Extraordinary Care for Extraordinary Conditions: Constructing Parental Care for Serious Mental Illness in Japan

This article presents an account of how Japanese parents in a family support group for mental illness constructed understandings of care for adult children with serious mental illness, primarily schizophrenia. I build from Janis H. Jenkins’s research on the “extraordinary condition” of schizophrenia to discuss “extraordinary care,” which parents practiced as a way to refute cultural and clinical beliefs about pathogenic families and degenerative diseases. Parents’ accounts of extraordinary care revealed a reliance on biomedical knowledge to treat the symptoms of mental illness coupled with an ongoing determination to improve children’s lives beyond what psychiatry could offer. Extraordinary care thus points to the therapeutic limits of biomedical psychiatry while also reinforcing the significance of social relations as families work toward recovery.     

Problems of the single-parent family unit

Case reports on single-parents families demonstrate some unique problems with which such a family unit must cope. Single mothers frequently present children to the family physician, pediatrician or child psychiatrist with specific symptom complaints. There exists a need to recognize that these symptoms may reflect the special problems of the single-parent family or unresolved issues which led to the formation of the unit.To meet the needs of these parents the physician must explore the specific circumstances of such a family in some depth. Nonjudgmental recognition of their problems may decrease the tendency to view these problems as “psychiatric”. Increased awareness of this entity as a new social unit will help the physician choose proper techniques and appropriate resources to provide support.     

Ambivalence toward small families in rural Latin America

Data from a rural fertility survey conducted among 6814 15-49 year old women in Costa Rica. Colombia, Mexico, and Peru in 1968 and 1969 is used to determine social definitions of large and small families and advantages and disadvantages associated with family size. Large families were defined as having between 9.5-10.7 children. Small families were defined as having 3.2-4.0 children. 79% found disadvantages to large families (costs and/or influence of cost factors on family well being) compared to 38% for small families (better care for children and better off economically). More than 1/2 the women preferred small families to large, with less than 10% preferring large families. The mean number of children considered ideal was 4.6-6.3. 35-59% wanted no more children.     

Mental health problems of homeless children and families: longitudinal study

Objective: To establish the mental health needs of homeless children and families before and after rehousing. Design: Cross sectional, longitudinal study. Setting: City of Birmingham. Subjects: 58 rehoused families with 103 children aged 2-16 years and 21 comparison families of low socioeconomic status in stable housing, with 54 children. Main outcome measures: Children’s mental health problems and level of communication; mothers’ mental health problems and social support one year after rehousing. Results: Mental health problems remained significantly higher in rehoused mothers and their children than in the comparison group (mothers 26% v 5%, P=0.04; children 39% v 11%, P=0.0003). Homeless mothers continued to have significantly less social support at follow up. Mothers with a history of abuse and poor social integration were more likely to have children with persistent mental health problems. Conclusions: Homeless families have a high level of complex needs that cannot be met by conventional health services and arrangements. Local strategies for rapid rehousing into permanent accommodation, effective social support and health care for parents and children, and protection from violence and intimidation should be developed and implemented.

Key messages

• Homeless children and their mothers have a high level of mental health problems
• Homeless families experience many risk factors, such as domestic violence, abuse, and family and social disruption
• In two fifths of children and a quarter of mothers, mental health problems persisted after rehousing
• In contrast with a comparison group of families of low socioeconomic status, a substantial proportion of homeless families remained residentially and socially unstable

     

Discussion: pre-zygotic rights

Silverman uses Warnock's article "Do human cells have rights?" (Bioethics 1987 Jan; 1(1): 1-14) as the springboard for a brief discussion of decision making in the care of handicapped newborns. He argues that the parents of these children should have a major role in deciding for or against life-prolonging treatment, because they must live with the consequences. Silverman does not find it surprising that, in reaching their decision, parents are inclined to weigh the competing interests of family members, including those of children not yet conceived whose rights are foreclosed by the drain on the family of an existing handicapped child.     

Family centred care for the neonate -- the view from Wolverhampton

The increased technology of neonatal intensive care has meant that babies born at increasingly lower gestational age are surviving to be discharged home. A family centred approach in neonatal care supports the move toward patient or parent empowerment, which is vital, if babies are to be fully integrated into the family unit. Nurses are essential to the success of this process as they have the most direct and prolonged contact with both family and their baby. Critical care areas such as Neonatal Units (NNU) can be adjusted to support a more family focused philosophy. In Wolverhampton Orems 'Self-Care Model' of self care has been adapted to the family as the self care unit and simple adjustments to the area such as Quiet Times supports families feeling of well being and control.     

