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


Abstract

Sudden Infant Death Syndrome sudden infant death syndrome (SIDS) or crib death, sudden, unexpected, and unexplained death of an apparently healthy infant under one year of age (usually between two weeks and eight months old).  (SIDS SIDS sudden infant death syndrome.

SIDS
abbr.
sudden infant death syndrome


SIDS,
n See syndrome, sudden infant death.
) continues as a significant cause of death of infants, particularly among Maori. While much attention has been focused through biomedical research Biomedical research (or experimental medicine), in general simply known as medical research, is the basic research or applied research conducted to aid the body of knowledge in the field of medicine.  on causation causation

Relation that holds between two temporally simultaneous or successive events when the first event (the cause) brings about the other (the effect). According to David Hume, when we say of two types of object or event that “X causes Y” (e.g.
, 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 fraught  
adj.
1. Filled with a specified element or elements; charged: an incident fraught with danger; an evening fraught with high drama.

2.
 interfaces between families and institutions that follow SIDS. A thematic analysis presents the main issues, and the discussion considers their significance for the grieving grieving Mourning, see there  of the bereaved be·reaved  
adj.
Suffering the loss of a loved one: the bereaved family.

n.
One or those bereaved: The bereaved has entered the church.
 parents, and the social practices of service institutions that deal with SIDS.

INTRODUCTION

In New Zealand New Zealand (zē`lənd), island country (2005 est. pop. 4,035,000), 104,454 sq mi (270,534 sq km), in the S Pacific Ocean, over 1,000 mi (1,600 km) SE of Australia. The capital is Wellington; the largest city and leading port is Auckland. , research on Sudden Infant Death Syndrome (SIDS) has concentrated on the quantitative analysis Quantitative Analysis

A security analysis that uses financial information derived from company annual reports and income statements to evaluate an investment decision.

Notes:
 of data from the New Zealand Cot Death cot death
n. Chiefly British
Sudden infant death syndrome.


cot death
Noun

the unexplained sudden death of a baby while asleep

Noun 1.
 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

Main article: Race and health


Health disparities (also called health inequalities in some countries) refer to gaps in the quality of health and health care across racial, ethnic, and socioeconomic groups.
 (Ajwani et al. 2003).

The grief within these Maori families seemed inextricably in·ex·tri·ca·ble  
adj.
1.
a. So intricate or entangled as to make escape impossible: an inextricable maze; an inextricable web of deceit.

b.
 entwined with the social conditions of the community, and criticism was voiced about the way in which families were dealt with by professional services (job) professional services - A department of a supplier providing consultancy and programming manpower for the supplier's products.  and the lack of support they received. The trauma of post-mortem examination post-mortem examination or autopsy, systematic examination of a cadaver for study or for determining the cause of death. Post-mortems use many methodical procedures to determine the etiology and pathogenesis of diseases, for epidemologic  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 health services Managed care The benefits covered under a health contract  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 throe  
n.
1. A severe pang or spasm of pain, as in childbirth. See Synonyms at pain.

2. throes A condition of agonizing struggle or trouble: a country in the throes of economic collapse.
 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 at·tune  
tr.v. at·tuned, at·tun·ing, at·tunes
1. To bring into a harmonious or responsive relationship: an industry that is not attuned to market demands.

2.
 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 practice guidelines Medical practice A set of recommendations for Pt management that identifies a specific or range of range of management strategies. See Peer review organization, Practice standards. Cf 'Cookbook' medicine.  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 sequelae Clinical medicine The consequences of a particular condition or therapeutic intervention  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 insular /in·su·lar/ (-sdbobr-ler) pertaining to the insula or to an island, as the islands of Langerhans.

in·su·lar
adj.
Of or being an isolated tissue or island of tissue.
 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 knowledge to draw upon.

We regarded these six workers as key informants on the topic of SIDS grief and the complex of pressures and tensions that pervade per·vade  
tr.v. per·vad·ed, per·vad·ing, per·vades
To be present throughout; permeate. See Synonyms at charge.



