1 Department of Epidemiology, School of Public Health and Community Medicine and
2 Department of Pediatrics, School of Medicine, University of Washington, Seattle, WA 98195, USA
Received 1 December 1999; in revised form 11 April 2000; accepted 5 May 2000
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ABSTRACT |
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INTRODUCTION |
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Although women who have one affected child often have more, to date there are no anticipatory biological or sociological markers that distinguish the mothers of children with FAS from other women who drink in pregnancy and bear normal or nearly normal children. Treatment of women for alcoholism during pregnancy probably comes too late to prevent brain damage in affected fetuses, even if the correct high-risk, alcoholic women are selected for therapy. While it would be ideal to identify and treat all alcoholic women prior to pregnancy, resources for such an effort are not available. However, each patient with FAS (as identified through a FAS diagnostic clinic) has a mother who has a proven ability to give birth to a child damaged by prenatal alcohol exposure. Focusing prevention efforts on this select and high-risk group of women could reduce the incidence of FAS births dramatically without overburdening the current healthcare and alcohol treatment system (Clarren and Astley, 1998).
A Cooperative Agreement with the Centers for Disease Control and Prevention (CDC) from 1992 to 1997 allowed the development of a FAS diagnostic clinic at the University of Washington to: (1) assess the feasibility of using a FAS diagnostic clinic as a centre for identifying and targeting primary prevention intervention to high-risk women; (2) generate a comprehensive, lifetime profile of their birth mothers as a first step in the development of a FAS primary prevention programme targeted to meet their needs; (3) identify factors that have enhanced and/or hindered the birth mothers' ability to achieve abstinence.
The methods and outcomes of this FAS diagnostic and prevention project are presented in two parts. In the first report, the objectives and methodology for the entire project and a summary of the project's success at identifying high-risk birth mothers through the diagnosis of their children (objective 1) have been made (Astley et al., 2000). In this second report, we present a lifetime profile of 80 women who gave birth to a child with FAS, and identify factors that enhanced and hindered their ability to achieve abstinence and/or practice effective family planning (objectives 2 and 3).
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METHODS |
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Analysis
t-Tests and paired t-tests were used to compare outcomes between two independent or paired groups respectively when outcomes were measured on continuous scales. 2-Tests and Fisher Exact tests were used to compare outcomes between two independent groups when outcomes were measured on nominal scales. Wilcoxon Signed Rank tests and McNemar tests were used to compare proportions between two independent or paired groups respectively, when outcomes were measured on ordinal scales.
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RESULTS |
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Representativeness of the maternal and patient study populations
The maternal population that the FAS Diagnostic and Prevention Network (DPN) clinics will target for primary prevention efforts are the birth mothers of children with FAS and static encephalopathy who can be identified and located with reasonable effort and live within Washington State where they are eligible to receive social and healthcare services. This target population is defined by the eligibility criteria presented above for this study. Eighty of the 92 women (87%) confirmed to be eligible to enrol in this study were enrolled and interviewed. A more detailed summary of the representativeness of this study population is presented in Part I of this series (Astley et al., 2000). Based on the percentage of women interviewed (87%) and the profiles of the eligible women who did (n = 80) and did not enrol (n = 12), this study population is regarded as being highly representative of the target population.
Profile of the 80 children whose mothers were enrolled
A profile of the 80 children whose mothers were enrolled in the study is presented in Part I of this series (Astley et al., 2000). They were predominantly Caucasian, 7.8 years of age at the time of their diagnosis, with over half no longer living with their birth mothers at the time of the diagnosis. Eighty-nine per cent had a gestalt or 4-Digit Diagnostic Code diagnosis of FAS or atypical FAS (AFAS); the remaining 11% had a 4-Digit Diagnostic Code diagnosis of static encephalopathy/ alcohol exposed without the full FAS facial phenotype. These were the diagnostic outcomes used to determine the birth mother's enrolment eligibility.
Maternal sociodemographic and mental health profile
A comprehensive, lifetime profile of the 80 birth mothers was generated, documenting their sociodemographics, social and healthcare utilization patterns, adverse social experiences, and mental health (Tables 1, 2, 3 and 4 respectively). Due to the volume of data collected, only selected portions of this profile are presented in this report. Briefly, these women were on average 21 years of age at the birth of their first child, 27 years of age at the birth of the index child, 35 years of age at the diagnosis of the index child, and 38 years of age at the time of study enrolment. The study population was predominantly Caucasian, closely resembling the racial distribution of Washington State with a slight over-sampling of Native Americans. Their children were on average 7.8 ± 5.9 (range 0.1 to 24.2) years of age at the time they were diagnosed. The average maternal IQ was 90.0 ± 15.2. Sixty-one per cent did not complete high school; 25% had some college education. Fifty-nine per cent had a gross annual household income of less than US$10 000 at the time of the interview; 78% were in this income bracket at the time of the index child's birth. Ninety-five per cent had been physically or sexually abused during their lifetime. Ninety-six per cent had one to 10 mental health disorders with the most prevalent being post-traumatic stress disorder (77%) and simple phobia (44%).