Social and emotional complications in a clinical trial among adolescents with diabetes mellitus.

Observations are reported on the social and emotional events occurring among children with diabetes mellitus and their families while taking part in a demanding clinical trial. Participants were selected on the basis of: (1) age over 10 years, (2) "informed consent," (3) cooperation with diabetic care, and (4) family stability. Despite endeavours to apply these criteria, it subsequently emerged that one father had doubts about his daughter participating; one family was suffering from severe marital discord; a girl (11 years) and a boy (10 years) were unexpectedly distressed by the venepunctures required; and another girl (13 years) was falsifying the results of her urine tests. All the families wished to complete the trial, and only one did not because of recurrent hypoglycaemia. The psychosocial problems encountered during the trial were unpredictable and occurred despite selection. Documentation of these problems allowed appropriate emotional support to be offered to the children and their families and provided for a fuller and more reliable interpretation of the trial results than would have been possible from the numerical data alone.     

Living with the dying: use of the technique of participant observation.

Through participant observation, questions concerning optimal care of dying patients and needs of their families were answered. A general surgical ward and a palliative care unit were the sites of observation. The observations support the belief that a palliative care unit, specifically designed to meet the known needs of dying patients and their families, is preferable to a general surgical ward. The main findings, of less concern in the palliative care unit than on the surgical ward, were the following: the importance of patient-to-patient support; the discomfort of sick-role behaviour; the impersonal and sometimes intimidating nature of patient care; the limitation of the patient''s need (as a person) to give as well as to receive; and the value of families, student nurses and volunteers in total care. These findings emphasize the importance of personal interest in relieving the distress suffered by many terminally ill patients.     

Predicting child abuse: signs of bonding failure in the maternity hospital.

Fifty children referred to the Park Hospital because of actual or threatened abuse were compared with 50 controls born at the same maternity hospital. Five factors were significantly more common in the abused group than among their controls: (a) mother aged under 20 at birth of first child, (b) evidence of emotional disturbance, (c) referral of family to hospital social worker, (d) baby''s admission to special care baby unit, (e) recorded concern over the mother''s ability to care for child. Thirty-five of the abused group had two or more of these factors compared with only five of the control group. As these data were collected from information recorded routinely at the maternity hospital, it is possible to identify most abusing families when the child is born. Such identification must lead to a comprehensive assessment of each case followed by constructive preventive action.     

Adaptation of children to a chronically ill or mentally handicapped sibling.

The presence of a chronically ill or mentally handicapped child in a family can be a stress for the child''s siblings, who often are ill informed about the nature and prognosis of the illness, may be uncertain what is expected of them in the caregiving role, may feel their own identities threatened, and may experience ostracism by their friends and misunderstanding at school. Although individual reactions vary widely, feelings of anger, guilt, resentment and shame are commonly reported. Excessive responsibility and concern about one''s identity may add to these feelings and culminate in psychologic problems in the sibling. The physician caring for the family must be alert for symptoms of emotional disturbance or social maladjustment among the siblings of chronically ill or mentally handicapped children and should be prepared to counsel the family or refer them to a counsellor experienced in this area. In general, the first step is to be sure that the sibling is fully informed about the condition and to encourage frank discussion between the parents and the handicapped child''s siblings.     

A prospective study of medical care utilization and morbidity in preschool children belonging to a prepaid group practice: background and methods

The purpose of this paper is to describe the background and methods of a prospective study of medical care utilization and morbidity in a fixed cohort of over 500 preschool children whose families belonged to a prepaid group practice affiliated with Yale University. Following baseline interviews with their mothers, study children were followed for 12 months between 1981 and 1982. Information concerning the subjects' contacts with the health care facility serving members of the group practice was collected from accompanying adults, attending clinicians, and medical records. Using these data, we were able to identify episodes of care, linking all clinical visits and phone calls for single occurrences of an illness or injury. The major aim of the study is to identify psychosocial determinants of pediatric utilization (for both acute and preventive care) and of childhood morbidity. The possible predictors of principal interest are factors associated with the family environment, such as social stress and strain, family structure, and different aspects of the mother's social network. The dual emphasis on both illness and behavior outcomes is based on the important interrelationship between epidemiologic and health services research, especially when examining psychosocial effects.     

