Challenges and issues in conducting descriptive decision-making studies in pediatric oncology: A tale of two studies*1

Parents' views of their children's participation in phase I oncology clinical trials

“…The setting for the primary two studies was a children's cancer research center in the Midsouth. Both studies were based on the initial phase of a decision-making model, which involves characterizing the process of decision making (Hinds et al, 1998b). The first study was a retrospective study of 39 English-speaking parents of children (Hinds et al, 1998c).…”

“…Interviews were based on a 5-item structured interview format and a 15-item multiple-choice questionnaire. The second study is a prospective study of 52 parents, 10 adolescents, and 22 physicians who were interviewed during end-of-life decisions and used methods refined in the first study (Hinds et al, 1998b;2001a.…”

An Observational Study of the Level at Which Parents Participate in Decisions During Their Child’s Hospitalization

“…Theoretical perspectives used in decision making research differ considerably, depending on the aim of the study. The descriptive decision-theory model 8 used by Hinds et al 9,10 focuses on the process of decision making. Using this model, it is possible to describe and explain how situations and human values affect decision making.…”

Maternal experiences making a decision about heart surgery for their young children with congenital heart disease

“…The decision‐making process is becoming more complex as it involves past experiences, values, emotions and messages, together with advances in medical technology and the increased range of therapy choice. The decision‐making process means decision makers need to choose the most appropriate solution for the future actions through a series of consecutive processes and steps using a rational approach (Hinds et al. 1998).…”

“…When parents make decisions about their sick children, confusion might be created due to the influence of hearsay, the medical professionals’ viewpoints and uncertainty about the survival rate after surgery (Anderson & Hall 1995). Hinds et al. (1998) identified the influential factors affecting decision‐making for children with cancer and these included: the child's best interests, clinical values, the child's health status, the child's wishes, professional and other relevant information, professionals’ approval and social expectations.…”