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THE MAORI SIDS PREVENTION PROGRAMME: CHALLENGES AND IMPLICATIONS FOR MAORI HEALTH SERVICE DEVELOPMENT.


INTRODUCTION

In the early 1980s 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.  had a higher rate of 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.
) than other comparable Western countries, with no evidence of decline (Mitchell 1990). This prompted the development of a three-year national 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 that was conducted between 1987 and 1990. The study identified a number of risk factors, some considered modifiable and others non-modifiable (Mitchell et al. 1991). The modifiable factors became the basis of a prevention effort, and informal dissemination dissemination Medtalk The spread of a pernicious process–eg, CA, acute infection Oncology Metastasis, see there  of one of the prevention messages began as early as 1989.

The SIDS prevention effort culminated in the Ministry of Health national SIDS prevention campaign of 1991, the first of its kind internationally. This campaign comprised widespread and intensive media publicity of three main modifiable risk factors: prone sleeping, smoking and not breastfeeding (Mitchell, Aley et al. 1992). In 1992 another risk factor was added to the profile: bedsharing (Mitchell, Taylor et al. 1992), although this was later to be reclassified as a significant risk only if accompanied by smoking (Scragg et al. 1993).

Following the campaign, non-Maori SIDS rates decreased significantly, but Maori SIDS rates decreased minimally by comparison. Although there was some controversy about definitions of Maori ethnicity ethnicity Vox populi Racial status–ie, African American, Asian, Caucasian, Hispanic , between 1986 and 1992 non-Maori SIDS rates decreased from 3.6 to 1.6 per 1000 live births, while Maori rates only decreased from 7.4 to 6.9 per 1000 live births (Mitchell et al. 1994). Maori comprised a significant proportion of SIDS deaths and, with the greater reduction in non-Maori rates, this proportion increased.

In response to this situation, in 1994 a team based in the 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.
 School of Medicine received funding to initiate the Maori SIDS Prevention Programme. This paper traces the development of this programme to date. It discusses the issues it has faced and the immplications of these issues both for its own programme development and for Maori health service development in general. We begin with a brief overview of the context of social and health service changes within which the programme developed. This is followed by a description of the development of the programme, in terms of both contractual arrangements and interventions. We go on to discuss the key challenges faced by the programme, with particular regard to the changing health service structures and the differing demands of the health purchaser and the Maori community. Possible future directions for the programme and its workforce are then considered, and this is followed by a concluding section discussing the implications of the issues raised for Maori health service and workforce development.

THE CONTEXT OF CHANGE

The Maori SIDS Prevention Programme was established and developed during a period of considerable change within the economy and the public sector. Radical changes to economic and public policy, begun by the Labour government in 1984, were continued and extended by the National government from 1990. These reforms were based on a philosophy of neo-liberalism that promoted a free market economy and an ideology of individual responsibility, thus diminishing the influence of the state on the economy and social policy (Peters 1993). Amongst the many social service changes brought about by the new policies were reduced state spending on welfare benefits and the introduction of market-based rentals for state housing. Throughout the period of these policies, the social and economic gaps between Maori and non-Maori did not close as hoped, but rather increased in many areas measured (Te Puni Kokiri 1998).

Under the Health and Disability Services Act 1993, major restructuring restructuring - The transformation from one representation form to another at the same relative abstraction level, while preserving the subject system's external behaviour (functionality and semantics).  of the health system also occurred, introducing a health services health services Managed care The benefits covered under a health contract  purchaser/provider split, four Regional Health Authorities (RHAs) and a Public Health Commission (PHC PHC Primary health care, see there ). In January 1996 the PHC, which held primary responsibility for purchasing public health, was disbanded and the RHAs took over responsibility for all health service contracts. In mid-1997 the four RHAs were amalgamated a·mal·ga·mate  
v. a·mal·ga·mat·ed, a·mal·ga·mat·ing, a·mal·ga·mates

v.tr.
1. To combine into a unified or integrated whole; unite. See Synonyms at mix.

2.
 into a single Transitional Health Authority that was later renamed the Health Funding Authority The Health Funding Authority was a now defunct New Zealand government entity responsible for funding of public health care in New Zealand between 1997-2001. It was formed from the merger of the four Regional Health Authorities (RHAs) as part of the coalition agreement between the  (HFA HFA Harvard Film Archive (Harvard University)
HFA Harry Fox Agency, Inc.
HFA Housing Finance Agency (District of Columbia government)
HFA Hyogo Framework for Action
HFA High-Functioning Autism
). In 1996 maternity MATERNITY. The state or condition of a mother.
     2. It is either legitimate or natural. The former is the condition of the mother who has given birth to legitimate children, while the latter is the condition of her who has given birth to illegitimate children.
 services funding changed from an open-ended fee-for-service to a capped budget-holding model (Abel 1997), and some reductions in well child services occurred (Sinclair 1997).

