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1.  Coverage of Palliative and Hospice Care for Pediatric Patients with a Life-Limiting Illness: A Policy Brief 
PMCID: PMC3805677  PMID: 24055071
pediatric palliative care; pediatric hospice care; concurrent care waivers; Medicaid; affordable care act; health care reform
3.  Understanding Motivations for Abstinence among Adolescent Young Women: Insights into Effective Sexual Risk Reduction Strategies 
Pregnancy and sexually transmitted infections pose a significant threat to the health and wellbeing of adolescent young women. Abstinence when practiced provides the most effective means in preventing these problems, yet the perspective of abstinent young women is not well understood. The purpose of the investigation was to characterize female adolescents’ motivations for abstinence.
As part of a larger, cross-sectional quantitative study investigating predictors of HIV risk reduction behaviors, qualitative responses from study participants who never had intercourse were analyzed in a consensus-based process using content analysis and frequency counts. An urban primary care site in a tertiary care center served as the setting, with adolescent young women ages 15–19 years included in the sample.
Five broad topic categories emerged from the data that characterized motivations for abstinence in this sample: 1) Personal Readiness, 2) Fear, 3) Beliefs and Values, 4) Partner Worthiness and 5) Lack of Opportunity.
A better understanding of the motivations for abstinence may serve to guide the development of interventions to delay intercourse.
PMCID: PMC3434311  PMID: 22525893
abstinence; adolescent young women; pregnancy/STI/HIV prevention and cultural diversity
4.  Facilitating Pediatric Patient-Provider Communications Using Wireless Technology in Children and Adolescents with Sickle Cell Disease 
Using wireless devices may potentially transform delivery of primary care services in sickle cell disease (SCD). The study examined text message communications between patients and an advanced practice registered nurse (APRN) and the different primary care activities that emerged using wireless technology.
Patients (n=37; mean age 13.9 ± 1.8 years; 45.9% males; 54.1% females) engaged in intermittent text conversations with the advanced practice registered nurse as part of the Wireless Pain Intervention Program. Content Analyses were used to analyze the content of text message exchanges between patients and the APRN.
The primary care needs that emerged were related to pain and symptom management and sickle cell crisis prevention. Two primary care categories (collaborating and coaching), four primary care subcategories (screening, referring, informing, supporting), and 16 primary care activities were evident in text conversations.
The use of wireless technology may facilitate screening, prompt management of pain and symptoms, prevention or reduction of SCD related complications, more efficient referral for treatments, timely patient education, and psychosocial support in children and adolescents with SCD.
PMCID: PMC3449226  PMID: 22446036
sickle cell disease; pain; symptoms; wireless technology; smartphone; text message communications
5.  Care Coordination for Children with Complex Special Health Care Needs: The Value of the Advanced Practice Nurse’s Enhanced Scope of Knowledge and Practice 
Efficiency and effectiveness of care coordination depends on a match between the needs of the population and the skills, scope of practice, and intensity of services provided by the care coordinator. There is limited existing literature that addresses the relevance of the APN role as a fit for coordination of care for children with SHCN. The objective of this paper is to describe the value of the advanced practice nurse’s (APN’s) enhanced scope of knowledge and practice for relationship-based care coordination in healthcare homes that serve children with complex special health care needs (SHCN). The TeleFamilies project is provided as an example of the integration of an APN care coordinator in a healthcare home for children with SHCN.
PMCID: PMC3433641  PMID: 22560803
advanced practice nursing; special health care needs; children with medical complexity; healthcare home; care coordination
6.  Anticipatory guidance preferences of Latina migrant farmworker mothers 
The purpose of the study was to learn preferences of Latina migrant farmworker (MFW) mothers’ in the presentation of health education materials by discussing the strengths and weaknesses of numerous mixed-media samples.
This community-based participatory study was qualitative and descriptive in design. Focus groups were conducted in Spanish in four Midwest migrant camps with a convenience sample of mothers (n=31). Adult learning and cultural care theories guided the study. Various modes of educational materials on various topics were presented.
Mothers preferred comic book-style handouts, games, food replicas, text in English/Spanish, and DVDs, but almost all did not have media-playing equipment. They did not like black-and-white photos, or cartoon-like illustrations. Identified themes of importance were colored illustrations, sizes mothers could easily carry in purses, and limited verbiage on a page.
Learned knowledge will be used to customize health promotion interventions that are sensitive to MFW preferred learning styles. The findings from this study can inform other interventions with Latino populations and serve as a prototype for other populations of immigrant non-English speaking mothers.
