Attitudes of Parents at risk of inheriting Li-Fraumeni Syndrome towards predictive genetic testing in their minor-aged children.

Li-Fraumeni Syndrome (LFS) is a hereditary cancer syndrome which predisposes individuals to cancer beginning in childhood. These risks are spread across a lifetime, from early childhood to adulthood. Mutations in the p53 tumor suppressor gene are known to cause the majority of cases of LFS. The risk for early onset cancer in individuals with Li-Fraumeni Syndrome is high. Studies have shown that individuals with LFS have a 90% lifetime cancer risk. Children under 18 have up to a 15% chance of cancer development. Effectiveness of cancer screening and management in individuals with Li-Fraumeni Syndrome is unclear. Screening for LFS-associated cancers has not been shown to reduce mortality. Due to the lack of effective screening techniques for childhood cancers, institutions vary with regard to their policies on testing children for LFS. There are currently no national guidelines regarding predictive testing of children who are at risk of inheriting LFS. No studies have looked at parental attitudes towards predictive p53 genetic testing in their children. This was a cross-sectional pilot study aimed at describing these attitudes. We identified individuals whose children were at risk for inheriting p53 genetic mutations. These individuals were provided with surveys which included validated measures addressing attitudes and beliefs towards genetic testing. The questionnaire included qualitative and quantitative measures. Six individuals completed and returned the questionnaire with a response rate of 28.57%. In general, respondents agreed that parents should have the opportunity to obtain p53 genetic testing for their child. Parents vary in regard to their attitudes towards who should be involved in the decision making process and at what time and under what considerations testing should occur. Testing motivations cited most important by respondents included family history, planning for the future and health management. Concern for insurance genetic discrimination was cited as the most important “con” to genetic testing. Although limited by a poor response rate, this study can give health care practitioners insight into testing attitudes and beliefs of families considering pediatric genetic testing.

Use of instructional video to prepare parents for learning infant cardiopulmonary resuscitation.

Parents of premature infants often receive infant cardiopulmonary resuscitation (CPR) training prior to discharge from the hospital, but one study showed that 27.5% of parents could not demonstrate adequate CPR skills after completing an instructor-led class. We hypothesized that parents who viewed an instructional video on infant CPR before attending the class would perform better on a standardized skills test than parents who attended the class with no preparation. Parents randomized to the intervention (video) group viewed the video within 48 hours of the CPR class. Parents in the control group attended the class with no special preparation. All parents completed the CPR skills checklist test, usually within 7 days after class and before the infant's hospital discharge. The test rated subjects' skills in the areas of assessment, ventilation, and chest compressions; each section was rated as good, fair, or fail. In this pass/fail test, students had to be rated good or fair on all three sections to pass. All 10 subjects in the video group passed the test versus only 9 of 13 in the control group, but this difference was not significant (P = 0.08). However, 8 of 10 (80%) subjects in the video group were rated as good on all three sections, versus only 3 of 13 (18.7%) in the control group, and this was a significant difference (P = 0.012). We conclude that preparation of students using an instructional video prior to infant CPR class is associated with improvement in skills performance as measured by a standardized skills test. Video preparation is relatively inexpensive, eliminates the barrier of reading ability for preparation, and can be done at the convenience of the parent.

Dispelling the Myth: What Parents Really Think about Sex Education in Schools

Background: School-based sex education is effective in reducing risky sexual behavior among adolescents that may lead to unintended pregnancies and sexually transmitted infections. However, most sex education policies in the US do not support evidence-based programs. Understanding parental attitudes around sex education is crucial to overcoming perceived barriers to implementing school-based sex education. Little research has been published on the opinions of parents in Texas, which accounts for 12% of the nation’s teen births. Purpose: The purpose of this study was to examine whether Texas parents favor teaching sex education in schools, in what grades they think sex education should be taught, what content they think should be taught, and who they think should make decisions regarding sex education. Methods: We commissioned a telephone survey of parents of children 18 years or younger in Harris County, Texas. Survey questions assessed demographic characteristics and opinions about sex education. We used chi-square tests to examine differences across sociodemographic characteristics. Results: 1,201 parents completed the survey. The majority of parents (80%) responded that sex education should begin in middle school or earlier, and two-thirds said that it should include information about condoms and contraception. Hispanic parents showed the highest support for teaching sex education and providing medically accurate information on condoms and contraception in middle school or earlier. Conclusion: Parents in Harris County overwhelmingly support sex education that includes medically accurate information about condoms and contraception beginning before high school. These data provide evidence to change sex education policies to better reflect parental opinions.