THE DEVELOPMENT OF THE MAORI SIDS PREVENTION PROGRAMME

The Maori SIDS Prevention Programme began in 1994 as a national contract with the Public Health Commission, supporting a national coordinator and a programme to prevent SIDS in Maori communities. Prior national SIDS prevention efforts had been criticised for not adequately involving the Maori community and key Maori health workers in the development and dissemination of its prevention messages. Although it was clear that Maori had heard the prevention messages, in that Maori babies were subsequently turned to the back sleeping position in great numbers (Tuohy and Griffiths 1996), the "hard to do" changes to do with cigarette smoking and breastfeeding were never "owned" by Maori (Tipene-Leach et al. 1999). The credibility of the national programme was further challenged with the addition in 1992 of the anti-bedsharing message. Infant bedsharing is perceived by Maori to be a valued practice and the blanket warning against the practice by Pakeha health professionals was not well received (Tipene-Leach et al. 1999).

The Maori SIDS Prevention Programme appointed as national coordinator a Maori woman with a strong background in community development. Informal team members were a Maori public health specialist (later to become director) and the Pakeha coordinator of the New Zealand Cot Death Study.

The initial focus of the programme was on the culturally appropriate dissemination of SIDS prevention information. Throughout 1994 and 1995 the team toured the country visiting numerous marae marae
Noun

NZ

1. an enclosed space in front of a Maori meeting house

2. a Maori meeting house and its buildings [Maori]
 to disseminate dis·sem·i·nate  
v. dis·sem·i·nat·ed, dis·sem·i·nat·ing, dis·sem·i·nates

v.tr.
1. To scatter widely, as in sowing seed.

2.
 information to Maori communities about SIDS prevention and to consult about their experiences of SIDS and related infant care and health services issues. In addition, many hui were held with community health providers and other community bodies.

During the tour, strong criticism was voiced about the way in which these (Maori) SIDS 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 cultural 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 criticism. The grief within these communities about the death of babies from SIDS 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.
 intertwined with the effects of post-colonial poverty on the health and well-being of the Maori community as a whole. These factors were to have an influence on programme direction.

In 1996 a Maori SIDS prevention information pack was developed and disseminated disseminated /dis·sem·i·nat·ed/ (-sem´i-nat?ed) scattered; distributed over a considerable area.

dis·sem·i·nat·ed
adj.
Spread over a large area of a body, a tissue, or an organ.
. In recognition of the complaints heard, it included information about optimum service delivery when a SIDS death occurred. In addition, a media campaign was run on national television, Aotearoa Television Network and the Maori radio network. In order to ensure the ongoing development of the Maori SIDS prevention message and reinforce the environment for behaviour change in a more focussed way, it became clear that there was a need for regional coordinators (RCs). In 1996 the national team negotiated three regional coordinator contracts with two RHAs to cover Northland north·land also North·land  
n.
A region in the north of a country or an area.



northland
, South Auckland South Auckland is an area of Auckland, New Zealand characterised in the popular mind as a socio-economically below-average, and sometimes rough, urban area with a relatively large Polynesian and Māori population.  and the South Island. More recently, in 1998 and 1999 two further contracts were obtained for positions in the Midlands and Central regions. These separate RC contracts were linked via the national team.

The RCs were Maori women appointed because of their strong networks within their iwi and the ability to network well with local health services. They aimed to promote infant wellness by building on their community's beliefs and behaviours, and by working the SIDS prevention messages into local infant care practices at every opportunity. They also networked with other child health providers and with tribal authorities to provide training and other resources to community health workers (CHWs), midwives, Plunket nurses and others involved with pregnant Maori women and parents and other caregivers of young babies in their regions.

In imparting im·part  
tr.v. im·part·ed, im·part·ing, im·parts
1. To grant a share of; bestow: impart a subtle flavor; impart some advice.

2.
 the risk-factor messages, the aim was to be as sensitive and appropriate as possible. For example, in recognition that smoking cessation smoking cessation Public health Temporary or permanent halting of habitual cigarette smoking; withdrawal therapies–eg, hypnosis, psychotherapy, group counseling, exposing smokers to Pts with terminal lung CA and nicotine chewing gum are often ineffective.  was very difficult for those living in stressful and deprived environments, it was decided to start with manageable objectives. The initial focus of the message, therefore, became the creation of smoke-free environments for babies. The later connection of bedsharing with cigarette smoking became an extremely delicate issue and was dealt with at a personal and whanau level by the workers, within a relationship of respect and trust.

The Maori SIDS Prevention Programme's national and first regional contracts were funded from ring-fenced public health money and the contract outputs were related to SIDS prevention only. The intimacy of the contact between Maori SIDS families and the Maori team, however, made it clear that it was not possible to work effectively unless the grief and disarray dis·ar·ray  
n.
1. A state of disorder; confusion.

2. Disorderly dress.

tr.v. dis·ar·rayed, dis·ar·ray·ing, dis·ar·rays
1. To throw into confusion; upset.

2. To undress.
 experienced by the whanau was also dealt with. The team, therefore, extended its role to include this support. Working in conjunction with SIDS parent groups and other CHWs, they provided case-by-case support for these families.

Involvement of the Maori teams with families led to a deeper understanding of the context of and events leading up to the baby's death from the perspective of the parents. It provided valuable information for the development of appropriate strategic decisions in the programme, particularly how the prevention messages might be more effectively conveyed. Nevertheless, this support work was not formally acknowledged in these contracts. The last two regional contracts did, however, include personal health monies and acknowledged this support role for SIDS families.