PMCID: PMC3635038  PMID: 23611456
Latino; Mexican-American; mothers; education
7.  Modifiable family factors among treatment seeking families of children with high BMI: Report of a pilot study 
The purpose of this pilot study was to explore parenting style and other potential family and social indicators of an obesogenic or weight-promoting family environment. Modifiable factors were sought on which to base a nursing behavioral intervention that could be combined with diet and exercise to reduce youth weight.
Twenty-eight parents and their 9 to 18 year old youth who were seeking care for overweight responded to in-home surveys to characterize parenting style (warmth/responsiveness and control). We also examined the extent to which parent modeling of health behavior, child feeding practices, parent knowledge of nutrition, and family social characteristics differed by the control aspect of parenting style.
Nearly all youth and parents reported substantial parental love (responsiveness) suggesting little variability in the warmth aspect of parenting style. In contrast, there was considerable variability in the control (moderate versus high) aspect of parenting style. Large effect sizes indicated that mothers with moderate control perceived their lifetime weight to be higher, had more concern about their youth’s weight (p = 0.03), better knowledge of nutrition, and lower BMI (p = 0.02) than mothers with high (firm or restrictive) control. Moderate effect sizes indicated that mothers with moderate control demonstrated better modeling behavior, higher perception of youth weight, practiced less pressure to eat, and had youth with lower BMI and percent body fat than mothers with high (firm or restrictive) control. Families who volunteered for study kept their data gathering appointments but we recommend a recruitment period of more than four months and the inclusion of several referral sites.
Further study of how parent control is related to youth overweight and how appropriate control can be achieved among families with teens who are overweight is recommended.
PMCID: PMC3982922  PMID: 22226736
8.  Stress and Quality of Life in Caregivers of Inner-city Minority Children with Poorly Controlled Asthma 
Caregiver quality of life (QOL) is known to influence asthma management behaviors. Risk factors for low caregiver QOL in families of inner-city children with asthma remain unclear. This study evaluated the interrelationships of asthma control, stress, and caregiver QOL.
Data were analyzed from a home-based behavioral intervention for children with persistent asthma post asthma emergency department treatment. Caregivers reported on baseline demographics, asthma control, asthma management stress, life stress, and QOL. Hierarchical regression analysis examined the contributions of socio-demographic factors, asthma control, asthma management stress, and life stress in explaining caregiver QOL.
Children (N=300) were primarily African-American (96%) and young (Mean age of 5.5 years). Caregivers were predominantly the biological mother (92%), single (70%), and unemployed (54%). Poor QOL was associated with higher caregiver education and number of children in the home, low asthma control, and increased asthma management stress and life stress. The model accounted for 28% of variance in caregiver QOL.
Findings underscore the need for multi-faceted interventions to provide caregivers of children with asthma tools to cope with asthma management demands and contemporary life stressors.
PMCID: PMC3575578  PMID: 23414978
asthma; caregiver; stress; quality of life
9.  Antipsychotic Medication Prescribing Trends in Children and Adolescents 
The Food and Drug Administration has approved the use of antipsychotic medications in some children and adolescents with severe emotional and behavioral disorders. However, recent national data show a dramatic rise in off-label and Food and Drug Administration–approved uses of these medications. Of particular note is a twofold to fivefold increase in the use of antipsychotic medications in preschool children, despite little information on their long-term effects. This article describes the trend in pediatric antipsychotic medication use, possible explanations for the increase, implications for children’s health, and recommendations for pediatric providers who work with parents of children and adolescents who seek or receive antipsychotic medication treatments.
PMCID: PMC3778027  PMID: 22360933
Child mental illness; antipsychotics in children; prescribing trends
10.  The Effects of Health Insurance and a Usual Source of Care on a Child’s Receipt of Health Care 
Recent health reforms will expand US children’s insurance coverage. Yet, disparities persist in access to pediatric care, even among the insured. We investigated the separate and combined effects of having health insurance and a usual source of care (USC) on children’s receipt of health care services.
We conducted secondary analysis of the nationally-representative 2002-2007 Medical Expenditure Panel Survey data from children (aged ≤18 years) who had at least one health care visit and needed any additional care, tests, or treatment in the preceding year (n=20,817).
Approximately 88.1% of the study population had both a USC and insurance; 1.1% had neither one; 7.6% had a USC only, and 3.2% had insurance only. Children with both insurance and a USC had the fewest unmet needs. Among insured children, those with no USC had higher rates of unmet needs than those with a USC.
Expansions in health insurance are essential; however, it is also important for every child to have a USC. New models of practice could help to concurrently achieve these goals.
