Alex's Lemonade Stand Foundation for Childhood Cancer

Foundation to distribute more than $100,000 in grants to improve quality of care and life for childhood cancer patients and their families

Wynnewood, PA (December 2011) – Alex’s Lemonade Stand Foundation (ALSF), a leading driver of research for pediatric cancer, has announced the recipients of the 2011 Nurse Researcher Grants designed to improve the quality of care and life for young cancer patients and their families. The grants, which will extend to nurse researchers in three states across the country, will total more than $100,000.

The newly funded grants will support the projects of Pam Hinds, RN/PhD of the Children’s Research Institute in Washington, D.C. to examine preliminary content validation steps for pediatric oncology patient self-report; Celeste Phillips-Salimi, PhD of the University of Kentucky Research Foundation in Lexington, KY to research the development of connectedness with healthcare providers scale for adolescents and young adults with cancer; and Gloanna Peek, RN/MSN of the University of Arizona in Tucson, AZ for her work to facilitate coping interviews in parents of children newly diagnosed with cancer.

With a mission of finding better treatments and cures for all kids with cancer, ALSF added the Nurse Researcher Grant Program to its already innovative pediatric research program in 2007. Believing that the lives of children battling cancer could be improved through the work of nurses on the front lines, ALSF became the first national childhood cancer charity to fund nursing research. In addition to funding the research of nurses, the Foundation also holds a Nurse Researcher Workshop for novice nurses seeking funding for their childhood cancer research.

“We feel that finding the causes and cures for kids with cancer is vitally important, but also recognize the importance of their quality of care and life as they face the disease,” says Liz Scott, Alex’s mom. “Through our own experience, we know that nurses have a unique view into the lives and struggles of patients and their families as they undergo treatment and the effects they will face after. These grants allow us to tap into the nurses’ wealth of knowledge to improve these young lives as we take strides toward finding cures.”

The funded grants will fall into one of three Nurse Researcher categories:

• Independent Nurse Researcher Grants - awards designed for an experienced nurse researcher. These applications are expected to be from experienced researchers to investigate topics and issues related to the quality of nursing care and the quality of life for children with cancer.
• Intermediate Nurse Researcher Grants - awards designed to financially support efforts of more experienced nurse researchers to accomplish research projects with the support and commitment of the institution where they practice.
• Mentored Nurse Researcher Grants - awards designed to support the efforts of beginning nurse researchers to accomplish small research projects with both mentor and institutional support.

Alex’s Lemonade Stand Foundation 2011 Nursing Grant Recipients

Independent Nurse Researcher:

Children’s Research Institute, Washington, D.C. ($63,644.32 over two years)

Preliminary Content Validation Steps for the Pediatric Oncology Patient Self-Report CTCAE

Pam Hinds, RN/PhD

The National Cancer Institute's Common Terminology Criteria for Adverse Events (CTCAE, version 4) is the standard lexicon for grading adverse events (AEs) experienced by pediatric cancer patients in oncology trials. The current standard in clinical trials is that all AEs are graded and reported by clinicians. However, in recent years, an increasing interest has emerged from parents, clinicians, researchers and federal organizations to seek, when possible, the child's perspective on treatment experiences including adverse events. Pediatric oncology patients experience multiple adverse events in treatment. Inviting the ill child's reports on treatment-related AEs could help clinicians to better anticipate and manage these events and positively influence the quality of life of these patients. Inviting the child's reports would contribute to an improved clinician understanding of the impact of treatment on these young patients and contribute to more reasoned judgments about the relative benefits and burdens of the study treatments. We seek to complete a two-part content validation study with pediatric clinicians and researchers directly involved with pediatric oncology patients regarding items on the CTCAE for which the child or their family caregiver proxy could reasonably be expected to provide descriptive responses. Information gained from this two-part content validity study will serve as formative research to design a pediatric version of the CTCAE for children and their family caregiver proxies that would accurately and sensitively capture the child's experiences with specific symptomatic AEs.

“The research support from Alex’s Lemonade Stand Foundation positions our team to transform a well established form into a pediatric version that will allow ill children and adolescents to directly report how the treatment affects their bodies and their lives,” says Pamela Hinds, RN, PhD.

Intermediate Nurse Researcher:

University of Kentucky Research Foundation, Lexington, KY ($40,000 over two years)

Development of a Connectedness with Healthcare Providers Scale for Adolescents and Young Adults with Cancer

Celeste Phillips-Salimi, PhD

Across the cancer experience, from diagnosis through survivorship, adolescents and young adults (AYA) with cancer are struggling and their needs are not being adequately addressed. AYA survivorship is complicated by physical and psychosocial difficulties and higher participation in risk-taking behaviors. These complications increase AYA risk for secondary cancers and other chronic illnesses. To help minimize long-term health problems and engage in healthy lifestyle behaviors, AYA must establish and maintain a good relationship with their healthcare providers (i.e. their doctors and nurses) for long-term follow-up. The willingness of AYA to engage in long-term follow-up is influenced by their experiences of connectedness to healthcare providers across the cancer continuum (from diagnosis to survivorship). In an effort to better understand how AYA connectedness with their healthcare providers occurs and the influence connectedness has on AYA survivorship outcomes, an instrument to measure AYA connectedness with healthcare providers needs to be developed. The purposes of this study are to: (1) develop a patient-reported measure of connectedness with healthcare providers for AYA and (2) evaluate the psychometric properties of the instrument. Findings from this study will contribute to an ongoing program of research focusing on the development of interventions to establish and maintain AYA connectedness with healthcare providers that will ultimately influence the survivorship outcomes of AYA.

“I am extremely grateful to receive the Alex’s Lemoande Stand Foundation Nurse Researcher Award,” says Celeste Phillips-Salimi, PhD. “This award supports a research project that will be instrumental in improving the care of adolescents and young adults with cancer and the issues they encounter during survivorship.”

Mentored Nurse Researcher:

University of Arizona, Tucson, AZ ($20,000 over two years)

COPE in parents of children diagnosed with cancer

Gloanna Peek, RN/MSN

The research study is designed to facilitate coping interventions in parents of children newly diagnosed with cancer. This coping intervention is designed to (a) increase the parent's ability to cope with the diagnosis of their child's cancer, (b) decrease anxiety, depressive symptoms, and stress in parents of children newly diagnosed with cancer, and (c) enhance parental beliefs in their abilities after their child's cancer diagnosis (i.e. understanding changes in their child's behavior and how they can best help their child after diagnosis), and (d) improve the children's internalizing behaviors which are reflected in the child's internal psychological environment (i.e. anxiety and fearfulness) and externalizing behaviors which are reflected by the child reacting negatively to the environment (i.e. acting out behaviors including temper tantrums, screaming, and uncooperative behaviors).

“I am honored to have received my first research grant from Alex’s Lemonade Stand Foundation,” says Gloanna Peek, RN/MSN. “The study will allow for the examination of theory-based educational intervention aimed at decreasing stress, anxiety and depressive symptoms in parents of children newly diagnosed with cancer.”