[Latin perv
 the lives of those who experience the unexplained unexplained
Adjective

strange or unclear because the reason for it is not known

Adj. 1. unexplained - not explained; "accomplished by some unexplained process"
 death of an infant. The agreement of these care-workers to be interviewed allowed the researchers on the subsequent Maori SIDS Grief Study to approach, albeit from a distance, the experience of the bereaved family in an ethical but thoroughly authentic manner.

The data collection was mutually agreed to and arranged by the participants and was facilitated by Dr Louise Webster, a psychiatrist attached to the broader SIDS Research Project. The session itself was conducted in the workplace of the Maori and Pacific SIDS Prevention Programme teams and took the form of an extended group discussion, with Dr Webster putting only the occasional prompt for clarification or continuity. The session was not time limited and ran out at approximately three hours of recorded data. These were transcribed verbatim ver·ba·tim  
adj.
Using exactly the same words; corresponding word for word: a verbatim report of the conversation.

adv.
 and checked with the participants, and so constituted the database for the project.

DATA AND ANALYSIS

The database consists of the audiotape au·di·o·tape  
n.
1. A relatively narrow magnetic tape used to record sound for subsequent playback.

2. A tape recording of sound.

tr.v.
 of the interview and the transcript. A technique called discourse analysis Discourse analysis (DA), or discourse studies, is a general term for a number of approaches to analyzing written, spoken or signed language use.

The objects of discourse analysis—discourse, writing, , conversation, communicative event, etc.
 (Potter and Wetherell 1987, Wetherell et al. 2001) which has evolved within social psychology, was used to evaluate and describe these data. Discourse analysis is based upon multiple, detailed readings of the body of data in order to develop a systematic and comprehensive description of the patterns and variations in the talk on a topic, and the ways in which language is deployed to establish and defend various discursive dis·cur·sive  
adj.
1. Covering a wide field of subjects; rambling.

2. Proceeding to a conclusion through reason rather than intuition.
 positions (McCreanor 1996, McCreanor and Nairn 2002).

This style of analysis evolves through awareness of the interpretative in·ter·pre·ta·tive  
adj.
Variant of interpretive.



in·terpre·ta
 resources drawn upon for the description of the diverse themes that are used in the transcript. Verbatim texts or sections of text that use such themes (at first rather loosely defined) are collated into files. The patterns of ideas, images, linguistic and rhetorical forms are clarified by further intensive reading of the files, allowing the researcher to describe and illustrate the content and function of the themes and their facets (McCreanor and Nairn 2002).

Like other forms of qualitative research Qualitative research

Traditional analysis of firm-specific prospects for future earnings. It may be based on data collected by the analysts, there is no formal quantitative framework used to generate projections.
, discourse analysis operates outside of the protective cloak of objectivity. The selections, interpretations and descriptions the researcher makes in working with data of the kind available here depend upon the sensitivity, experience and orientation of the researcher (Patton 1990, Taylor 2001). The rigour rig·our  
n. Chiefly British
Variant of rigor.


rigour or US rigor
Noun

1.
 and discipline involved are complemented by an openness of reporting, which allows readers to judge for themselves the appropriateness of the descriptions that emerge. Unfortunately, limitations of space mean that only illustrative il·lus·tra·tive  
adj.
Acting or serving as an illustration.



il·lustra·tive·ly adv.

Adj. 1.
 segments of text can be made available in this context, but we note that each of the themes described here was drawn from coded material running to several pages of data.

The five themes presented here are descriptions of participants' talk around the topics they covered in the discussion. Each is a distillation distillation, process used to separate the substances composing a mixture. It involves a change of state, as of liquid to gas, and subsequent condensation. The process was probably first used in the production of intoxicating beverages.  and a collage collage (kəläzh`, kō–) [Fr.,=pasting], technique in art consisting of cutting and pasting natural or manufactured materials to a painted or unpainted surface—hence, a work of art in this medium.  of the actual usages in the data coded from the focus group transcript, and a construction in the sense that participants do not speak the forms or necessarily even the terms of the various outlines. The inclusion of illustrative quotes from the data is intended to give a feel for the natural forms in which the participants represented their ideas.

