The importance of family support in pediatrics and its impact on healthcare satisfaction.

AIMS: To evaluate predictors of healthcare satisfaction for parents whose children received hospital-based healthcare services at the Children's hospital at Landspitali University Hospital. METHODS: In this cross-sectional study, data on perceived family support, family quality of life, expressive family functioning, coping strategies and healthcare satisfaction were collected from 159 mothers and 60 fathers (N = 177 families) of children and adolescents from 2011 to 2012. RESULTS: Logistic regression analysis revealed that, for mothers, 38.8% of the variance in satisfaction with healthcare services was predicted by perceived family support and their coping strategies, while for fathers, 59.9% of the variance of their satisfaction with healthcare service was predicted by perceived family support, family quality of life and whether the child had been hospitalised before. DISCUSSION: Perceived family support was the one factor that was found to predict both the mothers' and the fathers' satisfaction with healthcare services. Knowing which factors predict satisfaction with health care among parents of hospitalised children with different chronic illnesses and health issues can inform the delivery of effective family-focused interventions and evidence-based practice to families.

Disability and Discussions of Health-Related Behaviors Between Youth and Health Care Providers.

PURPOSE: The purpose of this study was to examine the likelihood of discussing health-related behaviors with health care providers (HCPs), comparing youth with and without mobility limitations (MLs). METHODS: Analyses were conducted using baseline data from the MyPath study. Adolescents and young adults between the ages of 16 and 24 years completed a survey about their health care and health-related experiences. Analyses assessed the relationship between mobility status and discussing health-related behaviors with an HCP. Secondary analyses examined the extent to which adolescents and young adults' engagement in these behaviors was associated with these discussions. RESULTS: Overall, we found low rates of discussions about the following topics: substance use, sexual and reproductive health, healthy eating, weight, and physical activity. Adolescents and young adults with MLs were less likely to report discussing substance use and sexual and reproductive health, but were more likely to discuss healthy eating, weight, and physical activity than peers without MLs. Those adolescents and young adults who reported substance use had higher odds of discussing this topic and those who reported having sexual intercourse had higher odds of discussing sexual and reproductive health. CONCLUSIONS: Results suggest mobility status and a young person's engagement in health risk and promoting behaviors are associated with the likelihood of discussing these behaviors with an HCP. It is important that HCPs view adolescents and young adults with MLs as needing the same counseling and guidance about health-related behaviors as any young person presenting him/herself for treatment.

Development of an International School Nurse Asthma Care Coordination Model.

AIM: To identify and compare how school nurses in Reykjavik, Iceland and St. Paul, Minnesota coordinated care for youth with asthma (ages 10-18) and to develop an asthma school nurse care coordination model. BACKGROUND: Little is known about how school nurses coordinate care for youth with asthma in different countries. DESIGN: A qualitative descriptive study design using focus group data. METHODS: Six focus groups with 32 school nurses were conducted in Reykjavik (n = 17) and St. Paul (n = 15) using the same protocol between September 2008 and January 2009. Descriptive content analytic and constant comparison strategies were used to categorize and compare how school nurses coordinated care, which resulted in the development of an International School Nurse Asthma Care Coordination Model. FINDINGS: Participants in both countries spontaneously described a similar asthma care coordination process that involved information gathering, assessing risk for asthma episodes, prioritizing healthcare needs and anticipating and planning for student needs at the individual and school levels. This process informed how they individualized symptom management, case management and/or asthma education. School nurses played a pivotal part in collaborating with families, school and healthcare professionals to ensure quality care for youth with asthma. CONCLUSIONS: Results indicate a high level of complexity in school nurses' approaches to asthma care coordination that were responsive to the diverse and changing needs of students in school settings. The conceptual model derived provides a framework for investigators to use in examining the asthma care coordination process of school nurses in other geographic locations.

Prime Time: long-term sexual health outcomes of a clinic-linked intervention.

