Trajectoires décisionnelles de parents d’un enfant ayant une condition médicale complexe

Les progrès médicaux, technologiques et scientifiques réalisés au cours des dernières décennies permettent à de nombreux enfants de survivre à la prématurité, à la maladie ou à des traumatismes physiques. Certains survivent avec des problèmes de santé chroniques qui altèrent le fonctionnement de plusieurs organes. Certains doivent composer avec des incapacités physiques ou intellectuelles légères, modérées ou sévères et sont maintenus en situation de dépendance médico technologique dans un contexte où les services d’aide et le soutien à domicile ne répondent pas aux besoins réels des enfants et de leur famille. Ces avancées dans le champ de la santé offrent des choix auparavant inexistants : sauver ou non la vie de l’enfant? Ces nouvelles possibilités imposent aux parents des décisions parfois difficiles qui engagent des valeurs, des croyances et ont d’énormes conséquences pour les acteurs (l’enfant, ses parents, sa famille, les membres de l’équipe soignante et des professionnels), les institutions et toute la société. Ces choix renvoient à des visions des choses et du monde, à différentes conceptions de la vie et de la mort. En nous intéressant à la trajectoire décisionnelle de parents d’enfant atteint d’une condition médicale complexe, nous souhaitions comprendre la façon dont les parents prennent des décisions à propos de leur enfant. Nous voulions également saisir les motifs décisionnels et leur façon d’évoluer avec le temps. La pensée complexe d’Edgar Morin constitue l’assise théorique principale de la recherche. Nous avons réalisé des entretiens semi-dirigés auprès de 25 parents dont 15 mères et 10 pères. Parmi les principaux résultats, notons la multiplicité des types et des objets de décision, l’influence multisystémique des motifs décisionnels et la présence de processus qui se développent au fil de la trajectoire. Les résultats permettent de proposer quelques repères susceptibles d’améliorer l’accompagnement des parents exposés à des décisions complexes à propos de leur enfant gravement malade.

Profils individuels et dynamiques interactionnelles des parents et des enfants à risque d’aliénation parentale dans un contexte d’une rupture conjugale litigieuse

L’aliénation parentale (AP) est un phénomène connu des intervenants sociolégaux œuvrant auprès des familles éclatées chez lesquelles on retrouve un haut niveau de conflits parentaux. Ce phénomène est peu étudié empiriquement et sa définition et les balises l’entourant demeurent à ce jour non circonscrites et suscitent confusion et controverse. Cette recherche n’a pas comme objectif de trancher sur ce qui est ou n’est pas de l’aliénation parentale, mais porte plutôt sur l’étude du phénomène de Détérioration du lien parent-enfant (DLPE), qui inclut une rupture complète du lien comme dans les cas d’AP, lors de séparations conjugales litigieuses. Cette thèse doctorale a pour objectif principal d’élargir notre compréhension sur les différents facteurs qui interagissent et qui mettent en place une situation familiale de DLPE. Le présent ouvrage est composé de quatre articles, dont trois sont empiriques. Le premier article est une synthèse critique des écrits théoriques et empiriques permettant de dégager les différents facteurs, conduites ou contextes individuels et relationnels associés à une DLPE. Il ressort que la plupart des écrits proviennent de comptes rendus cliniques. De plus, peu d’auteurs abordent ce phénomène dans une perspective systémique incluant une vision multifactorielle de cette situation. Plusieurs aspects demandent à être étudiés davantage : les caractéristiques individuelles, les comportements inappropriés des acteurs et les dynamiques familiales. En définitive, il importe d’établir les facteurs de résilience. Les articles 2, 3 et 4 ont été réalisés suite à une analyse qualitative de 17 dossiers d’expertise psychosociale de familles séparées en litige autour des accès des enfants. Le second article a pour objectif d’apporter un éclairage fouillé sur les structures de personnalité des parents impliqués dans de tels litiges. Il se dégage de cette analyse que les parents contribuent différemment à la dynamique familiale en fonction de leur profil de personnalité. Quatre profils parentaux ont émergé et permettent de discerner en quoi les parents aux conduites aliénantes se distinguent des parents dénigrés au niveau des profils de personnalité et en quoi la personnalité de ces parents est respectivement différente selon qu’ils maintiennent ou pas la relation avec leur enfant. L’analyse approfondie des profils parentaux a permis de formuler certains facteurs de risque et de protection relatifs à la structure de la personnalité des parents à risque d’une DLPE. Le troisième article a pour objectif d’évaluer par une lecture psychodynamique les différentes caractéristiques individuelles des enfants dans l’optique d’établir des pistes pouvant élucider pourquoi un enfant est résistant à une DLPE ou, au contraire, ne l’est pas. L’analyse qualitative fouillée des dossiers d’expertise a permis d’extraire différents facteurs de risque et de protection d’une DLPE chez ces enfants. Le quatrième article cherche à modéliser les différents facteurs de risque ou, au contraire, qui atténuent le risque de DLPE. Trois trajectoires dénotant une dynamique de DLPE ont émergé. Une modélisation systémique reprend l’ensemble des facteurs (dynamiques personnelles et relationnelles, contexte familial, système sociojuridique, personnes tierces et temps) émergeant de l’analyse et leur déploiement spécifique à chaque trajectoire.