The Process Around Grieving

Although issues are recognised to be different for care-workers and families, process was seen to be crucial to grief outcomes for those experiencing a SIDS death. For families, the period immediately following the death was one of sensitivity and vulnerability in which experiences were heightened in a nightmare-like fashion, and pressures around incidents were greatly enlarged.
   "I think that working in this job you realise that the point when a
   child dies ... for the family everything suddenly magnifies, it's
   huge and even as a worker you have this ... you know that when you
   go in there you're going to make an impression on this family's life
   forever, they're gonna remember you." (Maori SIDS care-worker)


Participants indicated that in such contexts, a seemingly minor or mundane action or comment was able to take on a profound significance and have enormous impact.

A fundamental need for the bereaved was to be able to set aside the questions and feelings of guilt that attach to unexplained death in order to be able to talk, to weep weep (wep)
1. to shed tears.

2. to ooze serum.
, to express emotion and to let the grief run its course.
   "So sometimes they just need to talk ... it's one of the main things
   ... until you come out with it you know ... well they can feel it I
   suppose ... and they open up and they cry and then I feel good and
   sometimes I cry with them." (Pacific SIDS worker)


To achieve this, supportive partners and family were crucial. SIDS care-workers felt that they provided a more independent and detached support that could also be useful.

In many instances the bereaved expressed to the SIDS care-workers that they felt guilty. The loss for mothers was often described as a physical ache, consistent with the carrying and the bearing of the child, and the physical holding of the infant's body became an important part of coming to terms with the death. Care-workers commented that unreconciled grief was sometimes manifest in behaviour such as fixation fixation: see psychoanalysis.  on the dead child's clothes or bedding, talking as if the baby was still alive, or carrying items related to the baby. The sense of loss and of the baby as a person in its own right frequently persisted in the long term. Although well-meaning family, friends and often partners might see it as such, the idea of "replacement" of the baby with another child was not immediately comforting.

SIDS care-workers were committed to facilitating normal, healthy grieving in this inherently abnormal situation, often acting as a buffer between the family and various institutions. Following the leads of the bereaved, they at one time both support the family and encourage an appropriate grieving process.
   "As workers we want to stop the hurt, we don't want to hinder their
   grief process and all that other stuff, psychological gobbledegook
   as D said once, we just wanna help and we just wanna stop the hurt."
   (Maori SIDS care-worker)


This involves the workers in listening to the family and answering questions as fully and openly as possible. There was often a need to alleviate the sense of guilt that could distract the bereaved from grieving. Working in groups and teams offered the possibility of matching workers and the bereaved families, thereby improving communication and supporting the facilitation Facilitation

The process of providing a market for a security. Normally, this refers to bids and offers made for large blocks of securities, such as those traded by institutions.
 of the process.

The Cultural Context

The cultural context in which SIDS occurs had diverse positive and negative impacts on grieving processes for bereaved families. For example, extended Maori and Pacific family offered resources, the support of relatives and elders, culturally focused explanations and might even lay blame for the death.
   "It's like the Pacific culture and Maori culture, we believe that
   things that we do in the past come back to haunt you by way of your
   children, or otherwise ... and I don't not believe that, as
   westernised or colonised as I am, I don't not believe that that
   there are things that come back from the past and events like this
   when you have unexplained deaths ... these are just classic avenues
   when you can start to place some of the outcomes of your actions in
   the past, it happens ... we call it mate Maori." (Maori SIDS
   care-worker)


Such close-knit family structures could facilitate the spread of rumour and distortion, but could also provide access to power hierarchies, laying speculation to rest. This contrast was illustrated when culture was described both as a storehouse of remembered feud feud, formalized private warfare, especially between family groups. The blood feud (see vendetta) is characteristic of those societies in which central government either has not arisen or has decayed.  and curse, and a source of atonement atonement, the reconciliation, or "at-one-ment," of sinful humanity with God. In Judaism both the Bible and rabbinical thought reflect the belief that God's chosen people must be pure to remain in communion with God.  and defusing de·fuse  
tr.v. de·fused, de·fus·ing, de·fus·es
1. To remove the fuse from (an explosive device).