The team's marae consultation and the RCs' involvement in individual case support resulted in a growing awareness of the inadequacies of the services and processes parents and whanau encountered following a SIDS death. Investigation was often made more traumatic for the families as the process involved a disparate collection of poorly coordinated agencies without a common objective. In addition, information collected and collated by the team began to suggest that the majority of Maori SIDS cases were occurring within families who were overwhelmed o·ver·whelm  
tr.v. o·ver·whelmed, o·ver·whelm·ing, o·ver·whelms
1. To surge over and submerge; engulf: waves overwhelming the rocky shoreline.

2.
a.
 by a wide range of difficult social and economic circumstances, such as poor housing, unemployment and poverty.

With the shift in SIDS demography demography (dĭmŏg`rəfē), science of human population. Demography represents a fundamental approach to the understanding of human society.  in the 1990s to the (Maori) family beset be·set  
tr.v. be·set, be·set·ting, be·sets
1. To attack from all sides.

2. To trouble persistently; harass. See Synonyms at attack.

3.
 by considerable social and economic difficulty and deprivation DEPRIVATION, ecclesiastical Punishment. A censure by which a clergyman is deprived of his parsonage, vicarage, or other ecclesiastical promotion or dignity. Vide Ayliffe's Parerg. 206; 1 Bl. Com. 393. , the need for care in the investigation and support processes became particularly important. Furthermore, the discovery of the death of a previously healthy baby in a family living in poor conditions, especially if there was previous involvement with the justice and/or social welfare systems, tended to result in the Police investigation having a more forensic than medical emphasis, looking (although not saying so) for evidence of non-accidental injury.

In 1998 the team began working toward improving death scene investigations by advocating for a coordinated multidisciplinary approach multidisciplinary approach A term referring to the philosophy of converging multiple specialties and/or technologies to establish a diagnosis or effect a therapy  to SIDS families involving health professionals and other related agency workers in what became known as the regional SUDI (Sudden 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) teams. They also began advocating for a medical focus in the death scene investigation to balance the prevailing forensic emphasis, developing death scene protocols to ensure intersectoral collaboration and consistency of practice, and ensuring accurate and appropriate data collection for the Coroner coroner (kôr`ənər), judicial officer responsible for investigating deaths occurring through violence or under suspicious circumstances. The office has been traced to the late 12th cent. .

The intention was to create an informed and consistent medico-legal environment within which strong and appropriate support was available to the grieving grieving Mourning, see there  families.

As the programme developed with the formalised Adj. 1. formalised - concerned with or characterized by rigorous adherence to recognized forms (especially in religion or art); "highly formalized plays like `Waiting for Godot'"
formalistic, formalized
 extension of the RCs' role into case work, the need for an integrated information system arose. This facilitated follow-up support of individual families. The SIDS team was also keen to ensure the recording of data that accurately represented their clients. Their experience had suggested that previously Maori had been underrepresented un·der·rep·re·sent·ed  
adj.
Insufficiently or inadequately represented: the underrepresented minority groups, ignored by the government. 
 in official SIDS statistics because of inconsistencies and errors in ethnicity classification and this development provided an opportunity to explore this issue thoroughly. Lastly, the database was considered important in that it might enable identification of trends useful for strategic planning Strategic planning is an organization's process of defining its strategy, or direction, and making decisions on allocating its resources to pursue this strategy, including its capital and people. .

The information, which was processed by the national team, came from three sources: anecdotal anecdotal /an·ec·do·tal/ (an?ek-do´t'l) based on case histories rather than on controlled clinical trials.
anecdotal adjective Unsubstantiated; occurring as single or isolated event.
 information from the RCs' hands-on involvement in the follow-up of SIDS in their communities; Coroners involved in SIDS cases, with whom the team had an official arrangement regarding information; and the New Zealand Health Information Service (NZHIS NZHIS New Zealand Health Information Service ). The team had negotiated access to NZHIS SIDS notifications and these were used as a retrospective quality control to assess their pick-up rate of Maori SIDS cases.

It was decided to amalgamate community-collected data to create a SIDS register. This was later merged with the NZHIS data with the aim of creating a post-neonatal infant mortality (hardware) infant mortality - It is common lore among hackers (and in the electronics industry at large) that the chances of sudden hardware failure drop off exponentially with a machine's time since first use (that is, until the relatively distant time at which enough mechanical  register, which included all SIDS cases. The long-term aim was to enable the adequate collection of appropriate data for accurate diagnostic purposes and later child mortality review. It was hoped that, following diagnostic clarification and improvements in information systems, the infant mortality register, in conjunction with improvements in service delivery, would enhance knowledge about SIDS deaths and feed essential information into prevention work.

Comparing the official SIDS data with that obtained by the RCs, who had direct and personal involvement with the families, confirmed that the official data were not standardised Adj. 1. standardised - brought into conformity with a standard; "standardized education"
standardized

standard - conforming to or constituting a standard of measurement or value; or of the usual or regularized or accepted kind; "windows of standard width";
 or consistent, were often inaccurate and usually incomplete. These data, collected by frontline front·line also front line  
n.
1. A front or boundary, especially one between military, political, or ideological positions.

2. Basketball See frontcourt.

3. Football The linemen of a team.
 police officers called to the death scene, often omitted important information on the baby's birth and health history and there was no evidence of a contextual understanding of SIDS deaths. To rectify rec·ti·fy
v.
1. To set right; correct.

