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Research that Benefits Children and Families – Uplifting Stories

23 Mar

As we have been learning this week through our learning resources and assignments, there are ethical considerations to take into account while doing research. This code of ethics may not necessarily be a long list of personal beliefs or values, but rather a precise plan how a particular study will be planned, conducted, and reported. Between you and me, I struggled a lot with the learning resources this week. All of the specific codes and regulation numbers confused me, and I had to re-read a few different articles several times. The bottom line that I came to after pondering all of the resources is that research must be carefully thought through, designed, and conducted with it comes to children. The four areas below typically are approved when research involves children:

  • The risks are nothing more than minimal (minimal equates to the typical discomforts and harms experiences in everyday life or in testings).
  • More than minimal risks may occur, but the research directly benefits the participant undergoing the study.
  • More than minimal harm may occur, however the results can lead to greater understandings and insights about the condition or disorder that the participant has (ie: learning more about effective strategies when instructing children with autism).
  • Research that may cause more than minimal risks, but the outcomes provide opportunities to learn more the general health and well-being of children and their development *special note, research studies that use this option must be approved by the HHS (Health and Human Services) secretary* (U.S. Department of Health and Human Services: Office for Human Research Protections (OHRP). (n.d.).

So, when research abides by one of the above ethical considerations, the results and outcomes can lead to a positive impact on the lives of children and families. File (2008) agrees by stating, “Applied research projects contribute information to our field that benefits young children and families we serve and all of us who work conscientiously to improve the quality of early care and education” (p. 87).

After seeing how research can have a positive influence on children and families, I asked myself how have I personally (and professionally) witnessed positive examples? Two instances quickly came to my mind …

personalreflection

Research personally affected my life and saved my son’s. However, let me back up and provide a bit of a background for you. I was pregnant with my first born child in 2009 (and quite frankly, he is still my only child). I went into labor with him nearly 42 weeks gestational. Everything at the prenatal appointments looked excellent, and even during active labor, he was doing well. It was only the last hour of delivery that things took a turn for the worse.

While I can’t remember the full specifics of the half-hour leading up to his delivery, I do remember that he was pulled out of my belly (emergency C-Section) at 6:32 pm on a Saturday evening. I thought it was odd that I didn’t hear him cry, and I learned a few hours later why this was. You see, he was born blue, with no heartbeat or a breath of life. If you know anything about APGAR scores, his were 0 across the board. After 2-3 minutes of CPR, he was resuscitated and rushed to the NICU. However, the brain damage from the loss of oxygen was imminent.

At the hospital where I delivered, they had begun a new experimental program for babies born with potential brain damage. It was called a “cooling mat.” Babies were placed on this cooling mat, which significantly reduces the body temperature for 3 days. Fortunately, my son qualified for this experimental program and was placed on the cooling mat for the first 3 days of his life. He was sedated and on a ventilator, but it was all in hopes that the brain damage wouldn’t continue. Essentially, it was an experiment – a part of research. A trial and error. Nobody could tell me if he would be significantly brain damaged or even wake up. We just had to wait …

Three days later, my son was removed from the cooling mat and started the process of warming up. He began to

Ephraim on the cooling mat

Ephraim on the cooling mat

wake up and slowly make progress. The brain damage from his birth was already present on the MRI, but thankfully it was not any worse due to the cooling mat procedure. He spent 24 days in the NICU, learning how to doing multiple feats that many babies are typically born with (like sucking), but he is a trooper and managed to pull through it all.

Due to the new cooling mat program, he became a participant in a longitudinal study that would follow him until he is five years old. Every six months or so, he would go for developmental testing to determine where he was in comparison to those his age. Even though this program has dissolved in my area, there is still a research study going on about the long term benefits of children who were on a cooling mat immediately after birth.

Fast forward nearly three and a half years, my son (Ephraim) is one of the happiest little boys I have ever known (and I’m not saying this just because he’s my son). He had a lot of challenges and struggles, but this doesn’t stop him. He can’t sit up yet, but he scoots all around the floor in an army crawl. Eating is a huge issue, but he has overcome the possibility of a feeding tube numerous times. While he is on a pureed diet, he is able to eat all of his meals orally. With the addition of multiple therapies each week, he is slowly making process in all developmental areas. He is a miracle, for sure. My miracle, indeed.

The research study of the cooling mat saved my son. Or at least I like to think of it like that. Had my son not had

Ephraim today in his gait trainer (a device designed to help him walk).

