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82 Current Pediatric Reviews, 2010, 6, 82-85

Role of Voluntary Organisations
Joyce Epstein*

Foundation for the Study of Infant Deaths, UK

Abstract: Voluntary organisations, working closely with scientists and doctors in some 15 countries, play a key role in
promoting research into Sudden Infant Death, providing support for bereaved families, disseminating infant care messages
to help prevent deaths and improving investigations when a baby dies. This paper provides an overview of the role of
voluntary organisations including giving examples of innovative projects and programmes to tackle the problems of
sudden infant death.
Keywords: Sudden Infant Death, charities, voluntary organisations, research, bereavement support, prevention, improving
investigation of SUDI.

INTRODUCTION the need, and parents and professionals affected by infant
death frequently turn to voluntary organisations whose
There are currently some 15 national voluntary organisa- members have developed massive expertise in providing
tions world-wide involved in work on Sudden Unexpected
support, most having done so since the 1970s and 1980s.
Death in Infancy (SUDI) in North America, Europe,
Australasia and South America. They have played a key role Finally, many voluntary organisations are also involved
in reducing the number of infant deaths not least through in delivering training for professionals on how to respond to
providing funds for research into the causes and prevention SUDI, not only in terms of how to support families but also
of deaths; but also, importantly, through developing and increasingly on how to investigate and review deaths to
disseminating evidence-based information on how to reduce ensure no information on the possible causes and factors
the risk of deaths. Voluntary organisations have also pressed contributing to the death is overlooked. In the early 2000s in
successfully for national and regional authorities to mount particular, public controversy in many countries over murder
information campaigns on risk reduction and even in some masquerading as SIDS, or uproar over SIDS inappropriately
cases to pass legislation or enact other rules potentially treated as murder, led to a call for better training and systems
affecting scientific progress in the field. for professionals. Voluntary organisations were often key
players in these developments.
Through the International Society for the Study and
Prevention of Perinatal and Infant Death (ISPID) and its
predecessor organisations, the voluntary organisations have RESEARCH
run ten successful international conferences since 1989
bringing together scientists, clinicians and parents world- The Foundation for the Study of Infant Deaths (FSID), a
wide to consider different aspects of SUDI. This has voluntary organisation in the U.K., has provided nearly
provided a key forum for the discussion of thousands of US$4,700,000 in funding for SUDI research over the past 10
research papers and through mutual exchange of ideas, the years (1998-08), raised through a varied programme of
generation of new research and new interdisciplinary and fundraising activities. Most of the voluntary organisations
international working partnerships. The next conference in engage in fundraising activities and have together provided
this series will be held in Sydney, Australia, 8-10 October significant sums of money to support SUDI research, though
2010. For more information see www.isaispid2010.com. complete figures are not available. In Australia, for example,
Individually, many of these voluntary organisations also about US$800,000 was provided for SUDI research over the
mount regular national and regional conferences and past 10 years by the voluntary organisation SIDS and Kids.
meetings in their own countries, offering a key platform for In Norway, the figure is about US$5,800,000, from Lands-
SUDI researchers locally to exchange ideas in this relatively foreningen uventet barnedød (Norwegian SIDS and Stillbirth
small and specialised field. Society), and in Scotland the Scottish Cot Death Trust has
contributed about US$2,000,000 in that period. Voluntary
Voluntary organisations also play a crucial role in provi- organisations range from large agencies with professional
ding or facilitating support for bereaved families devastated fundraising staff to much smaller groups staffed mainly or
by the loss of their infant and for the professionals who must only by volunteers who do what they can to raise funds to
respond to them and who may also need emotional support. support research. For example, the Swedish National Infant
State provision of such services is often insufficient to meet Foundation contributed nearly $50,000 to research in the
past 10 years. Other voluntary organisations that have raised
funds for research include Naitre et Vivre in France and the
Canadian Foundation for the Study of Infant Deaths.
*Address correspondence to this author at the Foundation for the Study of
Infant Deaths, 11 Belgrave Road, SW1V 1RB, London UK; Tel: Voluntary organisations have often played an important
+442078023200; Fax: +442078023229; E-mail: joyce.epstein@fsid.org.uk role in facilitating research by encouraging bereaved parents

1573-3963/10 $55.00+.00 © 2010 Bentham Science Publishers Ltd.

