Caring for at-risk infants : the experiences of parents with infants on home apnoea monitors : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Nursing Studies at Massey University

Abstract

Home apnoea monitoring for infants considered to be at risk for sudden infant death syndrome (SIDS) has been available in New Zealand since 1978. In light of the fact that the efficacy of home monitoring is unproven (Krongrad and O'Neill. 1986; Phipps and Drotar, 1990) an understanding of the impact of monitoring on families is essential. In the present study, descriptive case studies (as described by Yin, 1984) are presented of six New Zealand families undertaking the home apnoea monitoring of their infants. Indepth interviews, conducted over a three month period, prospectively explored the experiences of one or more caregivers. Analysis of the data confirmed many of the reported findings from previous (mainly American) studies. In particular, parents perceived their infants to be "at risk" whilst monitored, and tended to become socially isolated because of their reluctance to leave their infants with other caregivers. The false alarms were a serious problem, causing negative arousal in the parents. When the alarms sounded parents found it very difficult to determine whether or not the infant was, or had been apnoeic. The monitor itself became the best indicator of the child's risk status and parents sometimes relied on the monitor to the detriment of other treatment regimes and of surveillance of the infant's condition for problems other than the risk of apnoea. The present study used a systemic family nursing perspective to frame the participants' experiences. It was thus considered essential to take into account the family context in which monitoring was undertaken. Parents in the present study who, for example, had previously lost infants to SIDS, spoke of the ongoing grieving processes underpinning their monitoring experiences of subsequent infants. When the youngest child was no longer monitored, the focus of attention shifted from the risk status of the infant to the prospect of a normal childhood. Parents increasingly made their own decisions about how and when to use the monitor, based on their perceptions of their own ability to cope without it, rather than on the medical indications for its use or discontinuance. Mothers, especially, expressed strong needs for support from knowledgeable health professionals who could provide an integrated, holistic approach to the care of their infants, for monitoring supervision and for general parenting advice and support. The concept of a community-based nurse case manager is suggested as an appropriate means to meet their needs for a co-ordinated professional support service.