American Journal of Public Health Vol.67, pp.612-615, 1977.
Environmental Correlates of Pediatric Social Illness: Preventive Implications of an Advocacy Approach
Abraham E. Morse JD, James N. Hyde, Jr., MS,
Eli H. Newberger, MD, and Robert B. Reed, PhD
Abstract:
A controlled prospective study of child abuse and neglect, failure to thrive, accidents and poisonings included 303 inpatients and 257 outpatients. Analysis of maternal interview and clinical data demonstrated significant differences between cases and controls in summative indices of environmental stress, including housing, employment, and access to essential services.
The associations with a postulated common causal underpinning of these illnesses argue for a broadened, ecologic conceptualization of etiology and 41 wider range of preventive approaches. A family advocacy program addressing the stress issues and utilizing community based individuals was offered to families with pediatric social illness and to a comparison group. Indirect corroboration of the impact of environmental crisis is indicated by the prevalence of requests for this help in inpatient cases of abuse (38 per cent) and ingestions (38 per cent) vs. controls (14 per cent). Discriminant function regression analysis of data from the maternal interview demonstrates similarity between the attributes which most saliently describe the abuse group and those which describe the users of advocacy. (Am. J. Public Health 67:612-15, 1977)
Pediatric Social Illness
Child abuse and neglect, accidents, poisonings and failure to thrive are known to have familial child developmental, and environmental antecedents.1-3 We have yet, however, to develop a rational have of practice for these disorders.
The child and the environment may be forgotten in child abuse and neglect case management, because the diagnostic labels “abuse” and “neglect” focus attention on hurtful acts and their perpetrators. Clinical approaches to accidents, poisoning and failure to thrive derive from implicit conceptual models of chance or idiopathic occurrence in the names of these “social illnesses”. They focus clinical attention on the child’s symptom which may be treated while the familial and environmental antecedents and concomitants of the symptom are ignored.
In order to develop a more nearly adequate illness classification scheme for this group of disorders, we designed a controlled, epidemiologic study in which we interviewed 560 mothers and reviewed medical data on their children. Subject children were under four years of age. Three hundred three cases of child abuse and neglect, accidents poisonings, and failure to thrive were matched on age, ethnic status, and socioeconomic status wilt a comparison group of 257 children with comparably acute illnesses of organic origin.
A maternal interview explored past and present events, realities, and stresses which seemed to bear on the capacity of the child’s nurturing context to support his growth and protect him from harm. The central hypothesis was that these “social illnesses” are related, and that their common etiologic underpinning includes important elements of stress in the family before, during, and after the birth of the child.
Of particular interest was the impact on a family’s protective capacity of stresses originating in the present life context. The interview focused strongly on such issues as access to essential services, including housing, health, and child care, and we were particularly concerned to identify social isolation of families.4 We were not surprised to find a high prevalence of these problems in the families of children bearing the diagnosis of child abuse.
Because of the large number of families whom we set out to interview, we perceived an ethical dilemma: could we possibly ignore the problems which we would identify? Did we have a responsibility, having identified such issues, to offer help to the families of children in both the case and comparison groups? We concluded that there was no getting away from this responsibility, and so, when interviews for the Family Development Study started in December 1972, we also began a family advocacy program.
Detailed results of the interview study are reported elsewhere.5 In general the data support the basic hypothesis that differential levels of hypothesized stresses and personal and social strengths contribute to the occurrence of “pediatric social illness.” They indicate that child abuse is associated with more disparities between stress and strength than the other illnesses studied. A discriminant function developed to distinguish between abuse and all other inpatients studied placed most weight on the following variables: 1) recent moves, 2) lack of a telephone, 3) mother-child separations, 4) serious childhood troubles for the mother, 5) few children, 6) father older, and 7) low job status for the father.
This paper describes the unique qualities of those families who requested and received help for environmental problems identified in the course of the research interviews. The total sample contained roughly equal proportions of patients who were male and female, white and non-white, under and over 18 months, and with and without publicly-assisted medical payment. The outpatients were slightly younger, with more non-while and publicly-assisted medical payment than the inpatients.
One hundred twenty-one of the mothers interviewed during this study accepted the offer of advocacy assistance for one or more of their current problems. Those who accepted advocacy assistance were distributed over all of the illness categories. The advocacy group included 50 mothers of inpatients and 71 mothers of outpatients.