2. To make less dangerous, tense, or hostile:
 of tensions.

In culturally mixed marriages the already complex situation was intensified with many new sources of misunderstanding, from simple language barriers to differing cultural practices, which emerge to interfere with healthy grieving processes.
   "And it was like when you make your bed you lie in it. Any problems
   arise from this union we will forever remind you. So a baby's death
   from that kind of union you see, I told you not to marry that
   Samoan. And what would the Samoans say? I suppose you shouldn't have
   married the Cook Islander." (Pacific SIDS worker)


Interlocking interlocking /in·ter·lock·ing/ (-lok´ing) closely joined, as by hooks or dovetails; locking into one another.
interlocking Obstetrics A rare complication of vaginal delivery of twins; the 1st
 socio-economic dimensions also had a major impact. Poverty might entail anything from substandard substandard,
adj below an acceptable level of performance.
 dwellings, to the shame of being unable to afford funeral costs.

Police Actions

The behaviour of the police was identified as a major influence on outcomes for families dealing with SIDS. The police were involved because SIDS--by definition unexplained death--inevitably required a police response. Because they were among the first to respond to the situation, they tended to arrive when turmoil and distress were very high for the bereaved. The care-workers said that unless the police behaved with exceptional sensitivity, there were many points at which their activities could have a profound negative impact. They were always in danger of being seen as blaming or judgemental, so over-reaction to the call-out, pursuing peripheral or irrelevant inquiries on the scene and explaining the need for autopsy in terms of implied guilt on the part of parents were examples of behaviours that needed to be avoided. (3)
   "In one instance, the police went in and said to the family--in no
   way related to the death of the baby--but said to the father, 'Well
   how long have you been in a gang?' And the father was dealing with
   the shock of his child having died and then the shock of his child
   being taken from the house. He said to the police, 'What has that
   got, what has that got to do with anything?' [The police officer]
   said, 'Because we want to know, we want to know sonny'." (Maori SIDS
   care-worker)


The care-workers found that the particular vulnerability of the bereaved at this stage of grief meant that seemingly minor inputs could be devastating dev·as·tate  
tr.v. dev·as·tat·ed, dev·as·tat·ing, dev·as·tates
1. To lay waste; destroy.

2. To overwhelm; confound; stun: was devastated by the rude remark.
 and leave ongoing or unresolved issues with parents for the rest of their lives. Responding police officers needed to be mature and aware of the cultural and psychological aspects of the situation. However, in the SIDS care-workers' experience, many officers did not have these qualities (some young officers were described as "terrified ter·ri·fy  
tr.v. ter·ri·fied, ter·ri·fy·ing, ter·ri·fies
1. To fill with terror; make deeply afraid. See Synonyms at frighten.

2. To menace or threaten; intimidate.
") and they were unable to deal adequately with the situations they faced in cot death cases.
   "By not sending older police officers [we get] a lot of comments
   from the families that he or she was a young police officer ...
   there aren't any Maori police officers around are there you know ...
   I just remembered [an example] where the family asked about an
   autopsy and that and the officer said--it's so we know that you
   didn't poison your baby ... and you know those kind of comments
   stick in their heads ... Oh my God they think I poisoned my baby."
   (Maori SIDS care-worker)


In this highly charged context, the care-workers found that the responding police officer could either ameliorate a·mel·io·rate  
tr. & intr.v. a·me·lio·rat·ed, a·me·lio·rat·ing, a·me·lio·rates
To make or become better; improve. See Synonyms at improve.