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Contrasts between women who had and had not achieved abstinence
Contrasts between the 50 women who had achieved abstinence by the time of the interview and the 25 women who were not abstinent at this time point are presented in Table 10. The women who had achieved abstinence had, on average, significantly higher IQs, higher household incomes, larger more satisfactory social support networks, and were more likely to report a religious affiliation. While they were equally likely to have mental health disorders, those who had achieved abstinence were more likely to have received treatment for their mental health disorder(s). Those who had achieved abstinence reported higher levels of drinking just before the birth of the index child and were more likely to have parents who had problems with alcohol use. They were comparable in race, education, employment, adverse experiences such as physical/ sexual/emotional abuse, age at the interview, age at first abstinence attempt, age at first pregnancy, age at birth of index child, and age when first started drinking.
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DISCUSSION |
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Mental health
The co-occurrence of alcoholism with other mental health disorders has been widely recognized (Regier et al., 1990; Sheehan, 1993
). Kessler et al. (1997) reported on patterns and correlates of psychiatric morbidity and co-morbidity based on data from the National Co-morbidity Survey, a nationally representative household survey of 8098 men and women between 18 and 54 years of age. Interviews were conducted face-to-face, with an 83% response rate. Diagnoses were made according to DSM-III-R criteria, using a modified version of the Composite International Diagnostic Interview (World Health Organization, 1990
). Lifetime co-occurrence of mental health disorders among the subset of 299 women with diagnoses of alcohol abuse were as follows: post-traumatic stress disorder (10.5%), depression (30.1%), simple phobia (28.2%), social phobia (24.1%), antisocial personality (2.1%), agoraphobia (9.3%), generalized anxiety disorder (8.4%), mania (3.8%), and panic disorder (7.3%). The proportion of women with alcohol abuse who had a first onset of a disorder prior to the onset of alcohol abuse were as follows: post-traumatic stress disorder (10.5%), depression (30.1%), simple phobia (28.2%), social phobia (24.1%), antisocial personality (2.1%), agoraphobia (9.3%), generalized anxiety disorder (8.4%), mania (3.8%), and panic disorder (7.3%). Social phobia, simple phobia, depression, and drug dependence were highly predictive of subsequent development of alcohol abuse in Kessler's study population. In comparison, the prevalence of mental health disorders in our population of 80 women appeared to be much greater and more likely to precede the onset of their alcohol abuse (Table 4
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Physical/sexual abuse
Physical and sexual abuse is prevalent among alcoholic women. Covington (1982) reported that 12 to 53% of alcoholic women report incest or other childhood sexual abuse and up to 74% report some type of childhood or adult sexual abuse. Our study revealed that childhood and/or adult sexual abuse occurred in 73% of the 80 women. Almost all (95%) were sexually and/or physically abused during their lifetime. Women who suffer from abuse may become increasingly depressed, anxious, and fearful of violence in their lives (Root, 1989). This latter author suggested that many women who relapse following substance abuse treatment are unable to cope with ongoing physical or sexual abuse without using alcohol or other drugs, and contended that substance abuse treatment personnel need to be familiar with the syndrome of domestic violence and abuse, because intervention will be unsuccessful if issues of past and current abuse are not addressed during substance abuse treatment. Beckman (1980) reported that alcoholic women were more likely to report that they felt powerless and inadequate compared to non-alcoholic women, and stated that these findings support the contention that heavy alcohol consumption is a coping mechanism likely to be used by women to relieve feelings of helplessness and powerlessness (Beckman, 1984a
). The use of alcohol and other drugs has become a way for women to deal with the emotional pain resulting from earlier abuse by someone close to them, someone they trusted (Covington and Surrey, 1997
). Ninety-four per cent of the women in our study reported that they did not want to reduce their alcohol use because alcohol helped them cope. Seventy-two per cent reported that they did not want to reduce their alcohol use because they were in an abusive relationship or they were too depressed to do anything about it (79%).
Social support
Social support has often been reported in the literature as an important enabling factor in reduction of alcohol dependence. In a study of 400 Anglo-alcoholics in treatment for alcoholism, Beckman (1984b) reported that females who completed treatment were more likely to have greater social support for treatment entry. The 50 women who achieved abstinence in our study reported having significantly larger, more satisfactory social support networks, than the 25 women who failed to overcome their alcohol dependence. Their social support networks included family, friends, and service providers.
Alcohol treatment
In 1992, a survey was conducted of 79 Seattle and King County non-profit and for-profit alcohol and drug treatment agencies to assess the availability of gender-specific treatment for women (SeattleKing County Task Force for Chemically Dependent Women, 1993). The agencies reported that 33% of their clientele were women of whom 73% were Caucasian, 14% were African American, and 5% were Native American: 73% were between 21 and 40 years of age. Eighty-four per cent of the providers did not provide on-site childcare, 54% did not offer medical or mental health services at the agency site and 44% did not offer on-site recovery support groups such as Alcoholics Anonymous. When the providers were asked what they believed to be the major obstacles for women securing treatment, the top three barriers reported were childcare, money, and social stigma. These are certainly troubling statistics in the light of the data collected in our study. Ninety-six per cent of the 80 women had one or more mental health disorders and the women who received mental health treatment were significantly more likely to achieve abstinence than women with mental health disorders who did not receive treatment. Sixty to 70% of the 80 women reported that they were taking care of one or more children during their reported abstinence attempts. Women who achieved abstinence were significantly more likely to participate in an aftercare programme, like Alcoholics Anonymous. Women who had failed to achieve abstinence had significantly lower incomes.