Family Advocacy Defined
Family advocacy is an intervention concept which addresses present-day life-context problems of families. By working to assure access to essential services (housing, health, child care, educational, welfare, and legal, for example) family advocacy endeavors aggressively to change – to better – the ecologic selling for child-rearing and to foster the development and functioning of adults and children. Advocacy services developed by our program do not seek to replace other more: traditional forms of social intervention. We are concerned, though, to stimulate a more appropriate response to our clients��� needs and to force more productivity from the service system for their benefit.
A distinctive characteristic of family advocacy as an intervention process is that it deals primarily, if not exclusively with the present.6 Advocacy is distinguished from social casework by this time orientation, by an orientation to direct provision of help rather than toward effecting change through counseling, and by the advocates’ educational and personal backgrounds. Advocates need not have a college degree, but must be effective people who have learned how to deal with children, adults, professionals, and bureaucrats in a range of institutions. (We engaged and trained two such individuals to serve as advocates for families whose problems were identified in the context of our research interviews.)
By working with parents around specific environmental and social problems, advocates help them to develop a renewed sense of personal efficacy and control, and parents begin to see themselves not as passive victims but as active agents, better able to control their physical and psychological environment, as well as that of their children. The principal tools which the advocates use are:
- Direct and intensive contact with the family at the time of referral through home visits, telephone contacts, and office accessibility. The goals are: a) to develop an open and trusting relationship with the family, b) to define in conjunction with the family the goals and scope of the advocate’s involvement, and c) to establish a division of tasks such that the achievement of goals will represent a joint effort between the family and the advocate.7
- Knowledge of the people, policies, and systems which are available to assist both the family and the advocates in resolving the problems which affect families.8
- Data and information collected in the course of helping families which can be pooled and generalized in order to support broadly focused efforts for institutional and social change.9
During the first few days after referral, the advocate keeps in frequent touch with families both by telephone and through home visits. As a result of this intensive contact, it often becomes apparent that the problems for which families initially request assistance represent only the most immediate concerns. In responding to the range of issues which we identify, we encourage families to use other resources when and where possible so that a protracted dependency relationship between the family and the advocates can be avoided.
It is well to note that all during their work with families the advocates present themselves as members of a hospital “team”, the others being the physician providing the child’s medical care, the nurse, and in many but not all cases, the social worker. The advocate is introduced to the family by a member of the clinical team: no attempt is made to match advocate and family on sex, social class, or ethnic status.
The family advocate is seen by the hospital professional staff as an integrator and facilitator who does not rely on a single method or technique of intervention and who tailors his or her approach to the particular problem at hand.
Thus, while a telephone call to a landlord may be effective in having a family’s heat restored in one situation, it may become necessary in another situation to secure a lawyer and, subsequently, a court order on behalf of the family. Each situation has to be approached with the knowledge that there is a vast range of methods and techniques available, any combination of which may suit the needs of a specific family while proving useless when applied to another.10
Advocacy is not solely concerned with such objective measures of outcome as getting a family a new apartment, securing legal assistance, or finding someone a job. While it is primarily oriented toward securing goods and services for people, advocacy also aims to provide families and individuals with the technical and psychological resources to solve their own problems. The steps that the advocate takes to secure a new apartment for a family, for example, really constitute a learning process for that family, a process which, once learned, may he applied to seeking solutions to other problems. In the long run. What an individual learns about his ability to effect change in his own life may be of far greater significance than the change itself.
Case Examples
The following are two examples of advocacy in cases of childhood trauma:
Case One – Ms. A and her child are seen for their initial visit in the primary care clinic after an original referral from the emergency room, where her six-month-old baby had twice been seen for minor trauma. Ms. A is an angry young woman who immediately becomes hostile towards the physician examining her baby when he asks certain questions about how her child had cut himself. She accuses both the physician and the hospital of unfair practices and of wanting to take away her child. The doctor learns she lives alone with her baby in a cold apartment in a housing project, is afraid to go out, and feels no one is doing anything for her.
The physician asks an advocate to speak with the mother. The advocate talks with her about her housing problem and also, at length, about her concerns as a young mother trying to make a life for herself and her child. Plans are made for a home visit to evaluate existing housing. In addition, the whole purpose of the medical visit is talked out; both sides are understood.
Result: As a result of this meeting, medical treatment is given in a healthy atmosphere and other problems which the mother feels are urgent are addressed. The family is helped to get a better apartment, and they sustain contact with the clinic.
