Kristin Stegenga

Randomized clinical trial of therapeutic music video intervention for resilience outcomes in adolescents/young adults undergoing hematopoietic stem cell transplant: A report from the Children's Oncology Group

To reduce the risk of adjustment problems associated with hematopoietic stem cell transplant (HSCT) for adolescents/young adults (AYAs), we examined efficacy of a therapeutic music video (TMV) intervention delivered during the acute phase of HSCT to: 1) increase protective factors of spiritual perspective, social integration, family environment, courageous coping, and hope‐derived meaning; 2) decrease risk factors of illness‐related distress and defensive coping; and 3) increase outcomes of self‐transcendence and resilience.

Symptoms and symptom clusters in adolescents receiving cancer treatment: A review of the literature

OBJECTIVES The purpose of this literature review is to document what is known about the most common symptoms and symptom clusters in adolescents receiving cancer treatment in order to advance the science of symptom management for this unique group of patients. DESIGN This review identified primary research reports focused on cancer-related symptoms in adolescents using methodology that included objective measurement of the symptom(s) or self-report from the adolescents. DATA SOURCES We searched the literature using Medline, PubMed, and CINAHL from 2000 to 2011. REVIEW METHODS The first step of the review was to synthesize evidence to identify the most common symptoms experienced by adolescents during the cancer treatment period. The second step located findings from additional research about these specific symptoms individually or as clusters. RESULTS From 12 reports, we identified 6 common symptoms in adolescents during the treatment period: fatigue, sleep-wake disturbances, nausea/eating problems, pain, mood disturbances, and appearance changes. Findings from 51 studies provided a foundation of evidence about symptom trajectories, contributing factors, and associations between symptoms. CONCLUSIONS This review of the literature identified a relatively small body of research related to symptoms in adolescents during the cancer treatment period. Most of the studies were of low quality evidence and described individual symptoms rather than associations or clusters. A few longitudinal studies described symptoms during a cycle of chemotherapy and across months of chemotherapy treatment. With the exception of nausea, no studies tested any interventions to relieve these common symptoms in adolescents. To ensure that adolescents complete the challenging period of cancer treatment and emerge capable of achieving the developmental milestones of young adulthood, important work remains to be done in this field of symptom management.

Understanding the Functional Late Effects and Informational Needs of Adult Survivors of Childhood Cancer

PURPOSE/OBJECTIVES To report functional (physical and cognitive) late effects, experiences, and information needs of adult survivors of childhood cancer. DESIGN Descriptive, mixed methods survey. SETTING Two pediatric oncology programs in the Midwest. SAMPLE Convenience sample of 272 young adult survivors. METHODS Voluntary survey completion by young adult survivors regarding late effects, experiences, and educational needs to develop appropriate comprehensive care programs for care provision before, during, and after transition to adult care. Survey domains were identified from existing survivorship literature and focused on all aspects of survivorship; however, this article focuses on results specific to the functional domain. MAIN RESEARCH VARIABLES Functional late effects, experiences, information needs, age, gender, and treatment intensity of young adult survivors of childhood cancer. FINDINGS Response rate was 48%. Functional late effects, perceptions, and information needs all correlated with intensity of treatment (those survivors most heavily treated experienced the most symptoms). Survivors wanted more information about late effects and how to deal with them. Women wanted more information about fertility-related topics, and participants who received more intense treatment generally wanted more information. Brain tumor survivors perceived greater cognitive difficulties, cognitive late effects, fatigue, and financial difficulties. CONCLUSIONS Survivors experience myriad physical late effects and require ongoing access to information as needs change over time. IMPLICATIONS FOR NURSING Identifying new and innovative ways to reach survivors and better meet needs is important for care, research, and program development. KNOWLEDGE TRANSLATION The findings of the research underscore the importance of continuous learning opportunities for adult survivors of childhood cancer. The findings also highlight the need for healthcare teams to better understand the current and long-term needs of this population. In addition to traditional communication approaches, technologies such as social media and telemedicine can provide innovative ways to deliver patient-centered care.

On Receiving the Diagnosis of Cancer: The Adolescent Perspective

The adolescent life stage encompasses unique developmental challenges. Little is known about the experience of receiving a cancer diagnosis during this already demanding life stage. The aim of this study is to explore the lived experience of being diagnosed with cancer from the perspective of the adolescent. A phenomenological approach is used to perform semistructured interviews with 10 adolescents who have been diagnosed with cancer within the previous 4 to 6 months. Colaizzis method of analysis is used to allow themes to emerge from these data. Six themes capture the essence of being diagnosed with cancer from the perspective of the adolescent: (1) the stunning loss of normalcy, (2) gaining information, (3) the importance of friends and their reactions, (4) getting used to it, (5) giving back, and (6) family support. The results of this study provide an emerging understanding of the unique perspective of the adolescent with cancer. Understanding this perspective is critical to meet the needs of this population.

