Information behaviour of primary caregivers of inpatients at Starship Children's Health

Abstract

This study investigated the information needs and information behaviour of twenty-one primary caregivers of inpatients at Starship Children's Health. The sample consisted of similar numbers of Maori, New Zealand European and Pacific caregivers. Factors affecting caregivers' information behaviour, such as ethnicity, were examined. The study investigated to what extent patient information provided by Starship staff met caregivers' needs. The study used a qualitative approach involving in-depth focus group and individual interviews. Selection of participants was by non-random purposive sampling. Caregivers were selected who had children from a range of inpatient wards at Starship. Interviews were recorded on audiotape and transcribed. Data analysis involved coding of interview transcript data with the codes being developed inductively from the data. Coding of the data led to the identification of themes and patterns. Caregivers' needs were for information in lay terms on their child's condition (including cause, diagnosis and prognosis), tests, treatment, surgical procedure, rehabilitation and other parents' experiences. The results confirmed that information avoidance also occurred amongst the participants. The information received from Starship by caregivers was in many cases reasonably comprehensive and, in the main, greatly appreciated. However, the majority of caregivers, across all ethnic groups, had unmet needs.