Beckman and Amaro (1984) reported that, although the relative success of different types of alcoholism treatment has long been debated, there is some evidence that treatment programmes, regardless of their orientation, produce more positive and lasting outcomes than does doing nothing for the alcohol abuser. It is interesting to note that, while 39 of the 50 women who achieved abstinence in our study reported seeking help outside their home during their most successful abstinence attempt, only 31 reported being admitted to an inpatient and/or outpatient programme and only 26 reported completing the programme(s). Beckman and Amaro (1984) also reported that, to accept help for an alcohol-related problem, a person generally must first perceive the existence of the problem and be willing to attempt to control it. In our study, the women who achieved abstinence were significantly more likely to report concern for their health and a desire to stop drinking, than the women who did not achieve abstinence.
Beckman and Amaro (1984) reported that characteristics related to the individual that affect the person's ability to secure, and inclination to use, services include: (1) individual predisposing factors, such as age and ethnicity; (2) attitudes and beliefs regarding alcohol, treatment, and health; (3) personal enabling traits, such as personality characteristics and drinking and treatment history; (4) social enabling characteristics, such as childcare responsibilities, social support systems, and access to financial resources. The predisposing factors of age and ethnicity are immutable. Some mutable predisposing factors, such as education and income, may be changed through both policy and individual efforts, whereas other mutable predisposing factors, such as religion or marital status, are more often changed through individual decisions (Beckman, 1984a,b
). In a study of moderately drinking women entering a programme for drinking reduction (Walitzer and Connors, 1997
), contrasts between the 120 women who completed the treatment with the 51 women who did not complete the programme were comparable to the contrasts observed in our study (Table 10
), despite the marked difference in the drinking levels of the two study populations. The moderately drinking women who did not complete treatment were significantly younger, more likely to have a racial background other than Caucasian, more likely to be single or divorced, had fewer years of education and reported more drinking per day at pretreatment, relative to the women who did complete the programme. Several factors that significantly differentiated the women who did, from those who did not, achieve abstinence in our study are potentially mutable (e.g. income, social support network, and mental health treatment).
Family planning
Avoiding alcohol use during pregnancy is just one of two ways to prevent FAS. The other is to prevent pregnancy during alcohol use. While the former reduces health risks to both mother and child, the latter is purported by some to be the more simple and immediate means to an end. Both approaches are complex and resistant to change. While society might view the alcohol use and unintended pregnancies of these women as problems in their lives, these women often perceive their alcohol use and pregnancies as partial solutions to their problems. They report that alcohol helps them cope with their often abusive and impoverished lives. Pregnancy and children not only qualify them for social and healthcare services they might otherwise not receive, they also fulfil an innate desire to bear and raise children. Based on the data collected in this study, it would appear that the women were more successful at avoiding alcohol use than preventing pregnancy. This could be due, in part, to the astonishing lack of access women have to contraceptives. In 1987, 22 years after the US Supreme Court affirmed the legality of contraceptive use in Griswold vs Connecticut, 57% of pregnancies nationwide were unintended (Forrest, 1994). In 19931994, new mothers in Washington State had approximately the same frequency of unintended pregnancies resulting in a live birth as the nation as a whole: 40% in Washington compared with 39% nationwide in 1988 (Brown and Eisenberg, 1995
; Pregnancy Risk Assessment Monitoring System, 1996
). The women in our study reported that 78% of their first live born children were the result of unintended pregnancies; 60% of them were exposed to alcohol. There are many reasons why a woman does not practice effective birth control. One is access to affordable birth control. In a 1998 survey conducted by the Office of the Insurance Commissioner, to determine the level of reproductive health benefit coverage in health insurance plans marketed in Washington State, 77% of the insurance plans paid for abortions while only 30% provided coverage for contraceptives. Worse yet, the percentage of individuals actually receiving coverage was lower; four out of five women do not have coverage for contraceptives (Senn, 1998
). Lack of access was not the only reason that women in our study did not use birth control. They were equally likely to report that their alcohol and drug use interfered with their use of birth control and that their partners did not want them to use birth control. Only 10% reported that they felt birth control was wrong or against their religious beliefs. In fact, 78 of the 80 women reported using some form of birth control during her life (diaphragm, intrauterine device, cervical cap, pill, Depo Provera, Norplant, condoms, rhythm method or withdrawal) suggesting that few were opposed to birth control.
Current status of the Washington State FAS DPN primary prevention programme
The FAS DPN is currently working with Washington State to facilitate referral of high-risk women identified through the FAS DPN to appropriate primary prevention intervention services. Through this comprehensive approach to FAS diagnosis and prevention, we hope to reduce measurably the incidence of FAS in Washington State.
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ACKNOWLEDGEMENTS |
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FOOTNOTES |
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REFERENCES |
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