Research Proposal on "Coping With Sickle Cell Disease Learning Compassion"

Research Proposal 7 pages (1871 words) Sources: 8

[EXCERPT] . . . .

Coping With Sickle Cell Disease

Learning Compassion

The average life expectancy in America... now in the mid-40 years of age range.... One in 12 African-Americans in this country has sickle cell trait.... Lung tissue damage, pain episodes and stroke.... damage to most organs including the spleen, kidneys and liver.... Can people with sickle cell disease live a productive life? Yes. but..." (Sickle cell FAQ's, 2007)

The above excerpts, as well as the following, from FAQs, posted on the Web reflect some of the issues/concerns contributing to this researcher's contention that this proposed study reflects a current concern worthy of exploration.

As children note their parents' pain coping styles, the way that parents handle their pain likely influences the way the children learn to manage their own pain. Although a few studies have focused on the fact that children's coping behaviors with other pain problems relate to parental another significant individual's behaviors (i.e. encouragement), a dearth of studies exist regarding parents of children with Sickle Cell Disease (SCD). (Gil, Williams, Thompson, Jr., and. Kinney, 1991, p. 643)

The need exists, this researcher proposes to explore and seek answers to questions, created to help guide and focus research to, in time, confirm or disprove this study's hypothesis:

When parents of adolescents, afflicted with Sickle Cell Disease, make a point to educate themselves and their children, and promote positive counters to related to pain/stressors, then the adolescents with SCD will, in turn, counter the disease in positive ways, and the more likely to better cope with their personal pain and stressors.

Along with seeking to secure answers for the proposed studies research questions, this researcher expects to compare and contrast complementary and contradictory information accessed during their a review of relevant literature, as well as, during the ensuing methodology, analysis, and conclusion. Several specific research questions created to help keep the proposed study on task include:

What primary concerns/stressors challenge adolescents with Sickle Cell Disease have to contend with?

How do parents' attitudes toward diseases and pain impact their adolescents?

What can parents do to help their adolescents, who have Sickle Cell Disease, better cope and/or contend with Sickle Cell Disease in positive ways?

Questions With/Without Answers

The following excerpts from the FAQs page on EverythingSickleCell.com (2007) reflect only a small part of available information readily secured by anyone wanting to learn more about this disease.

Frequently Asked Questions

1) What is sickle cell disease?

Sickle cell disease is an inherited disorder that affects red blood cells.... red blood cells that become hard and pointed instead of soft and round.... cause anemia, pain and many other problems.

2) What is sickle cell trait?

One in 12 African-Americans in this country has sickle cell trait. Carriers of the sickle cell gene generally are as healthy as noncarriers....

3) if sickle cell trait is not an illness, why are people tested?

Babies are tested to see if they have sickle cell disease. Teens and adults are tested mainly to see if they can have a baby with the disease.

4) What are the chances that parents with sickle cell trait will pass it on to their children?

.. A 50% chance [exists] that a child born to parents who both carry a sickle cell gene will have the trait. There is a 25% chance that the child will have sickle cell disease....

5) What medical problems are caused by sickle cell disease?

Lung tissue damage, pain episodes and stroke.... damage to most organs including the spleen, kidneys and liver.

6) How many people have sickle cell disease?

Sickle cell disease is a global health problem. In the United States...over 70,000 people have sickle cell disease.... 1000 babies...

7) How long does a person with sickle cell disease live?

The average life expectancy in America... now in the mid-40 years of age range.

8) Are people of African descent the only group affected?

No. It is also present in Portuguese, Spanish, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots.... also appears in Middle Eastern countries and Asia.

9) Is there a cure?

A small number of children... cured through a blood stem cell transplant. The stem cells (immature cells that develop into blood cells) come from bone marrow, or less frequently from umbilical cord blood, usually donated by siblings who are a good genetic match....

Currently, researchers are studying a number of new drug treatments....

10) What are some promising treatment developments?

The use of hydroxyurea... promising results on some adult sickle cell patients.... reduces the frequency...

11) Can people with sickle cell disease live a productive life?

Yes. but...

12) Can a person catch sickle cell disease from someone who has it?

No. The disease is inherited... not contagious....

