September182012

Biggest Limitation to Study

Lack of Parent Focus Groups

  • The biggest limitation to this study is the lack of conducted parental focus groups.
  • The decision to use solely promotoras in the development of the health promotional items materials was to conserve the research team’s modest funds.  
  • Therefore, the research team relied solely on literature, previous focus groups with promotoras, and the focus groups conducted during the current study. 
  • Although the promotoras were mostly extremely useful in understanding ways to market and tailor information, some of their responses emphasized the dissimilarities between parents and semi-professional community health workers.
  • The fact that the promotoras noticed that potential problems could result from some of the original brochure’s specific information (types of autism, causes of autism, treatments) validated our hypotheses that some of the information could instill more questions than answers in concerned mothers. However, the promotoras’ suggested solutions were not expected.  Instead of advising the removal or consolidation of information, the promotoras suggested that more detailed information be included on most topics in the brochure.  We believe this demonstrates the promotoras’ interest in the topics instead of a reflection of the parents’ needs.  
  • Based on these discussions, the research team believes that it may be difficult at times for the promotoras to separate themselves from their health education role to answer questions on community members’ behalf instead of their personal interests. 
  • It was therefore concluded that the promotora opinions could not be taken as proxies for the opinions of parents. 
  • Therefore, although the detailed information is clearly important for the promotoras, it was not necessarily included in the final brochure.  The promotora suggestions were held to the constraints of the available brochure space and the requirements to meet the theoretical framework.  
  • All of the suggestions given by the promotoras were saved and will be revisited in the construction of the train-the-trainer curriculum.  
9PM

(Almost) FINAL PRODUCTS!

The majority of the focus group and health services investigation findings were applied in the final edition of the brochure.

Here are the ALMOST final drafts of the brochure. I seem to only have the second last versions saved on my thumb drive. When I find the others ( I am sure they are in my email somewhere) I will post them.

The final application of the Health Belief Model constructs to the brochure can be viewed below:

September62012

Long Time, No Write

Hello Tumblrs,

My apologies. My project consumed more and more of my time as the month progressed and I found myself a bit overwhelmed. Although I completed my project and am no longer in South Texas, I still fully intend to let all of you know how the project progressed. Fortunately, I kept very good notes throughout the rest of the assignment.  I will also try to post the entries according to the date on which they occurred, so keep a look-out!

-Monica

August142012

Health Services Investigation- FINAL Discussion

Last Discussion piece about this, Tumblrs, I promise:

As a review, I conducted an autism services investigation the South Texas to learn what resources are available (available= close, affordable and bi-lingual) for children with autism. Here are the LAST notes about what I learned as a result of the ASD Health Services Investigation in the Rio Grande Valley:

  • Although the CDC has a wide array of ASD brochures available for download, the information was not tailored to the needs of the target population of South Texas.
  • The pamphlets were written in Spanish, but the reading level was higher than what many residents would feel comfortable reading. 
  • Certain words were not applicable to the specific Mexican-American population in South Texas.
  • Maybe most importantly, the telephone number provided on the pamphlets would have been essentially useless for a Spanish-only speaking parent. Not only were there numerous redirected calls, but few of the people spoke Spanish and few had someone available who did speak Spanish. 
  • It should be noted that although the CDC’s brochures would not be very useful in this area of the country, the CDC should not be blamed for this. 
  • One organization cannot possibly be responsible for tailoring information to all demographics. 
  • It is the responsibility of the states and local communities/organizations to take on this task-much like we did. 
  • Community-based professionals are much more inclined to understand the needs of the community than someone in Atlanta, Georgia. 
  • It should also be noted that a critical component to tailoring information should be to experience-first hand-the process it takes to get help. By doing this, we can eliminate one of the biggest barriers to treatment- access.

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12PM

Health Services Investigation- Discussion 2

Hey Tumblrs, 

As a review, I conducted an autism services investigation the South Texas to learn what resources are available (available= close, affordable and bi-lingual) for children with autism. Here are a few more notes about what I learned as a result of the ASD Health Services Investigation in the Rio Grande Valley:

  • Although many helpful websites exist, only one was deemed helpful/appropriate for the target audience.  
  • Health communication research estimates that 41% of adult Hispanics read at below basic levels.  
  • Given that approximately 90% of the target population is Hispanic and most websites are written in detail, it was decided to limit these resources on our brochure. 
  • ….For those of you just following, the brochure is being developed to help parents of children with ASD help recognize symptoms, benefits to treatment, and available resources in the area. These brochures will be available in clinics, but will also be distributed and explained by promotoras
 Promotoras de Salud, Brownsville Texas.  Picture retrieved from the Mano-A-Mano website: http://mybchc.org/programs/mano-a-mano

