Sudden Infant Death Syndrome �9 A Crisis for Parents and Health Professionals,

Maria Powell

Eastern Health Board.

Abstract A study of the social impact of Sudden Infant Death Syndrome (SIDS) in 40 families in Ireland (40

mothers: 29 fathers and 78 siblings) revealed a profound influence on family function. Less than half the parents felt an acceptance of the loss at a mean interim 0f2.9 years post SIDS. Family dysfunction was manifested by marital problems and prolonged grief reactions.

Interpersonal support through family, friends, relatives or neighbours appropriately assisted a third of families. Medical information when provided to parents contributed to a more normal grief process, but lack of postmortem information contributed to pathological or unresolved guilt in a third of parents and anger in nearly half the sample. Health professional and voluntary aftercare at community level was inconsistent in meeting parents' need for information, advice and support.

A primary, preventive health care approach, based on a co-ordinated policy of aftercare to SIDS families, at hospital and community level is recommended to facilitate parents' resolution of grief, and counteract the onset of adverse psychosocial effects.

Introduction Sudden Infant Death Syndrome (SIDS) is the term used to

describe "the sudden death of any infant or young child, which is unexpected by history and in which a thorough postmortem examination fails to demonstrate an adequate cause of death "~. Excluding the first week of life, it is now recognised as the major cause of death in infants under one year, accounting for 2.4 deaths per 1,000 live births in Ireland 2, the United King- dom 3 and the U.S.A?. These sudden, unexplained infant deaths occur most frequently during winter months, typically in a sleeping 2-5 month old infant, sometimes born prema- turely or of low birth weight, who at the time of death may have had an upper respiratory infection 5,6. However, despite intensive investigation and numerous postulated causes, the precise aetiology of SIDS remains uncertain.

Research in Ireland to date has tended to concentrate on medical factors relating to this syndrome rather than its effects on the family. Severe, prolonged grief reactions in parents bereaved by SIDS has been attributed to its unknown cause and unexpected occurrence zs. A study of immediate reactions in 308 families in Great Britain found that more than 70% of parents manifested anger, bewilderment, self-blame and guilt about the SIDS victim 9. Smialek (1978) observed acute reactions of shock, disbelief and self reproach in her public health nursing practice with 351 families ~~ while Blueglass (1980) describes severe anxiety, overprotection of siblings and insomnia following a SID in six families H. This study was undertaken to investigate the social impact of SIDS on families in Ireland, assess if the presence or absence of social support at interpersonal, statutory and voluntary levels influ- enced the outcome, and indicate health professional service implications from the findings.

This study formed part of a M.Soc.Sc. degree in University College, Dublin.

Presented in part at 1st World Family Therapy Congress in Trinity College, Dublin, 19 June 1989.

*Correspondence to Maria Powell, c/o Baggot St. Hospital, Dublin 4.

Methods SIDS families were identified by probability sampling. 61

SIDS families were registered in the Eastern Health Board area for the study period ~2. This geographical area was selected because no comparative index of the incidence and distribution of SIDS cases was available for other areas in Ireland. Contact with families was facilitated by hospital casualty departments where postmortem examinations on the SIDS victims were carried out. 40 of the 61 families were interviewed. Sixteen of the remainder could not be contacted, because they had moved house or the address was incorrect and five refused to participate. Thus a response rate of 83% of families contacted was obtained. 40 mothers and 29 fathers were interviewed. Five mothers were unmarried, two of the remaining 6 fathers of intact families were unavailable and only four refused to participate. Parents (29 of whom were couples) were interviewed by the author in their own homes between 13 months and 3 years of the loss. Joint self reported data added to the depth and reliability of responses. This time period was selected because normal, uncomplicated grief is known to last for up to one year ~3,14, and within this time span some evaluation could be made of how families coped and what factors in the health professional aftercare management of SIDS assisted or inhibited their resolution of grief.

The impact of SIDS on family life was assessed on the basis of Holmes & Rahe's (1967) subjective measurement of the intensity of reactions and length of time taken to adjust to a crisis precipitated by a stressful event ~5. Using a semi- structured questionnaire of 97 questions, parents' perception of the intensity and duration of grief reactions, effects on the marital relationship and self esteem were examined. Parents' use and perception of interpersonal support from family, friends, relatives or neighbours, health professional support at hospital and community level, as well as voluntary self-help SuPport was recorded and analysed. Information on parental management of sibling grief and their approach to children subsequent to the SID are the subject of a separate report (in preparation).

282

voL 160 Sudden infant death syndrome 283 No. 9

TABLE I Long term Psychosocial Grief Effects of SIDS.

N=69 (40 mothers: 29 fathers)

7 0

60

50

40

30

20

i0

0 N

21 .7%

I_ 37.7%

60.9%

411 8Y~ 33.3,% 30.4,0@

-~: 4 5 6

Item Scores: 1 = shock 4 = guilt 2 = disbelief 5 = loss of meaning in life 3 = anger 6 = Anxiety/fear of future

Based on Holmes and Rahe's (1967) subjective measurament of the �9 intensity and length of time necessary to adjust to reactions or effects of stressful life events.