[Alteration of meliorate.
 the difficulties or worsen wors·en  
tr. & intr.v. wors·ened, wors·en·ing, wors·ens
To make or become worse.


worsen
Verb

to make or become worse

worsening adjn
 them. One very positive example was given of an officer who offered simple and genuine support as he carried out his investigations. His task may have been made easier by the content of his message, which settled the cause of death as accidental.

The Post-Mortem

The process of autopsy is of great significance and impact and it can be either constructive or destructive. While it is true that the autopsy findings can be a relief to families, the uncertainty, alongside the unfamiliarity and unpleasantness of the forensic protocols, can cause extreme distress.
   "Yeah I think that a lot of people question why does my baby have to
   have an autopsy but I think when they don't know and they are given
   information like they can actually determine why baby passed away,
   it starts to clear a little bit ... the fear is more how baby will
   come back from the post-mortem." (Maori SIDS care-worker)


This is particularly so for Maori where remaining with the body at all times is central to the protocol of tangi tangi
Noun

NZ

1. a Maori funeral ceremony

2. Informal a lamentation
 (funeral). The mandatory removal of the body (sometimes without appropriate ceremony or respect) for an undefined period to unfamiliar premises for unknown practices to be carried out to establish cause of death is extremely difficult. Care-workers have recommended a system where better contact with the body could be maintained and better liaison established between families and authorities involved in the autopsy.

Poor process on the part of officials could be disastrous, resulting in perceptions such as the autopsy being about establishing parental guilt. Good process, on the other hand, made the outcomes valuable for families by dispelling fear and uncertainty, thereby facilitating the grieving process.
   "There is one thing that have noticed with some of the families that
   I have supported that if there is an inquest hanging over this
   baby's death ... often families are not given a date of when the
   actual inquest is going to be ... there is not very much description
   of what [post-mortem] really is and the process and prolonged fear
   of being found guilty has a big impact I think." (Maori SIDS
   care-worker)


Fathers

The role and experience of men in SIDS cases prompted many questions from these female SIDS care-workers. While they felt that they could reach bereaved women, men presented an enormous problems. The gender difference meant that men often behaved in ways that were hard for loved ones loved ones nplseres mpl queridos

loved ones nplproches mpl et amis chers

loved ones love npl
 to understand, negative for families and sometimes self-destructive. In particular, the younger, less mature fathers who had less power, status, financial security and self-worth, and fewer life skills, had limited capacity to provide for the family in this demanding situation. The problems for such bereaved fathers were often complicated by involvement with drugs and alcohol, and with attendant violence, crime and sometimes imprisonment Imprisonment
See also Isolation.

Alcatraz Island

former federal maximum security penitentiary, near San Francisco; “escapeproof.” [Am. Hist.: Flexner, 218]

Altmark, the

German prison ship in World War II. [Br. Hist.
.
   "You get them drinking, not able to deal with anger, expressing
   their grief by beating up their wife." (Pacific SIDS worker)


Such difficulties aside, men were perceived to have very different styles of grieving from women, and diverse patterns were also observed within the gender.
   "A society it has certain expectations of male and female roles and
   from my experience it's been that the father is just as lost as the
   mum but trying very much to have the stiff upper lip and kind of
   look after and take care of business." (Maori SIDS care-worker)


Men were seen to have difficulty in expressing their feelings and experiences, which they internalised. The resultant turmoil emerged as anger or violence (sometimes directed at their partner or family), stoic pragmatism pragmatism (prăg`mətĭzəm), method of philosophy in which the truth of a proposition is measured by its correspondence with experimental results and by its practical outcome.  (for example, supporting their partner, caring for the children but not dealing with their own pain), bewildered questioning of their role in the death, or combinations of the above.