Detecting non-multiplicative genotype relative risks from transmissions of parental alleles to affected children

The differential transmission of alleles from parents to affected children indicates that the locus under investigation is either directly involved in the occurrence of the disease or that there are allelic associations with other loci that are directly involved. Conditional logistic regression applied to a diallelic locus leads to a test with two degrees of freedom. The power of a single degree of freedom test to detect non-multiplicative allelic effects is discussed here.

Lesbian and gay parents and reproductive technologies: The 2008 Australian and UK reforms

This article analyses the laws that govern the allocation of parental responsibility for children conceived through non-coital reproduction by lesbians and gay men in England/Wales and Australia. In 2008 both jurisdictions introduced important reforms affecting this area of law, providing new options for the legal recognition of parent–child relationships in lesbian and gay households. However, the practical usefulness or effectiveness of the reforms may be limited by the excessive complexity or obscurity of the system of parental responsibility thus introduced. Furthermore, the reform Acts encourage the formation of some family structures—especially homonuclear families—while discouraging the emergence of more imaginative and cooperative parenting configurations at odds with heteronormative parenting scripts. Only through a clearer commitment to intentionality as a ground for the allocation of parental responsibility will future reform be likely to adequately protect the interests of lesbian and gay parents and their children.

Observing interactions between children and adolescents and their parents: the effects of anxiety disorder and age

Parental behaviors, most notably overcontrol, lack of warmth and expressed anxiety, have been implicated in models of the development and maintenance of anxiety disorders in children and young people. Theories of normative development have proposed that different parental responses are required to support emotional development in childhood and adolescence, yet age has not typically been taken into account in studies of parenting and anxiety disorders. In order to identify whether associations between anxiety disorder status and parenting differ in children and adolescents, we compared observed behaviors of parents of children (7–10 years) and adolescents (13–16 years) with and without anxiety disorders (n=120), while they undertook a series of mildly anxiety-provoking tasks. Parents of adolescents showed significantly lower levels of expressed anxiety, intrusiveness and warm engagement than parents of children. Furthermore, offspring age moderated the association between anxiety disorder status and parenting behaviors. Specifically, parents of adolescents with anxiety disorders showed higher intrusiveness and lower warm engagement than parents of non-anxious adolescents. A similar relationship between these parenting behaviors and anxiety disorder status was not observed among parents of children. The findings suggest that theoretical accounts of the role of parental behaviors in anxiety disorders in children and adolescents should distinguish between these different developmental periods. Further experimental research to establish causality, however, would be required before committing additional resources to targeting parenting factors within treatment.

Mental health, coping and family-functioning in parents of young people with obsessive-compulsive disorder and with anxiety disorders

Objective. To compare mental health, coping and family-functioning in parents of young people with obsessive-compulsive disorder (OCD), anxiety disorders, and no known mental health problems. Method. Parents of young people with OCD (N=28), other anxiety disorders (N=28), and no known mental health problems (N=62) completed the Brief Symptom Inventory (Derogatis, 1993), the Coping Responses Inventory (Moos, 1990), and the McMaster family assessment device (Epstein, Baldwin, & Bishop, 1983). Results. Parents of children with OCD and anxiety disorders had poorer mental health and used more avoidant coping than parents of non-clinical children. There were no group differences in family-functioning. Conclusion. The similarities across the parents of clinically referred children suggest that there is a case for encouraging active parental involvement in the treatment of OCD in young people.