CONTEXT: Evidence about long-term effects of preventive health services for youth with complex needs is lacking. Prime Time, a youth development intervention, aims to reduce pregnancy risk among vulnerable adolescent females seeking clinic services. METHODS: In a randomized trial, 253 sexually active females aged 13-17 who were at high risk for pregnancy were assigned to the Prime Time intervention or usual clinic services. The 18-month intervention, initiated in 2007-2008, comprised regular meetings with case managers and participation in youth leadership groups. Trial participants completed surveys at baseline and 30 months. Regression analyses were used to evaluate differences between groups in sexual and psychosocial outcomes at follow-up. RESULTS: At 30 months, the intervention group reported more months of consistent condom use (adjusted means, 1.8 vs. 1.1) and dual contraceptive use (0.9 vs. 0.3) in the past seven months than did controls. The intervention was most effective in promoting consistent use among participants with relatively high levels of connectedness to family or school. Fifteen percent of intervention participants, but only 6% of controls, reported having abstained from sex in the past six months (adjusted odds ratio, 2.9). Moreover, among high school graduates, those in the intervention group were more likely than those in the control group to have enrolled in college or technical school (72% vs. 37%; odds ratio, 4.5). CONCLUSION: Health services grounded in a youth development framework can lead to reductions in sexual risk among vulnerable youth that are evident one year following conclusion of services.

Prime time: 18-month violence outcomes of a clinic-linked intervention.

Prime Time, a youth development intervention, aims to reduce multiple risk behaviors among adolescent girls seeking clinic services who are at high risk for pregnancy. The purpose of the current study was to examine whether Prime Time involvement produced changes in relational aggression, physical violence, and related psychosocial and behavioral outcomes. Qualitative case exemplars illustrated social contexts of intervention participants with differing longitudinal patterns of relational aggression and physical violence. Data were from a randomized efficacy trial with 13-17 year-old girls (n = 253) meeting specified risk criteria. Intervention participants were involved in Prime Time and usual clinic services for 18 months, control participants received usual clinic services. Participants in the current study completed self-report surveys at baseline and 18 months following enrollment. Outcomes analyses revealed significantly lower levels of relational aggression perpetration in the intervention group versus controls. In contrast, Prime Time involvement did not result in significant reductions in physical violence. Exploratory dose-response analyses indicated that reductions in relational aggression may have been most pronounced among girls actively involved in Prime Time case management and peer leadership activities. Qualitative findings suggested that the intervention's emphasis on modeling and building supportive relationships contributed to reductions in relational aggression. This study contributes to what has been a very limited evidence base regarding effective approaches to preventing violence among high-risk adolescent girls. Findings suggest that offering youth development interventions through clinic settings hold promise in reducing violence risk among vulnerable youth.

Attributes of advanced practice registered nurse care coordination for children with medical complexity.

Care coordination is an essential component of the pediatric health care home. This study investigated the attributes of relationship-based advanced practice registered nurse care coordination for children with medical complexity enrolled in a tertiary hospital-based health care home. Retrospective review of 2,628 care coordination episodes conducted by telehealth over a consecutive 3-year time period for 27 children indicated that parents initiated the majority of episodes and the most frequent reason was acute and chronic condition management. During this period, care coordination episodes tripled, with a significant increase (p < .001) between years 1 and 2. The increased episodes could explain previously reported reductions in hospitalizations for this group of children. Descriptive analysis of a program-specific survey showed that parents valued having a single place to call and assistance in managing their child's complex needs. The advanced practice registered nurse care coordination model has potential for changing the health management processes for children with medical complexity.

Assessment of physical performance using the 6-minute walk test in children receiving treatment for cancer.