PMCID: PMC3512198  PMID: 22920780
child health; health insurance; usual source of care; access to health care; health care disparities; health policy; health care reform
11.  Engaging Vulnerable Adolescents in a Pregnancy Prevention Program: Perspectives of Prime Time Staff 
Journal of Pediatric Health Care  2010;26(4):254-265.
Evaluating interventions for reducing unintended adolescent pregnancy is necessary to ensure quality and efficacy. The purpose of this study was to examine core case management practices and processes for engaging high-risk girls in Prime Time, an intensive multi-component intervention from the perspectives of intervention program staff.
Structured individual interviews were conducted with the entire Prime Time program staff (N=7) to assess successes and challenges in engaging adolescent girls at high risk for early pregnancy recruited from school and community clinics.
Program staff described different capacities of adolescents to engage with the program (easy, middle and difficult connecting adolescents) and provided specific recommendations for working with different connectors.
Findings from this study support the notion that preventive interventions with vulnerable groups of adolescents must pay careful attention to strategies for establishing trusting youth-adult relationships. The ability of staff (e.g., case managers, nurses) to engage with adolescents is a crucial step in improving health outcomes. The identified strategies are useful in helping adolescents build skills, motivations and supports needed for healthy behavior change.
PMCID: PMC3383598  PMID: 22726710
Adolescents; Pregnancy Prevention; Intervention
12.  Depression and Stigma in High Risk Youth Living with HIV (YLH): A Multisite Study 
Journal of Pediatric Health Care  2011;26(4):300-305.
This study explored the relationship between depression, stigma, and risk behaviors in a multisite study of high risk youth living with HIV (YLH) in the United States.
All youth met screening criteria for either problem level substance use, current sexual risk and/or suboptimal HIV medication adherence. Problem level substance use behavior was assessed with the CRAFFT, a 6-item adolescent screener. A single item was used to screen for current sexual risk and for a HIV medication adherence problem. Stigma and depression were measured via standard self-report measures.
Multiple regression analysis revealed that behavioral infection, older age, more problem behaviors, and greater stigma each contributed to the prediction of higher depression scores in YLH. Associations between depression, stigma, and problem behaviors are discussed. More than half of the youth in this study scored at or above the clinical cut-off for depression. Results highlight the need for depression focused risk reduction interventions that address stigma in YLH.
Study outcomes suggest that interventions are needed to address stigma and depression not only among youth living with HIV but in the communities in which they live.
PMCID: PMC3383773  PMID: 22726715
HIV/AIDS; Stigma; Depression
13.  Newborn With an Absent Red Reflex 
PMCID: PMC3650609  PMID: 22197583
Congenital cataract; leukocoria; nuclear cataract; amblyopia; aphakia
14.  Breaking the Ice: A Pre-intervention Strategy to Engage Research Participants 
Journal of Pediatric Health Care  2012;26(3):209-212.
PMCID: PMC3336012  PMID: 22361242
Migrant; mothers; health promotion; nutrition
15.  Developmental Status of Children of Teen Mothers: Contrasting Objective Assessments with Maternal Reports 
Descriptive study compared adolescent mothers’ subjective perceptions of their children’s development with objective developmental assessments.
Volunteer sample of mother/child pairs was recruited from urban high school. Thirty-three mothers completed Ages and Stages Questionnaire (A&SQ). Children were administered Bayley Scales of Infant Development (BSID).
On the BSID, group mean scores all fell within the normal range. However, almost 20% of individual children had one or more delays. Almost 73% of mothers accurately assessed their children’s development on the (A&SQ) when compared to BSID results. Eighteen percent of mothers suspected delays when there were none objectively identified. A single mother identified delay in a different domain than that identified on the BSID.
Findings that almost 20% of these children had developmental delays support other research that children of adolescent mothers are at risk for delays. Findings that teen mothers varied in their abilities to assess their children’s development reinforce the need for education of teen mothers about child development. Further study needed to determine the best models of this education in school and community settings.
PMCID: PMC3561665  PMID: 19720265
16.  Health-Related Quality of Life in Children and Adolescents with Sickle Cell Disease 
To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD).
Design, Setting, and Participants
The PedsQL™ 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (aged 8-18 years, child self-report) with SCD (100 sickle cell anemia [SS], 24 sickle beta zero thalassemia [Sβ0thal]) and their parents (parent-proxy report). Summary scores for children’s and parents’ ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared to published data for healthy children. Both summary and subscale scores for children with SCD were also compared to those of their parents.
Children with SCD and their parents rated overall HRQOL and all sub-domains of HRQOL lower than ratings of healthy children and their parents (p < .001). Children with SCD rated their own HRQOL significantly better than their parents for overall HRQOL and all sub-domains (p <.001) except emotional functioning (p = .06).