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August132012

Health Services Investigation- Discussion I

Hey Tumblrs, 

As a review, I conducted an autism services investigation the South Texas to learn what resources are available (available= close, affordable and bi-lingual) for children with autism. Here are a few notes about what I learned as a result of the ASD Health Services Investigation in the Rio Grande Valley:

  • The amount of time it took to search for affordable ASD health facilities and services in South Texas was substantial.  The process spanned over a week and a half.  
  • It should be noted that most parents would not have the ability to spend a few hours each day trying to seek answers to their health questions.  Parents juggle many responsibilities, making this investigation and record keeping a serious additional burden. 
  • Even more demanding would be for Spanish-only speaking parents to try contacting different resources. Many of the people I spoke with were English-only speakers and did not have a Spanish-speaker available. 
  • Therefore, by conducting this investigation, I was able to obtain the valuable resources for families of children with ASD. These parents will now not have to go through this awful process and will have access to services in a much more timely fashion. 

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August122012

Hey Tumblrs!

Another method I used for my project was a phone-based investigation to locate and identify ASD related organizations in the RGV. The purpose of the investigation was to specifically locate low or no-cost local organizations that are dedicated to treating or advocating for the rights of children with ASD. The hope is to include the organizations’ information on the ASD informational brochure to help parents navigate helpful services.  I called an array of local organizations prompted by national and state government workers and websites. The process took about a week and a half….A week. And a half. Here was the process I took to obtain the information

  1. I began by researching the sources listed on the back of the brochure draft created last year.  Among the four websites provided, one of them was not offered in Spanish, two were not functional, and the last was very detailed and difficult to navigate.  After adjusting the URL of one non-working websites a few times, the intended web page finally appeared.  Among the two telephone numbers provided on the first brochure, one was a freight company.  The other was a privately owned rehabilitation center in South Texas.  Given that it does not provide sliding scale fees or cost sharing options, this phone number was eliminated from the list of resources. 
  2. The next action taken to identify local services was prompted by the CDC, Act Early informational card.  The Act Early campaign prompts parents with concerns to call a toll-free number to get connected with an early childhood intervention system.  Calling this number resulted in being redirected three times before being put in touch with the Region 1 Education Services Center in Edinberg, the Autism Council for Educational Support and Scientific Studies (ACES), and Easter Seals in McAllen. The Easter Seals in Harlingen was never prompted by the last agency.  To contact the Easter Seals in Harlingen, I searched for the toll-free number online.  The search was brief, but the number did not belong to Easter Seals, but to a real estate company.  The listed non-toll-free number was correct, however.   ————————————————————————————— ——————————————————This CDC number also resulted in many redirections to contact sources which provide information about available services for all children regardless of age.  The highest number of dialed and re-dialed phone numbers to reach an intended person was TEN. Unfortunately, this final phone number was disconnected. Other phone trails were similar.  Redirections and unanswered calls were abundant. In all, five potential local resources never answered the phone or returned the phone call. Furthermore, personnel at each agency did not necessarily have Spanish speakers present to assist with primarily Spanish speaking callers.
  3. Internet searches were conducted to find helpful services. Although few agencies were found online, most of those discovered were private entities that only offered services to those with health insurance and were therefore not applicable for the purpose of the brochure.  One applicable resource that was found online was TEAM.  TEAM is a grant project of Partners Resource Network, Inc. The goal of the organization is to empower parents of children and youth with disabilities in their roles as parents, decision makers, and advocates for their children. Although their office in Harlingen was closed this past June, a local coordinator remains in the area.  She serves the community by partnering with other organizations and delivering presentations to concerned parents and health professionals about the laws.  This service was incorporated on the brochure as it addresses knowledge of provided services, a need among Hispanic mothers.
  4. Finally, the city and county health departments were also contacted. The online directory had multiple phone numbers for the same health departments.  Some of these numbers were incorrect or busy.  The health departments that were successfully contacted either did not provide services related to ASD, or were not sure if they did.

Only well known, affordable services who were easily contacted and who spoke both Spanish and English were placed on the back of the brochure.  The final resources include the CDC Milestones website, Easter Seals in McAllen, Easter Seals in Harlingen, Region 1 Education Services Center, TEAM, and Autism Council for Educational Support and Scientific Studies. The Regional Academic Health Center, the host site of this research was also placed on this brochure to increase their reputation of being an autism research and resource center.


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12AM

Final Focus Group Regarding ASD Brochure Development

Hey Tumblrs!