Non-nutritive sucking associated with self-mutilating behavior

Although sucking activity has been considered an essential behavior of early childhood to satisfy nutritive and non-nutritive needs, digit and pacifier sucking are deleterious oral habits that may interfere with child development. Furthermore, this clinical picture may be compounded by other concerning habits, such as self-mutilating behavior. This article reports 4-year follow-up of a child in whom non-nutritive sucking was associated with an unusual self-mutilating behavior; namely, the child would pull out her own hair after wrapping it around her finger every time she sucked on the pacifier. This occurred specially at bedtime, while she was watching TV, or when she was somewhat anxious, and remitted and recurred throughout the follow-up period. In an attempt to address this behavior, pacifier use was discontinued and the child’s head was shaved. Ultimately, the case was only solved through combined efforts involving the child, her family, and health professionals. Based on the parents’ reports and clinical examination and follow-up findings, we emphasize the importance of investigating the origin of the problem and considering emotional aspects and its association with other habits in such cases.

The Integration of Formal and Non-formal Education: The Dutch “brede school”

The Dutch “brede school” (BS) development originates in the 1990s and has spread unevenly since: quicker in the primary than secondary educational sector. In 2007, there were about 1000 primary and 350 secondary BS schools and it is the intention of the government as well as the individual municipalities to extend that number and make the BS the dominant school form of the near future. In the primary sector, a BS cooperates with crèche and preschool facilities, besides possible other neighborhood partners. The main targets are, first, to enhance educational opportunities, particularly for children with little (western-) cultural capital, and secondly to increase women’s labor market participation by providing extra familial care for babies and small children. All primary schools are now obliged to provide such care. In the secondary sector, a BS is less neighborhood-orientated than a primary BS because those schools are bigger and more often located in different buildings. As in the primary sector, there are broad and more narrow BS, the first profile cooperating with many non-formal and other partners and facilities and the second with few. On the whole, there is a wide variety of BS schools, with different profiles and objectives, dependent on the needs and wishes of the initiators and the neighborhood. A BS is always the result of initiatives of the respective school and its partners: parents, other neighborhood associations, municipality etc. BS schools are not enforced by the government although the general trend will be that existing school organizations transform into BS. The integration of formal and non-formal education and learning is more advanced in primary than secondary schools. In secondary education, vocational as well as general, there is a clear dominance of formal education; the non-formal curriculum serves mainly two lines and objectives: first, provide attractive leisure activities and second provide compensatory courses and support for under-achievers who are often students with migrant background. In both sectors, primary and secondary, it is the formal school organization with its professionals which determines the character of a BS; there is no full integration of formal and non-formal education resulting in one non-disruptive learning trajectory, nor is there the intention to go in that direction. Non-formal pedagogues are partly professionals, like youth- and social workers, partly volunteers, like parents, partly non-educational partners, like school-police, psycho-medical help or commercial leisure providers. Besides that, the BS is regarded by government educational and social policy as a potential partner and anchor for community development. It is too early to make reliable statements about the effects of the BS movement in the Netherlands concerning the educational opportunities for disadvantaged children and their families, especially those with migrant background, and combat further segregation. Evaluation studies made so far are moderately positive but also point to problems of overly bureaucratized structures and layers, lack of sufficient financial resources and, again, are uncertain about long-term effects.

Strengthening Families: Parents' Voices on Discipline and Child Rearing

This qualitative study conducted semi-structured, multi-session focus groups and interviews with twenty-seven participants to explore in-depth, participant constructs of child discipline and punishment methods and reasons for the continuing support for corporal punishment of U.S. children. The research assumed that parents want to parent well and utilized the strengths perspective as the instrument to listen to participants' voices. Narratives revealed that participants were thoughtful about discipline and parenting strategies and viewed their parent role as a serious commitment. Non-violent discipline strategies, particularly communication, were often used. However, parents generally framed use of physical punishment as “when children need spanking” versus articulating the view that corporal punishment is a choice. Parents were unfamiliar with risks associated with physical punishment and only three parents, as a result of their foster parent training, had ever heard, “Do not spank.” Participants enumerated services and recommendations that would support and inform their own parenting, as well as, benefit children and the eighty percent of women and men in the United States who become mothers and fathers. Recommendations included: creation of a national campaign to build on parent strengths and the intentionality of effective parenting; child development education and increased public awareness of positive discipline methods; parenting supports, including respite and venues for dialogue and discourse about parenting. Recommendations are intended to inform child welfare practice and policy, particularly child abuse prevention. Creating, funding, and implementing a national campaign as described would challenge the dominant child welfare paradigm from one currently perceived as punitive and focused on parents' deficits to a strengths-based paradigm that provides supports and assistance to parents and children.