BACKGROUND: The study of physical performance in children with cancer is emerging as an important variable in symptom research. Studies have shown that children with cancer experience deficits in physical performance during treatment that may be present years after therapy. OBJECTIVE: The aim of this study was to determine if distance on the 6-minute walk test (6MWT) changed in children during the first 3 cycles of cancer treatment and to compare the distances walked with healthy norms. METHODS: This is a secondary data analysis of 19 boys and 10 girls, aged 6 to 17 years, who were newly diagnosed with cancer and were part of a larger study that measured changes in fatigue and physical performance during the first 3 cycles of chemotherapy. Participants performed the 6MWT between days 15 and 29 of the first and third cycles of chemotherapy. RESULTS: Pediatric cancer patients did not have a significant change in the distance walked at cycle 3 of chemotherapy compared with cycle 1. When compared with 2 different normative data sets for healthy children, most children with cancer performed significantly below their peers. CONCLUSIONS: Children had poor strength and endurance after 3 cycles of chemotherapy even when their disease was responding to treatment. Interventions are needed to promote rehabilitation and maintenance of physical performance, as both are important to quality of life and ongoing child development. IMPLICATIONS FOR PRACTICE: Children receiving cancer treatment who are ambulatory may appear to be functioning normally but are in fact severely deconditioned compared with their healthy peers.

Prime time: sexual health outcomes at 24 months for a clinic-linked intervention to prevent pregnancy risk behaviors.

IMPORTANCE: Preventing early pregnancy among vulnerable adolescents requires innovative and sustained approaches. Prime Time, a youth development intervention, aims to reduce pregnancy risk among adolescent girls seeking clinic services who are at high risk for pregnancy. OBJECTIVE: To evaluate sexual risk behaviors and related outcomes with a 24-month postbaseline survey, 6 months after the conclusion of the Prime Time intervention. DESIGN: Randomized controlled trial. SETTING: Community and school-based primary care clinics. PARTICIPANTS: Of 253 sexually active 13- to 17-year-old girls meeting specified risk criteria, 236 (93.3%) completed the 24-month follow-up survey. INTERVENTION: Offered during an 18-month period, Prime Time includes case management and youth leadership programs. MAIN OUTCOME MEASURES: Self-reported consistency of condom, hormonal, and dual-method contraceptive use with most recent male sex partner and number of male sex partners in the past 6 months. RESULTS: At 24-month follow-up, the intervention group reported significantly more consistent use of condoms, hormonal contraception, and dual-method contraception than the control group. Intervention participants also reported improvements in family connectedness and self-efficacy to refuse unwanted sex, and reductions in the perceived importance of having sex. No between-group differences were found in the number of recent male sex partners. CONCLUSIONS AND RELEVANCE: This study contributes to what has been a dearth of evidence regarding youth development interventions offered through clinic settings, where access to high-risk adolescents is plentiful but few efforts have emphasized a dual approach of strengthening sexual and nonsexual protective factors while addressing risk. Findings suggest that health services grounded in a youth development framework can lead to long-term reductions in sexual risk among vulnerable youth.

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. Existing literature that addresses the relevance of the advanced practice nurse (APN) role as a fit for coordination of care for children with special health care needs (SHCN) is limited. The objective of this article is to describe the value of the APN's enhanced scope of knowledge and practice for relationship-based care coordination in health care homes that serve children with complex SHCN. The TeleFamilies project is provided as an example of the integration of an APN care coordinator in a health care home for children with SHCN.

The international school nurse asthma project: barriers related to asthma management in schools.

AIM: This article is a report of an international study of barriers to asthma care from the perspectives of school nurses in Reykjavik, Iceland and St. Paul, Minnesota, in the context of their schools, communities and countries. BACKGROUND: Globally, asthma affects the health and school performance of many adolescents. School nurses play a key role by providing care to adolescents with asthma in school settings. Understanding universal barriers to asthma management in schools is important for developing interventions that are effective in multiple societal contexts. DESIGN: Exploratory, descriptive study. METHODS: Parallel studies were conducted from September 2008-January 2009, through six focus groups among school nurses (n = 32, in Reykjavik n = 17 and St. Paul n = 15) who were managing asthma in adolescents. Focus groups were audio-recorded and transcribed verbatim in English or Icelandic. The Icelandic transcripts were translated into English. Descriptive content analytic techniques were used to systematically identify and categorize types of barriers to asthma care. RESULTS: School nurses in both countries identified common barriers, such as time constraints, communication challenges and school staff barriers. The primary difference was that St. Paul school nurses identified more socio-economic and health access barriers than school nurses in Reykjavik. CONCLUSION: Greater cultural and linguistic diversity and socio-economic differences in the student population in St. Paul and lack of universal healthcare coverage in the US contributed to school nurses' need to focus more on asthma management than school nurses in Reykjavik, who were able to focus more on asthma prevention and education.

