The genogram as a recruitment tool for identifying primary caregivers of youth living with sickle cell disease preparing for transition.

AIMS: The purpose of this secondary analysis was to describe the impact of using genograms to identify family caregivers from an original research study which used family caregiver-adolescents/young adults (AYA) dyads. BACKGROUND: Research to improve transition preparation for AYA with chronic disease is essential as 90% will survive into adulthood. Family-based transition research is specifically needed as a majority of transition preparation will occur in the home setting. Dyadic research on transition has not previously described strategies for recruiting appropriate family caregivers. DESIGN: A descriptive, secondary analysis was conducted using genograms developed during the original study conducted between October 2019 and February 2020. METHODS: For this secondary analysis conducted between July 2020 and August 2021, 50 genograms were analysed using descriptive statistics to describe family structures, relationships and responsibilities in families of AYAs living with sickle cell disease. RESULTS: In 43 genograms, there was only one primary caregiver in the family. In seven genograms, there were multiple primary caregivers who met the inclusion criteria for primary caregiver in a single family. In five genograms, there were two appropriate primary caregivers in a single family, and in two genograms, there were three appropriate individuals in a single family who met study criteria as a primary caregiver. CONCLUSIONS: Findings from the analysis of the genograms used in the original study demonstrated potential ability to improve on dyad recruitment by more specifically identifying the family member most involved in supporting the AYA's disease management. IMPACT: Genograms are an established tool for gathering information on families and application with recruitment could improve research in the realm of transition and other family-based research. NO PATIENT OR PUBLIC CONTRIBUTION: This was a secondary analysis that assessed already existing data.

Uncovering Family Treatment Decision-Making Processes: The Value and Application of Case Study Methods to Family Research.

Research on how and why family processes influence phenomena is essential to advancing many areas of science. Case study methods offer an approach that overcomes some of the sampling and analysis obstacles researchers face when studying families. This article aims to illustrate the benefits of case study methods for studying complex family processes using an example from treatment decision-making in sickle cell disease. Using survey, observation, and interview data from various family members within multiple family units, we detail our application of the following analytic strategies: (a) proposition-building, (b) pattern-matching, and (c) cross-case synthesis. Incorporating propositions from a conceptual framework assisted us in study development, data collection, and analysis. Development of graphs and matrices to create thematic family profiles uncovered how and why treatment decision-making occurred as a family process in a pediatric chronic illness. Case study methods are an established, but innovative approach to investigating various phenomena in families.

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.

Measuring Transition Readiness: A Correlational Study of Perceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease.

Adolescents and young adults (AYAs) often transfer from pediatric to adult care without adequate preparation, resulting in increased morbidity and mortality. The purpose of this descriptive research study of parent/AYA dyads was to measure perceptions of transition readiness. Factors that were found to be associated with perceptions of increased readiness to transition included AYA age, the amount of responsibility AYAs assume for their healthcare and the degree of parent involvement. More attention should be focused on these aspects of care to improve transition from pediatric to adult care for AYAs with sickle cell disease.

"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.