Psychologische Aspekte des Diabetes in Kindheit und Adoleszenz

The intensified insulin therapy of type 1 diabetes imposes considerable demands in everyday life of children, adolescents and their families that often interfere with normal developmental tasks. Accordingly current guidelines on paediatric diabetes stated that psychosocial factors are the most important influences affecting the care and management of the chronic illness. This article reviews the main research findings from studies on psychological coping, family burden and dynamics, neurocognitive functioning, stress, psychosocial risk factors, psychological health and psychiatric disorders. In addition psychological support, age-appropriate educational and behavioural interventions as an integral part of every type 1 diabetes long-term therapy are described. Finally the vital role and the current situation of psychologists and social workers as members of the interdisciplinary paediatric diabetes teams especially in the context of the German Disease –Management Program for type 1 diabetes are discussed.     

Prevention of psychosocial problems in children with chronic illness.

Children with chronic illness and disability are at considerably increased risk of psychosocial problems, such as neurosis, attention deficit and poor adjustment to school. Health care professionals, especially primary care physicians, can do a great deal to prevent such problems in these children and their families. The approach outlined here is based on an understanding of the transactional model of development, in which the child interacts with--and to some extent creates--the social environment, and on a "noncategorical" concept in which common elements in chronic illness are recognized and emphasized. The physician''s role is to inform the family of the child''s condition as soon as possible, to offer hope, encouragement and guidance, to watch the child''s development, to maintain a shared view of the child and family, and, if possible, to ensure continuity of care.     

Total family unit Helicobacter pylori eradication and pediatric re-infection rates

BACKGROUND: Re-infection with Helicobacter pylori is more common in children than adults, and it is generally accepted that the family unit plays a significant role in primary childhood infection. We investigated whether the family unit plays a significant role in pediatric re-infection and if eradication of H. pylori from the entire family reduces the risk of childhood re-infection. METHODS: Fifty families, each with an H. pylori-infected pediatric index case (mean age 9.48 years), were recruited. A 13carbon urea breath test was performed on all family members in the same house as the index case. Each family unit was randomized into a 'family unit treatment' group (all infected family members treated) or an 'index case treatment' group (index case only treated). RESULTS: At long-term follow-up (mean 62.2 months), there were three re-infected children in the 'index case treatment' group compared with one in the 'family unit treatment' group. The re-infection rate was 2.4% per patient per year in the 'index case treatment' group and 0.7% per patient per year in the 'family unit treatment' group (p = .31). CONCLUSIONS: This study is the first to evaluate the effect of total family unit H. pylori eradication on pediatric re-infection rates and reports the longest period of re-infection follow-up in children. In childhood, re-infection with H. pylori is not significantly reduced by family unit H. pylori eradication.     

Bereavement counselling after sudden infant death.

Of 14 families who suffered a sudden infant death, eight were followed up intensively over several months and offered individual counselling, parents'' group meetings, and interviews with doctors as a way of helping them come to terms with their feelings of loss. Five couples accepted short term support from their health visitor, and one refused help. Many families experienced considerable stress including marital conflict, difficulties with surviving children, and anxiety about future children becoming victims of the sudden infant death syndrome. It was concluded that medical social workers, health visitors, hospital paediatricians, general practitioners, and parent self help groups are in key positions to help. The success of such help is likely to depend on the confidence that each helper has that his or her contribution will be valued by the bereaved family.     

Cultural Sensitive Care Provision in a Public Child and Adolescent Mental Health Centre: A Case Study from the Toulouse University Hospital Intercultural Consultation

Child and adolescent mental health services in Europe are confronted with children with increasingly diverse socio-cultural backgrounds. Clinicians encounter cultural environments of hyperdiversity in terms of languages and countries of origin, growing diversity within groups, and accelerated change with regards to social and administrational situations (Hannah, in: DelVecchio Good et al. (eds) Shattering culture: American medicine responds to cultural diversity, Russel Sage Foundation, New York, 2011). Children and families who live in these complex constellations face multiple vulnerabilizing factors related to overlapping or intersecting social identities (Crenshaw in Univ Chic Leg Forum 140:139–167, 1989). Mobilizing existing resources in terms of social and family support, and encouraging creative strategies of interculturation in therapeutic work (Denoux, in: Blomart and Krewer (eds) Perspectives de l’interculturel, L’Harmattan, Paris, 1994) may be helpful in order to enhance resilience. Drawing from experiences in the context of French transcultural and intercultural psychiatry, and inspired by the Mc Gill Cultural Consultation in Child Psychiatry, we developed an innovative model, the Intercultural Consultation Service (ICS). This consultation proposes short term interventions to children and families with complex migration experiences. It has been implemented into a local public health care structure in Toulouse, the Medical and Psychological Centre la Grave. The innovation includes the creation of a specific setting for short term therapeutic interventions and team training via shared case discussions. Our objectives are (a) to improve outcomes of mental health care for the children through a better understanding of the child’s family context (exploration of family dynamics and their relatedness to complex migration histories), (b) to enhance intercultural competencies in professionals via shared case discussions, and, (c) to improve the therapeutic relationship between children and professionals on the basis of the work with the family and the dialogue with the team. In our paper, we present the rationale and functioning of the ICS and illustrate our work with a case study. The presentation of the case uses the Mc Gill B-version of the Cultural Formulation, combined with a relational and process oriented reflection on the intercultural dynamics that unfold during the encounter with a family.     