Youth report of healthcare transition counseling and autonomy support from their rheumatologist.

BACKGROUND: To increase understanding of the healthcare transition (HCT) process for young people living with Juvenile Idopathic Arthritis (JIA) by examining: 1) the extent to which youth report discussing HCT topics with their rheumatologist and 2) the association between youth perceptions of autonomy support from their rheumatologist and HCT discussions. METHODS: Data are from an online survey of youth in the United States with rheumatologic conditions (n= 134). HCT discussion was measured by 4 questions from the National Survey of Children with Special Health Care Needs. Youth perception of autonomy support was measured using a validated 6-item scale. RESULTS: One third of the youth (33.7%) reported talking to their rheumatologist about transferring to adult medicine. Less than half (40.8%) of respondents talked with their rheumatologist about adult healthcare needs, and less than a quarter (22.0%) discussed acquiring health insurance as an adult. Nearly two-thirds of respondents (62.7%) reported that their rheumatologist usually/always encourages self-care responsibility. Multivariate analyses revealed significant associations between rheumatologist support for youth autonomy and HCT counseling. CONCLUSION: The low frequency of HCT counseling reported indicates a continuing need to increase awareness among rheumatologist in the USA. The strong associations between rheumatologist's support for youth autonomy and HCT counseling suggest that developmentally "in-tune" providers may deliver the best guidance about transition planning for youth living with arthritis.

Meaningful use of data in care coordination by the advanced practice RN: the TeleFamilies project.

Meaningful use of electronic health records to coordinate care requires skillful synthesis and integration of subjective and objective data by practitioners to provide context for information. This is particularly relevant in the coordination of care for children with complex special healthcare needs. The purpose of this article is to present a conceptual framework and example of meaningful use within an innovative telenursing intervention to coordinate care for children with complex special healthcare needs. The TeleFamilies intervention engages an advanced practice nurse in a full-time care coordinator role within an existing hospital-based medical home for children with complex special healthcare needs. Care coordination is facilitated by the synthesis and integration of internal and external data using an enhanced electronic health record and telehealth encounters via telephone and videoconferencing between the advanced practice nurse and the family at home. The advanced practice nurse's ability to maintain an updated plan of care that is shared across providers and systems and build a relationship over time with the patient and family supports meaningful use of these data.

Complementary and alternative medicine use among youth with juvenile arthritis: are youth using CAM, but not talking about it?

PURPOSE: To examine self-reported use and correlates of complementary and alternative medicine (CAM) in adolescents with juvenile arthritis (JA). METHODS: One hundred thirty-four adolescents with JA completed an online survey of their use of, interest in, and discussions about CAM. The PedsQL 4.0 SF15 assessed quality of life. RESULTS: The majority (72%) of youth reported using ≥1 CAM modality. Use did not differ by sex, age, race, or geographic location. The most commonly used CAM modalities were yoga (45%) and meditation, relaxation, or guided imagery (40%). Low psychosocial quality of life was associated with massage and meditation, relaxation, or guided imagery use (p < .05). Only 46% of youth reported discussing CAM with a health care provider. Nonusers were most interested in learning more about massage (79%) and yoga (57%). CONCLUSIONS: Youth with JA reported high use of CAM, but few discussed CAM with health care providers. Findings suggest practitioners should engage adolescents in discussions about CAM.