2010. 1 83 to help researchers.and survey. In the UK FSID SUDI organisations to whom the print and broadcast media regularly generates free mass media publicity for various turn for comment when theories on SIDS prevention or aspects of the Reduce the Risk message by providing products which claim to prevent SIDS are put forward. the USA and others the librarian who undertakes searches for researchers. Various countries’ leaflets. and contains comprehensive resources for child care centres and day care It should be noted that in addition to promoting evidence- programs to support infant safe sleeping practices. and hence effective way than traditional forms of commu- nication of health information: Bubbalicious [8] combines The Scottish Cot Death Trust employs researchers to help chat.” Sadly. Germany. Since 1999 the Norwegian organisa. voluntary organisations have In the U. Vol. Voluntary organisations work closely with researchers to try ing low awareness among parents of the evidence-based to ensure the Reduce the Risk messages publicised in the advice. the site enables teenage mums themselves and clarified that in Scotland bed sharing was a risk factor to pass a series of training tests and become “Big Sisters.S. it is the voluntary about topics such as infant wrapping. England. For exam- the risk message. that antimony in mattresses produced toxic advice to parents of new babies or has pressured state health gases that caused infant deaths. This has been key to the dramatic bereaved parents. Particularly since the 1990s. SIDS and Kids ASK Online Catalogue and Librarian play an important role in promoting research. for example. SIDS organisation. though cot in a room with the parents. through their contacts with authorities to do so.in the U. The website.Role of Voluntary Organisations Current Pediatric Reviews. when the theory was put forward to great media acclaim. The families . funded by the Department of Health in England. SUDI is concentrated in more vulnerable ple FSID recently published results of a survey of parent attitudes to the advice to reduce the risk of SIDS [3]. personal stories.” there is also a “Top Dads” prog-ramme available for teenage fathers. In the U. for example about bed sharing [6]. as middle class parents take up the reduce Voluntary organisations also conduct research. Crucially. voluntary organisations are working to target the reduce the found that substantial minorities of parents say they do not risk message on the more at-risk populations. which was funded by the Department for Children. media are based on sound evidence. The kit based safe infant care. the organisation has produced leaflets. SIDS and Kids produces a the target areas.” to for young infants [5]. Child Care Kit. need.K. Two case-control studies order to get safe infant care messages to this hard-to-reach revealed a novel risk factor – used infant mattresses [4] – group. side or prone sleeping and bed sharing a social networking website for teenage parents in 2009 that can increase the risk of infant death. First Candle has also developed a programme played a crucial role in ensuring that parents are aware of the targeted at vulnerable families. Scotland. professionals and those caring for children [2]. health (Fig. accessible used to help inform future strategies and information campaigns to promote safe infant care. There is general agree- Online is a collection of scientific papers providing the ment across most countries’ health authorities and voluntary scientific evidence underpinning the SIDS and Kids safe organisations as to the content of the Reduce the Risk sleeping program as well as the bereavement support ser- messages. videos and other materials to spread safe sleep the UK at least. The findings are being aims to get the message across in a more credible. including providing the site. The programme follows parents for the first year and All new parents in Norway receive this garment as a gift in the goal of the project is to reduce deaths by at least 50% in the maternity ward. ASK given to the parents of every infant and through joint consultations is updated regularly. the SIDS rate for teenage mothers is four times the rate for older women .. The National Crib Campaign evidence-based safe infant care messages such as the advice is a seven-year project designed to distribute free cribs and to sleep babies supine. Increasingly. In the 1990s. No. In the first six months 588 young parents registered on information that “The safest place for a baby to sleep is in a the site and 33 became qualified “Big Sisters.K. in posters. incentives. FSID was able provide researchers with decline in SIDS in their respective countries. In many countries. no such fathers have yet qualified. educate and support other teenage parents on the and elsewhere to alter their advice. for example. Schools DISSEMINATING EVIDENCE-BASED SAFE INFANT and Families. which was groups often work in close collaboration with state invaluable in bringing evidence-based light to shed on the authorities in agreeing on and disseminating safe infant care theory and ultimately to disprove it [1]. by recruiting parents to In virtually every country where there is a voluntary donate tissue samples for genetics research. This helped lead authorities in the UK mentor. will be subject to evaluation by both users and CARE MESSAGES professionals. and an element of fun in complete projects run by the Trust. FSID and the Depart- ment of Health jointly publish a leaflet that is intended to be In Australia. custom designed posters and leaflets for parents advice on infant care. FSID launched believe that smoking. most produced with vices. The voluntary samples of mattresses on which babies had died. 6. The catalogue may be accessed by the public via the SIDS and Kids website and in contact with on the ISPID website [7] including Australia. journalists with a newsworthy “hook”. 1). France. In Australia. messages. The collection includes papers on SIDS and the impact the involvement of voluntary organisations. voluntary organisations often play a includes templates for safe sleeping policies. . safe sleep education to parents and caregivers who have one tion has given out over half a million baby bodysuits with or more risk factors for SIDS and demonstrate financial the message “this side up when I sleep” printed on the front. for example. a staff training valuable role in preventing the spread of non-evidence-based module. which can be purchased online. Canada. can be viewed of the death on families.often a survey reveal.

