Parent Project Research Articles

Learning from adult services: expert patients to expert parents

A project funded under DH £30 million for children's palliative care.IntroductionThe Expert Parents project was based on the adult expert patients programme to give self-confidence to adult patients to take...

Quilting in Self-Efficacy Group Work With Older African American Women Leaving Homelessness

The use of quilting as an art therapy intervention in a self-efficacy group of African American women who were leaving homelessness is examined in this article. Two quilting workshops (n = 8; n = 12) contributed to a larger parent project (N = 530 over a 10-year period), entitled the “Leaving Homelessness Intervention Research Project,” conducted in a U.S. Midwestern city. In addition to framing the importance of quilting as a form of group work and health promotion that may foster resilience toward stressful transitions, the authors offer a rationale, outcomes, and guidelines for community building and advocacy through the quilting form that is a heritage of American folk art.

FRIENDS Parent Project: Effectiveness of Parent Training in Reducing Parent Anxiety in a Universal Prevention Program for Anxiety Symptoms in School Children

AbstractAnxiety is the most pervasive childhood mental health disorder today. This study examined the parent component of a school-based universal prevention and early intervention program. Participating parents (N= 122) completed four measures on anxiety, the Anxiety Sensitivity Index, the Center for Epidemiological Studies-Depression, the Penn State Worry Questionnaire, and the Screen for Child Anxiety Related Emotional Disorders, before and after the parent program. The effectiveness of the program was investigated by analysing mean scores of the parent self-reported anxiety symptoms and parent reports of child anxiety symptoms. The main analyses conducted were 2 × 2 between-within ANOVAs for each measure. The hypothesis that parents who participated in the program (n= 20) would report reduced anxiety symptoms for themselves and for their children when compared to parents who did not attend (n= 120) was not confirmed. The parent's satisfaction level with the program was also studied, with high acceptability ratings providing strong social validity for this program. Implications of the findings, strengths, limitations and suggestions for further research are discussed.

À propos de l’adoption internationale : la double étrangeté de l’enfant venu d’ailleurs

The foster child through an intercountry adoption is a "foreigner" in two ways: as a support for parental unconscious projections (as any child, including biological children) on the one hand, and because of the strangeness ethnic often involved in this framework in the other hand. After recalling the main parental representations concerning the unborn child, the author then proposes to think the approval procedure as a kind of imaginary and symbolic equivalent of the usual psychic pregnancy.

“THIRD PLACES” FOR HEALTHY AGING: ONLINE OPPORTUNITIES FOR HEALTH PROMOTION AND DISEASE MANAGEMENT IN ADULTS IN HARLEM

“THIRD PLACES” FOR HEALTHY AGING: ONLINE OPPORTUNITIES FOR HEALTH PROMOTION AND DISEASE MANAGEMENT IN ADULTS IN HARLEM

Not waiting to live, not living to wait....

Recently, I presented the following points for discussion at the Parent Project Muscular Dystrophy conference in Denver, Colorado. I truly believe that all disabled adults (as well as growing kids!) have the capability to enlighten society as to how we are viewed, versus how we perceive ourselves. The main differences lie between two models when it comes to thinking about disability: medical and social. Patrick Moeschen teaches middle school music and band full-time, and is an active drummer. In addition to his teaching duties, Patrick travels as an advocate for people with muscular dystrophy and has presented at conferences around the world. Currently, Patrick is working on a book about the role a disabled teacher plays in the classroom of America’s children. He lives in Salem, New Hampshire, and can be contacted at [email protected] .

