The SIDS care-workers study: perceptions of the experience of Maori SIDS families.

• Author: McCreanor, Tim
• Position: Sudden Infant Death Syndrome

Abstract

Sudden Infant Death Syndrome (SIDS) continues as a significant cause of death of infants, particularly among Maori. While much attention has been focused through biomedical research on causation, little attention has been paid to the social and contextual issues surrounding these tragedies and their consequences among families. This paper reports on a qualitative scoping study with members of the national Maori SIDS Prevention Unit, drawing upon their cumulative knowledge and expertise to shed light on the fraught interfaces between families and institutions that follow SIDS. A thematic analysis presents the main issues, and the discussion considers their significance for the grieving of the bereaved parents, and the social practices of service institutions that deal with SIDS.

INTRODUCTION

In New Zealand, research on Sudden Infant Death Syndrome (SIDS) has concentrated on the quantitative analysis of data from the New Zealand Cot Death Study, a case control study that measured the risk associated with certain parental behaviours and characteristics of the social situation or family environment. There is as yet no published research in New Zealand that explores, in a qualitative fashion, the experience that SIDS families endure. This paper reports on an exploratory process that was undertaken in order to delineate the important issues that might be relevant in proposed subsequent interviewing of families for an in-depth study on the experiences and perceptions of grief among Maori SIDS families. Its findings were such that we felt it was deserving of publication in its own right and would address, in some small way, the absence of such studies in the literature.

BACKGROUND

In the early 1980s New Zealand had a higher rate of SIDS than other comparable Western countries (Mitchell 1990). A Cot Death Study from 1987 to 1990 identified a number of risk factors and a national SIDS prevention programme followed in 1991. The campaign significantly decreased the national SIDS rates but Maori SIDS rates decreased only minimally (Mitchell et al. 1994). Subsequently, the Public Health Commission funded a Maori-specific SIDS prevention coordinator who, with a Maori public health physician (David Tipene Leach), consulted extensively in Maori communities about the experiences of SIDS families in order to develop an appropriate health promotion programme. Maori SIDS rates have fallen steadily during the period following the implementation of the programme (New Zealand Health Information Service 2004), but Maori deaths are currently six times the Pakeha rate and the loss of Maori babies to this condition remains as part of the bleak catalogue of indicators of Maori health disparities (Ajwani et al. 2003).

The grief within these Maori families seemed inextricably entwined with the social conditions of the community, and criticism was voiced about the way in which families were dealt with by professional services and the lack of support they received. The trauma of post-mortem examination came in for particular scrutiny (Tipene Leach et al. 2000b).

In the development of the Maori SIDS programme, the need for dedicated SIDS care-workers quickly became clear. Maori women with strong iwi networks and the ability to work well with local health services were employed to cover defined geographical regions throughout the country, the first ones beginning in 1996. These care-workers provided education, training and resources to a range of child health care providers and Maori community health workers alongside the development of the health promotion programme. Making use of their special involvement in the community, their role was soon extended to include case work; that is, the support of Maori families in the throes of a SIDS death and during the months that followed it (Tipene Leach et al. 2000b).

In 1996/97, a parallel but independent programme was funded to service SIDS issues in the Pacific community and the Maori and Pacific SIDS Coordinators worked side by side. The Pacific programme, however, was unable to provide dedicated full-time careworkers because the lower SIDS rates in these communities attracted far less funding. The large number of Pacific ethnic groups and their multiple language needs saw the development of a team of part-time Pacific SIDS educators from a number of Pacific communities and a less comprehensive ability to attend to the acute needs of bereaved families.

The close involvement with SIDS families by the care-workers led to an acutely attuned awareness of the context of events around a SIDS death from the perspective of the parents. In the care-workers' assessment, there was a need for better coordination of the agencies that respond to SIDS deaths, and for greater cultural sensitivity in the highly forensic coronial investigation process. They also highlighted the difficult social and economic circumstances of these families (Tipene Leach et al. 2000a).

Recognition of the importance of sound research for effective advocacy led the Maori and Pacific SIDS teams into the New Zealand SIDS Study Group, a multi-centre team investigating the feasibility of a second New Zealand SIDS case control study. This project included a qualitative study of Maori, Pacific and Pakeha infant care practices (Abel et al. 2001) and the development of a set of best practice guidelines for SIDS death scene investigation, including autopsy protocols for infants. In addition, a study of Maori families' experiences of grief following a SIDS death was developed. This included a preliminary protocol that would delineate the likely issues surrounding SIDS families and add a client safety aspect to the interviewing. This involved a single focus group with members of the Maori and Pacific SIDS teams that encompassed a range of topics concerning the impacts of SIDS and its sequelae on parents and families. This paper reports on key outcomes of this latter process.

METHODOLOGICAL APPROACH AND RATIONALE

This study used a standard focus group methodology (Wilkinson 1998) to gather data from the participants. (2) The participants, all women, were drawn from the Maori and the Pacific SIDS programmes: three Maori women and one Pakeha woman from the Maori SIDS prevention programme, and a Tongan woman and a Samoan woman from the Pacific programme. The inclusion of Pacific S1DS workers in a process scoping the situation for Maori families was an effort to approach the topic in a less insular fashion.

The workers from the Maori programme were the most experienced. Two had three years, one had six years and one had more than 10 years of field experience, mostly with the families of Maori babies who died unexpectedly. As such they had been witness to the aftermath of over 100 Maori SIDS deaths and so had an enormous wealth of...