These behaviours were seen to arise from male socialisation, social expectations, an alienation from mother and child (not having "carried the baby") and lack of supportive networks.
   "I find that if my dad or my uncle comes with me the men relax
   because there is a male that they can talk to and the connections
   happen ... they may know my family or they may have been to school
   with one of their kids or they went to the freezing works together
   ... and that starts to work and where my dad or my uncle can sit
   there and talk with the men, if that's what the men want to do ...
   and normally my dad will get out information that I know I wouldn't
   be able to." (Maori SIDS care-worker)


It seems that having male SIDS care-workers makes a crucial difference to outcomes for men, a fact that our informants (all women) were at a loss to explain beyond assertions that men needed to develop their own awareness as to exactly what would be most useful for them. This resulted in a challenge to men working in the area to focus on developing strategies to fill the gap.

DISCUSSION

As SIDS care-workers in a mainly Maori context, the participants in this study present a particular set of viewpoints. They spoke from the perspective of those whose primary responsibilities lie with the bereaved family. They spoke, as it were, for the family; they were their advocates. They did not, for example, speak as priests, police, coroners or ambulance staff, but rather, about them and their behaviour in this particular context.

The commonalities of experiences and issues faced by this group of SIDS care-workers, and by implication, SIDS families, have been revealed. This new body of "legitimised knowledge" has greatly informed the practices and policies of the Maori SIDS Prevention team in its responses to families in the field, in the nature and direction of its national advocacy with other occupational groups involved in the death scene and in the training programmes it provides for other health workers. The information has also been made available to SIDS parents, thereby reducing the sense of isolation and distress that arises for a family feeling that they alone have endured the despair and chaos of the SIDS death.

The main themes discussed were extremely useful in the stated objective of informing the subsequent in-depth qualitative Maori SIDS Grief Study (Edwards et al. in press). Maori researchers without field experience in SIDS were able, by these insights, to approach highly sensitive Adj. 1. highly sensitive - readily affected by various agents; "a highly sensitive explosive is easily exploded by a shock"; "a sensitive colloid is readily coagulated"  areas with some degree of sensitivity and safety. In addition, the ongoing analyses in the Maori SIDS Grief Study (Clarke et al. forthcoming), have been strongly shaped by the insights generated from the analyses reported in this exploratory project. However, in the context of the skeletal skeletal /skel·e·tal/ (skel´e-t'l) pertaining to the skeleton.

skeletal

pertaining to the skeleton. See also skeletal muscle.
 nature of study, the small size and spread of the sample of informants and the limitation of the topic to "grief in SIDS", the findings call for further research into discourses on the topic.

The five themes by no means exhaustively cover the diversity and complexity of the topic being explored. In part this is because a generalising, reductionist re·duc·tion·ism  
n.
An attempt or tendency to explain a complex set of facts, entities, phenomena, or structures by another, simpler set: "For the last 400 years science has advanced by reductionism ...
 approach drives this stage of discourse analysis. Later stages can use findings such as these as aids to analysis of further examples of text on the topic, highlighting the variations and distinctions that are gathered together in the search for pattern here. Although mindful mind·ful  
adj.
Attentive; heedful: always mindful of family responsibilities. See Synonyms at careful.



mind
 of these limitations, we suggest that for the data available, the themes described amount to a significant proportion of the discursive resources available for talk on the topic of grieving in SIDS. We argue that they raise important issues on a number of different levels, within the broad concern about grieving the loss of a baby to SIDS.

At the human level of the needs of the bereaved parents, the findings assert the value of supportive families in facilitating and encompassing the extreme emotion and behaviour that comes with this form of loss. In the absence of such support, and in acknowledgement of the overwhelming disempowerment engendered by the forensic process, the data strongly endorse the importance of outside support of the kind provided by the Maori SIDS care-workers.

There are other striking features, such as the inability of many fathers to cope with the loss of a baby to SIDS, as illustrated by their physical or emotional absence. It is also clear that guilt in its many and diverse forms plays a central role in the unwinding of people's grief at the death of a baby.

In cultural terms our participants repeatedly emphasised the different ways of coping they had observed in different cultural groups and argued the need to allow and develop these culturally appropriate expressions. The stark reality is that these differences are manifested as the tangi collides with the post-mortem, and the needs of crime detection challenge the practices of awhi and manaakitanga (cherishing and kindness).

