This paper proposes a research study examining how parents of adolescents with Sickle Cell Disease (SCD) influence their children's ability to cope with pain and disease-related stressors. Beginning with an overview of SCD's medical and demographic scope, the paper presents a central hypothesis: when parents educate themselves and model positive coping behaviors, adolescents with SCD are more likely to manage their condition effectively. A review of relevant literature explores the relationship between parental coping strategies and child outcomes, the role of family cohesion, and the value of support groups. The paper concludes by outlining a proposed methodology focused on surveying both parents and adolescents about their coping experiences and needs.
The average life expectancy for people with sickle cell disease in America is now in the mid-40s. One in 12 African-Americans in this country carries the sickle cell trait. The disease causes lung tissue damage, pain episodes, stroke, and damage to most organs including the spleen, kidneys, and liver. Can people with sickle cell disease live a productive life? Yes — but with significant challenges. (Sickle cell FAQs, 2007)
These realities contribute to this researcher's contention that the following proposed study addresses a current concern worthy of exploration. As children observe their parents' pain coping styles, the way parents handle pain likely influences the way children learn to manage their own. Although a few studies have examined how children's coping behaviors with other pain problems relate to parental or significant others' behaviors (such as encouragement), a dearth of studies exists regarding parents of children with Sickle Cell Disease (SCD). (Gil, Williams, Thompson, Jr., and Kinney, 1991, p. 643)
This researcher proposes to explore and seek answers to questions designed to help guide and focus research toward confirming or disproving the following hypothesis:
When parents of adolescents afflicted with Sickle Cell Disease make a point to educate themselves and their children and promote positive responses to pain and stressors, the adolescents with SCD will, in turn, counter the disease in positive ways and will be more likely to cope effectively with their personal pain and stressors.
Along with seeking answers to the study's research questions, this researcher expects to compare and contrast complementary and contradictory information accessed during a review of relevant literature, as well as during the ensuing methodology, analysis, and conclusion. Several specific research questions have been created to keep the proposed study on task:
1. What primary concerns and stressors must adolescents with Sickle Cell Disease contend with?
2. How do parents' attitudes toward disease and pain impact their adolescents?
3. What can parents do to help their adolescents with Sickle Cell Disease cope with the condition in positive ways?
This researcher expects the following benefits from this proposed study: increasing understanding of the problems adolescents with SCD routinely experience; presenting pertinent, potential positive practices that parents and their adolescents with SCD may implement to help decrease pain and stress related to the disease; and offering credible strategies for parents of youth with SCD to utilize against the challenges inherent in the condition.
The following excerpts from the FAQs page on EverythingSickleCell.com (2007) reflect a portion of the information readily available to anyone seeking to learn more about this disease.
1. What is sickle cell disease?
Sickle cell disease is an inherited disorder that affects red blood cells. It causes red blood cells to become hard and pointed instead of soft and round, leading to 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 are generally as healthy as non-carriers.
3. If sickle cell trait is not an illness, why are people tested?
Babies are tested to determine whether they have sickle cell disease. Teens and adults are tested mainly to determine whether 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?
There is a 50% chance 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?
Sickle cell disease causes lung tissue damage, pain episodes, and stroke, as well as 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, and approximately 1,000 babies are born with it each year.
7. How long does a person with sickle cell disease live?
The average life expectancy in America is now in the mid-40s.
8. Are people of African descent the only group affected?
No. Sickle cell disease also appears in Portuguese, Spanish, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks, and Cypriots, as well as in Middle Eastern countries and Asia.
9. Is there a cure?
A small number of children have been 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 has shown promising results in some adult sickle cell patients, reducing the frequency of painful episodes.
11. Can people with sickle cell disease live a productive life?
Yes — but with ongoing challenges and careful management.
12. Can a person catch sickle cell disease from someone who has it?
No. The disease is inherited and is 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, though the disease also affects people of Arabian, Greek, and other backgrounds.
14. Can a woman with sickle cell disease have a safe pregnancy?
Yes. However, women with sickle cell disease are at increased risk for certain pregnancy-related complications.
15. Is there a test for sickle cell disease or trait?
Yes. A simple blood test can determine whether a person has the disease or carries the trait.
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 FAQs, 2007)
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 (1991, 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 the following:
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 in every 400 African-American newborn babies will experience sickle cell disease, an inherited disorder characterized by chronic hemolytic anemia and vaso-occlusion, which results in ischemic tissue injury. The most frequent complication of SCD is the painful episode, typically characterized by the sudden onset of pain 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 the disease. These authors found that an individual's desire to increase his or her knowledge about how to solve problems constitutes the best predictor of continued support group attendance. In addition, this study found that "greater levels of help in dealing with friends and with family problems" best predicted group satisfaction. When support groups function as tools for participants to learn affective skills and strategies for managing their life experiences, those who attend consider the group to be a success. (Telfair & Gardner, 2000, p. 43)
"Family environment's role in SCD coping processes"
"Survey design and adolescent needs areas outlined"
"Cited academic and web sources listed"
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