Exploring the Association Between Household Food Insecurity, Parental Self-Efficacy, and Fruit and Vegetable Parenting Practices Among Parents of 5- to 8-Year-Old Overweight Children

Background: Food insecurity may negatively impact children’s nutritional status by affecting parenting quality. Because parents have a strong influence on their children’s eating and food choices, examining the effects of food insecurity on parenting may provide important insights into obesity prevention efforts. Objectives: This study explored whether food insecurity was associated with parental self-efficacy and parenting practices related to fruit and vegetable consumption. Methods: Secondary analysis was performed using baseline data from 31 mothers of 5-8 year old overweight or obese children who had participated in a pilot obesity treatment program. Household food security status, fruit and vegetable parental self-efficacy (modeling/socialization, planning/encouraging and availability/accessibility) and fruit and vegetable parenting practices (structure, responsiveness, non-directive control, and external control) were assessed using validated measures. Students' t-test investigated differences in subscales by food security status. Results: There were no significant differences in fruit and vegetable parenting practices and parental self-efficacy between food secure and insecure groups. There was a trend towards a decrease in parental self-efficacy for making fruit and vegetables available in the home among food insecure parents (p=.06). Conclusions: In this small sample no significant associations were found between food insecurity and fruit and vegetable parenting practices and parental self-efficacy. However, the trend observed in this exploratory analysis supports further hypothesis-driven research with a larger sample size able to detect more subtle differences.

Dental knowledge and attitude toward school dental-health programs among parents of kindergarten children in Winterthur.

The current study investigated the attitudes and knowledge regarding diet and oral hygiene of parents with kindergarten children. The parents' statements were evaluated in terms of their socioeconomic background and were compared with the annual clinical examination of the children. The objective of the study was to assess the effectiveness of the school dental-health program and adapt it to today's societal needs. Of those who participated in the interview, 61% were Swiss, 16% were from former Yugoslavia or Turkey, and 12% each from the EU or other countries. Of the children examined, 39% already had caries, and 18% of those showed more than two lesions. The parents' knowledge correlated with the severity of the child's caries as well as with the parents' income, country of origin, and education. There was a correlation between the child's dental decay and lower income, as well as lower education and non-Swiss nationality of the parents. Parents with higher income and better education more often participated in the preschool's preventive program. Parents from former Yugoslavia or Turkey participated less frequently than parents from other countries. The study demonstrated that parents who especially needed instruction and prophylaxis are contacted too late or not at all through the dental-health program at kindergarten and that new approaches to prevention should be implemented to more effectively reach the parents.

Non-sexual household transmission of HCV infection: A cohort study

Objective. This study was designed to determine the prevalence and incidence of HCV infection among non-sexual household contacts of HCV-infected women and to describe the association between HCV infection and potential household risk factors in order to examine whether non-sexual household contact is a route of transmission for HCV infection. ^ Methods. A baseline prevalence survey included 409 non-sexual household contacts of 241 HCV-infected index women in the Houston area from 1994 to 1997. A total of 470 non-sexual household contacts with no evidence of HCV infection at baseline investigation were re-assessed approximately three years after baseline enrollment. Information on potential risk factors was collected through face to face interviews and blood samples were tested for anti-HCV with ELISA-2 and Matrix/RIBA-2. The relationships between HCV infection and potential risk factors were examined by using univariate and multivariate logistic regression analyses. ^ Results. The overall prevalence of anti-HCV positivity among 409 non-sexual household contacts was 4.4%. The highest prevalence of anti-HCV was found in parents (19.5%), followed by siblings (8.1%) and other relatives (5.6%); the children had the lowest prevalence of anti-HCV (1.2%). The univariate analysis showed that IDU, blood transfusion, tattoos, sexual contact with injecting drug users, more than 3 sexual partners in a lifetime, history of a STD, incarceration, previous hepatitis, and contact with hepatitis patients were significantly associated with HCV infection, however, sharing razors, nail clippers, toothbrushes, gum, food or beds with HCV-infected women, and history of dialysis, health care job, body piercing, and homosexual activities were not. Multivariate analysis found that IDU (OR = 221.7 with 95% CI of 22.8 to 2155.7) and history of a STD (OR = 11.7 with 95% CI of 1.2 to 113.1) were the only variables significantly associated with HCV infection. No such associations remained for other risk factors. The three-year cumulative incidence of anti-HCV among 352 non-sexual household contacts of HCV-infected women was zero. ^ Conclusion. This study has provided no evidence that non-sexual household contact is a likely route of transmission for HCV infection. The risk of sharing razors, nail clippers, toothbrushes, gum, food and/or beds with HCV-infected women is not evident and has not been shown to be the likely mode for HCV spread among family members. This study does suggest that IDU is the likely route of transmission for most HCV infection. Association also has been shown independently with a history of STD. The prevalence of anti-HCV among non-sexual household contacts was low. Exposure to common parenteral risk factors and sexual transmission between sexual partners may account for HCV spread among household members of HCV-infected persons. ^