13) Do we all have the same chance of inheriting sickle cell disease?

No. In the United States, most cases occur among African-Americans and Hispanic-Americans.... also affects people of Arabian, Greek,...

14) Can a woman with sickle cell disease have a safe pregnancy?

Yes. However, women with sickle cell disease are at increased risk of...

15) Is there a test for sickle cell disease or trait?

Yes. A person can...

16) Where is sickle cell testing and treatment available?

Couples who are planning to have a baby can get carrier testing at medical centers and sickle cell treatment facilities.... (Sickle cell FAQ's, 2007)

This researcher expects benefits of this proposed study:

Increase understanding of the problem(s) adolescents with a SCD routinely experience.

Present pertinent, potential positive practices that parents, along with their adolescent afflicted with as SCD, may implement to help decrease pain/stress related to the disease.

Offer credible counters for parents of youth with CSD to utilize against challenges inherent in the disease.

Abbreviations & Definitions

SCD: Sickle Cell Disease

II. Yes. but... Literature Review

In the journal article, "Sickle Cell Disease in Children and Adolescents: The Relation of Child and Parent Pain Coping Strategies to Adjustment, Karen M. Gil, David a. Williams, Robert J. Thompson, Jr., and Thomas R. Kinney (199, p. 643) "Examined pain coping strategies in 72 children and adolescents with sickle cell disease and their parents using the Coping Strategies Questionnaire." These researchers found:

Pain coping strategies could be reliably assessed.

Children high on Negative Thinking and Passive Adherence were less active, required more health care services, and were more psychologically distressed during painful episodes.

Children high on Coping Attempts were more active and required less frequent health care services.

Parents high on Coping Attempts and low on Passive Adherence had children who were more active. (Gil, Williams, Thompson, Jr., and. Kinney, 1991, p. 643)

Approximately one of every 400 African-American newborn babies will experience sickle cell disease (SCD), an inherited disorder characterized by chronic hemolytic anemia and vaso-occlusion, which results in ischemic tissue injury. The reportedly most frequent complication of SCD, albeit, is the painful event, generally with the sudden onset of pain located in the soft tissues, abdomen, and bones; secondary to tissue ischemia. (Ibid)

Gil, Williams, Thompson, Jr., and Kinney (1991) report that significant stressors related to SCD which children with the disease may encounter include, but are not limited to:

retarded growth, delayed puberty, chronic fatigue, and medical complications (e.g., sepsis, stroke)." (Gil, Williams, Thompson, Jr., and. Kinney, 1991, p. 644)

In the journal article, "ADOLESCENTS WITH SICKLE CELL DISEASE: Determinants of Support Group Attendance and Satisfaction," Joseph Telfair and Marilyn M. Gardner (2000, p. 43) relate descriptive findings from their study regarding how adolescents with SCD deal with "psychological and social issues common to sickle cell disease (SCD)." These authors found that an individual's desire to increase his/her knowledge regarding how to solve problems constitutes the best predictor/indicator of his/her continuing to attend a support group. In addition, this study found that "greater levels of help in dealing with friends and with family problems," best predicted group satisfaction. When groups operate as tools for participants to learn affective skills and strategies to better deal with their f life experiences, those who attend consider the group to be a success. (Telfair & Gardner, 2000, p. 43)

Familial Cohesion Counts

In this study, "Family Influences on Coping Processes in Children and Adolescents with Sickle Cell Disease," Wendy Kliewer and Hellen Lewis (199, p. 491) evaluated parental and familial variables' contributions to coping processes utilized by 39 children and adolescents afflicted with SCD. Ultimately, these authors found: "Children's active coping was associated with a cohesive family environment, and avoidance coping was predicted by less parental use of restructuring coping, and greater parental use of active coping strategies." Evidence from this study supports the proposition that parents' personal coaching, influence, as well as the home environment, do contribute a definite impact to the processes children with SCD cope.

Kliewer and Lewis (199, p. 496) purport that parental impact may be negative or positive. They state it is clear that youth with SCD do experience a greater risk not only for behavior problems, but also for "neurocognitive (sic) and academic deficits." When family function of youth with chronic illnesses,… READ MORE

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