2. To refine or purify, especially by distillation.
 data discrepancies and service inadequacies, the team initiated the development of consistent national standards for data collection. The SUDI teams were to ensure that the data be used regionally for child mortality review and nationally to inform policy on child mortality.

The RCs have played a major role in promoting the national standards for the acute response to a SIDS death and death scene data collection. They have also assisted with the development of the SUDI teams by networking the various agencies. Their role, therefore, extended beyond prevention and support work within the community to advocacy and coordination at the institutional level. Their role has been a holistic Holistic
A practice of medicine that focuses on the whole patient, and addresses the social, emotional, and spiritual needs of a patient as well as their physical treatment.

Mentioned in: Aromatherapy, Stress Reduction, Traditional Chinese Medicine
 one, encompassing a wide range of tasks that aimed to empower empower verb To encourage or provide a person with the means or information to become involved in solving his/her own problems  Maori communities. This extension and diversification Diversification

A risk management technique that mixes a wide variety of investments within a portfolio. It is designed to minimize the impact of any one security on overall portfolio performance.

Notes:
Diversification is possibly the greatest way to reduce the risk.
 of roles was enabled by their relative autonomy and the team's commitment to finding Maori solutions to Maori issues. Unlike the generic Maori community health workers whose primary role was supporting mainstream professionals and services, the RCs were trained to be independent and encouraged to develop their own regional initiatives that could be supported by the national team. These initiatives were distinctly Maori when appropriate. They were also aimed at enhancing liaison with mainstream institutions and supporting non-Maori communities when appropriate, since another facet facet /fac·et/ (fas´it) a small plane surface on a hard body, as on a bone.

fac·et
n.
1. A small smooth area on a bone or other firm structure.

2.
 of the RCs' role was bridging the gap between the Maori community and mainstream institutions and between Maori and Pakeha world views.

The Maori SIDS Prevention Programme was further extended with the team's involvement in research. Recognition of the importance of sound research for effective advocacy (Finau 1998) led the team into the New Zealand SIDS Study Group which commissioned a pilot for a proposed second national case control study. This was begun in 1998 and included: the development 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 both death scene investigation and SIDS autopsy protocols; a qualitative study of Maori, Pacific and Pakeha infant care practices, which was completed in early 1999 (Abel et al. 1999); and a preliminary study of Maori whanau experiences of grief following SIDS, from which a larger study was developed and initiated later that year. Based on previous SIDS research experience (Everard 1997), the team also sought to add a client safety aspect to interviewing the largely Maori SIDS families in the proposed study. The proposed case control study was eventually delayed until the environment and support services support services Psychology Non-health care-related ancillary services–eg, transportation, financial aid, support groups, homemaker services, respite services, and other services  for these families improved enough to ensure the research process was safe for them.

There has not yet been a formal outcome evaluation of the Maori SIDS Prevention Programme. In 1997, three years into the programme, a process evaluation concluded that, given the structural difficulties within which the programme operated (see below), it had progressed well with its objectives and needed more funding to reach further into Maori communities (Lawson-Te Aho and Rogers 1997). NZHIS SIDS data suggest there has been a reduction in Maori SIDS rates since the introduction of the programme, from 8.0 per 1000 live births in 1993 (up from 6.9 in 1992) to 3.5 in 1997. However, these rates can not be reliably compared since in 1995 the official definition of Maori ethnicity was broadened, thus increasing the denominator denominator

the bottom line of a fraction; the base population on which population rates such as birth and death rates are calculated.

denominator 
 and producing rates that were lower than would have been the case using the former definition. In fact, actual numbers of Maori SIDS deaths do not suggest a convincing downward trend, with the annual total fluctuating fluc·tu·ate  
v. fluc·tu·at·ed, fluc·tu·at·ing, fluc·tu·ates

v.intr.
1. To vary irregularly. See Synonyms at swing.

2. To rise and fall in or as if in waves; undulate.

v.
 from 57 in 1993 to 69 in 1996 and back to 57 in 1997 (NZHIS figures).

Many of the risk factors evident in SIDS families now are those classified as non-modifiable (young parent, poverty, left school below age 18) or hard to modify (smoking, late attendance at antenatal an·te·na·tal
adj.
See prenatal.



antenatal

before parturition. Called also prenatal, antepartal.
 care.) Having an impact on these risk factors is expected to take some time and it is unrealistic to expect significant reductions in SIDS deaths at this stage. However, given the suggested link between SIDS and poor socio-economic status (Mitchell, Taylor et al. 1992), the increase in poverty and deprivation for Maori communities over 15 years of structural reform (Te Puni Kokiri 1998) and the recent increases in childhood diseases associated with deprivation, such as meningitis meningitis (mĕnĭnjī`tĭs) or cerebrospinal meningitis (sĕr'əbrōspī`nəl), acute inflammation of the meninges, the membranes that cover and protect the brain and spinal cord.  and tuberculosis tuberculosis (TB), contagious, wasting disease caused by any of several mycobacteria. The most common form of the disease is tuberculosis of the lungs (pulmonary consumption, or phthisis), but the intestines, bones and joints, the skin, and the genitourinary,  (Galloway et al. 1996; John and Koelmeyer 1999), we would suggest that, had the Maori SIDS Prevention Programme not been in place, there may have been an increase in Maori SIDS deaths over the course of its first five years.