Daily Step Count, Gait Parameters, Strength, And Function In Children With Duchenne Muscular Dystrophy

Recent work has demonstrated that boys with Duchenne muscular dystrophy (DMD) are less active and take fewer steps/day than healthy boys. However, little information is known regarding what factors may contribute to this decrease in physical activity. PURPOSE: The purpose of this study was to examine gait parameters, strength, and functional ability in boys with DMD whose daily step count was < 6000 steps/day compared to those who had a step count of > 6000 steps/day. METHODS: Physical activity was assessed for 5-7 consecutive days with an activity monitor (accelerometer) to obtain average daily step count and METs (determined by the Freedson child energy expenditure prediction equation). Fifteen ambulatory boys with DMD (mean age 8.8 + 1.4 years) participated. Seven of these subjects had a daily step count < 6000 steps/day (4850 +/- 1059) (INACTIVE), and eight had > 6000 steps/day (7436 +/- 1402) (ACTIVE). Subjects also participated in gait assessment for spatiotemporal parameters, strength testing (isometric knee extension and plantarflexion on a dynamometer), and a timed functional test (30 foot fast walk). T-tests were used to determine differences between the two groups, and relationships were examined using Pearson correlation coefficients (alpha = 0.05). RESULTS: No differences were noted between the groups for age, METs, or strength (p > 0.30). A difference in gait parameters was noted for step length (m) (INACTIVE 0.46 +/- 0.05, ACTIVE 0.54 +/- 0.06; p < 0.01). Trends were noted for base of support (cm) (INACTIVE 5.6 +/- 3.0, ACTIVE 2.9 +/- 2.1; p = 0.08) and functional ability as evidenced by the 30 foot walk (s) (INACTIVE 7.04 +/- 2.0, ACTIVE 5.60 +/- 0.6; p = 0.07). There was an inverse relationship found between daily step count and the 30 foot walk for all 15 subjects (r = -0.66, p < 0.01). CONCLUSIONS: The preliminary data collected in this study suggest that functional ability and gait characteristics appear to be more important than strength in distinguishing activity level in children with DMD. Further research is warranted to explore these variables to determine if addressing these functional limitations may improve a child's daily activity. Funded by the Muscular Dystrophy Association (MDA4170), Wellstone Muscular Dystrophy Center Grant (1U54RO52646-01A1), and Parent Project Muscular Dystrophy.

Away from Home: Paradoxes of Parenting for Mexican Immigrant Adults

This study explores immigrant parents’ experiences of raising children in the United States, using data from the Immigrant Parent Project, a larger study of immigrant parents from 6 nations. The authors conducted face-to-face qualitative interviews with 1 parent and 1 adolescent child from 30 families with at least 1 immigrant parent from Mexico. Findings suggest that parents experience several paradoxes related to freedom and control, American culture and Mexican culture, the provider and servant roles, and dreams of the future. Prior studies have typically examined immigrant parents’ effects on child outcomes. This study fills the research gap related to parents’ own experiences and outcomes and informs practitioners of Mexican immigrant parents’ unique parenting objectives.

The development of antisense oligonucleotide therapies for Duchenne muscular dystrophy: Report on a TREAT-NMD workshop hosted by the European Medicines Agency (EMA), on September 25th 2009

A workshop entitled The Development of Antisense Oligonucleotide Therapies for Duchenne Muscular Dystrophy, sponsored by the EU funded Clinical Network TREAT-NMD (Translational Research in Europe for the Assessment and Treatment of Neuromuscular Diseases; www.treat-nmd.eu), Association Francaise contre les Myopathies, Duchenne Parent Project, European Medicines Agency, Muscular Dystrophy Association and Patient Project Muscular Dystrophy, was held on 25th September 2009 at the European Medicines Agency (EMA), London, UK.

B-learning for Parents’ Informal Learning: PARENTS project

PARENTS project is an educational project financed by the European Commission in the framework of the Lifelong Learning Program (Grundtvig scheme), which involves seven European institutions. The Supercomputing Center of Galicia (CESGA) carries out the technological part of the project. PARENTS' project main goal is to tackle the problem of training parents of adolescents to provide their children adequate orientation about studies and future employment options. This article describes the process of this project, its main achievements so far, and its technological aspects.

Evaluating "Parent Project:" A Multi-Site Inquiry

This study evaluates Parent Project®, a parent education program for parents of at-risk adolescents. A logic model was created to highlight the relationship between program theory and measured constructs. Results comparing pre-workshop data with Week 10 data suggested significant increases in parent-reported parental support, parental behavioral control, and youth achievement, and significant decreases in youth antisocial behavior. Youth reported significant increases in maternal and paternal support and maternal behavioral control and significant decreases in antisocial behaviors.

Facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy: April 24–25, 2008, Miami, Florida

Fifteen participants representing clinicians and parents from Canada, the Netherlands, the UK, and the USA met in Miami on April 24–25, 2008 to attend a workshop that focused on facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy (DMD). The workshop, sponsored by Parent Project Muscular Dystrophy (PPMD), was organized in response to parent and clinician concerns that many families do not receive adequate psychosocial support following diagnosis. DMD is a complex multi-systemic medical condition with characteristics of both chronic and terminal disease [1,2].

Association of Oxidative Stress, Iron, and Centralized Fat Mass in Healthy Postmenopausal Women

Centralized adiposity, insulin resistance, excess iron, and elevated oxidative stress place postmenopausal women at risk for atherosclerotic cardiovascular disease (CVD). The objective of this study was to determine the relationship among excess iron, oxidative stress, and centralized fat mass in healthy postmenopausal women. The parent project recruited healthy women for a randomized, double-blind, clinical trial designed to examine the effect of soy isoflavones on bone. At baseline (n = 122), we measured three antioxidant enzymes, iron status indices (serum ferritin among others), oxidative stress indices (oxidized low-density lipoprotein [oxLDL], urinary isoprostanes [PGF(2alpha)], protein carbonyls, DNA damage), and waist, hip, and thigh fat mass using dual-energy x-ray absorptiometry (DXA). We calculated insulin resistance using the homeostasis model assessment (HOMA). Multiple regression analysis was used to determine the CVD risk factors that contributed to oxidative stress and centralized fat mass (waist + hip/thigh = AndGynFM ratio). Almost 14% (p < 0.0005) of the variability in oxLDL was accounted for by AndGynFM ratio (6.1%, p < 0.0005), age (4.0%, p = 0.012), and serum iron (2.8%, p = 0.053). Similarly, 16% (p < 0.0001) of the variability in PGF(2alpha) was accounted for by the AndGynFM ratio (4.8%, p = 0.011), HOMA (3.9%, p = 0.021), and serum iron (2.7%, p = 0.054). We accounted for 33% (p </= 0.0001) of the variability in AndGynFM ratio by high-density lipoprotein cholesterol (HDL-C) (4.3%, p = 0.008), ferritin (4.9%, p = 0.005), HOMA (4.5%, p = 0.006), oxLDL (2.6%, p = 0.04), and PGF(2alpha) (3.0%, p = 0.025). Our study suggests that reducing centralized fat mass and maintaining a favorable lipid profile, antioxidant status, and iron status all may be important in protecting postmenopausal women from atherosclerotic CVD.

Les formes atténuées de la mucoviscidose : génétique - suivi prolongé nécessaire

The diagnosis of mild cystic fibrosis is first suspected on mild lung disease or absence of pancreatic insufficiency and is assessed by biological analysis. The sweat test is not always conclusive. The nasal potential difference and molecular analysis of CFTR gene allow confirming diagnosis. A regular follow-up in cystic fibrosis clinical centre is essential all life long. The genotype, especially during neonatal period, cannot be used to predict individually the course of the disease. Genetic counselling must be recommended to the parents in order to propose an analysis of CFTR gene to give the appropriate genetic counselling and to consider with them which family members could be concerned, especially in the event of parental project. The research of heterozygote status in related for prenatal diagnosis is not recommended for all mutations.

'Where the Parents are of the Same Sex': Quebec's Reforms to Filiation

To advance debates on legal responses to parenting by gay and lesbian couples, the paper introduces reforms enacted by the legislature of Quebec, a civil law jurisdiction with a codified private law, in 2002. Quebec's pioneering regime permits two persons of the same sex to register as a child's parents from birth, not only by adoption. They may do so if they conceived the child as part of a Moreover, a person alone may have a child via a parental project. The paper identifies the policy choices reflected in the amendments and highlights weaknesses in the drafting, instructive to policy makers in civil law or common law jurisdictions. It emphasizes the structural difficulty of amending the civil law's fundamental institution of filiation to recognize two parents of the same sex. Comparing with ad hoc judicial developments from a Canadian common law province, it underscores the potential in systematic legislative reform. Conservative scholars have resisted the new regime as an inappropriate departure from the pursuit of filiation's biological vocation. The study reveals how selectively jurists may remember the past and how swiftly they may characterize innovations relating to parentage - such as the earlier abolition of illegitimacy - as natural. The mingling of biological fact and fiction in the new regime underscores the similar blending in more traditional forms of filiation.