            Like the other focus groups, the last focus group had 8 promotoras, was conducted in Spanish (I am getting good at this!) and was extremely helpful! Unlike the other focus groups, the questions were very different.  The main purpose of this focus group was to discuss and figure out how to inspire parents to seek treatment for their children with ASD and decide what information in the brochure should be reduced. Here is what we found out:

Treatment

  • All eight promotoras were enthusiastic about an example of a famous person with ASD being used in the brochure. They thought it would be a good way to demonstrate the benefits of seeking treatment.  
  • The promotoras also helped the research team identify a celebrity who has autism who is also well known by the community.  The group decided that the creator of Pokémon would be a good example to use. 

Which Information to Reduce

  •  All the promotoras agreed that addressing the causes of ASD in the brochure is important.    
  • Although the promotoras did not agree which topic (the celebrity treatment example or the causes of ASD) was more important for parents to know, the promotoras decided that causes and the ASD celebrity example need to be mentioned in the brochure.
  • They decided that more attention/word space should be given to the causes.  They came to this conclusion because the concept of causes was perceived to be very confusing and would therefore need more explanations.
  • In regards to the issue of placing blame on the mothers, the promotoras offered suggestions to use phrases such as “ASD is probably caused by a combination of genetics and environments, but doctors are not certain which”.  They said that words like “probably” or “possibly” would help reduce feelings of guilt among mothers (as you may remember, our previous focus groups showed that mothers may feel that they are genetically responsible- and therefore guilty/ashamed- for their children’s ASD)

In addition, the near- final draft of the brochure was well received.  The promotoras mentioned that the ASD brochure is a great way to increase knowledge and motivate parents to react to a problem.  Awesome! 


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July242012

Joe Scarborough, MSNBC: Retract your statements about autism and the Colorado shooting

On Monday morning, July 23, Joe Scarborough of MSNBC asserted that James Holmes is probably on the autism spectrum, and that autism would explain why he allegedly committed mass murder. These statements are ignorant and potentially damaging to people who already struggle against stigma and prejudice. There is absolutely no link between autism and criminal behavior; in fact, people on the autism spectrum are far more likely to be the victims of violence than the perpetrators. Study after study has proven these facts. While people on the autism spectrum struggle with social cues and a variety of neurological issues, autism does not predispose people toward the kinds of atrocities represented by the tragic shooting in CO. People on the spectrum are fully capable of the full range of feelings, including distress at the pain of other human beings….

Read more at http://www.change.org/scarborough 

July202012

Findings from First Two Focus Groups


Hello Everyone!

On July 19, we hosted a second promotora focus group. Like the first, the promotoras were presented with two versions of Spanish brochures about autism (signs, symptoms, treatment options, local services). One draft was created last year by an intern, and the other was a slightly modified version of the first draft.  The goal of the two focus groups was to pilot test findings from previous focus groups and literature and discover the strengths and weakness of both styles.

 Both focus groups were very similar.  Each had eight participants and both focus groups lasted about an hour and 20 minutes. They also had very similar findings. Here are the things that were mentioned in both groups:

Market towards both parents.

  • Although the literature has indicated that Hispanic women are the primary decision makers in regards to their children’s health, the promotoras unanimously agreed that the brochure should not be marketed only to women.  

Be more specific.

  • Upon asking if there was any unnecessary information present in the brochures, all of the promotoras from both focus groups responded that all of the information was important.  Even after extensive probing, the promotoras expressed that the different types of autism, treatments and resources were very important and should not be eliminated from the brochure.  In fact, most promotoras requested an increase in information in these areas.   Other areas needing further elaboration include the behaviors/symptoms of children with autism, why treatment is important, the causes of autism, and information about focus groups. 

Genetic information.

  • According to the first focus group, including information about the genetic causes of autism could cause mothers to obtain a sense of guilt. The promotoras said that this sense of guilt could cause the mother to be discouraged from sharing the brochure with her husband.  When this concept was presented to the second focus group, the promotoras nodded in agreement. This is EXTREMELY important and new information to take into consideration!

Word choice.

  • Both focus groups mentioned the importance eliminating all English words in the Spanish version brochures.  This includes medical terms that have no Spanish translation. The first focus group elaborated to say that parents will stop reading a brochure if they cannot understand or pronounce the words.  

Further education for promotoras.

  • All of the promotoras mentioned that they would like to participate in a train-the-trainer course so that they can become better equipped to educate the public.  

In addition to the common suggestions, all sixteen of the promotoras from the first two focus groups preferred the second brochure over the first due to the preferred question-based format, organization and color scheme. This is good news for me. I created the second version!

Last of all, the promotoras corrected numerous grammatical errors and offered suggestions for influential phrases, including “que hay apoyo” (there is help) and “usted es la primera persona y la única que puede ayudar su niño” (you are the primary and only person who can help your child).


In all, both were very helpful in understanding the importance of culture and language in increasing knowledge and inspiring behavior change.


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