Case Two – A three-year-old boy is seen in the hospital’s emergency room for head contusions which appeared on careful physical examination to have been inflicted. He is brought to the hospital by a relative, who explains that the child had fallen and that his mother is sick and afraid to leave her apartment. The child is admitted to the hospital, where signs of previous trauma as well as a minor bleeding diathesis are discovered. An advocate is assigned to the case and asked to coordinate health care plans for both child and mother.
Attempts to contact the mother via the telephone are unsuccessful, so a home visit is made. At home a sad, lonely, hugely obese young mother is found living in abject poverty on the seventh floor of a housing project in Boston. The neighborhood surrounding the project is extremely dangerous, with a high crime rate legendary in the city. The building itself is in very unsanitary and unsafe condition. The child’s mother says she is in poor health. Her obesity embarrasses her, and she is also afraid to go to the doctor because youths in the neighborhood have threatened to break in to steal the few belongings she possesses. She says that a relative hurt her boy and that she is very concerned but does not know to whom to go for help.
Working in conjunction with a state protective service social worker who concentrates on the mother’s relationship to her child, the advocate obtains a commitment from the Housing Authority to relocate the family in an adequate and safe environment. This is accomplished after weeks of activism against the bureaucratic resistance of local housing officials and policies. During this time, over ten hours are spent in conjunction with the social worker and a community health nurse in a joint, coordinated effort to help the mother meet basic needs and responsibilities.
Result: When this family moved into their new apartment, the mother entered both a new environment and it new period of understanding and competency to acknowledge and to act on her and her child’s needs. Once the family was resituated, plans were made with the mother to enroll her son in a child development program and to receive continuing medical care through a hospital clinic where advocates are based. Also, the mother’s own medical problems were treated. Three years later, the child is physically well and developmentally normal. His mother has lost a considerable amount of weight and she is a happier person. There has been no further abuse. Occasionally, when problem situations arise, she will call, discuss them, and act appropriately, on her own.
Distinctive Characteristics of the Users of Advocacy
In order to gain a better understanding of factors involved in a mother’s accepting the offer of advocacy within the context of our study, discriminant functions similar to those used to identify characteristics of the various pediatric social illnesses were calculated to distinguish between the advocacy and non-advocacy groups. For the entire sample of 560 interviews a moderate amount of discrimination was achieved (R = .31). Of the 121 mothers who made use of advocacy, 62 were parents of children with pediatric social illness (of whom 10 were cases of child abuse and neglect) and 59 were parents of children in the comparison group. They are characterized in relation to the group which did not request advocacy by these attributes: 1) short duration of present marriage, 2) problems with housing (plumbing. electricity, heating, telephone. repairs), 3) problems with child-rearing (feeding, sleeping, discipline), and 4) short residence of present address.
All of these variables entered the regression equation at the 5 per cent or greater significance level. The second and third are indicative of the types of problems with which our advocacy services dealt-housing and child care. The first and fourth-short duration of present marriage and residence-suggest the possible absence of supports needed to cope with environmental problems.
TABLE 1 | ||
Characteristics of Users of Advocacy Services | ||
Total Sample |
Inpatients |
Outpatients |
N = 560 |
N = 303 |
N = 257 |
R = .31 |
R = .33 |
R = .39 |
(1) Short duration present marriage |
(1) Serious troubles in mother���s childhood |
(1) Problems with housing |
(2) Problems with housing |
(2) Short duration present marriage |
(2) Short residence at present address |
(3) Problems with child-rearing |
(3) Problems with child-rearing |
(3) Few people accompanying child to hospital |
(4) Short residence at present address |
|
(4) Underemployment of father |
*Variable significant at the 5 per cant level or more, listed in the order in which they entered the discriminant function equation.
These findings are similar to those expressed in a priori stress scales which significantly distinguish pediatric social illness from the comparison group and which are particularly powerful for the child abuse group.*
When discriminant functions were run separately within the inpatient and outpatient advocacy and non-advocacy groups slightly higher discrimination was achieved (R = .33 for inpatients, R = .39 for outpatients). There was a difference, however, in the variables entering the regression equations across the two groups. Among the four variables that entered the discriminant function for the total sample, child-rearing problems and short duration of present marriage characterized the inpatient users of advocacy, while problems with housing and short duration at present address were characteristic of outpatient users of advocacy, irrespective of whether their children were classified for study purposes in the social illness case or in the comparison group.*
Additional variables entered the discriminant function for inpatients and for outpatients. Among inpatients the first variable to enter the equation was a history of serious troubles in the childhood of the mother (broken home, high mobility. or illness in family). Among outpatients, underemployment of the father was an additional distinguishing attribute of mothers who accepted advocacy services.