Children with SCD and their parents perceived overall HRQOL and all HRQOL sub-domains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD.
PMCID: PMC3124665  PMID: 21700135
Quality of Life; Health Related Quality of Life; Sickle Cell Disease; Chronic Illness; Children and Adolescents
17.  Coping Skills Training in a Telephone Health Coaching Program for Youth at Risk for Type 2 Diabetes 
The purpose of this paper is to describe components of a health coaching intervention based on coping skills training delivered via telephone. This intervention was provided to urban adolescents at risk for type 2 diabetes mellitus (T2DM), reinforcing a school-based curriculum designed to promote a healthy lifestyle and prevent T2DM.
Health coaching via telephone was provided to at-risk, urban youth enrolled in a study of an intervention to reduce risk for T2DM. Vignettes are used to describe the use of several coping skills in this high risk youth population.
A variety of vignettes illustrate how telephone health coaching reinforced lifestyle changes in students by incorporating coping skills training.
Given the benefits and the challenges of the telephone health coaching intervention, several suggestions for others who plan to use a similar method are described.
PMCID: PMC3085882  PMID: 21514490
18.  Survey of Insulin Site Rotation in Youth with Type 1 Diabetes Mellitus 
Journal of Pediatric Health Care  2010;24(6):365-371.
Injection site rotation is an important component of insulin administration and helpful in preventing lipodystrophy in type 1 diabetes (T1DM). We examined the number of injection/infusion sites (sites) used by youth with T1DM and their perceived barriers to using new sites for insulin.
Two hundred-one youth with T1DM completed a 24-item survey about site rotation practices and barriers to site rotation during a routine diabetes appointment.
Fifteen percent of youth reported using at least four distinct sites in their rotation plan, while 22% reported using only one site. A negative correlation was found between number of sites used and the number of perceived barriers endorsed by youth on multiple daily injections. Fear of pain was the most common barrier endorsed by youth.
Many youth with T1DM may not adhere to an adequate site rotation plan. Regular assessment of insulin sites and counseling regarding adequate site rotation is needed when managing diabetes in youth. Relaxation and distraction may help to reduce youths’ fear of pain when rotating to new insulin sites.
PMCID: PMC3298887  PMID: 20971411
Type 1 diabetes; youth; insulin; adherence
The purpose of this article is to review attachment theory and relate the attachment perspective to adolescent mothers and their children. Attachment theory explains positive maternal-infant attachment as a dyadic relationship between the infant and mother that provides the infant with a secure base from which to explore the world. With respect to cognitive, social, and behavioral domains, securely attached infants tend to have more favorable long-term outcomes, while insecurely attached infants are more likely to have adverse outcomes. Adolescent parenthood can disrupt normal adolescent development, and this disruption influences development of the emotional and cognitive capacities necessary for maternal behaviors that foster secure attachment. However, it appears that if specialized supports are in place to facilitate the process of developing attachment, infants of adolescent mothers can obtain higher rates of secure attachment than normative samples in this population.
PMCID: PMC3051370  PMID: 21320683
20.  Perceptions of parenting children with type 1 diabetes diagnosed in early childhood 
To explore perceptions of psychosocial adaptations in parenting young children with type 1 diabetes (T1DM) from diagnosis through childhood.
Fourteen parents of eleven T1DM children diagnosed at ≤5 years participated in semi-structured interviews. Data were analyzed using content analysis.
Significant themes were: Diagnostic Experiences: Frustrations, fears and doubts: Parents described inadequate diagnostic experiences with pediatricians where concerns were minimized and sometimes delayed diagnosis. Although hospitalization occurred abruptly, communication with specialists was more satisfactory. Adapting to Diabetes: Parents described isolation in caring for their child’s T1DM. Family and friends had minimal understanding of T1DM care. Support groups lessened mothers’ isolation, but fathers were less positive about this experience. Parental adaptation was more effective when responsibility for diabetes decision-making was shared. All parents reported never mastering diabetes management. Negotiating Developmental Transitions: Normative childhood events were stressful requiring that parents balance concerns to foster child participation.
Pediatric providers can improve diagnostic and treatment experiences for parents of T1DM children by recognizing feelings of isolation and lack of mastery, providing attentive communication, encouraging parental teamwork, and offering ongoing anticipatory guidance.
PMCID: PMC3053084  PMID: 21320680
parenting; type 1 diabetes; teamwork; qualitative
21.  Adolescents’ Perception of Asthma Symptoms and Health Service Utilization 
Pediatric asthma is accountable for a substantial use of health care services. The purpose of this study was to systemically examine the extent to which inaccurate perception of asthma symptoms is associated with the use of health care services.
