unique skill set and savvy to navigate. There are also tensions when one has to justify why community-oriented initiatives are worth the investment. By designing and implementing evaluation, Cofield-Poole aims to produce evidence that demonstrates the program is working. Through the evaluation plan, feedback loops have been created and have illustrated youth gains from participation in Raleigh Digital Connectors across a variety of outcomes.  

        The inclusion of a community psychology framework enhances the ways in which the program integrates youth, their experiences, and that of their contexts. Accordingly, empowering youth, strengthening community connections, and having a solid foundation in methodology are important in the program’s efforts in promoting digital literacy and addressing the digital divide.  

Works Cited:

Norris, P. (2001). Digital divide: Civic engagement, information poverty, and the Internet worldwide. New York, NY: Cambridge University Press


This is one of a series of bulletins highlighting the use of community psychology in practice. Comments, suggestions, and questions are welcome. Please direct them to Bill Berkowitz at Bill_Berkowitz@uml.edu


Saturday, November 15, 2014

Advances in Psychological Research on ME/CFS: Turning Theory into Action

THEory into ACTion

A Bulletin of New Developments in Community Psychology Practice 
October, 2014

Taylor Thorpe and Kelly O’Connor
Center for Community Research
DePaul University

        Turning theory into action is essential within the field of Community Psychology. For those of us focused on macro-level empowerment and social change, demonstrating the practical effectiveness of research findings in the field is crucial. Under the direction of Dr. Leonard Jason, DePaul University’s Center for Community Research currently hosts a number of projects exemplifying theory in action. One research focus of the Center is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
        ME/CFS is currently a hot topic among researchers and physicians. The name “Chronic Fatigue Syndrome” has led to many negative connotations, and in turn research suffered due to lack of funding and disbelief in the reality of the illness. Patients assert, and research supports, that fatigue is only one of many debilitating symptoms associated with this illness. Post-exertional malaise (feeling worse after exertion), memory and attention problems, sleep dysfunction, muscle and joint pain, swollen lymph nodes, and sore throat are all symptoms uniquely characteristic to ME/CFS. Further, the name “Chronic Fatigue Syndrome” gives the impression that this illness is not to be taken seriously, making way for the colloquial reference to this condition as the “yuppie-flu” by some medical professionals – that is, everyone gets fatigued at some point or another, so what makes this patient group different from others? Currently, many efforts are being put forth to change the name so as to avoid downplaying and insulting the everyday reality of the patient community.
        The cause of the illness is not yet definitively known. Research suggests that mold may be one of the possible pathways to developing ME/CFS. Other research suggests viral infections lead to the development of this illness. At the Center for Community Research, one of our current NIH-funded studies, A Prospective Health Study of CFS Following Infectious Mononucleosis in College Students, aims to identify possible risk factors and biomarkers that predispose college students to develop CFS.
        Previous studies have assessed the prevalence of ME/CFS following infectious mononucleosis (IM), finding that 12% of those who contracted IM develop ME/CFS at 6 months. The current study aims to expand on these findings by comparing baseline data to data collected from students after the development of IM and ME/CFS at 6 and 12 months. Results from this study will provide information on the risk factors (psychological and physiological) and development of ME/CFS in college students.
        This study is an excellent example of theory in action in that the results hold implications for ME/CFS prevention and treatment.  Committing time to exploring possible physiological causes and trajectories of ME/CFS first validates the experiences and testimony of patients. It also contributes to the case definition of ME/CFS, which thereby debunks myths and negative connotations associated with the illness (i.e., that it is not a real or serious illness). By assessing biomarkers, symptoms, possible risk factors, and causes associated with ME/CFS, the legitimacy of the illness is established and steps towards awareness, prevention and treatment are made.
        Additionally, ME/CFS research has traditionally gathered data from patients within clinics or physician-referred patients, samples of which have been predominantly white, middle-class women. This sampling bias has further encouraged the stigma towards ME/CFS and the use of the nickname “yuppie flu.” In the 1990’s, Dr. Jason and his colleagues conducted a study to determine the prevalence of ME/CFS among adults using a community-based sample and found that despite common misconceptions of the patient population, ME/CFS actually occurs more frequently among minority populations. Other ME/CFS research using community-based samples has yielded similar results. Under-served populations are less likely to have access to or seek out adequate health care, which may explain why they have been under-represented in previous research on physician or clinic-referred samples of patients with ME/CFS. Evidence provided by previous research suggests community-based samples are critical for obtaining unbiased results with higher external validity and may shed light on the needs of underserved populations.



Putting this theory into action, Pediatric Chronic Fatigue Syndrome (CFS) in a Community-Based Sample, another NIH-funded study being conducted at the Center for Community Research, aims to determine the prevalence of ME/CFS in youth ages 5-17 from a demographically diverse, unbiased sample of community members. This is the first pediatric ME/CFS study to utilize community-based sampling methods.
        Another unique aspect of this study is that it is multi-dimensional, gathering information on children’s mental and physical health from assessments by psychologists, physicians, the parent/guardian, and the child, as well as from objective data obtained from an actigraph monitor that measures their activity level over a period of 24-hours. A common misconception about ME/CFS is that its origin is psychological. Patient communities often express their distaste towards this assumption, explaining it makes them feel like their illness is being discounted or that people don’t believe their illness is real – that if they really wanted to be more active, they could be if they just went to therapy. By incorporating a psychological assessment into participant assessment, we are able to show that the existence of pediatric ME/CFS is not concurrent with psychological disorders.
        This study is a collaboration with Lurie Children’s Hospital, which allows for a full physical exam to be conducted on the child by a physician. This part of the study includes a blood draw, urine collection, a saliva test, and a heart rate and blood pressure procedure that measures orthostatic intolerance. The blood, urine, and saliva samples are analyzed to determine whether there are any issues with their thyroid, iron level, organ health, blood sugar, and other common health issues that may cause symptoms similar to ME/CFS. This in-depth examination of a child’s physical health further adds to this study’s uniqueness because it rules out any exclusionary health conditions.
        In a research area that has been cluttered with biased sampling methods, stigma towards patients and the illness itself, confusion among doctors and researchers due to the use of multiple case definitions, and a longstanding chasm between patients and doctors on the origin and treatment of ME/CFS, the studies conducted at the Center for Community Research aim to be unbiased, methodologically sound, and to produce valid and reliable results that continuously exemplify theory into action.

