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PubMed2005

Mental health and juvenile justice: moving toward more effective systems of care.

This issue brief discusses the mental health needs of youth who are involved with the juvenile justice system, how they come into contact with the system, and the evidence of the availability and quality of mental health services for such youth. The paper also explores public policy options for avoiding dependence on the juvenile justice system as a last resort for treating youth with mental disorders.

Adolescent↗
PubMed2006

Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home.

OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for technology-dependent children and the moral dilemmas that this population confronts remain virtually unknown. This study explored the moral dimension of family experience through detailed accounts of life with a child who requires assisted ventilation at home. This study involved an examination of moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings, and parents and (2) everyday family life as a whole. METHODS: A qualitative method based on Richard Zaner's interpretive framework was selected for this study. The population of interest for this study was the families of children who are supported by a ventilator or a positive-pressure device at home. Twelve families (38 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. Children in the study population fell into 4 diagnostic groups: (1) abnormal ventilatory control (eg, central hypoventilation syndrome), (2) neuromuscular disorders, (3) spina bifida, and (4) craniofacial or airway abnormalities resulting in upper airway obstruction. All 4 of these diagnostic groups were included in this study. Among the 12 children recruited, 4 received ventilation via tracheostomies, and 8 received ventilation with face masks. All of the latter received ventilation only at night, except for 1 child, who received ventilation 24 hours a day. Family moral experiences were investigated using semistructured interviews and fieldwork observations conducted in the families' homes. RESULTS: Data analysis identified 6 principal themes. The themes raised by families whose children received ventilation invasively via a tracheostomy were not systematically different or more distressed than were families of children with face masks. The principal themes were (1) confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children's needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was "no free choice" in the matter: they could not have chosen to let their child die. (2) Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of "normal" families. These efforts seemed motivated by a fundamental striving for a stable family and home life. This "striving for stability" was sometimes undermined by limitations in family finances, family cohesion, and unpredictability of the child's condition. (3) Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child's life is devalued, frequently referred to as a life not worth maintaining. They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. (4) Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families' respite needs. (5) What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience. Some children described their ventilators as good things. They helped them breathe and feel better. Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving. (6) Questioning the moral order: most families questioned the "moral order" of their lives. They contemplated how "good things" and "bad things" are determined in their world. Parents described their life as a very unfair situation, yet there was nothing that they could do about it. Finally, an overarching phenomenon that best characterizes these families' experiences was identified: daily living with distress and enrichment. Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming. An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise. This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without. Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and enrichments that arise out of this experience. The conundrum inherent in this situation is that there are no simple means for reconciling this tension. This irreconcilability is particularly stressful for these families. Having their child permanently institutionalized or "disconnected" from ventilation (and life) would eliminate both the distresses and the enrichments. These options are outside the realm of what these families could live with, aside from the 1 family whose child is now permanently hospitalized, at a tremendous cost of guilt to the family. CONCLUSIONS: These findings make important contributions by (1) advancing our understanding of the moral experiences of this group of families; (2) speaking to the larger context of other technology-dependent children who require home care; (3) relating home care experiences to neonatal, critical care, and other hospital services, suggesting that these settings examine their approaches to this population that may impose preventable burdens on the lives of these children and their families; and (4) examining a moral problem with an empirical method. Such problems are typically investigated through conceptual analyses, without directly examining lived experience. These findings advance our thinking about how we ought to care for these children, through a better understanding of what it is like to care for them and the corresponding major distresses and rewarding enrichments. These findings call for an increased sensitization to the needs of this population among staff in critical care, acute, and community settings. Integrated community support services are required to help counter the significant distress endured by these families. Additional research is required to examine the experience of other families who have decided either not to bring home their child who requires ventilation or withdraw ventilation and let the child die.

Caregivers↗
PubMed2004

The PedsQL Family Impact Module: preliminary reliability and validity.