Results Less than half the families (48%) felt they had resolved

their grief and accepted the loss at a mean interim of 2.9 years post SIDS. Severe family dysfunction was manifested by persistent abnormal grief reactions (Table I) and marital strain.

60% of parents felt persistent anxiety or fear of the future, characterised by a fatalistic attitude towards life, an impair- ment of social enjoyment and insecurity about surviving or future children. Nearly half the sample of parents (44.8%) continued to direct their anger at themselves, a third party or God. Anger was commonly directed at medical specialists for not providing or discussing postmortem results. 37.7% con- tinued to suffer from acute grief, with disbelief or an inability to rationalise the loss, manifested by absence of emotion and avoidance or difficulty in talking about the death. Persistent guilt (33.3%) related to the circumstances of the death or an ambivalent pre-loss relationship with the child i.e. "not being at home when it happened" or "letting him cry to sleep the night he died". Loss of meaning in life (30.4%) indicated a permanent sense of void since the loss. Shock, identified by an inability to absorb the reality of the loss, subsided for most parents within three months of their bereavement.

Impact on marital relationship Marital strain, identified by over half the families (54.3%)

was manifested by poor communication, an impairment of enjoyment of life, conflict about decisions relating to early subsequent pregnancy and differences in the grief response. The majority of couples (72.4%) grieved at a different pace, highlighted by fathers (85.2%) more than mothers (52.5%) engaging in new or resuming old outside interests following the loss. Fathers sometimes resented their wives' continuing grief, while mothers were often unable to understand their spouse's apparent acceptance of the loss.

Parents' perception of social support needs Virtually all mothers and fathers (91.3 %) reported the need

to talk about information associated with SIDS, and the significance of the child's life and death to their lives (85.6%) e.g."the kind of child he was" or "feeling his presence in the house". To a lesser extent (59.4%) but more so mothers needed to talk about their guilt feelings. These needs were met for a third of parents (36.5%) who felt family or friends could understand what they were going through.

Hospital management of SIDS crisis 28 parents (40.6%) saw no hospital doctor during their

baby's admission to Casualty dead or following postmortem examination. One-third of parents (42%), 14 couples and one unmarried mother discussed the provisional, presumptive cause of death and postmortem results with a paediatrician within two months of the loss. Ten parents (5 couples) discussed results with a pathologist within nine months of the death. No couple saw both. Few (3) of the 41 parents who discussed postmortem resdts with either a paediatrician or pathologist suffered from unresolved anger or guilt. But most parents ( 17 out of 23) whose anger or guilt feelings ( 19 out of 31) remained unresolved at a mean interim of 2.9 years of the loss had not received postmortem information. 5% of parents (4 out of 69) had contact with a medical social worker. Satisfaction with hospital professionals who had contact with parents was high, particularly with the nurse and paediatri- cians (Table II).

Community support systems Aftercare at community level was limited (Table II). The

majority of parents were contacted by their family doctors about the loss. Half the families had contact from the Public Health Nurse about the death, though all had been previously visited by the service. Most families (95.7%) received no social work support. Satisfaction with these services was low, with the exception of the Gardai whom the majority of parents (74.6%) felt carried out the task of having the child's body identified with sensitivity. Nurses often learned of the death by accident from neighbours, or parents themselves on routine visits, resulting in delayed contact and sometimes check up reminders to parents for a child who had died.

TABLE II Health Professional Support : Hospital and Community

N=69 parents (40 mothers : 29 fathers)

Professional Parents % Satisfied % contacted

Casualty Nurse 69 100.0 94.2 Paediatrician 29 42.0 82.8 Junior Doctor 34 49.3 72.5 Pathologist 10 14.5 60.0 Med. Social Worker 4 5.8 100.0

Public Health Nurse 36 52.2 22.2 Family Doctor 48 69.6 27.1 Social Worker 3 4.3 100.0

Gaxdai 67 97.1 74.6

284 PoweH I.J.M.S. 1991

Self help voluntary support A third of parents (36.2%) had contact with the Irish Sudden

Infant Death Association (14 mothers : 11 fathers). Parental involvement varied from telephone information and piovi- sion of SIDS information booklet, to befriending of mothers and group support meetings. Half of those contacted were sat- isfied.

Parental attitudes towards Social Support Systems Prompt, frequent or intermittent contact was useful to

parents, if people were knowledgeable about SIDS in particu- lar or bereavement in general. Conversely, inappropriate af- tercare related to perceived discomfort in others talking about SIDS, delayed, scant, avoided or lack of contact about the loss. The peak time during which the majority of parents (82.6%) would have accepted health proI~ssional support if offered, was between one and three months of the death. Some emphasised the need for support when family and friends "got back to their own lives" implying informal help subsided early, while others felt "in a limbo" once the hospital role ceased.

