Joan E. Haase

The Adolescent Resilience Model as a Guide to Interventions

Adolescents with cancer (AWC) are a neglected population in the area of psychosocial services, and little theoretically based research has been conducted on interventions to help them positively adjust to the cancer experience. In addition, although knowledge of how individuals positively adjust to difficult life circumstances can provide important guidance for developing effective interventions, research has underemphasized positive health and overemphasized pathology models in addressing psychosocial adjustment of AWC. Theories focusing on positive health concepts such as resilience are potentially excellent guides for developing effective psychosocial interventions, because the factors that influence positve health, such as hope, positive coping, and perceived social support, are amenable to improvement. The Adolescent Resilience Model (ARM) is one of the first theoretical models to propose a comprehensive, integrative representation of the process and outcomes of resilience and quality of life in AWC. The ARM is an example of a theory-driven research program that aims to improve outcomes for AWC by focusing on positive health concepts. Presented here are the underlying theoretical perspectives, variables in the ARM, and the ways the ARM may be used to guide interventions aimed at improving short- and long-term outcomes for AWC.

The Adolescent/Young Adult Experience

Adolescents and young adults with cancer (AYA) have strikingly poorer outcomes when compared to younger or older patients. Contributing reasons include low rates of enrollment in clinical trials and the “invisibility” of the AYA perspectives in research reports. We recommend a shift in research perspectives away from function-based studies that focus on morbidity and mortality outcomes to meaning-based models that will very likely rely upon qualitative methods and findings as the basis for developing psychosocial interventions that are sensitive to the AYA cancer experience. In addition, research on positive health concepts such as hope, spirituality, and positive coping are recommended as a way to learn about the effective strategies used by AYA to adjust to the cancer experience.

Comparison of younger and older breast cancer survivors and age‐matched controls on specific and overall quality of life domains

Younger survivors (YS) of breast cancer often report more survivorship symptoms such as fatigue, depression, sexual difficulty, and cognitive problems than older survivors (OS). This study sought to determine the effect of breast cancer and age at diagnosis on quality of life (QoL) by comparing 3 groups: 1) YS diagnosed at age 45 years or before, 2) OS diagnosed between 55 and 70, and 3) for the YSs, age‐matched controls (AC) of women not diagnosed with breast cancer.

Social Support and Symptom Distress in Adolescents/Young Adults With Cancer

The purpose of this secondary analysis was to describe the relationships of friend, family, and health care provider social support to pain, fatigue, depressed mood, and insomnia in adolescents and young adults with cancer using the Adolescent Resilience Model. Specific aims of the study were to describe the relationships of 3 separate sources of perceived support—friends, family, and health care providers to the symptom-related distress of pain, fatigue, depressed mood, and insomnia.

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.

Quality of life of African American breast cancer survivors: how much do we know?

Women affected by breast cancer experience an array of quality-of-life issues that affect their daily living in both short-term and long-term survivorship. Because African American women experience disparities in breast cancer survival, their quality-of-life concerns may paint a different picture from those of other racial and ethnic groups. To gain a better understanding of quality of life in African American women breast cancer survivors, we conducted a review, using an adaptation of Brenners quality-of-life proximal-distal continuum, of studies that have investigated these womens experiences and associated variables. Twenty-six studies, qualitative and quantitative, were reviewed that identified both deficits and positive outcomes of breast cancer treatment and sequelae, including physical, emotional, social, and patient-provider problems as well as heightened spirituality and positive growth. Although overall global quality of life was favorable in both African American and white survivors, differences existed in the nature and extent of deficits between these 2 survivor groups. Nursing implications of this review point to the need for further rigorous research and wide dissemination of results. Recommendations for practice include tailoring assessments and interventions within the context of the lives of African American women breast cancer survivors.

