REORIENTING FAMILY SERVICES: THE PROFESSIONAL RESPONSE TO SUDDEN UNEXPECTED DEATHS IN INFANCY -- ISSUES AND PROTOCOLS.

• Author: Tipene-Leach, David

Abstract

This paper discusses key service and support issues faced by families who have experienced a sudden unexplained death of an infant (SUDI), the majority of which are from sudden infant death syndrome (SIDS), within an environment of increasing social inequality and poor service coordination. The issues include: changes in the social and economic environments of SUDI families; the forensic focus of the professional response to a SUDI; inadequate training, audit and interagency coordination of key service agencies; and poor data collection for review and for tracking trends. The paper also discusses strategies developed by the Maori SIDS Prevention Programme (MSPP) team to address these issues. These include the development, in consultation with key players, of an integrated and holistic national SUDI death scene protocol with regional teams that facilitate the coordination of services at the local level. In addition, a child mortality review process is advocated. These issues and proposed strategies potentially have relevance to families facing other difficulties that require the support and/or involvement of a number of government and other agencies.

INTRODUCTION

This paper uses the case of sudden infant death syndrome (SIDS) to examine public sector service issues arising for New Zealand families within an environment of increasing social inequality and poor service coordination. The impact of economic and social inequalities, and the fragmentation of government services, have been very evident amongst families experiencing the sudden and unexpected death of an infant (SUDI), the majority of which are due to SIDS. In recent years, as social disadvantage has become a more prominent feature in SIDS cases, these issues have been particularly challenging.

Since the introduction of new right economic and social policies in New Zealand in the 1980s, there has been growing concern expressed about increases in poverty, poverty-related disease, poor housing conditions and other such problems (e.g. Gunby 1996, Stephens et al. 2000, Baker et al. in press). Indeed, the long-standing social, economic and health gaps between Maori and non-Maori showed no decline over the decade from 1988 to 1998 and, in some cases, widened (Te Puni Kokiri 2000). In the concomitant drive to improve efficiencies and increase accountability in the public sector, government agencies became more competitive, budgets were tightened and roles made more specific (Shirley 1990). By the mid-1990s, however, there was increasing public criticism about public sector fragmentation, dis-coordination, boundary keeping and cost shifting (Angus 1999).

These issues have particular relevance to families in which an infant has died of SIDS. In New Zealand SIDS occurs most commonly amongst the socially deprived, low birth-weight infants of young, smoking, Maori mothers (Mitchell and Scragg 1994). Maori SIDS Prevention Programme workers have found that such families face multiple social and economic problems and are often already involved with social and other agencies. Although a number of interagency initiatives like Strengthening Families and Family Start (Angus 1999) have recently been established to address some of the above problems, they do not service families of SIDS infants and there is no mechanism in place to review how services collectively impact on these families, how they might be better coordinated or what gaps remain.

The aim of this paper is to discuss key service and support issues faced by SIDS families, as ascertained through the work of the Maori SIDS Prevention Programme (MSPP), and to describe the strategies developed by the MSPP team to address these issues. While some of the issues raised and the strategies promoted are specific to SIDS and SUDI, the larger issues have relevance to families facing other difficulties that require the support and/or involvement of government and other agencies. The recognition and servicing of gaps in these services for SIDS families may contribute to the Labour Government's stated priority of closing the long-standing social, economic and health gaps between Maori and non-Maori (Bidois 2000).

The paper begins with a background section on SIDS in New Zealand and the work of the MSPP team. Next, the issues that have been identified through the MSPP team's close work with SIDS families and with the agencies involved with these families are presented, alongside a range of strategies initiated by the team to address these issues. Lastly, the wider implications of these issues and strategies are discussed.

BACKGROUND

In the mid-1980s the SIDS rate in New Zealand was higher than that in most other developed countries (Mitchell et al. 1989). The New Zealand Cot Death Study, conducted between 1987 and 1990, identified four modifiable risk factors: prone infant sleeping, maternal smoking, not breastfeeding and infant bed-sharing (Mitchell et al. 1992), although the latter was later found to be most significant if combined with maternal smoking (Scragg et al. 1993). Other identified risk factors, which were not deemed to be modifiable were: low socio-economic status, young maternal school-leaving age, young motherhood, unmarried motherhood, non-attendance at antenatal classes, little or late antenatal care, greater number of previous pregnancies, low infant birth weight, prematurity, Maori ethnicity, male sex and admission to neonatal intensive care (Mitchell et al. 1992).

Between 1989 and 1992, a national cot death campaign disseminated information widely about the modifiable risk factors. During this time, New Zealand's national SIDS rate halved. However, the Maori SIDS rate, which was more than twice that of the general population at the beginning of the campaign, saw a much smaller decline. By 1993 the Maori SIDS rate was six times that of non-Maori (Ministry of Health 1996). Thus the demography of SIDS infants shifted, with the majority of cases now Maori. With the subsequent 1995 redefinition of Maori ethnicity, the proportion of Maori SIDS cases further increased (Tipene-Leach et al. in press).

The MSSP was funded by Government in 1994 to address SIDS in the Maori community. It was developed into a national programme with five regional coordinators and a network of local workers. The development and work of this team have been documented elsewhere (Tipene-Leach et al. 2000). In brief, it has been involved in:

* the dissemination of SIDS information in the Maori community;

* the training of Maori community health workers in SIDS prevention;

* the support of Maori and other SIDS families;

* the development of a national infant mortality register which records all SIDS deaths;

* the development of infant death scene protocols; and

* the development of regional SUDI teams to respond to sudden and unexpected infant deaths.

The particular areas of concern discussed in this paper first arose as Maori SIDS regional coordinators moved to develop a systematic response to the plight of the mostly Maori SIDS families. The same problems were highlighted as one of the national team worked closely with workers from the different agencies involved in these deaths.

When a baby dies suddenly and unexpectedly in New Zealand, a process involving a number of agencies is begun under the authority of a coroner, with the Police as agent. This is mandated by the 1988 Coroners Act. The person who finds a baby unexpectedly dead may attempt resuscitation and should call the ambulance or a doctor. Following medical confirmation of death, the Police are called and usually it is the task of the nearest squad car to respond.

The police officers attending the death scene must firstly determine whether a homicide investigation is...