Place de l’enfant

A child's self-construction and access to his identity depend on the conditions of affective security in which he is raised and his genealogical references, the founders of his own place in society. The quality of the professional care at the different stages of the birth process is confirmed as a major variable in the parents' sense of security, followed by the child's. The drift toward the illusion of a right to a child is tempered by the attention that can be contributed by all healthcare providers who come into contact with couples when they request artificial procreation: recognition of their request, but also of their suffering, so as to separate the child's place from parental projections that may be poorly adjusted to the child's needs.

Suivi des femmes après AMP

The follow-up of women after ART is for the most part related, over the short and long term, to the follow-up of the child born through ART. What is important to know is the possible repercussions of treatment on women's health over the short and long term. To date, no study has proven that menopause comes on earlier after ART treatments. Similarly, none of the international studies has demonstrated a significant increase in breast, ovary, uterus, or colon cancer related to ovulation-inducing treatment. However, for reasons of safety, vigilance is required. Large-scale follow-up of this nature essentially involves crossing registries (cancers, ART), but must respect the desires of women not to be indefinitely reminded of their past infertility. In addition, a study is reported on pursuing the parental project in a cohort of 1200 women who delivered at least one child conceived through MAP more than 3 years before.

Engaging as Ethnographers: Insights from the Collaborative Study of a Literacy Learning Community

Van Sluys and five eighth-grade ethnographers with a range of linguistic experiences in Spanish and English write about their processes and findings in their shared study of parent literacy practices. Here, they describe a disconnect between their own understandings of literacy and their roles in a literacy learning community. For example, their Parent Project observations motivated them “to start richer conversations with people in literature groups and to listen carefully to what others have to say.”

The baby and his majesties: some considerations on human helplessness

Observation of obstetric ultrasound and of the setting in which it takes place, through an application of the Bick method, demonstrates aspects of the transition process to parenthood, siblinghood, and grandparenthood. The image and the setting provoke an intense emotional response which prompts regression. The idealised security of the baby inside is shattered by the dramatic intensity of primitive emotion aroused. Caught in intergenerational ties, the baby ends up being the target of massive parental projections, and is not able to assume the position implied when Freud talks about ‘His Majesty the Baby.’ The members of the baby's family become ‘Their Majesties’ instead. Since the doctor offers a containing setting, in which there can be a shared interpretation of images, he or she may facilitate the process of becoming a father, mother, sibling, grandparent, by helping to organise the creation of ties with the baby.

149th ENMC International Workshop and 1st TREAT-NMD Workshop on: “Planning Phase I/II Clinical trials using Systemically Delivered Antisense Oligonucleotides in Duchenne Muscular Dystrophy”

Thirty-one participants from 7 countries (Australia; England; France; Germany; Italy; The Netherlands; USA) attended the second ENMC workshop on antisense oligonucleotides in Duchenne muscular Dystrophy (DMD). The topic of this workshop was on ‘‘Planning Phase I/II Clinical Trials Using systemically delivered Antisense Oligonucleotides in Duchenne Muscular Dystrophy (DMD)’’ and followed a similar workshop held in 2004 focused on intramuscular administration of antisense oligonucleotides or AONs. The workshop was organized with the support of the TREAT-NMD EU Network of Excellence (www.treat-nmd.eu) and Parent Project Muscular Dystrophy (PPMD), and was attended by representative of the two companies involved in the current intramuscular injection trials, Prosensa for the 2-O-methyl phosphorothioate RNA modified and AVI Biopharma for the phosphorodiamidate morpholino oligomers (PMOs or more commonly ‘‘morpholinos’’). Although, the PMO backbone is based on synthetic subunits, not regular nucleotides, for the sake of simplicity we will refer to all antisense oligomers as AONs.