Enablers and barriers to dietary practices contributing to bone health among early adolescent Somali girls living in Minnesota.

PURPOSE: To explore the dietary factors that contribute to bone health among first generation Somali girls and to determine the social and cultural contexts that shape these health behaviors. DESIGN AND METHODS: Findings presented are from a larger, descriptive qualitative study that used a series of focus groups with four cohorts of 11- to 14-year-old Somali girls (n= 39) living in two Minnesota communities. RESULTS: Cultural tradition, developmental stage, acculturation, and environment were major factors contributing to the intake of calcium and vitamin D-rich foods. PRACTICE IMPLICATIONS: Findings provide the foundation for the development of culturally relevant promotion of foods rich in calcium and vitamin D.

Fatigue and physical performance in children and adolescents receiving chemotherapy.

PURPOSE/OBJECTIVES: To examine the relationship between physical performance and fatigue in child and adolescent cohorts during the first three cycles of chemotherapy. DESIGN: Prospective, observational design. SETTING: Two pediatric cancer centers in the upper Midwest region of the United States. SAMPLE: 16 children and 14 adolescents newly diagnosed with cancer. METHODS: Standardized instruments were administered during the first and third cycles of chemotherapy. Instruments included physical performance tests (Timed Up and Down Stairs [TUDS] and the 6-Minute Walk Test [6MWT]) and a self-report fatigue scale. MAIN RESEARCH VARIABLES: Fatigue and physical performance. FINDINGS: In the child cohort, physical performance appeared to improve and fatigue diminished from cycle 1 to 3 of chemotherapy. When time on TUDS decreased, fatigue tended to decrease; when 6MWT distance increased, fatigue decreased. In the adolescent cohort, fatigue seemed to decrease but physical performance measures evidenced little change. Correlations between changes in the physical performance variables and fatigue were not significant. CONCLUSIONS: Fatigue may decrease early in treatment as disease symptoms resolve. Fatigue in the child cohort was related to physical performance, which is consistent with previous studies that defined fatigue in children as primarily a physical sensation. Findings in the adolescent cohort support research that defined adolescent fatigue as more complex with mental, emotional, and physical components. IMPLICATIONS FOR NURSING: Knowing how fatigue relates to physical performance in children and adolescents informs the nurse in educating patients and families about symptom management.

Prime Time: 12-month sexual health outcomes of a clinic-based intervention to prevent pregnancy risk behaviors.

PURPOSE: Prime Time, a youth development intervention, aims to reduce pregnancy risk among adolescent girls seeking clinic service who are at high risk for pregnancy. This article examines sexual risk behaviors and hypothesized psychosocial mediators after 12 months of the Prime Time intervention. METHODS: This study was a randomized controlled trial with 253 girls aged 13-17 years meeting specified risk criteria. Intervention participants were involved in Prime Time programming plus usual clinic services for 18 months, control participants received usual clinic services. The intervention used a combination of case management and peer leadership programs. Participants in this interim outcomes study completed self-report surveys at baseline and 12 months after enrollment. Surveys assessed sexual risk behaviors and psychosocial factors targeted for change by Prime Time. RESULTS: At the 12-month interim, the intervention group reported more consistent use of condoms, hormonal contraception, and dual contraceptive methods with their most recent partner as compared with the control group. The intervention group also reported greater stress management skills with trends toward higher levels of prosocial connectedness at school and with family. No between-group differences were noted in psychosocial measures specific to sex and contraceptive use. CONCLUSION: Preventing early pregnancy among high-risk adolescents requires multifaceted, sustained approaches. An important research focus involves testing youth development interventions offered through clinic settings, where access to high-risk adolescents is plentiful and few efforts have emphasized a dual approach of building protective factors while addressing risk. Findings suggest that youth development interventions through clinic settings hold promise in reducing pregnancy risk among high-risk youth.

A clinic-based, youth development approach to teen pregnancy prevention.