2010. No. and efforts are made by the SIDS UNEXPECTED INFANT DEATHS charities to facilitate delivery of support. zation also offers innovative therapeutic courses. 6.K. At national level has died. providing bereavement support because of the changing epi- demiology of families suffering a death. The organi- bereaved parents. For example. and increasingly. All the organisations have voluntary or paid staff who have themselves experienced the sudden and unexpected In Norway the voluntary organisation offers local family death of a baby and who support other families whose baby weekend “camps” for bereaved parents. in storytelling or psychodrama addressing coping with In many countries there are increasing challenges in the next pregnancy after the death of a child. or the opportunity to One of the key strengths of voluntary organisations. Examples of leaflets. is in providing bereavement support when a baby FSID staff or an FSID befriender. large meet other bereaved families or to talk with a member of and small. dies. sharing experiences and learning about grief. (1). through published materials including parents. befrienders and staff members that focuses on books for the siblings of babies who die. The support may be delivered through a telephone there is an annual weekend gathering for newly bereaved helpline. face-to-face. SUPPORTING BEREAVED FAMILIES leisure attraction or theme park. These can take place at a local distressing for bereaved families.84 Current Pediatric Reviews. Topics like support is offered by email and on discussion forums for autopsy and children’s grief are also addressed. for exam- ple. where there are recreational facilities if that is all that is wanted. 1 Joyce Epstein Fig. one of the ways that FSID makes support available is There was a sharp increase in suspicion about sudden by inviting families – all the members of the family – to join unexpected infant deaths in the early 2000s. Vol. a distress that was exacer- . Vulnerable families with multiple problems may be less likely or able to seek IMPROVING INVESTIGATIONS OF SUDDEN AND organisational help. This was very in a free Family Day Out. in the U.

and elsewhere. BMJ investigations of deaths. 325: 1007. Bed sharing.co. 2010 Revised: 22 February. Ecob R. a key role in SUDI by supporting research. Credibility gap? Parents’ beliefs about reducing the risk of cot death. to learn as much as possible from each ship. ting research-based infant care advice to reduce the risk of [4] Tappin D.but there is no doubt that voluntary www. supporting bereaved families and helping improve sudden infant death syndrome in Scotland: Case-control study. 147(1): 32-7. and to ensure families were well supported.ispid. is com- experts about the cause of sudden unexpected infant deaths posed of an effective partnership of bereaved parents and of at the start of the last decade required a much bigger res- doctors and researchers with a special interest in SUDI. achieved in part through the efforts of voluntary SUDI organisations in Scotland. paign achieved success: improved investigations became and who work so closely and so well with the voluntary mandatory in England in 2008. 82(11): 21-4. increasing costs of research in a difficult [8] Foundation for the Study of Infant Deaths.org/ play. Similar successes were organisations. J Pediatr 2005. which agreed. Brooke H. The Council of Trustees at public suspicion and highly publicised opinions of some FSID. No. challenge to finish the job by reducing deaths as close as [6] Foundation for the Study of Infant Deaths media release 11 May possible to zero grows greater as the number of deaths drop . Used infant mattresses and SUDI. FSID launched a concerted campaign calling for imp- FSID’s Council is in turn advised by the Scientific Com- roved. 2005.html having a baby die. 2010 Accepted: 31 March. Ecob R. dissemina. 1 85 bated by controversial court cases in the U. these organisations can take credit for a [5] Tappin D. 6. REFERENCES CONCLUSION [1] Expert group to investigate cot death theories: toxic gas hypothesis. Working opportunity now to thank the many SUDI scientists and with and through other agencies and organisations. FSID had long organisations work closely together on a regular basis with been urging better investigation of deaths. The sudden infant death syndrome in Scotland: a case-control study. proportion of cases categorised as SIDS. “Parents lack of knowledge on safe sleeping putting babies at due to the reduced natural pool of support. and continue to [2] SIDSandKids website. the cam- clinicians who bring an equal dedication to the tasks at hand. Vol. Brooke H. roomsharing. the deaths were In fulfilling the role described in this chapter.bubbalicious. 2010.sidsandkids. multiple problems risk of cot death”. Available at financial environment .K. Gibson A. which decides policy for the organisation.S. Staffed by dedicated individuals 2002. multi-disciplinary investigation of deaths according to mittee composed of SUDI scientists and clinicians. Department of Health May 1998.org/prevention.K. voluntary probably due to maltreatment and in the U. Chairman: Lady Limerick. Community Pract 2009. Voluntary organisations have played. But the intense SUDI scientists and clinicians. Available at http://www. and great deal of progress and innovation in this field. (paid or otherwise). Italy. faced by the majority of families that are most at risk of [7] International Society for the Study and Prevention of Perinatal and Infant Death.Role of Voluntary Organisations Current Pediatric Reviews. 2010 .uk Received: 07 January. Available at http://www. Voluntary organisations will continue to show the commitment they organisations had always acknowledged that in a small have always brought to the task. [3] Epstein J. Jolly C. the U. written protocols in order to reduce confusion about makes a key contribution to the parent/professional partner- causes of death. ponse. The voluntary organisations would like to take the death.