FACING THE CHALLENGES

The Maori SIDS Prevention Programme faced a number of challenging issues and obstacles that shaped its ongoing direction and development. In this section we identify these and discuss some implications, particularly those related to changes and restrictions within the contracting environment and the meeting of community needs.

In their process evaluation of the Maori SIDS Prevention Programme, Lawson-Te Aho and Rogers (1997) identified three primary difficulties faced by the team. Firstly, the division of public and personal monies made it difficult for the RCs to create a seamless service for Maori families (see below).

Secondly, poor child-health service coordination service coordination Case management, see there  within and between regions affected the RCs' ability to more effectively network with other child health services in their region. Within the region, Maori child-health services were usually either lacking or so under-funded that it was inappropriate to increase their workload, and Maori workers attached to Pakeha institutions were difficult to collaborate with because of their very defined roles. Lack of intra-regional service coordination was also perceived to be an effect of the competitive contractual environment, which lessened less·en  
v. less·ened, less·en·ing, less·ens

v.tr.
1. To make less; reduce.

2. Archaic To make little of; belittle.

v.intr.
To become less; decrease.
 the incentive to collaborate. Working across regions was hindered by RHA RHA Residence Hall Association
RHA Regional Health Authority
RHA Road Haulage Association
RHA Rental Housing Association
RHA Royal Horse Artillery (a British Regiment)
RHA Royal Hibernian Academy
 monies being assigned specifically and exclusively to services within their own regions, with strong deterrents to efforts that overstepped these boundaries.

Thirdly, there was a lack of realistic resources for community or health service programmes that supported the health promotion or SIDS prevention messages. For example, ceasing smoking was an important part of the prevention message, yet there were no community smoking cessation programmes in place and no resources available for them. Obtaining resources for such programmes, which were labelled personal rather than public health initiatives, was difficult and frustrating frus·trate  
tr.v. frus·trat·ed, frus·trat·ing, frus·trates
1.
a. To prevent from accomplishing a purpose or fulfilling a desire; thwart:
.

Furthermore, the promotion of breastfeeding did not receive structural support, a situation that appears to have been ongoing since the evaluation, since changes to maternal and well child services, rather than improving breastfeeding support, appear to have been associated with poor breastfeeding support (National Health Committee 1999) and a reduction in breastfeeding rates (Sinclair 1997). Critics of the maternity service budget-holding model have argued that a fixed (and relatively low) budget for total postnatal postnatal /post·na·tal/ (-na´t'l) occurring after birth, with reference to the newborn.

post·na·tal
adj.
Of or occurring after birth, especially in the period immediately after birth.
 care increases the likelihood of reductions in postnatal visits (Abel 1997) and this may well be a factor here.

In addition to these programme intervention issues the Maori SIDS Prevention Programme experienced contractual challenges. From its inception in 1994 the team negotiated its contracts within an environment of considerable change in the health system. The programme was set up at the beginning of the health reforms and the original national contract was held with the PHC. When the PHC was disbanded in January 1996, responsibility for this contract was passed to an inter-RHA public health secretariat Secretariat, 1970–89, thoroughbred race horse. Trained by Lucien Laurin and ridden by Ron Turcotte, Secretariat won the Kentucky Derby, Preakness, and Belmont Stakes to capture the Triple Crown in 1973.
Secretariat

(foaled 1970) U.S.
 and the first RC contract was obtained through the northern RHA. When the RHAs were amalgamated into a single Health Funding Authority (HFA) the national contract was split, with half the money being sent back to the regions for regional SIDS work. In effect, this money was lost to the national programme, an intentional in·ten·tion·al  
adj.
1. Done deliberately; intended: an intentional slight. See Synonyms at voluntary.

2. Having to do with intention.
 but perverse per·verse  
adj.
1. Directed away from what is right or good; perverted.

2. Obstinately persisting in an error or fault; wrongly self-willed or stubborn.

3.
a.
 strategy of the HFA to seed the funding of RC contracts in the regions. Contract negotiations now had to occur with five different organisations with relatively frequent changes in contract manager personnel and a subsequent loss of institutional memory. Altogether, these factors made it much more difficult to negotiate contracts efficiently.

Contracting was competitive and there were strict service outputs prescribed pre·scribe  
v. pre·scribed, pre·scrib·ing, pre·scribes

v.tr.
1. To set down as a rule or guide; enjoin. See Synonyms at dictate.

2. To order the use of (a medicine or other treatment).
 by the purchasing agency. One of the difficulties encountered by the Maori SIDS Prevention Programme team was the purely contractual nature of their relationship with the purchasing agency. There was little cooperative or joint exploration of the issues to be examined and no combined strategic planning for programme development and, once the outputs had been defined, the purchasers did not appear to have any further investment in the evolving nature of the new work to be done. In addition, although the workload increased in breadth and complexity, resources did not correspondingly increase.

