Preferences for decision-making involvement and information needs of parents seeking treatment for their child's anxiety

Decisions concerning health services are often important and the process of making these decisions can be challenging for families. As part of family-centred care in pediatric practice, understanding the types of information parents need or prefer is important in helping them make informed decisions. While there has been a modest amount of research on parental decision-making for pediatric medical problems such as cancer, very little research has focused on decision making for child mental-health problems. Anxiety problems are common in children and the choices concerning treatment are quite complex, ranging from psychological and pharmacological treatments to combined treatments. The purpose of this study was to understand parents' views about their decision-making involvement and information needs when considering a treatment decision for child anxiety. A two-phase, sequential mixed-methods research design was employed consisting of an initial qualitative phase, followed by a quantitative phase. In Study 1, 19 parents were interviewed about their process of decision making and their information needs concerning treatment for child anxiety. Four themes emerged: (a) decision-making about children's anxiety is not explicit, but parents have perceptions about the decision-making process, (b) parents see themselves as protectors, (c) information is key in decision making, and (d) parents have different perspectives on psychosocial versus medication treatments. These findings informed the development of a quantitative survey about parents' information needs. In Study 2,93 parents completed this survey of information needs and preferences for decision-making involvement, amount, and sources of information. Results showed that parents have a strong preference for decision-making involvement, desire a broad range of information, want a substantial amount of information, and seek various sources of information (e.g., written pamphlets, discussions with a provider). Exploratory findings showed that symptoms of child anxiety and parental efficacy were related to the amount of information parents preferred. The research has implications for the development of materials and decision aids to facilitate parents' informed decision-making. It is hoped that such information will assist service providers in communicating with parents and families more effectively, supporting informed decision-making, and strengthening family-centred care.