Discussion Aetiological hypotheses relating to SIDS have travelled

full circle in the last century. Templeman, writing in 1893 in the Edinburgh Medical Journal about what we now know as SIDS, ascribed the cause to intoxicated and neglectful parents suffocating their children and advocated imprisonment as a deterrent to future miscreants TM. One hundred years later suffocation is again postulated as a cause of death in some babies labelled as dying from SIDS1L In the interim, Wooley's 1945 experiments disproving smothering of infants with bedclothes, replaced the incarceration of parents by zealous epidemiological research TM. By the 1960's unexplained infant deaths had become a respectable research topic under the new name of SIDS 19. Multiple investigations followed, in the hope of identifying a cause and developing a means of prevention. Apnoea, cessation of breathing 2~ viral infection 7 and lung collapse 21 were postulated causes. Breast feeding as a form of protection against SIDS and vitamin deficiencies as a con- tributory factor have been examined and discarded 22. Re- cently factors such as immunization z~, the unsafe use of water mattresses u and over heating and sleeping in the prone posi- tion ~ were proposed or refuted by various authors.

While medical research has contributed to the recognition of SIDS as a distinct, albeit ill understood syndrome, the causation of which may be multifactorial, "there is, as yet, no consensus as to the pathogenesis of the condition, the identi- fication of children at risk or prevention treaUnent ''26. In less doubt, is the emotional and social impact suffered by the surviving family.

Grief and mourning are emotions by which surviving family members gradually acknowledge, cope with and ulti- mately adjust to the reality of interpersonal loss 27. The expression of grief affects e.g. anxiety, depression, guilt, anger and loss of meaning in life are thus normal, necessary components of a healthy mourning process. It is extreme, prolonged or suppressed grief reactions which represent an incomplete form of grief adjustment 28, and has been found to

lead to abnormal behaviour and distorted interpersonal rela- tionships 29,3~ Sucll protracted unresolved grief, particularly parental guilt has been attributed to the lack of aetiological knowledge of the syndrome 31~zs. In this study, features of pathological (unresolved) anger or guilt was found primarily among parents who did not receive postmortem results. Infor- mative discussions with a Paediatrician or Pathologist pro- vided relief to parents and seemed to prevent abnormal pat- terns of guilt and anger developing, thus enabling parents to progress past the circumstances of the death to the tasks in- volved in reparative mourning. A system of postmortem review and explanation of the individual circumstances of the child's death with parents over a few sessions during the acute reaction stage of grief (0-3 months bereaved), described by Emery (1972) and Ward (1988) can minimise the unnecessary psychological trauma which parents are subjected to as part of the process of the exclusion of unnatural death 33,34.

Marital disharmony as found in this study is also reported in smaller studies. Cornwall (1977) found fathers often accused mothers of unnecessarily prolonging the grief, while mothers sometimes feared spouses blamed them for the death 35, and Mandell (1980) describes fathers' need to keep busy with increased work and present a stoic response to SIDS 36. The grief outcome is improved when couples mourn together and facilitate each other's grief ~7. The majority of couples reported here described differences in how they coped with the grief and some had never been able to talk to each other about the death and their despair.

In this study, parents expressed need for informative, em- pathic social support during the acute crisis period (0-3 months bereaved), is consistent with crisis intervention theory which claims that people in crisis are more receptive to professional help than under normal conditions 38. It also suggests that S IDS information is only one part o f the required social support continuum. When interpersonal support is lacking, professional help is especially necessary and the most significant impact of intervention derived 39,4~ The lack of a co-ordinated professional aftercare policy beteween hospital and community systems, meant that the relative inadequacy of parents' interpersonal support was not fully compensated for. Though the majority of both mothers (90%) and fathers (72%) retrospectively stated the need for health professional sup- port, few had the initiative to seek it. Thus parents in crisis following a SID in the family need to be reached out to by Health Professionals.

The major resposibility for arranging follow-up support lies with the hospital, to link parents with community re- sources, mutual support groups and direct them to published material about SIDS 41. Medical social workers in Casualty units are in a primary position to screen SIDS families, assess the stability of the parental relationship, those with limited interpersonal social support, and link families accordingly with community resources, especially family doctors and public health nurses. They have an important interventionist role with SIDS families in clarifying misunderstandings about the death, facilitating parents' expression of grief, and inter- preting their experience of normal, extreme, prolonged or sup- pressed griet a~

Vol. 160 Sudden infant death syndrome 285 No. 9

Helping the bereaved to understand and accept their loss is not an easy task. Bereavement counsellors must be knowl- edgeable about SIDS, the process of mourning and be com- fortable and confident in that role. Such an orientation seems more appropriately that of the health professional than par- ents, family or friends who are often themselves too dislressed to provide the necessary solace, and it is inappropriate to leave to the voluntary sector, a task which health professionals find difficult to do themselves.

This study offers an understanding of the influences of grief due to SIDS on family life. A planned crisis intervention approach to SIDS families is recommended at hospital and community level, to provide professional bereavement coun- selling to enable parents to work through traumatic grief effects and move from a state of anger, failure and despair towards a viable sense of meaning to life without the comfort of the child they have lost.

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