This "top-down" approach and the detached position of the purchasing agency proved difficult for the team. Given the myriad of complex issues the RCs faced in their communities, the team needed a proactive partnership relationship between purchaser and provider and a forum in which to discuss issues as they arose and in which to make transparent adaptations to the services provided as new directions became evident. These did not eventuate e·ven·tu·ate  
intr.v. e·ven·tu·at·ed, e·ven·tu·at·ing, e·ven·tu·ates
To result ultimately: The epidemic eventuated in the deaths of thousands.

Verb 1.
. Nevertheless, this did not slow down strategic development within the programme and some initiatives, for example whanau support, developed despite the contractual restrictions. Transferring the impact of this development any further than the immediate circle of influence (for instance, into the provision of appropriate antenatal care and breastfeeding resources) was, however, difficult. The lack of a forum to maximise efficiencies for Maori providers also meant that the programme struggled with some basic management issues, such as public relations public relations, activities and policies used to create public interest in a person, idea, product, institution, or business establishment. By its nature, public relations is devoted to serving particular interests by presenting them to the public in the most , and there was poor recognition of some staff needs, such as workforce development, supervision, holidays and personal safety issues.

It was against this backdrop of a shifting purchasing environment, competitive contracting and prescribed parameters for service outputs that the team had to develop its programme in response to the needs of the Maori community. In keeping with the maxim of working within a Maori world view and emphasing the holistic approach holistic approach A term used in alternative health for a philosophical approach to health care, in which the entire Pt is evaluated and treated. See Alternative medicine, Holistic medicine.  inherent in indigenous custom, it was necessary to move beyond the single-issue focus of information dissemination to address the many other issues considered important by these communities, even though, strictly speaking Adv. 1. strictly speaking - in actual fact; "properly speaking, they are not husband and wife"
properly speaking, to be precise
, they were not within the team's brief. The experience of the programme showed that, in the Maori community at least, public health and personal health objectives needed simultaneous and linked developments.

The experiences of the programme also illustrated the tensions experienced by many Maori service providers -- whose first responsibility is to their community -- when community needs are at odds with the imperatives and expectations of the purchaser. This issue raises questions about the appropriateness of the contractual obligations issued by non-Maori purchasing agencies to Maori health providers servicing Maori communities and, as a corollary corollary: see theorem. , it raises the suggestion of Maori having more control over the purchasing of Maori initiatives.

The issue of Maori control of health service purchasing has been discussed for some time. The 1991 green and white paper (Upton 1991) which outlined the basis for the 1993 health reforms proposed not only to initiate competitive provider contracting but also competitive purchasing. Health Care Plans were to be set up in competition with the Regional Health Authorities to provide funding for those organisations that did not wish to contract with the RHAs. In anticipation of this change, in 1992 a Maori Health Care Plan was set up, an opportunity for Maori to gain control of purchasing for Maori health providers. The Health Care Plans never eventuated, however. Although the HFA set up partnerships with Maori authorities and some Maori budget-holding initiatives have been developed, ultimate control of purchasing decisions has remained firmly in the hands of the HFA and its non-Maori managers.

Some Maori commentators have argued that under Article Two of the Treaty of Waitangi The Treaty of Waitangi (Māori: Tiriti o Waitangi) is a treaty signed on February 6, 1840 by representatives of the British Crown, and Māori chiefs from the North Island of New Zealand.  it is appropriate to promote Maori control of social and health policy and services for Maori. Barrett (1998) argued that until now the discourse to do with Crown obligations to Maori health has been framed as an obligation to meet Maori health needs rather than Maori health rights. The former (seen an obligation under Article Three of the treaty) keeps control for health administration with the Crown. He argues that the word taonga Taonga is the Māori word for a treasured thing, whether tangible or intangible. Tangible examples are all sorts of heirlooms and artefacts, land and fisheries. Intangible examples include language, radio frequencies and riparian rights.  in Article Two of the treaty could be interpreted to include the right for Maori to have control over health and social services social services
Noun, pl

welfare services provided by local authorities or a state agency for people with particular social needs

social services nplservicios mpl sociales 
, thus supporting a case for an autonomous Maori purchasing agency. So far there has been little debate about this distinction but this may change in the near future. The Maori SIDS Prevention Programme team would argue that control of appropriate services, particularly in the tradition-bound area of infant care practices, is a right in terms of the unwritten LAW, UNWRITTEN, or lex non scripta. All the laws which do not come under the definition of written law; it is composed, principally, of the law of nature, the law of nations, the common law, and customs. , but widely recognised, Article Four obligation to ensure whakapono and ritenga Maori (Maori beliefs and customs).

POSSIBLE FUTURE DIRECTIONS

SIDS was initially identified as a pressing Maori health problem. It now seems likely that this is so not because of Maori ethnicity per se but rather because Maori comprise a large proportion of those in the lower socioeconomic so·ci·o·ec·o·nom·ic  
adj.
Of or involving both social and economic factors.


socioeconomic
Adjective

of or involving economic and social factors

Adj. 1.
 sectors (Mitchell and Scragg 1994). In other words Adv. 1. in other words - otherwise stated; "in other words, we are broke"
put differently
, SIDS is a generic issue for all those within the lower socioeconomic groups. Some risk factors, such as smoking, are prevalent in non-Maori families within similar social situations. Prevention measures aimed at these risk factors, along with interventions to improve death scene investigations and services, therefore, have application to the whole community. Furthermore, because of a gap in support services to non-Maori SIDS families, the Maori SIDS Prevention team has often provided support (routinely in one region) to these families, who are, in effect, outside their contractual brief.