BACKGROUND: The PedsQL Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL 4.0 Generic Core Scales were developed to be integrated with the PedsQL Disease-Specific Modules. The newly developed PedsQL Family Impact Module was designed to measure the impact of pediatric chronic health conditions on parents and the family. The PedsQL Family Impact Module measures parent self-reported physical, emotional, social, and cognitive functioning, communication, and worry. The Module also measures parent-reported family daily activities and family relationships. METHODS: The 36-item PedsQL Family Impact Module was administered to 23 families of medically fragile children with complex chronic health conditions who either resided in a long-term care convalescent hospital or resided at home with their families. RESULTS: Internal consistency reliability was demonstrated for the PedsQL Family Impact Module Total Scale Score (alpha = 0.97), Parent HRQOL Summary Score (alpha = 0.96), Family Functioning Summary Score (alpha = 0.90), and Module Scales (average alpha = 0.90, range = 0.82 - 0.97). The PedsQL Family Impact Module distinguished between families with children in a long-term care facility and families whose children resided at home. CONCLUSIONS: The results demonstrate the preliminary reliability and validity of the PedsQL Family Impact Module in families with children with complex chronic health conditions. The PedsQL Family Impact Module will be further field tested to determine the measurement properties of this new instrument with other pediatric chronic health conditions.

Activities of Daily Living↗
PubMed1976

Long-term placement of dependent children from the client's point of view.

This article presents data regarding the backgrounds and attitudes of 396 dependent children in Israel who had been living in boarding institutions for almost three years, and were at least 10 years old at the time of the research interview. Parents of the children were also interviewed, and background [corrected] information regarding the family and its experience with placement was abstracted from welfare department records. This detailed information, collected nearly a decade ago, was then compared with several very recent Israeli studies of institutionalized dependent children and it was found that many problematic features of placement still persist. Among these are lack of long or short-term planning by welfare agencies, poor agency follow-up after placement, and little personal contact with either the child or his family. More older children were accepting placement than were younger children, and the majority of the parents did not contemplate the child's return home, being quite satisfied with placement in the institution. The findings from this study should have direct implications for child welfare policy and practices.

Adolescent↗
PubMedDate not supplied

An epidemic of Neisseria gonorrhoeae in a Somali orphanage.

Neisseria gonorrhoeae was isolated from 53 young females (6-14 years old) in a Somali orphanage. A male guardian was found to be the effective transmitter having sexually abused the children. All the bacterial isolates were of the same serogroup WI and the same serovar Aedih. This presents an unusual example of a tight geographic cluster of infected people which is often characteristic of gonorrhoea epidemics.

Adolescent↗
PubMed1994

[New decision making therapy in foster, adoptive and institutionalized children with failed outcome].

A specific group of children, adolescents and young adults with failure syndromes and courses of failure is described and a report is made on the new decision-making therapy, which has been modified for young patients. This is described from its transaction-analytical background as well as in its practical implementation in the in-patient department of a clinic for child and adolescent psychiatry. Here it is not a matter of a single method of therapy but of a therapy direction. The objective of this is to help the young person to review its earlier decisions that were made in connection with relationships in the sense of one's own prohibition of admission, these being the main cause for failure, and to code to a new decision of wanting to have successful relationships in the future. In its implementation different psychotherapeutical processes are applied according to the individual process situation. The new decision-making therapy can be considered to be completed when the typical failure syndrome symptoms have disappeared and the young person begins to open itself towards development-promoting help and to enter into relationships.

Adaptation, Psychological↗
PubMed1975

Porteus Maze Q score as a measure of impulsivity.

The validity of the Q score (derived from the qualitative scoring of the Porteus Maze Test) as a measure of impulsivity was investigated by comparing the performance of high- and low-impulse groups. 80 Ss were employed and the Q score failed to differentiate high- from low-impulse institutionalized Ss, delinquent from nondelinquent Ss and extreme groups based on ratings. These findings are at variance with the claim that the Q score measures impulsivity.

Age Factors↗
PubMed1980

Effects of the institutional label on peer assessments of institutionalized EMR persons.

The "group concept" of EMR persons was examined in a study in which a sample of institutionalized male and female subjects evaluated a target person either labeled as institutionalized or not labeled. Contrary to expectations, the institutionalized person was rated as favorably as the noninstitutionalized person on all of the adjective traits (e.g., "friendly"); however, all subjects showed a preference for the noninstitutionalized person on two social-distance items ("live near" and "work with"). In addition, when asked in a series of questions to compare an institutionalized and a noninstitutionalized target person, male subjects preferred the noninstitutionalized person. Results were discussed in terms of subjects' reactions to the institutional label.

Adolescent↗
PubMed1975

Drinking patterns of institutionalized and noninstitutionalized Wyoming youth.

The drinking attitudes and patterns among institutionalized and noninstitutionalized Wyoming youth were examined. The majority appeared generally to support a norm of approval of drinking but those institutionalized for antisocial behavior were more likely to drink often, to become drunk and to have gotten into trouble with parents or the police because of drinking.

Adolescent↗