Discussion
We interpret these findings to mean that users of advocacy, as a group, suffered environmental and familial stresses similar to those which are involved in the etiology of pediatric social illness and that they may be associated with risk of child abuse in the individual case. A sensitive discussion of the meaning of stress in child abuse by Steele emphasizes its importance but warns against an overly simple formulation of cause and effect. One must also consider the personal background of the individual, especially early childhood abuse or neglect, which may predispose to the use of “aggression as a means of problem solving, accompanied by a lack of empathy for other humans, a diminished ability and impoverished repertoire to cope with stress, and a vulnerability to the examples of aggression and violence presented by society and culture.”11
Environmental forces appear from these data to exert a powerful impact on families, both those whose children hear signs of pediatric social illness, and those with other acute medical conditions. If as it appears the former group suffers more, we must pay heed. A counseling approach will not suffice to cure the lack of access to essential services. Simply to attribute the environmental problems to the parents of these children is to “blame the victim.”12 Family advocacy at the case level can work effectively to reduce stress, originating in the life context and to foster a family’s ability to utilize services for its children.
We conclude that family advocacy has important preventive implications. In our enthusiasm for its success on the individual cases with which we have worked, however, we need ever to he mindful of the great numbers of children and families who are deprived of essential resources. To address the whole population in need will require both larger-scale epidemiologic documentation and advocacy for change at institutional and governmental levels.13-14
REFERENCES
- Gregg, G. S. Elmer, L Infant injuries: Accident or abuse? Pediatrics 44:434, 1969.
- Koel, B. S. Failure to thrive and fatal injury as a continuum. Am. J. Dis. Child. 118:51, 1969.
- Newberger, E. H., Newberger. C, M., Richmond. J. B. Child health in America: Toward a rational public policy. Milbank Memorial Fund Quarterly/Health and Society 54:249, 1976.
- Cobb, S. Social support as a moderator of life stress. Psychosomatic Medicine. 38:300, 1976.
- Newherger, E. H., Reed, R.B., Daniel, J., Hyde, .J. N., Kutelchuck, M. Pediatric social illness: Toward an etiologic classification. Pediatrics, 1977, in press.
- __ Germain, C. B. Time: An ecological variable in social work practice. Social Casework 57:419, 1976.
- __ Milio, N. A framework for prevention: changing health-damaging to health-generating life patterns. Am. J. Public Health 66:435, 1976.
- Children’s Defense Fund. Doctors and Dollars are Not Enough. Washington Research Project, Inc., Washington. DC 1976.
- Knitzer, J. E. Child advocacy: A perspective. Am. J. Orthopsychiatry 46:200. 1976.
- Wingert, W. A., Grubbs, J., Lenoski, E. F., Friedman, D. B., Effectiveness and efficiency of indigenous health aides in a pediatric outpatient department. Am. J. Public Health 65:849, 1979.
- Steele, B. F. Violence within the family. In Child Abuse and Neglect: The Family and The Community, edited by Helfer, R. E., Kempe, C. H.. (p. 3) Cambridge, MA: Ballinger Publishing Company, 1976.
- Ryan, W. Blaming the Victim. New York: Random House, 1971.
- McCormick, M. J. Social advocacy: A new dimension in social work. Social Casework 51:3, 1970.
- Miller, C. A. Societal change and public health: A rediscovery. Am. J. Public Health 66:54, 1976.
ACKNOWLEDGMENTS
This study was supported in part by a grant from the Office of Child Development, Department of Health, Education, and Welfare (Project OCD-CB-141).
From the Department of Medicine, Children’s Hospital Medical Center, Boston; and the Department of Pediatrics, Harvard Medical School. Dr. Morse is Administrator, Family Development Study, and Research Associate in Pediatrics, Harvard Medical School; Mr. Hyde is Director of Preventive Medicine, Massachusetts Department of Public Health; and Dr. Reed is Statistical Consultant, Family Development Study, and Professor of Biostatistics, Harvard School of Public Health. This article, submitted to the Journal December 10, 1976, was revised and accepted for publication January 30, 1977. This study was presented in part at the 1976 Annual Meeting of the American Public Health Association in Miami Beach.
*The weighting of the advocacy group toward more serious environmental problems is undoubtedly affected by the inclusion of ten child abuse cases, but this small number docs not substantially diminish the significance or representativeness of the data on the total group.