Health beliefs and attitudes of HPV among Hispanic parents as predictors of intention to use the HPV vaccine

Human Papillomavirus (HPV) is the most common sexually transmitted disease in the United States. Although HPV prevalence is high in the United States, there are a limited number of research studies that focus on Hispanics, who have higher incidence rates of cervical cancer than their non-Hispanic counterparts. The HPV vaccine introduced in 2006 may offer a feasible solution to the issues surrounding high prevalence of HPV. Due to the high prevalence of HPV infection among adolescents and young adults it has been suggested that HPV vaccination begin prior to onset sexual activity and focus on non-sexually active adolescents and pre-adolescents. Consequently, it has become increasingly important to assess knowledge and awareness of HPV in order to develop effective intervention strategies. This pilot study evaluated the knowledge and health beliefs of Hispanic parents regarding HPV and the HPV vaccine using a newly developed questionnaire based on the constructs of the Health Belief Model. The sample was recruited from an ob-gyn office in El Paso, Texas. Descriptive data show that the majority of the sample was female (94.1%), Hispanic (76.5%), Catholic (64.7%), and had at least a high school education (55.9%). Chi-square analysis revealed that the following variables differed amongst parents who intended to vaccinate their child against HPV and those who did not: religion (p=0.038), perceived severity item "HPV infections are easily treated" (p=0.052), perceived benefits item "It is better to vaccinate a child against an STI before they become sexually active" (p=0.014) and perceived barriers item "The HPV vaccine may have serious side effects that could harm my child" (p=0.004). Univariate logistic regression indicated that religion (OR = 4.8, CI: 1.04, 21.8) and "The HPV vaccine may have serious side effects that could harm my child" (OR = 15.9, CI: 1.73, 145.8) were significant predictors of parental intention to vaccinate. Multivariate logistic regression, using backwards elimination, indicated that religion (OR = 7.7, CI: 1.25, 47.8) and "The HPV vaccine may have serious side effects that may harm my child" (OR = 7.6, CI: 1.15, 50.2) were the best predictive variables for parental intention to vaccinate. ^

A comparison of healthcare access, healthcare utilization and asthma self-management for Hispanic children in border and non-border regions of Texas

The purpose of this culminating experience was to investigate the relationships between healthcare utilization, insurance coverage, and socioeconomic characteristics of children with asthma along the Texas-Mexico Border. A secondary data analysis was conducted on cross-sectional data from the Texas Child Asthma Call-back Survey, a follow-up survey to the random digit dialed Behavior Risk Factor Surveillance Study (BRFSS) conducted between 2006-2009 ( n = 556 adults living in households with a child with asthma).^ The proportion of Hispanic children with asthma in Border areas of Texas was more than twice that of non-Border areas (84.8% vs. 28.8%). Parents in Border areas were less likely to have their own health insurance (OR = 0.251, 95% C.I. = 0.117-0.540) and less likely to complete the survey in English than Spanish (OR = 0.251 95% C.I. = 0.117-0.540) than parents in non-Border areas. No significant socio-economic or health care utilization differences were noted between Hispanic children living in Border areas compared to Hispanic children living in non-Border areas. Children with asthma along the Texas-Mexico Border, regardless of ethnicity and language, have insurance coverage rates, reported cost barriers to care, symptom management, and medication usage patterns similar to those in non-Border areas. When compared to English-speakers, Spanish-speaking parents in Texas as a whole are far less likely to be taught what to do during an asthma attack (50.2% vs. 78.6%).^ Language preference, rather than ethnicity or geographical residence, played a larger role on childhood asthma-related health disparities for children in Texas. Spanish-speaking parents in are less likely to receive adequate asthma self-management education. Investigating the effects of Hispanic acculturation rates and incongruent parent-child health insurance coverage may provide better insight into the health disparities of children along the Texas-Mexico Border.^

Non omnia possumus omnes: [student theme], 1795 December 28

A somewhat playful manuscript poem describing a weary student, Tom Delve, who throws off his "tiresome books" to "exchange my hopes of fame for ease" because the world of art, unlike science, is too broad to ever master.