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.

Partnering with Parents: Promising Approaches to Improve Reunification Outcomes for Children in Foster Care

Family reunification is one of the central tenents of the child welfare system, yet research supporting effective practices to promote safe reunifications is limited. As a departure from previous initiatives, the Parent Partner (PP) program enlists as staff mothers and fathers who have experienced child removal, services, and reunification. This study examines outcomes for children served by the PP program. The experimental group includes 236 children whose parents were served by a Parent Partner and a matched comparison group of 55 children whose parents were served by the public child welfare agency in 2004, before the Parent Partner program was established. Cases were examined 12 months following case opening to determine reunification status. Results from the outcome study indicate that reunification may be more likely for children whose parents were served by Parent Partners. Although there are limitations to the data, findings from this study suggest that the Parent Partner model may hold promise as a child welfare intervention designed to support reunification.

Commentary on "Partnering with Parents: Promising Approaches to Improve Reunification Outcomes for Children in Foster Care"

In “Partnering with Parents: Promising Approaches to Improve Reunification Outcomes for Children in Foster Care,” authors J. D. Berrick, Edward Cohen and Elizabeth Anthony describe promising outcomes from a quasi-experimental study of reunification outcomes associated with the Parent Partner program in one western county

Commentary on "Strengthening Families: Parents' Voices on Discipline and Child Rearing"

There is a growing consensus among professionals working with parents and children, and advocates for child rights, that a ban on the use of corporal punishment (CP) in raising children is justified in accordance with the United Nations Convention on the Rights of the Child (CRC, 1989). However, this is an issue which seems to polarize people and opponents of banning CP have attacked the scientific literature and made dire predictions of adverse consequences if parents are not allowed to use CP. The problem is that so much attention has been focused on the “to spank or not to spank” issue, the developmental benefits for children and parents stemming from positive parenting have been largely ignored. There is increasing evidence that public health approaches to increasing parenting support reduces coercive parenting practices. Breshears' study represents an effort to gain a clearer understanding of the reasons many parents continue to support CP and draws on innovative qualitative methods to argue that parents’ views about CP are important and must be taken into account in planning intervention programs.

Commentary on "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"

Invited commentary of an article that discusses the association between parental factors and food insecurity by Angela Hilmers, Karen Cullen, Carolyn Moore and Teresia O’Connor.

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.

Exploring parents' memories of their child's death related sensory experiences as a dimension of grieving

Little is known about how dying children and their parents experience death. Dying children have reported death related sensory experiences (DRSEs), defined as seeing or hearing someone or something not visible or audible to others, associated with dying. Although parents report that they and the dying child benefit from these experiences, healthcare providers often unknowingly dismiss them. The aims of this phenomenological inquiry were to describe children's DRSEs and their meaning from the parents' perspectives. Four fathers and six mothers of African American, Caucasian, or Hispanic ethnicity, all Christian, ranging in age from 35 to 59 years, whose child died 23 to 52 months prior and was treated at a children's cancer center, were interviewed in the home or hospital setting of their choice. Children's ages at the time of their death ranged from 4 to 13 years. A modification of van Kaarn's phenomenological method of analysis was used to analyze data. Themes emerging from the data for the first aim were: perceiving someone or something from a spiritual realm others could not, expressing awareness tempered by parental reactions, and embracing transcendence. Themes emerging from the data for the second aim were: spiritual beings prepared child; child revealed reality, preparing parents; and child transcended wholly, easing parents' grief. Post-interview surveys revealed that parents found participating in this study a "very positive" or "positive" experience, particularly being able to tell the story of their child. Children's DRSEs have clinical implications for all who provide care near the end of life. Informing parents of DRSEs, cautioning that not all dying children express them, may help parents to anticipate this phenomenon, which may decrease anxiety when their child expresses them, increasing the opportunity for open dialogue between parent and child about dying and death, and decrease regrets associated with being unreceptive to their child's expressions of death awareness. Validating a child's DRSE can have profound effects on bereaved parents. Examining DRSEs from the child's perspective and the influence of informing parents of DRSEs on the dying experience of the child and the parental grieving process are recommended. ^