Finally, this small study has implications for the institutional and statutory processes and functionaries who impact upon the grief that attends a SIDS death. The participants identified that the agendas, protocols and practices of the external agencies are frequently ad hoc For this purpose. Meaning "to this" in Latin, it refers to dealing with special situations as they occur rather than functions that are repeated on a regular basis. See ad hoc query and ad hoc mode. , rigid, callous cal·lous
adj.
Of, relating to, or characteristic of a callus or callosity.



callous

of the nature of a callus; hard.
, suspicious and blaming. When carried out by personnel with inadequate training, sensitivity or caring, the added distress was seen to impact on the grieving processes of the bereaved in the years that followed. In that they represent at least one side of several significant issues that relate to a sensitive death scene environment, these themes could usefully facilitate dialogue with various agencies and authorities in order to improve practice and service.

More extensive enquiry would doubtless reveal diverse new dimensions not raised here. Nevertheless we note that this small exploratory study, in utilising the qualitative focus group methodology and a discourse analysis, has provided useful insights into this distressing phenomenon, forewarned the Maori SIDS Grief Study researchers of substantive issues to be faced, highlighted new and marginalised knowledge from a hitherto little acknowledged group of workers, and lent credibility to the discounted experiential ex·pe·ri·en·tial  
adj.
Relating to or derived from experience.



ex·peri·en
 understandings available from parents. Such work is at once a way of understanding existing practices and of searching out or foregrounding Noun 1. foregrounding - the execution of a program that preempts the use of the processing system
foreground processing

priority processing - data processing in which the operations performed are determined by a system of priorities
 possible improvements, not only in relation to grief, but also to our knowledge of the SIDS phenomenon as a whole.

(1) Correspondence Tim McCreanor, email: t.n.mccreanor@massey.ac.nz

(2) Focus groups are an increasingly utilised data-gathering method in the social sciences and are widely used in the area of health research (Carey 1995). They are a recommended tool for exploratory research Exploratory research is a type of research conducted because a problem has not been clearly defined. Exploratory research helps determine the best research design, data collection method and selection of subjects.  for scoping new research areas, and for providing richness and depth to such investigations (Wilkinson 1998) and are therefore particularly appropriate to this study. They are especially valuable to social action research for the grounding of projects in participants' experience, giving voice to otherwise marginalised knowledge (Fine 1992) and promoting social change (Johnstone 1996).

(3) The Police have since developed a partnership protocol "Mate Tarawhare", which includes a set of operational procedures The detailed methods by which headquarters and units carry out their operational tasks.  for dealing with all deaths of tangata whenua tangata whenua
Noun, pl

NZ

1. the original Polynesian settlers in New Zealand

2. descendents of the original Polynesian settlers [Maori: people of the land]
.

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Ajwani S., T. Blakely, B. Robson, M. Tobias and M. Bonne n. 1. A female servant charged with the care of a young child.  (2003) Decades of Disparity: Ethnic Mortality Trends in New Zealand 1980-1999, Ministry of Health and University of Otago The University of Otago (Māori: Te Whare Wānanga o Otāgo) in Dunedin is New Zealand's oldest university with over 20,000 students enrolled during 2006. , Wellington.

Carey, Martha Ann (ed.) (1995) Issues and Applications of Focus Groups, Special Issue Qualitative Health Research, 5(4).

Clarke, E., T. McCreanor and R. Haretuku (forthcoming) The Maori SIDS Grief Study, Tomaiora, University of Auckland Not to be confused with Auckland University of Technology.
The University of Auckland (Māori: Te Whare Wānanga o Tāmaki Makaurau) is New Zealand's largest university.
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Fine, M. (1992) "Passion, power and politics: Feminist research possibilities" in M. Fine (ed.) Disruptive Voices: The Possibilities of Feminist Research, University of Michigan (body, education) University of Michigan - A large cosmopolitan university in the Midwest USA. Over 50000 students are enrolled at the University of Michigan's three campuses. The students come from 50 states and over 100 foreign countries.  Press, Ann Arbor Ann Arbor, city (1990 pop. 109,592), seat of Washtenaw co., S Mich., on the Huron River; inc. 1851. It is a research and educational center, with a large number of government and industrial research and development firms, many in high-technology fields such as .