OBJECTIVE: To provide a description of Prime Time, an intervention to reduce pregnancy risk behaviors among high-risk adolescent girls. METHODS: Prime Time, a clinic-based, multicomponent youth development intervention aims to reduce sexual risk behaviors, violence involvement, and school disconnection. RESULTS: We highlight key considerations in conceptualization, design, and methods for a Prime Time randomized trial. CONCLUSIONS: Prime Time comes at a time of great interest in restructuring adolescent health services. This study represents an important effort to expand preventive and youth development services among young people most vulnerable to early pregnancy, for whom services must go beyond traditional problem-oriented approaches.

Developing a family-centered participatory action research project.

The purpose of this article is to illustrate strategies used to design and implement a family-centered, participatory action research (PAR) project to meet the asthma information needs identified by English-, Hmong-, and Spanish-speaking parents of preschool children with asthma enrolled in a multisite, urban Head Start program. PAR is an approach that encourages researchers and those who will benefit from the research (e.g., families and community leaders) to work together in all phases of the project. PAR projects involve two core components: a needs assessment and action plan development. PAR is rooted in the cultural tradition of the participants and builds on strengths and resources in the community. Actively involving family participants and community leaders in community-based PAR projects increases the likelihood of developing interventions and resources that are culturally relevant and address family needs.

Addressing asthma management challenges in a multisite, urban Head Start program.

OBJECTIVE: To develop an action plan based on asthma management challenges identified by Head Start teachers in a multisite program. DESIGN AND SAMPLE: Qualitative, participatory action research project. Three focus groups were conducted with Head Start teachers (n=14), and 1 with Center managers (n=15) in an urban Midwestern program. MEASURES: Brief background questionnaire and semistructured focus group interview guide. Content analytic techniques were used to identify and categorize asthma management issues in transcripts of teacher focus groups. Center managers verified the findings and recommended action plan strategies to address asthma management challenges. RESULTS: Head Start staff identified 4 common challenges: (a) undiagnosed and unreported asthma, (b) coordinating asthma care with parents, (c) medication administration issues, and (d) variability among asthma action plans. The action plan focused on (a) early identification of asthma, (b) improving coordination of asthma care with parents, (c) developing more asthma education and resources for Head Start staff and parents, and (d) developing a standardized, comprehensive Head Start asthma action plan. CONCLUSIONS: Public health nurses can play a major role in ensuring quality care in Head Start programs by periodically identifying staff needs and developing strategies to address asthma management challenges.

Native Teen Voices: adolescent pregnancy prevention recommendations.

PURPOSE: American Indian adolescent pregnancy rates are high, yet little is known about how Native youth view primary pregnancy prevention. The aim was to identify pregnancy prevention strategies from the perspectives of both male and female urban Native youth to inform program development. METHODS: Native Teen Voices (NTV) was a community-based participatory action research study in Minneapolis and St. Paul, Minnesota. Twenty focus groups were held with 148 Native youth who had never been involved in a pregnancy. Groups were stratified by age (13-15 and 16-18 years) and sex. Participants were asked what they would do to prevent adolescent pregnancy if they were in charge of programs for Native youth. Content analyses were used to identify and categorize the range and types of participants' recommendations within and across the age and sex cohorts. RESULTS: Participants in all cohorts emphasized the following themes: show the consequences of adolescent pregnancy; enhance and develop more pregnancy prevention programs for Native youth in schools and community-based organizations; improve access to contraceptives; discuss teen pregnancy with Native youth; and use key messages and media to reach Native youth. CONCLUSIONS: Native youth perceived limited access to comprehensive pregnancy prevention education, community-based programs and contraceptives. They suggested a variety of venues and mechanisms to address gaps in sexual health services and emphasized enhancing school-based resources and involving knowledgeable Native peers and elders in school and community-based adolescent pregnancy prevention initiatives. A few recommendations varied by age and sex, consistent with differences in cognitive and emotional development.