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. ^

Differences in health status of HIV infected children cared for by parents as compared to those cared for by grandparents

Purpose. The purpose of the study was to use measures of an HIV positive child's health to examine whether or not there is a difference in their health status according to caretaker and household economic status. ^ Study design. This was a case comparison study between HIV infected children living with parents and those living with grandparents. ^ Study setting. The study was conducted at the Pediatric Infectious Disease Clinic (PIDC) in Mulago, Kampala, Uganda. ^ Participants. 369 HIV-infected children aged seven months to 15 years attending the PIDC between June 13th and August 15th 2007 as well as their caretakers. ^ Method. Patients were recruited during their clinic visits after they had seen the health care providers and waited to receive their medication. Methods used included a survey of all the 369 caregiver participants and abstraction of data from the 369 patient charts. ^ Results. There was no significant association between staging and caretaker status (OR: 0.73 95%CI 0.44–1.21 p=0.09). Children taken care of by grandparents were more likely to have low height for age z-scores and higher weight for height z-scores (OR: 0.32, 95%CI: 0.14–0.74, p = 0.005). There was no difference is social support seeking behavior between parents and grandparents. ^ Conclusion. There was no statistically significant association observed between caretaker status and presenting in advanced stages. This implies that the stage at which HIV-infected children present for care is not determined by the type of caretaker. Caretakers for HIV-infected children need a lot of support beyond medical care. ^

Parents' impressions of inappropriate television content for Hispanic preschool children

Rates of childhood obesity have increased three-fold in the last 20 years, and experts estimate that well over half of adolescents with a Body Mass Index at or above the 95th percentile become obese adults. These trends are even more pronounced in ethnic minority and lower income populations that are disproportionately impacted by obesity and its complications. It would be appropriate, then, to focus obesity interventions on Hispanic children. Television viewing, especially, has been shown to contribute to obesity by increasing caloric intake and decreasing physical activity. Parent involvement has proven to be a critical component in changing children’s health behaviors. In order to explore parents’ motivations for limiting their children’s television viewing, I qualitatively analyzed data from twenty-five interviews with Houston area Head Start parents. Using Grounded Theory, four main categories of concern emerged from the audio-recorded conversations: developmentally inappropriate content, the influence of television, poor health behaviors/outcomes, and general disapproval with television. Developmentally inappropriate content was the most frequently mentioned category with 119 mentions. This included violence, the most common sub-theme. In all, parents were more concerned with television content that produced proximate consequences such as modeling violent behavior or inappropriate language. Content that encouraged behaviors that led to obesity or other delayed consequences were of less concern to the parents. This suggests that future interventions aimed at encouraging Hispanic parents to reduce their children’s television viewing should draw motivation from parents’ concerns about developmentally inappropriate content, rather than focusing on deleterious health outcomes such as obesity. ^