The extension of a Maori programme into the area of influential mainstream policy and service change, and mainstream family support, raises interesting issues to do with Maori influence within the broader health service field. Although it was not the intention of the Maori SIDS Prevention Programme to formally extend into mainstream SIDS support work at a regional level, their work to date and the RCs' skills base, along with the generic national work, signal a potential for this direction.

Because Maori health initiatives, such as the Maori SIDS Prevention Programme, deal with complex health issues and have strict accountability to their communities, they are at the cutting edge of the development of responsive health services. In addition, the RCs have developed skills in service coordination, negotiation, advocacy and information management, skills not routinely held by other health workers. This means that they are ideally placed to move in the future into both Maori and mainstream health services as upper-level clinical managers.

For Maori wishing to access healthcare, the recent trend has been from having no choice but to attend mainstream (Pakeha) services to having the choice of attending "for Maori, by Maori" services. The Maori SIDS Prevention Programme has, both by design and default, moved into the initial stages of the logical next phase of this trend: Maori providers servicing the general population. While there is general government support for Maori programmes providing services to an exclusively Maori population, the extension of such programmes to the general population may be more challenging because they would be in direct competition with Pakeha mainstream services.

CONCLUSION

The Maori SIDS Prevention Programme has raised the profile of SIDS as an important public health issue and worked in a manner consistent with the expectations of the Maori community. It has expanded from its initial focus on information dissemination for SIDS prevention and the promotion of baby wellness to include: support for Maori SIDS families; advocacy to ensure improved services for SIDS families at both a regional and national level; advocacy for changes to the Coronial process; the establishment of a SIDS database and register; and the commission of and involvement in research. The direction of development has been from bottom up, from its flaxroots base to structural and policy domains. The team has also extended its scope to service families from other ethnic groups who find themselves in similar socio-economic circumstances.

Despite some difficulties, the programme has remained robust and credible within both the Maori community and the health service at a time when many other independent Maori health initiatives have not thrived. A number of factors have contributed to this. The programme was developed and run by Maori for the Maori community and remained committed to working within a Maori world view. At the same time it was flexible and worked with mainstream services and extended services to non-Maori when appropriate.

Regionally, the coordinators had strong whanau links and networks and a coordination role within local institutions. Their relative autonomy, compared to other health and community workers in their regions, meant they were not constrained con·strain  
tr.v. con·strained, con·strain·ing, con·strains
1. To compel by physical, moral, or circumstantial force; oblige: felt constrained to object. See Synonyms at force.

2.
 by local bureaucratic bu·reau·crat  
n.
1. An official of a bureaucracy.

2. An official who is rigidly devoted to the details of administrative procedure.



bu
 politics and were able to be responsive to local community needs. Moreover, they had the support of a national team and were viewed as workers with specialist skills and knowledge.

The national team also had credibility in the institutional and academic environments. The director was a Maori public health specialist, the Maori national coordinator had a high public profile in the area of SIDS and a third, Pakeha, member had many years of involvement in the SIDS field, with an intimate knowledge of the institutions involved and the issues for Maori and non-Maori families. Together, the team was able to work on the interface issues between Maori communities and Pakeha-dominated institutions.

Some features of the health system, however, hindered the programme's ability to be holistic and responsive to the Maori community. Two structural divisions, in particular, were problematic for the programme's smooth development: the personal/public health division and the purchaser/provider split. The intent of separating personal and public health spending was to ring-fence the public health monies that had historically been subsumed within the general health service. The strict nature of the divisions, however, did not acknowledge or facilitate the productive interaction of these two types of services nor facilitate the development of broad-based holistic services expected by Maori communities. Similarly, the nature of the division between purchaser and provider did not facilitate a dynamic relationship that could enable the programme to respond easily and fluently flu·ent  
adj.
1.
a. Able to express oneself readily and effortlessly: a fluent speaker; fluent in three languages.

b.
 to the changing needs and expectations of the communities. This points to the need for more flexible structural processes, particularly for Maori health initiatives that have particularly strong community expectations to be holistic and dynamic.

The experiences of the Maori SIDS Prevention Programme have also raised for further discussion political issues to do with the entry of Maori health providers into mainstream service provision and greater Maori control of health service purchasing. As independent Maori health service providers begin to offer services to the general population, it marks a progression within the health system from all providers being Pakeha, to "by Maori for Maori" providers, to the further addition of "by Maori for the general population" providers. Although this third stage is new and potentially vulnerable, it heralds the increasing influence of Maori health service providers and the potential applicability of Maori health care models to non-Maori communities.

The same progression has not been so evident for Maori health purchasing. Despite initiatives to increase Maori control of purchasing decisions, ultimate control of not only mainstream services but also Maori services remains with Pakeha. Some of the above-mentioned difficulties experienced by Maori providers when strict purchaser-defined imperatives are not in accord with Maori needs, have been highlighted here and provide fuel for the challenge of Maori control of purchasing. This and the other issues raised are important topics for further discussion, particularly in the context of debates about how to further Maori development.