Johnstone, A. (1996) "'It's good to talk': The focus group and the sociological imagination Sociological imagination is a sociological term coined by American sociologist C. Wright Mills in 1959 describing the ability to connect seemingly impersonal and remote historical forces to the incidents of an individual’s life. " Sociological Review, 44(3):517-538.

McCreanor, T. (1996) "'Why strengthen the city wall when the enemy has poisoned the well?': An assay of anti-homosexual discourse in New Zealand" Journal of Homosexuality The Journal of Homosexuality (ISSN 0091-8369) is a long-standing peer-reviewed academic journal (founding editor Charles Silverstein) published by The Haworth Press, Inc., in New York. , 31(4):75-106.

McCreanor, T. and R. Nairn (2002) "Tauiwi general practitioners' explanations of Maori health: Colonial relations in primary healthcare in Aotearoa / New Zealand?" Journal of Health Psychology, 7(5):509-518.

Mitchell, E.A. (1990) "International trends in post-neonatal mortality" Archives of Disease in Childhood, 65:607-9.

Mitchell, E.A., J.M. Brunt brunt  
n.
1. The main impact or force, as of an attack.

2. The main burden: bore the brunt of the household chores.
 and C. Everard (1994) "Reduction in mortality from sudden infant death syndrome in New Zealand: 1986-92" Archives of Disease in Childhood, 70:291-4.

New Zealand Health Information Service (2004) Fetal and Infant Deaths Noun 1. infant death - sudden and unexpected death of an apparently healthy infant during sleep
cot death, crib death, SIDS, sudden infant death syndrome
 2000, Ministry of Health, Wellington.

Patton, M.Q. (1990) Qualitative Evaluation and Research Methods, 2nd edition, Sage Publications This article or section needs sources or references that appear in reliable, third-party publications. Alone, primary sources and sources affiliated with the subject of this article are not sufficient for an accurate encyclopedia article. , Newbury Park, California The community of Newbury Park, California is located in the western portion of the City of Thousand Oaks and Casa Conejo, an unincorporated area of southern Ventura County. .

Potter, J. and M. Wetherell (1987) Discourse and Social Psychology, Sage, London.

Taylor, S. (2001) "Locating and conducting discourse analytic research" in M. Wetherell, S. Taylor and S.J. Yates (eds.) Discourse as Data: A Guide for Analysis, Sage, London.

Tipene Leach, D., S. Abel, C. Everard and R. Haretuku (2000a) "Reorienting family services: The professional response to sudden unexpected deaths in infancy--issues and protocols" Social Policy Journal of New Zealand, 15:27-40.

Tipene Leach, D., S. Abel, R. Haretuku and C. Everard (2000b) "The Maori SIDS Prevention Programme: Challenges and implications for Maori health service development" Social Policy Journal of New Zealand, 14:65-77.

Wetherell, M., S. Taylor and S.J. Yates (eds.) (2001) Discourse as Data: A Guide for Analysis, Sage, London.

Wilkinson, S. (1998) "Focus group methodology: A review" International Journal of Social Research Methodology, 1(3):181-203.

Tim McCreanor Whariki Research Group Massey University Massey University (Māori: Te Kunenga ki Purehuroa) is New Zealand's largest university with approximately 40,000 students. It has campuses in Palmerston North (sites at Turitea and Hokowhitu), Wellington (in the suburb of Mt Cook) and , Auckland (1)

(1) Correspondence Tim McCreanor, email: t.n.mccreanor@massey.ac.nz
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Title Annotation:Sudden Infant Death Syndrome
Author:Abel, Sally
Publication:Social Policy Journal of New Zealand
Geographic Code:8NEWZ
Date:Dec 1, 2004
Words:5175
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