Novice Nurses' Experiences With Palliative and End-of-Life Communication.

Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: (a) Sacred Trust to Care for the Child and Family, (b) An Elephant in the Room, (c) Struggling with Emotional Unknowns, (d) Kaleidoscope of Death: Patterns and Complexity, (e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and (f) Being Present with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses.

Perceptions of communication, family adaptability and cohesion: a comparison of adolescents newly diagnosed with cancer and their parents.

PURPOSE: To describe and compare adolescent and parent perspectives on communication, family adaptability and cohesion, as well as relationships among these variables, during the first month of an adolescent's cancer diagnosis. METHODS: Seventy adolescent-parent dyads were enrolled as part of a larger multi-site study. The adolescents ranged in age from 11 to 19, and 61% were males. Parents were predominately mothers (83%). Dyads were predominately non-Hispanic Caucasian (63%). Measures included the Parent-Adolescent Communication Scale and the Family Adaptability and Cohesion Evaluation Scale (FACES II). Paired t-tests, Pearson correlations, intra-class correlation coefficients and multiple linear regression analyses were completed. RESULTS: Adolescent scores on communication, family adaptability and cohesion were significantly lower than parent scores. The inter-dyadic agreement between adolescents and parents was low. Communication, family adaptability and cohesion were examined separately for adolescents and for parents, and significant relationships were found. Both adolescent- and parent-perceived communication was significantly associated with family adaptability and cohesion outcomes. CONCLUSIONS: Differences were found in adolescent and parent perceptions of communication, family adaptability and cohesion. When both adolescents and parents had better perceived communication, this was associated with better perceived family adaptability and cohesion. Results suggest that the development of interventions to enhance adolescent-parent communication could help foster better family adaptability and cohesion, which may ultimately impact their psychological adjustment. In addition, understanding the degree to which adolescents and parents disagree on their perceptions, including the results that parents generally have more favorable perceptions, may be a useful starting point when developing interventions.

Physical and mental health status of female adolescent/young adult survivors of breast and gynecological cancer: a national, population-based, case-control study.

PURPOSE: Each year, nearly 21,000 adolescents and young adults (AYA) ages 15 to 29 years are diagnosed with cancer. Breast and gynecological cancers account for 25% of the cancers seen in AYA females. The purpose of this study was to compare the current physical and mental health status of female AYA cancer survivors with non-cancer female controls. METHODS: Using data from the population-based 2009 National Health Interview Survey, 100 cases of female AYA survivors of breast and gynecological cancers were identified [female AYA cancer survivor (FCS) group]. FCS cases were matched with 300 female respondents without a history of cancer on age, education, marital status, and minority status [non-cancer control (NCC) group]. The FCS and NCC groups were compared on a range of physical and mental health status indices using analysis of covariance and binary logistic regression. RESULTS: FCS group reported significantly poorer physical and mental health status than the matched controls. Relative to the NCC group, FCS survivors had significantly poorer scores on 7 of 8 mental health outcomes and were more likely to meet criteria for serious psychological distress (odds ratio = 4.23, p ≤ 0.001). FCS group also reported greater lifetime and current prevalence of various medical conditions, more health-related disabilities, and greater functional limitations than the NCC group. CONCLUSION: Diagnosis of breast and gynecological cancer during adolescence and young adulthood is associated with clinically important deficits in physical and mental health status. Given the young age of this cancer survivor cohort, increased attention should be devoted to minimizing these deficits.

Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer.

INTRODUCTION: To provide an overview of factors related to recruitment of adolescents and young adults (AYA) into research and recruitment rates and reasons for refusal from a multicenter study entitled "Stories and Music for Adolescent/Young Adult Resilience during Transplant" (SMART). METHODS: A randomized clinical trial study design was used. The settings included 9 hospitals. The sample included AYAs (aged 11-24 years) who were undergoing a stem cell transplant. Several instruments were used to measure symptom distress, coping, resilience, and quality of life in AYA with cancer. RESULTS: A total of 113 AYA were recruited (50%) for this study. Strategies were refined as the study continued to address challenges related to recruitment. We provide a description of recruitment strategies and an evaluation of our planning, implementing, and monitoring of recruitment rates for the SMART study. DISCUSSION: When designing a study, careful consideration must be given to factors influencing recruitment as well as special considerations for unique populations. Dissemination of strategies specific to unique populations will be helpful to the design of future research studies.

