Alex’s Lemonade Stand Foundation Announces Psychosocial Grants, quality of care and life relate to emotional and social health
Behavioral Health Professionals at institutions in Maryland and Massachusetts awarded grants to explain and improve psychosocial outcomes of those affected by childhood cancer
Alex’s Lemonade Stand Foundation (ALSF), a nonprofit dedicated to finding cures for all kids with cancer, has announced the awarding of new Psychosocial Grants to address the behavioral health outcomes for children diagnosed with cancer and their families. Recognizing the importance of investing in research that enables better quality of care and life for children battling cancer, their siblings and families, the Foundation has selected the projects of PhDs at Boston University and the Children’s National Health System.
The 2015 recipients of the Psychosocial Grants are Kristin Long, PhD of Boston University and Kristina Hardy, PhD of Children’s National Health System in Rockville, MD. Long will receive a 2-year Launch Grant ($100,000) designed for early career researchers within seven years of receiving their terminal degree while Hardy will receive a 3-year Family Impact Grant ($296,485) designed for established investigators.
Since inception, Alex’s Lemonade Stand Foundation has been dedicated to its mission of finding better treatments and ultimately cures for all kids with cancer. Recognizing early on the role that behavioral and psychosocial clinician researchers play in the quality of life and care for childhood cancer patients and their families, the Foundation made a commitment to support the ideas and research of nurses, introducing the first Nurse Researcher Grants in 2007. This year will mark the first quality of care and life grants being given to behavioral health professionals specifically.
Kristin Long, PhD has won a Launch Grant to look into how the challenges that cancer diagnosis and treatment place upon the family put siblings at risk for ongoing, elevated distress and school problems. Long’s research will examine how siblings who experience difficulties adjusting to cancer are less likely to contribute to the family’s efforts to manage the practical and emotional aspects of cancer. Although the Psychosocial Assessment Tool (PAT) in Long’s study has been used worldwide to identify families who are likely to experience ongoing and/or elevated distress, this measure has not been evaluated in siblings. To fill this gap, the study aims to develop a sibling-specific module of the PAT and test this PAT Sibling Module in a sample of families of children with cancer.
Kristina Hardy, PhD will aim to identify the first signs of changes in thinking and learning in children being treated for high-risk leukemia using a short, computerized testing program. The test will begin on children starting shortly after leukemia is diagnosed, and several times during the course of their treatment, in order to identify problems as soon as they begin. The objective is to determine whether the computerized testing done early in treatment helps to better predict who will go on to have difficulties, and in turn help to slow down or eliminate these problems.
“Since we began funding research for childhood cancer over 10 years ago, we have seen progress toward better treatments and ultimately cures,” said Jay Scott, Co-Executive Director of Alex’s Lemonade Stand Foundation. “However, in that time frame, we have also become intensely aware of the effects the fight against childhood cancer can have emotionally and behaviorally on patients and their families. These news grants aim to address the psychosocial aspects of childhood cancer treatment, helping to improve the current and future quality of care and life for these children and their families.”
Alex’s Lemonade Stand Foundation 2015 Psychosocial Grants
Psychosocial Launch Grant
Kristin Long, PhD, Boston University, Boston, MA
Development of a Screening Module to Assess Sibling-Related Psychosocial Risk in Families of Children with Cancer
Stressors associated with a child’s cancer diagnosis impact the whole family, including siblings. Many siblings of children with cancer adjust well over time. However, the challenges that cancer diagnosis and treatment place upon the family put siblings at risk for ongoing, elevated distress and school problems. Siblings who experience difficulties adjusting to cancer are less likely to contribute to the family’s efforts to manage the practical and emotional aspects of cancer. These siblings are likely to benefit from psychosocial intervention. Yet, siblings’ psychosocial needs are seldom identified or addressed in healthcare settings.
One barrier to effectively meeting siblings’ needs is the lack of an established assessment tool that can identify siblings who experience heightened distress. Although the Psychosocial Assessment Tool (PAT) has been used worldwide to identify families who are likely to experience ongoing and/or elevated distress, this measure has not been evaluated in siblings. To fill this gap, the proposed study aims to (1) develop a sibling-specific module of the PAT and (2) test this PAT Sibling Module in a sample of English- and Spanish-speaking families of children with cancer. Specifically, we will examine the extent to which PAT Sibling Module scores identify families and/or siblings who have difficulties adjusting to cancer. The proposed study is expected to have a direct impact on family-centered care by ensuring that all family members (including siblings) receive the optimal level of psychosocial care. In turn, this will enable siblings to make meaningful contributions to cancer management activities within the family.
Psychosocial Family Impact Grant
Kristina Hardy, PhD, Children’s National Health System, Rockville, MD
Neurocognitive Assessments within COG: An Intensive, Integrated Model for Successfully Evaluating Children with High-Risk ALL
Children with “high-risk” leukemia receive intense treatments that, while life-saving, can also cause them to develop problems with the way they learn and think. This does not happen to all children receiving these treatments, but we cannot yet predict who will develop problems. One reason that we lack this information is that it is often difficult to test changes in the way children learn while they are receiving medical treatment. Children may feel too sick to complete testing, psychologists are not always available to do the evaluations, and insurance companies may not cover the testing that is needed.
In this project, we aim to identify the first signs of changes in thinking and learning using a short, computerized testing program. The tests can be given in clinic by nurses or other staff, and cost very little money. We will test children starting shortly after leukemia is diagnosed, and several times during the course of their treatment, so that we can identify problems as soon as they start to occur. Children in our study will also receive 3 one-hour evaluations with widely-used tests of learning and memory, given by a psychologist, over a 5-year period. We will determine whether results from the computerized tests are able to predict performance on the more traditional tests given by the psychologists. If computerized testing done early in treatment helps us to better predict who will go on to have difficulties, we can help to slow down or eliminate these problems.
About Childhood Cancer
Childhood cancer is a general term used to describe cancer in children occurring regularly, randomly and sparing no ethnic group, socioeconomic class, or geographic region. Childhood cancer extends to over a dozen types of cancers and a countless amount of subtypes. Just a few of these cancer types include: Ewing’s sarcoma, glioma, leukemia, lymphoma, medulloblastoma, neuroblastoma, osteosarcoma, retinoblastoma, rhabdomyosarcoma and Wilm’s tumor. In the United States, childhood cancer is the leading cause of death by disease in children under the age of 15. Every day, approximately 250 kids around the world die from cancer, accounting for 91,250 losing their lives to the disease every year.
About Alex’s Lemonade Stand Foundation
Alex’s Lemonade Stand Foundation (ALSF) emerged from the front yard lemonade stand of cancer patient Alexandra “Alex” Scott (1996-2004). In 2000, 4-year-old Alex announced that she wanted to hold a lemonade stand to raise money to help find a cure for all children with cancer. Since Alex held that first stand, the Foundation bearing her name has evolved into a national fundraising movement, complete with thousands of supporters across the country carrying on her legacy of hope. To date, Alex’s Lemonade Stand Foundation, a registered 501(c)3 charity, has raised more than $95 million toward fulfilling Alex’s dream of finding a cure, funding over 475 pediatric cancer research projects nationally. For more information on Alex’s Lemonade Stand Foundation, visit AlexsLemonade.org.
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