REFERENCES

Abel, S. (1997) Midwifery midwifery (mĭd`wī'fərē), art of assisting at childbirth. The term midwife for centuries referred to a woman who was an overseer during the process of delivery. In ancient Greece and Rome, these women had some formal training.  and maternity services in transition: An examination of change following the Nurses Amendment Act 1990, Ph.D. Thesis, Department of Anthropology anthropology, classification and analysis of humans and their society, descriptively, culturally, historically, and physically. Its unique contribution to studying the bonds of human social relations has been the distinctive concept of culture. , University of Auckland, Auckland.

Abel, S., M. Lennan, J. Park, D. Tipene-Leach, S. Finau et al. (1999) Infant care practices: a qualitative study of the practices of Auckland Maori, Tongan, Samoan, Cook Islands, Niuean and Pakeha caregivers of under 12 month old infants, Department of Maori and Pacific Health, University of Auckland, Auckland.

Barrett, M. (1998) "The Treaty of Waitangi and social policy" Social Policy Journal of New Zealand, 11:29-47.

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Lawson-Te Aho, K. and J. Rogers (1997) Process evaluation of the National Maori SIDS Prevention Co-ordination Service. Te Aho Associates, Auckland.

Mitchell, E.A. (1990) "International trends in post neonatal mortality Noun 1. neonatal mortality - the death rate during the first 28 days of life
neonatal mortality rate

death rate, deathrate, fatality rate, mortality rate, mortality - the ratio of deaths in an area to the population of that area; expressed per 1000 per year
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Mitchell, E.A. and R. Scragg (1994) "Observations on ethnic differences in SIDS mortality in New Zealand" Early Human Development, 38:151-7.

Mitchell, E.A., P. Aley, J. Eastwood (1992) "The National Cot Death Prevention Programme in New Zealand" Australian Journal of Public Health, 16(2):158-161.

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.
, C. Everard (1994) "Reduction in mortality from sudden infant death syndrome in New Zealand: 1986-92" Archives of Disease in Childhood, 70:291-4.

Mitchell, E.A., R. Scragg, A.W. Stewart et al. (1991) "Results from the first year of the New Zealand Cot Death study" New Zealand Medical Journal, 104(906):71-6.

Mitchell, E.A., B.J. Taylor, R.P. Ford et al. (1992) "Four modifiable and other major risk factors for cot death: The New Zealand study" Journal of Paediatrics and Child Health, 28(Suppl 1):S3-8.

National Health Committee (1999) Review of maternity services in New Zealand. National Health Committee, Wellington.

Peters, M. (1993) "Welfare and the future of community: The New Zealand experiment" In S. Rees (ed) Beyond the market: Alternatives to economic rationalism Economic rationalism is an Australian term in discussion of microeconomic policy, applicable to the economic policy of many governments around the world, in particular during the 1980s and 1990s. , Pluto Press Pluto Press is a progressive, independent publisher based in London. It was founded in 1969 by Richard Kuper and others as an arm of International Socialism, the forerunner of the Socialist Workers Party in the UK. , Leichhardt NSW NSW New South Wales

Noun 1. NSW - the agency that provides units to conduct unconventional and counter-guerilla warfare
Naval Special Warfare
, pp:171-85.

Scragg, R., E.A. Mitchell, B.J. Taylor et al. (1993) "Bedsharing, smoking, and alcohol in the sudden infant death syndrome" British Medical Journal The British Medical Journal, or BMJ, is one of the most popular and widely-read peer-reviewed general medical journals in the world.[2] It is published by the BMJ Publishing Group Ltd (owned by the British Medical Association), whose other , 307:1312-8.

Sinclair, R. (1997) "Drop in breast feeding breast feeding Pediatrics The provision of a neonate and infant with liquified lacteal products 'on tap'; lactation and BF–≥ 6 months before age 20 is associated with a relative risk of 0.  rates as services cut" New Zealand Doctor, 9 July.

Te Puni Kokiri (1998) Progress towards dosing the social and economic gaps between Maori and non-Maori. Te Puni Kokiri, Wellington.

Tipene-Leach, D., C. Everard, R. Haretuku (1999) Taking a strategic approach in Maori communities - an indigenous perspective. Working paper. Department of Maori and Pacific Health, University of Auckland, Auckland.

Tuohy, P. and M. Griffiths (1996) "SIDS risk factors survey: Second report". In Progress on Health Outcome Targets 1996. Ministry of Health, Wellington, pp.78-84.

Upton, S. (1991) Your health and the public health. GP Print, Wellington.

David Tipene-Leach(1) Sally Abel Riripeti Haretuku Carole Everard Department of Maori and Pacific Health University of Auckland

(1) David Tipene-Leach, is Director of the Maori SIDS Prevention Programme, Department of Maori and Pacific Health, University of Auckland. Sally Abel is a Research Fellow of the Department of Maori and Pacific Health, University of Auckland. Riripeti Haretuku is National Coordinator of the Maori SIDS Prevention Programme, Department of Maori and Pacific Health, University of Auckland. Carole Everard is National Coordinator of the Infant Mortality Register, Department of Maori and Pacific Health, University of Auckland.
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Title Annotation:sudden infant death syndrome
Author:Everard, Carole
Publication:Social Policy Journal of New Zealand
Geographic Code:8NEWZ
Date:Jul 1, 2000
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