Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer.

PROBLEM IDENTIFICATION: Involvement in treatment decision making (TDM) is considered a key element of patient- and family-centered care and positively affects outcomes. However, for adolescents and young adults (AYAs) with cancer, little is known about the current state of knowledge about their perspective on and involvement in TDM or the factors influencing AYAs' TDM involvement. LITERATURE SEARCH: Integrative review focused on AYAs aged 15-21 years, their involvement in TDM, and factors influencing their involvement using the MEDLINE®, PsycINFO®, CINAHL®, and Web of Science databases. DATA EVALUATION: 4,047 articles were identified; 21 met inclusion criteria. SYNTHESIS: Five factors were identified. IMPLICATIONS FOR RESEARCH: Research is needed to understand AYAs' preferences for TDM, the type and degree of their involvement, and the interactions between factors that contribute to or impede TDM.

"Shifting family boundaries" after the diagnosis of childhood cancer in stepfamilies.

The childhood cancer experiences of stepfamilies have not been described despite the fact that nearly one third of U.S. children will live in a stepfamily household. To describe the impact of diagnosis on parental relationships in stepfamilies, we undertook a secondary analysis of data from a study of parental decision making in structurally diverse families. As described by 13 parents of six stepfamilies, the crisis of a childhood cancer diagnosis immediately changed family dynamics. Parental relationships changed, which shifted family boundaries, creating instability in families who were trying to cope with a very stressful life experience. Through increased understanding of parental relationship changes that occur after the diagnosis of childhood cancer in stepfamilies, clinicians can anticipate these changes and provide supportive interventions to reduce overall family conflict and distress. These distinctive stepfamily responses underscore the need to include structurally diverse families in future trials targeting parental coping in childhood cancer.

Three instruments to assess fatigue in children with cancer: the child, parent and staff perspectives.

The purpose of this study was to develop and test three instruments to measure fatigue in children with cancer from the perspectives of the child, parents and staff. The study consisted of three phases: instrument development, content validation, and estimations of psychometric properties of the three fatigue instruments. One hundred forty-nine children between the ages of 7-12 years presently receiving chemotherapy for cancer, 147 parents and 124 staff participated in this study. The instruments demonstrated strong initial validity and reliability estimates. This study is the first to provide valid and reliable instruments to measure fatigue in children with cancer.