The Adolescent Perspective on Participation in Treatment Decision Making: A Pilot Study

Few research studies have obtained data directly from the adolescent with cancer regarding decision making. The developmental stage of these patients focuses on developing independence, yet the health care decisions required for cancer treatment preclude independent decision making. The purpose of this pilot, or exploratory, study was to determine whether the research question is appropriate and whether participants between 13 and 15 years of age were capable of providing rigorous data. The results suggest that treatment decision making was not a concern for these patients and that they were capable and appropriate study participants. Semistructured interviews were performed with 3 adolescents diagnosed with cancer within the previous 3 to 6 months. These data were qualitatively analyzed using Colaizzis technique, which identified themes perceived as critical by these participants. Independent behavior, such as decision making, is not relevant at this health care juncture. However, support, information, and education are desired. These should be routinely available using means appropriate for adolescents. Infusing information and education into the health care plan from time of diagnosis may allow the adolescent to become knowledgeable about the disease process. This may enable him or her to participate in health care treatment decisions, when appropriate.

Unmet Needs of Siblings of Pediatric Stem Cell Transplant Recipients

BACKGROUND AND OBJECTIVES: In 2010, the Bioethics Committee of the American Academy of Pediatrics issued recommendations that pediatric hematopoietic stem cell donors should have an independent advocate. Formulating appropriate guidelines is hindered by the lack of prospective empirical evidence from families about the experience of siblings during typing and donation. Our aim was to provide these data. METHODS: Families with a child scheduled to undergo hematopoietic stem cell transplant were recruited. All family members, including children aged 9 to 22 years, were eligible. Qualitative interviews were conducted within 3 time periods: pretransplant, 6 to 8, and 9 to 11 months posttransplant. Quantitative scales assessing decision satisfaction and regret were administered at time 2. RESULTS: Thirty-three families were interviewed. Of the 119 family members, 76% perceived there was no choice in the decision to HLA-type siblings; 77% perceived no choice in sibling donation; 86% had no concerns about typing other than needle sticks; and 64% had no concerns about donation. Common concerns raised were dislike of needle sticks (19%), stress before typing results (14%), and fear of donation (15%). Posttransplantation, 33% of donors wished they had been given more information; 56% of donors stated they benefited from donation. Only 1 donor expressed regret posttransplant. CONCLUSIONS: Most family members did not view sibling typing and donation as a choice, were positive about the experience, and did not express regrets. We recommend education for all siblings before typing, comprehensive education for the donor by a health care provider pretransplant, and systematic donor follow-up after transplantation.

Quality of life among children with sickle cell disease receiving chronic transfusion therapy.

Sickle cell disease (SCD) is a genetic disorder that is most prevalent among those of African American and Mediterranean descent. Hemoglobin SS is the most severe form of SCD and carries an increased risk for stroke. Although the initial treatment for stroke is an exchange transfusion, the use of routine, chronic transfusion therapy (CTT) has been shown to help prevent this neurological injury. The treatment plan is rigorous and time consuming, both of which impact one’s quality of life (QoL). The purpose of this study was to explore QoL, from the child’s perspective, as it is affected by CTT. Semistructured interviews were performed on 10 children undergoing CTT. Five themes emerged from the data: (a) pain, (b) school issues, (c) disease knowledge, (d) transfusion therapy, and (e) having a stroke. Data from this study reveal that CTT does have an impact on QoL. This information is important to share with those making CTT treatment decisions.

Feasibility and acceptability of an iPad application to explore symptom clusters in adolescents and young adults with cancer

The aim of this study was to evaluate the feasibility and acceptability of a computer‐based symptom cluster heuristics tool designed to explore symptom clusters experienced by adolescents and young adults (AYAs) with cancer. The Computerized Symptom Capture Tool (C‐SCAT) is a newly developed iPad application, which combines graphical images and free text responses in an innovative heuristics approach to explore symptoms and symptom clusters.

Neurocognitive sequelae of sickle cell disease: current issues and future directions.

Sickle cell disease is a genetic disorder with an autosomal recessive pattern of inheritance. This disease is most prevalent among those of African American and Mediterranean descent. Cerebral vascular accident (CVA) or stroke is one of the major complications of hemoglobin SS (Hgb SS) disease. CVA has implications for physical as well as neurocognitive function for children. Recent literature suggests that some children with sickle cell disease without overt signs of CVA may still have evidence of neurological deficit, both on magnetic resonance imaging and neurological examination. There is a growing body of knowledge that further aids in delineation of risk factors for CVA, silent infarct, and neurocognitive deficits in children with Hgb SS disease. More research is needed to continue to explore avenues for identification and intervention. The purpose of this article is to delineate areas of ongoing research in this important area.

I'm a survivor, go study that word and you'll see my name: adolescent and cancer identity work over the first year after diagnosis.

Background: The diagnosis of cancer in adolescence is a significant challenge, particularly because of the developmental expectations of this life-stage, regarding autonomy and identity formation. Adolescents must assimilate cancer into their normative identity work. Objective: The objective was to explore and describe themes common to adolescents with cancer. Methods: A longitudinal qualitative descriptive design was used. Participants were interviewed up to 4 times during the first year after diagnosis, and inductive content analysis was used. Results: Fifteen adolescents participated. The most salient themes over time related to the development of adolescent identity, cancer identity, and integration of the two into an adolescent with cancer identity. Conclusions: This research demonstrates the active role that adolescents with cancer take in constructing their identities both around their cancer and separate of it. Further research is needed to more fully delineate this process, but this research provides a framework for next steps. Implications for Practice: Understanding this process allows practitioners to provide anticipatory guidance for adolescents experiencing cancer, understanding their need for peer support (peers with cancer and without) as well as the need to normalize the cancer experience to the greatest extent possible.