Ephraim today in his gait trainer (a device designed to help him walk).

the chance to be on the cooling mat, his brain damage could have been significantly worse. Sure, he faced more than minimal discomfort by being sedated and chilled for nearly the first three days of his life. I was aware of the risks that surrounded this experiment, but the benefits for my son far outweighed these risks. The discomfort was worth it, in my eyes, for a chance that the brain damage wouldn’t get worse. In addition, this research study also affected my life as a mother. The cooling mat had just come to this hospital a few weeks prior to my son’s birth. Otherwise, my son would have had to be transferred to a children’s hospital nearly two hours away. I was thankful that I was able to stay close by my son’s side, rather than worry about his care and prognosis in a different hospital. This research study, while it was brief and disseminated before my son turned 5, was a lifesaver for my son.

professionalmoment

 

 

 

Even though I did experience research first hand, I also took a step back and looked for positive examples I have come across in my professional career. While I have read numerous research articles, one in particular revealed positive examples of how research affects children and families.

A research study was conducted on a group of migrant children and their families during kindergarten. Parents were offered an opportunity to participate in a voluntary program that taught them how to be involved and engaged in their child’s academic activities. Parents could opt to attend just one session or all of them if desired. It was the hopes of the study that if parent quality and involvement increased, academic achievement, as well as social and behavioral development, would rise.

Once the children completed kindergarten, they were then re-evaluated at the end of first grade to see if there was an increase in academic knowledge. It was discovered that the children in the experimental group had greater language scores when compared to those children in the control group. Already this experimental study had begun to see the impact of increasing parent involvement and quality.

Six years later, this group of children was re-evaluated once again. (This is actually what the article mainly discussed – the results from the initial study six years later.) The state reading assessments were examined for both groups. Although not a surprise, it was found that the experimental group, children whose parents attended the parent program, had significantly higher scores in comparison to those in the control group (children whose parents did not participate in the parent program).

This research study produces positive effects for the experimental group, as they continue to reap the benefits from their parents attending the parent program. This journal article is an excellent example of how research positively contributes to the optimal development and learning of children. If you want to read this article in depth, the citation is as follows:

Clair, L. S., Jackson, B., & Zweiback, R. (2012). Six Years Later: Effect of Family Involvement Training on the     Language Skills of Children from Migrant Families. School Community Journal, 22(1)

questionstoponderSince we are in this journey together, I will conclude my blog post with some questions for you to ponder (and even perhaps respond to):

  • How has the research simulation project been going for you? Have you experienced any rough spots, like I did this week with reading about ethics?
  • If you have identified any positive examples within research, has this encouraged you to continue to further your research exploration?
  • Have you identified any positive research examples that correlate to your specific topic?
  • What have you found helpful to you as you complete your research simulation?

References:

Clair, L. S., Jackson, B., & Zweiback, R. (2012). Six Years Later: Effect of Family Involvement Training on the Language Skills of Children from Migrant Families. School Community Journal22(1), 9-19.

File, N. (2008). When researchers come to your program. YC: Young Children63(5), 80–87.

Mac Naughton, G. & Rolfe, S.A. (2010). Doing early childhood research: International perspectives on theory and practice (2nd ed.). New York, NY: McGraw-Hill.

U.S. Department of Health and Human Services: Office for Human Research Protections (OHRP). (n.d.[a]). Research with children—FAQs. HHS.gov. Retrieved from http://answers.hhs.gov/ohrp/categories/1570

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4 Comments

Posted by on March 23, 2013 in Week 3

 

4 responses to “Research that Benefits Children and Families – Uplifting Stories

  1. Althea Richardson-Walter

    March 24, 2013 at 3:43 am

    Really enjoyed your post and I am happy to see reserach brouht happiness in your life. I do hope that you will encourgae others to be thorough research as you are and they can also reap benefits.

     
  2. Lauren Risher

    March 24, 2013 at 4:54 pm

    I believe this is another example of how research for children and their families can be a strong tool. I believe with your first hand experience with research and the outcomes, and risks that are taken with it will help us all to understand in a different way.

    Thank you for sharing

    Lauren

     
  3. Christina Person

    March 24, 2013 at 7:27 pm

    The research on children and the experimental program where parents attended parenting groups, was a substantial finding of parent involvement. This is a great reference to use when addressing parents about their child’s education.

     
  4. Christina Person

    March 24, 2013 at 7:27 pm

    The research on children and the experimental program where parents attended parenting groups, was a substantial finding of parent involvement. This is a great reference to use when addressing parents about their child’s education. Thank you for your personal story, research and points to ponder.

     

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