Information Needs of Adolescents With Cancer

Adolescents with cancer (AWC) have poorer treatment outcomes as well as higher incidence and mortality rates than do younger children, and they face additional challenges related to normal developmental issues of adolescence. Although research has shown that information on the cancer experience improves outcomes by decreasing uncertainty and increasing perceived support, little is known about the types of information AWC need and want. This study describes how AWC rate the importance of specific cancer-related information, analyzes gender and age group differences, and compares 2 different time-since-diagnosis groups of AWC. The sample consisted of adolescents with newly diagnosed cancer (n = 74) and those 1 to 3 years from diagnosis (n = 39). The Information Preferences of Adolescents (IPA) Scale was used to measure the adolescents’ information needs. Both samples of AWC rated the need for information as high. There were no significant differences by age, but females had significantly higher total scores for both groups and for many item means in the newly diagnosed group. Qualitative analysis of the additional write-in items generated 4 themes: treatment/side effects, uncertainty, social issues, and personal/emotional issues.

Uncertainty in adolescents and young adults with cancer

PURPOSE/OBJECTIVES To describe uncertainty in three groups of adolescents and young adults with cancer at specific times in their cancer experience: newly diagnosed, diagnosed one to four years, and diagnosed five or more years. DESIGN Descriptive, cross-sectional, comparative. SETTING Six pediatric oncology centers in North America. SAMPLE 193 adolescents and young adult cancer survivors aged 11-22 years, able to read English, with no central nervous system disease. METHODS A booklet of questionnaires was completed during a clinic visit or hospitalization. Uncertainty was measured using Mishels Uncertainty in Illness Scale. MAIN RESEARCH VARIABLES Uncertainty and time since diagnosis. FINDINGS No significant differences were found in the overall level of uncertainty among the three time-since-diagnosis groups; however, analysis of variance on individual items detected significant group differences for 8 of the 33 items. Newly diagnosed survivors had significantly higher uncertainty for future pain, the unpredictable illness course, staff responsibilities, and concerns about when they would be able to care for themselves. Survivors five or more years from diagnosis had significantly higher uncertainty related to knowing what was wrong, and they had more unanswered questions and higher uncertainty compared to the two other groups about the probability of successful treatment. All of the survivors had high uncertainty about the multiple meanings of communication from doctors. CONCLUSIONS The overall level of uncertainty remained unchanged across the survivorship continuum, but differences existed in specific concerns. IMPLICATIONS FOR NURSING Uncertainty is important to consider far beyond the treatment period, particularly assessment of information needs and acknowledgment of inherent uncertainty throughout cancer survivorship.

Psychometric Properties of the Herth Hope Index in Adolescents and Young Adults with Cancer

The Herth Hope Index (HHIndex), originally developed for adults, was examined for appropriateness in two studies of adolescents and young adults with cancer—those at various stages of treatment (N = 127) and those newly diagnosed (N = 74). The internal consistency reliability (Cronbach’s alpha) of the index was .84 and .78, respectively, in the two samples. Construct validity was supported by discriminant correlations in the moderate to low range between the HHIndex and measures of uncertainty in illness and symptom distress, and by moderate convergent correlations with measures of resilience (self-esteem, self-confidence, and self-transcendence) and quality of life (index of well-being). A four-step factor analysis procedure was done, and confirmatory factor analysis suggested that a one-factor solution best fit the data in this population. Findings indicate that the HHIndex is a reliable measure of hope in adolescents and young adults with cancer. Evidence of discriminant and convergent validity in measuring hope in adolescents and young adults with cancer was also generated. Further exploration of the HHIndex factor structure in adolescents and young adults is needed.

Advances in Defining, Conceptualizing, and Measuring Quality of Life in Pediatric Patients With Cancer

PURPOSE/OBJECTIVES To describe the notable advances in defining, conceptualizing, and measuring quality of life (QOL) in pediatric patients with cancer since the 1995 Oncology Nursing Societys State-of-the-Knowledge Conference on QOL. DATA SOURCES Published research, clinical papers, and hospital policies. DATA SYNTHESIS QOL ratings from children and adolescents are being solicited increasingly in research and clinical assessments during treatment and survivorship using various methods but are not solicited from terminally ill patients; qualitatively induced models of pediatric cancer-related QOL now are being tested using quantitative methods. CONCLUSIONS Children aged five years and older are able to report their cancer-related QOL; reliable and valid QOL instruments exist for all phases of treatment except end of life. IMPLICATIONS FOR NURSING Nurses can involve children and adolescents in rating their QOL for research and clinical purposes and can apply theory-based QOL models to direct care.