The family in a changing world

Increasing numbers of young mothers in the work force, more and more children requiring extrafamilial care, high rates of divorce, lower rates of remarriage, increasing numbers of female-headed households, growing numbers of zero-parent families, and significant occurrences of child maltreatment are just some of the social indicators indicative of the family in a changing world. These trends and their consequences for children are described and then examined from the perspectives of microeconomic theory, the relative-income hypothesis, sex-ratio theory, and one form of modernization theory. The paper concludes with a preliminary examination of the added explanatory power provided by evolutionary theory.     

Seeking early care: the role of prenatal care advocates

This exploratory study investigates the role of social support in the initiation of prenatal care by analyzing data from interviews with 36 pregnant women at a public health facility in Tuscaloosa, Alabama. A systematic sample of U.S.-born women aged 19 to 34 who initiated care in each of the three trimesters was interviewed. After controlling for age and education, three variables were found to be associated with earlier estimated gestational age at the time of a woman's first prenatal visit: self-referral to care, more prenatal care advocates, and fewer children. There was no significant effect on the timing of entry to care associated with ethnicity, marital status, transportation availability, rural vs. urban residence, distance of residence from the clinic, or prior prenatal care at the public health facility. These results suggest that first-time mothers are likely to seek early care and that family and friends play a significant support role in encouraging women to begin care.     

Mentally retarded children of eastern India: A biosocial study

Abstract

Biosocial characteristics of 265 mentally retarded and 253 nonretarded children comprising 518 handicapped children from eastern India were studied to discern characteristics significantly associated with the retardates. The children studied were consecutive referrals between January 1977 and April 1981 to the Centre for Handicapped Children, Institute of Child Health, Calcutta. Comparison of retarded and nonretarded children showed the incidence of mental retardation to be significantly associated with age of children, age of mothers, parents’ socioeconomic class, family size, birth order, tempo of motor development, and family history of psychiatric illness. The proportion of retardates was higher among the handicapped girls than among boys, and the level of retardation was significantly associated with sex. Implications of findings are discussed.     

Child sexual abuse--children and families referred to a treatment project and the effects of intervention.

The characteristics of a series of 274 families who were referred to a sexual abuse treatment programme were analysed. Information was obtained on 411 abused children and 362 non-abused children. Different forms of sexual abuse were noted, with 77% of girls and 23% of boys affected. Boys tended to be abused at a younger age, more severely, and for longer periods than girls. There was a predominance of lower social class groups among the parents, and a wide variety of family structures, with reasonable stability over time. Ninety six per cent of perpetrators were men, and biological and step-parents predominated. Contributing factors in both the family history and the current perpetrators and their wives included sexual abuse, violence, chaotic families, marital problems, sexual difficulties, alcoholism, and subnormality. Follow up of 120 families, 180 victims, and 226 siblings showed that prosecution occurred in 60% of cases, with a high percentage of perpetrators being imprisoned. Treatment was offered to 87% of families, but because the treatment programme was in the early stages of development a variable number of children and parents were offered family treatment or treatment in groups for parents and children separately. There was an improvement in the victim''s circumstances in 61% of cases, and a noticeable reduction in "sexualised" and general emotional difficulties among victims, but there was reabuse rate of 16%. Protection of children was achieved through changes of family attitude and changes in family structure including divorce and separation: 14% of victims were rehabilitated to both parents, 33% to mothers only, and 26% to new families or other residences. Consensus in the family that abuse had occurred was seen as an important factor in determining which children could be rehabilitated with both their parents, with their mothers only, or with new families; which families could be offered or accepted treatment; and whether positive changes in the family occurred.