Physical and mental health status and health behaviors of childhood cancer survivors: findings from the 2009 BRFSS survey.

BACKGROUND: The growing number of childhood cancer survivors makes examination of their current physical and mental health status and health behaviors an important concern. Much of what is known about the long-term outcomes of childhood cancer survivors comes from the Childhood Cancer Cohort Study (CCSS) which uses sibling controls. PROCEDURE: Using data from the 2009 Behavioral Risk Factor Surveillance System survey, 651 childhood cancer survivors and 142,932 non-cancer peer controls were identified. The two groups were compared on a variety of physical and mental health status and health behavior variables using ANCOVA and binary logistic regression. RESULTS: While controlling for differences in age, sex, and minority status, survivors significantly (P ≤ 0.001) had poorer socioeconomic outcomes, more comorbid conditions, lower life satisfaction, less social and emotional support, poorer general health, and reported more days per month of poor physical and mental health than non-cancer individuals. Survivors were more likely to report being a current smoker [odds ratio (OR) = 2.33; 95% confidence interval (CI), 1.98-2.73; P < 0.001]; tested for human immunodeficiency virus (HIV) (OR = 1.79; 95% CI, 1.52-2.11; P < 0.001); and that at least one HIV situation applied to them (OR = 2.06; 95% CI, 1.55-2.74; P < 0.001). No significant differences were found between groups in regards alcohol use and diet. CONCLUSIONS: Results support and extend previous findings reported by the CCSS. New findings regarding survivors' increased likelihood to engage in risky behaviors proposes new directions for future research.

Connectedness in the context of patient-provider relationships: a concept analysis.

AIM: This paper is a report of an analysis of the concept of connectedness. BACKGROUND: Previous attempts to conceptualize patient-provider relationships were limited in explaining how such relationships are fostered and maintained, and how they influence patient outcomes. Connectedness is a concept that may provide insights into the advantages of patient-provider relationships; however, the usefulness of this concept in health care is limited by its conceptual ambiguity. Although connectedness is widely used to describe other social relationships, little consistency exists among its definitions and measures. DATA SOURCES: Sources identified through CINAHL, OVID, PubMed and PsychINFO databases and references lists of selected articles between 1983 and 2010. REVIEW METHODS: A hybrid concept analysis approach was used, involving a combination of traditional concept analysis strategies that included: describing historical conceptualizations, identifying attributes, critiquing existing definitions, examining boundaries and identifying antecedents and consequences. RESULTS: Using five distinct historical perspectives, seven attributes of connectedness were identified: intimacy, sense of belonging, caring, empathy, respect, trust and reciprocity. A broad definition of connectedness, which can be used in the context of patient-provider relationships, was developed. A preliminary theoretical framework of connectedness was derived from the identified antecedents, attributes and consequences. CONCLUSION: Research efforts to advance the concept of connectedness in patient-provider relationships have been hampered by a lack of conceptual clarity. This concept analysis offers a clearer understanding of connectedness, provides recommendations for future research and suggests practice implications.

Principles and strategies for monitoring data collection integrity in a multi-site randomized clinical trial of a behavioral intervention.

Although treatment fidelity strategies for enhancing the integrity of behavioral interventions have been well described, little has been written about monitoring data collection integrity. This article describes the principles and strategies developed to monitor data collection integrity of the "Stories and Music for Adolescent/Young Adult Resilience During Transplant" study (R01NR008583, U10CA098543, and U10CA095861)-a multi-site Children's Oncology Group randomized clinical trial of a music therapy intervention for adolescents and young adults undergoing stem cell transplant. The principles and strategies outlined in this article provide one model for development and evaluation of a data collection integrity monitoring plan for behavioral interventions that may be adapted by investigators and may be useful to funding agencies and grant application reviewers in evaluating proposals.

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.