Psychosocial measures reported by parents in studies of skin cancer prevention

Background. Because it is important to minimize children's sun exposure to reduce skin cancer risk, much of the extensive skin cancer prevention literature consists of studies of children's sun protection, sun avoidance and ultraviolet radiation (UVR) exposure. Little attention has been focused on the measurement of psychosocial constructs in these studies. Identification of the psychosocial correlates or determinants of children's skin cancer risk or risk-reduction behavior is critical to more fully understand and predict behavior. Furthermore, psychosocial variables may be influenced by interventions to reduce risk. Thus, it is important to examine the psychosocial measures used in studies of children's skin cancer prevention. Information on the validity and reliability of psychosocial measures may increase confidence in study findings based on these measures. In particular, self-efficacy and barriers are key constructs in several major theoretical frameworks and parental measures have been associated with children's sun protection. However, there is conceptual overlap of self-efficacy and barriers measures and little is known about the psychometric properties of these measures.^ Study Aims and Methods. The overall goal of this dissertation was to examine the measurement of psychosocial constructs relevant to children's skin cancer prevention. Because children depend primarily on their parents for skin cancer prevention, measures of parents' psychosocial constructs are the focus. Study 1 was a systematic review of parental psychosocial measures used in studies of children's sun protection, sun avoidance and UVR exposure. The specific aims of Study 1 were to (1) describe psychosocial measures reported by parents, including available information on the psychometric properties of these measures and their use in analyses and (2) provide recommendations for the development, refinement and standardized reporting of measures. ^ Study 2 examined the psychometric properties of measures of parental self-efficacy and barriers regarding children's sun protection. Melanoma patients (N=205) who were parents of children ≤ 12 years of age completed a telephone interview that included self-efficacy and barriers measures specific to sunscreen, clothing, shade and limiting time outdoors. The specific aims of Study 2 were to (1) use a confirmatory factor analytic approach to examine the factorial validity of parental self-efficacy and barriers measures, (2) examine the convergent and discriminant validity of behavior-specific measures of self-efficacy and barriers and (3) assess the reliability of item and scale measures.^ Results. In Study 1, a search of standard databases yielded 48 eligible studies. Most studies assessed only one or two psychosocial constructs. Knowledge was measured most frequently. There was little discussion of measure source, development, theoretical background or psychometric properties, besides internal consistency reliability. There was conceptual overlap of some measures. In Study 2, confirmatory factor analytic findings supported the factorial validity of the self-efficacy and barriers measures. When all eight self-efficacy and barriers measures were included in the same model, a modified eight-factor model adequately fit the data, providing preliminary evidence that the measures are distinct. Measure associations supported the convergent validity of all measures and the discriminant validity of most measures. The self-efficacy and barriers measures were reliable.^ Conclusions. Recommendations based on the literature review include developing and refining psychosocial measures based on theory. Describing a measure's theoretical basis and psychometric properties would facilitate critical evaluation. Standardized reporting of source, development, theory, construct, items and analytic role would facilitate comparison of findings, continual refinement and future applications of measures. In the validation study, self-efficacy and barriers measures were examined in a sample of parents with a personal history of melanoma. Findings suggested that these measures are valid and reliable for use in studies of children's sun protection. There was preliminary evidence that these measures are distinct but additional study is needed. ^

If we call them, will they change? Feasibility of a telephone adaptation of motivational interviewing aimed at parents to reduce television time among 2nd and 4th grade children

Television viewing is a sedentary behavior that is modifiable. Reducing media-related behaviors via parent-focused interventions may hold promise for decreasing childhood obesity. This feasibility study examines a novel parent-centered brief telephone-delivered Motivational Enhancement Interview (MEI) to encourage parents of 2nd and 4th graders to set a rules limiting TV time or remove the TV from the child's bedroom. This quasi-experimental sub-study was part of the larger CATCH: En Vivo pilot study conducted in a Hispanic population in the Texas Rio Grande Valley. Parents in the MEI condition were contacted via telephone and encouraged to meet the American Academy of Pediatrics (AAP) recommended 2 hours per day or less of TV. Unconditional logistic regression was used to analyze the data. At post-test, 85% of parents of 4th graders in the MEI group (compared to 71% at pre-test) reported having a rule limiting TV time. The adjusted odds ratio for the MEI group compared to the control group was 3.88, 95% CI (0.72-20.99). At pre-test, 63.16% of 2nd graders had a television in their bedrooms. The 2nd grade MEI intervention reduced that number to 41.03% (OR=0.25, 95%CI (0.08-0.82)). This first look at using MEI to target parents of children to modify TV behavior presents evidence on a promising strategy for modifying children's home media environment and warrants further investigation. ^