    This is one of a series of bulletins highlighting the use of community psychology in practice. Comments, suggestions, and inquiries are welcome. Please direct them to Bill Berkowitz at Bill_Berkowitz@uml.edu.





Friday, November 7, 2014

Our Experience Transforming THEory into ACTion as early-career community psychologists


by Yolonda Williams, Ph.D. and Rachel L. Jantke, M.A.



Following text by Yolonda Williams, Ph.D.

      When you ask most community psychologist about their research areas or topics of interest, many of them can share in great details about a specific topic(s) that they are most passionate about. Their research interests are usually varied across an assortment of disciplines such as financial literacy, PTSD among veterans, education reforms, health disparities within marginalized communities or disadvantage populations, etc. The point is most community psychologist will always maintain their research interest of choice. However, I believe that I differ in that perspective due to my lack of commitment to one specific research area. Instead, my over-arching goal is to create positive change within various forms of capacity (i.e., communities, workplace environments, nonprofit organizations, school, etc.).
  During my doctoral studies at National Louis University, I learned how to apply collaborative research and action into various theoretical frameworks in an effort to create positive change. Since graduating in 2012 with my PhD in community psychology, I have developed a sincere appreciation of the versatility that community psychology offers students. This field provides a framework that allows me to develop and enhance various skills such as consulting, program evaluation, and community organizing in a broader sense. My skill sets are not only applicable in communities’ settings, but in organizations, government agencies and school settings as well. In addition, community psychology also empowers me to embrace my lack of interest to one specific area and appreciate my desire to create positive change in an array of capacities even more.
  Currently, I work at DePaul University’s Center for Community Research as a Project Director, under the direction of Dr. Leonard A. Jason. My duties include managing a large scale NIH-funded longitudinal prospective study examining chronic fatigue syndrome following infectious mononucleosis in college students. This prospective study is the first of its kind because it follows the trajectory of subjects from a baseline healthy status and is also designed to collect pre-illness data to examine the psychological and biological factors that would cause college students to develop chronic fatigue syndrome (CFS) following an onset of mono. The pathophysiological underpinnings of the development of chronic fatigue syndrome are poorly understood. Therefore, identifying risk factors that predispose patients to develop CFS may help uncover the underlying mechanisms.
      Several studies have examined the relationship between infectious mononucleosis (IM) and the development of CFS. However, it is unclear which psychological and biological variables are potential risks factors contributing to the development of CFS following IM because few prospective studies have collected baseline data before the onset of IM.




Following text by Rachel L. Jantke, M.A.

      Upon completion of my B.A. in Psychology, my intention was to advance through graduate school and become a clinical psychologist.  It was while earning my M.A. in Clinical Psychology that I realized the field of community psychology would afford the possibility of influencing macro-level change, and so I shifted my academic focus to Community Psychology doctoral programs.
  During my doctoral studies at National Louis University in Chicago, IL , I was able to apply program evaluation theories by working with two community-based non-profit organizations. The nature of this work allowed me to utilize the community psychology theories as a vehicle to write grant applications, create logic models, develop evaluation tools, and complete a comprehensive consultation for a community organization.  In addition, my dissertation is a program evaluation piece examining the impact of an in-school program on elementary school students, and relies on theories of empowerment and sense of community as contributing factors in the academic success of urban youth.  I am broadly interested in research methodology, study design, and program evaluation, which can instead be applied to a range of topic areas.
  Concurrently, I serve as a Project Director at DePaul University’s Center for Community Research in Chicago, IL, under the direction of Dr. Leonard A. Jason, where I am responsible for managing a 5-year NIH-funded epidemiological study titled Pediatric Chronic Fatigue Syndrome (CFS) in a Community-Based Sample.  This study is the first of its kind to examine prevalence rates of CFS among children, and utilizes a variety of approaches to generate a stratified random sample, including community visits to involve participants.
      The first generation of adult chronic fatigue syndrome (CFS) prevalence studies recruited samples from treatment settings and concluded that patients with CFS affected primarily Caucasian, middle- to- high-income groups, and this notion led to the inappropriate attribution of CFS being a Yuppie flu illness. Almost all we know about pediatric CFS is based on patients from primary and tertiary care settings, and these youth might not be representative of pediatric CFS in the general population. Biased sampling methods to identify pediatric cases of CFS have impeded efforts to understand the true prevalence of this illness as well as the nature of the condition, similar to what occurred with the first generation of adult CFS epidemiologic studies.
      The present study will determine the prevalence of pediatric CFS by studying a community based, demographically diverse sample of participants, unbiased by illness, help-seeking behaviors, or differential access to the health care system. Major strengths of this project are the diversity of the population, identification of cases from the community, and comparing these samples with community controls. This study is utilizing a community-based sample, and will determine the relative frequency of CFS among various groups (e.g., different age groups, gen-ders, racial/ethnic groups).




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