This exploratory study included 126 adolescents with asthma, aged between 13–20 years. Subjects were classified as having inaccurate symptom perception (IG), well controlled, accurate symptom perception (WCA), and poorly-controlled accurate symptom perception (PCA). These groups were compared with respect to health care utilization including emergency department (ED) visits, hospitalization and office visits and school absenteeism in the past 3 months.
More adolescents in the inaccurate group had at least one hospitalization compared to adolescents in the PCA or WCA groups (23.1% vs. 11.1% vs. 2.6% respectively). A similar trend was seen for emergency department visits. Compared to WCA group, adolescents in the inaccurate group were nearly 9 times more likely to have been hospitalized, 3.4 times more likely to have visited an emergency department (ED), and 4 times more likely to have missed school days.
Adolescents with inaccurate symptom perception are more likely to have hospitalizations, ED visits, and missed days from school as compared to those with accurate perceptions. The findings underscore the importance of screening for perceptual accuracy of asthma symptoms and call for interventions promoting accurate symptom assessment in adolescents with asthma to assure appropriate care.
PMCID: PMC3060703  PMID: 21320682
22.  Early Intervention in Pediatrics Offices for Emerging Disruptive Behavior in Toddlers 
This study provides preliminary data about a parenting intervention for families of preschoolers with early ADHD/ODD symptoms carried out in two diverse primary care pediatric offices.
Parents of toddlers completed behavioral screening questionnaires at well-child visits. Eligible parents participated in a 10-week parenting education group using the Incredible Years Program. Mothers completed several outcome measures at three time points - before participating in the group, immediately after the group ended, and six months thereafter. These measures assessed changes in parenting practices, parenting stress, and child symptoms. Parent and provider satisfaction were also assessed.
Mothers reported improvements in parenting skills and decreases in stress. They also reported decreases in child aggression and increases in compliance. Mothers and providers reported high levels of satisfaction.
Results support the benefits and feasibility of providing parenting education groups to parents of toddlers in pediatric practice settings.
PMCID: PMC3045763  PMID: 21320679
pediatrics; intervention; parenting; parenting education; disruptive behavior; ADHD; ODD
23.  Identification of Suicide Risk Among Rural Youth: Implications for the Use of HEADSS 
Nurse practitioners have the power to detect suicide risk and prevent suicide, a problem plaguing rural areas of the United States. Suicide risk assessment can be completed using the HEADSS (Home, Education, Activities, Drug use and abuse, Sexual behavior, and Suicidality and depression) interview instrument. The purpose of this study was to determine if HEADSS is appropriate for guiding suicide risk assessment of rural adolescents.
High school students in Southwestern Pennsylvania completed qualitative questions from the Child Behavior Checklist and Coping Response Inventory as part of the Intervention to Promote Mental Health in Rural Youth. Qualitative content analysis was performed.
Prominent themes identified by participants included academic performance, relationships, dislikes about school, friends, death, mental health, and the future. Several minor themes concerned safety. Most known risk factors for suicide were concerns of participants.
The expansion of HEADSS to include death and safety should be considered. The modified version—HEADDSSS— can be used to guide suicide risk assessment of youth in rural Pennsylvania, ensuring both thoroughness of assessment and safety.
PMCID: PMC2863017  PMID: 20417887
24.  Positive Adolescent Life Skills Training for High-Risk Teens: Results of a Group Intervention Study 
This study tested the addition of a cognitive-behavioral skill-building component called Positive Adolescent Life Skills (PALS) training to an existing intervention for urban adolescents to enhance resiliency. In previous pilot work with the existing intervention, called “Teen Club,” it was found that participants in group meetings and intensive case management reported an enhanced ability to connect with positive resources.
Sixteen adolescents aged 12 to 16 years (10 boys and 6 girls) attending an urban secondary school were randomly assigned to Teen Club or Teen Club plus PALS. Boys and girls met separately in one of the two conditions for 30 weeks. The Problem-Oriented Screening Instrument for Teenagers (POSIT) subscale scores were measured at baseline and at the completion of the program.
The sample consisted of 11 Black and five Hispanic teens. Between-group differences in the POSIT subscale scores were not significantly different in this small sample. Group interviews conducted at the conclusion of the intervention revealed that participants found the PALS intervention to be relevant and useful.
Results suggest that the PALS component strengthened the existing intervention and lend preliminary support for the continuation of this combination of interventions. Future research with larger numbers is needed.
PMCID: PMC3074485  PMID: 16675379

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