Through the eyes of young sibling donors: the hematopoietic stem cell donation experience.

This qualitative study used a grounded theory approach to explore how pediatric sibling donors of a successful hematopoietic stem cell transplantation conceptualized their donation experiences. Saving my sister's (or brother's) life describes the central phenomenon identified by this purposive sample of 8 sibling donors. Five themes captured their memories: being the perfect match, stepping up, worrying about the outcome, the waiting process, and sharing a special bond. Further research surrounding changes in relational issues will provide insight into inter-sibling support and the developmental course of the sibling relationship into adulthood when intensified by a health crisis.

The pediatric sibling donor experience in hematopoietic stem cell transplant: an integrative review of the literature.

This integrative review explored and described published research findings focused on the experiences of pediatric sibling hematopoietic stem cell donors. After a comprehensive search, nine studies met the inclusion criteria of the study. There was no evidence of coordinated programs of research to effectively advance and build knowledge about the experiences of pediatric sibling donors. The limited descriptive evidence revealed that differences in the experiences of sibling donors vary by age and developmental stages; however, the use of small or repeated samples and qualitative methods limited the generalizability of study findings. Collaborative research using prospective, longitudinal designs will build and advance the evidence base for the design of developmentally appropriate interventions for pediatric sibling donors and their families.

Early Peanut Introduction in Infants: Improving Guideline Adherence With EMR Standardization.

OBJECTIVES: Peanut allergy in children is a population health problem. Evidence suggests early peanut introduction (EPI) for infants can reduce the development of peanut allergy. Primary care settings have not widely adopted guidelines recommending EPI. Peanut allergy prevention depends on primary care providers incorporating EPI guidelines into well-child check (WCC) encounters. We aimed to improve guideline adherence in a primary care setting by implementing a bundle of clinical decision support (CDS) tools. METHODS: Using quality improvement methodology, the team developed a standardized work protocol and CDS tools within an electronic medical record (EMR) at 4, 6, and 9-month WCC encounters. The team executed changes and modifications through plan-do-study-act cycles and analyzed results with statistical process control charts. RESULTS: We collected data from 445 WCC encounters from baseline through sustainability. EMR documentation of EPI guidance at 4, 6, and 9-month WCCs shifted from 13.9% to 83.5% over 12 months. Provider adoption of smart lists and templates increased from 2% to 73%, the distribution of home peanut introduction handouts increased from 5.2% to 54.1%, and caregiver-reported peanut ingestion increased from 0% to 34.6%. Diphtheria-tetanus-acellular pertussis vaccination rates remained at 100% for 6-month visits, and patient in-room time remained at 65 minutes. CONCLUSIONS: Quality improvement methodology improved documentation of EPI guidance and increased reported peanut ingestion at routine WCC encounters without impacting other measures. Broader use of bundled CDS tools and EMR standardization could further improve guideline adherence and increase early peanut introduction to prevent peanut allergy in infants.

Pacifier use: a systematic review of selected parenting web sites.

INTRODUCTION: The purpose of this study was to explore and describe content related to pacifier use on parenting Web sites. METHODS: Sixteen parenting Web sites met the inclusion criteria of the study. Two checklists were used to evaluate and describe different aspects of the Web sites. The first checklist provided a quality assessment of the Web sites. The second checklist was constructed to identify content categories of pacifier use. RESULTS: The majority of sites met quality assessment criteria. Eleven content categories regarding pacifier use were identified. Nine of the 16 sites contained eight or more of the 11 content areas. The most common types of Web pages containing pacifier information included pacifier specific (articles), questions and answer pages, and related content pages. DISCUSSION: Most of the parenting Web sites met the quality measures for online information. The content categories reflected the current controversies and information regarding pacifier use found in the expert literature. The findings of this study suggest the need to establish pacifier recommendations in the United States to guide parents and health care providers with decision making.

Being there for my baby: early responses of HIV-infected mothers with an HIV-exposed infant.

INTRODUCTION: The purpose of this study was to explore and describe the early responses of human immunodeficiency virus (HIV)-positive mothers to the birth of an HIV-exposed infant during the first 8 months of life. METHOD: This descriptive, qualitative study was part of a larger prospective longitudinal study of HIV-exposed infants born to HIV-infected women. Participants in the present study were 26 HIV-positive biologic mothers recruited from one of two Southeastern tertiary pediatric infectious disease clinics where infants were being monitored to determine their HIV status. RESULTS: "Being there for my baby" was the central theme that captured the critical importance of the baby in the lives of these mothers. Three sub-themes characterized their stories: (a) giving the baby a chance, (b) taking care of the baby, and (c) parenting as a reason to live. DISCUSSION: Pediatric nurse practitioners have the unique opportunity to use the mother-infant relationship as a medium for health care delivery. They are a critical source of support for infants and their caregivers during the first year of life. They can assess the development of trust and attachment between infants and caregivers and implement a plan to strengthen family support and resources to provide a physically and emotionally secure environment.

Infant Gastroesophageal Reflux Information on the World Wide Web.

INTRODUCTION: The purpose of this study was to describe the type and quality of health information about infant gastroesophageal reflux (GER) that a parent may find on the World Wide Web. METHODS: The data collection tool included evaluation of Web site quality and infant GER-specific content on the 30 sites that met the inclusion criteria. RESULTS: The most commonly found content categories in order of frequency were management strategies, when to call a primary care provider, definition, and clinical features. The most frequently mentioned strategies included feeding changes, infant positioning, and medications. Thirteen of the 30 Web sites included information on both GER and gastroesophageal reflux disease. Mention of the use of medication to lessen infant symptoms was found on 15 of the 30 sites. Only 10 of the 30 sites included information about parent support and coping strategies. DISCUSSION: Pediatric nurse practitioners (PNPs) should utilize well-child visits to address the normalcy of physiologic infant GER and clarify any misperceptions parents may have about diagnosis and the role of medication from information they may have found on the Internet. It is critical for PNPs to assist in the development of Web sites with accurate content, advise parents on how to identify safe and reliable information, and provide examples of high-quality Web sites about child health topics such as infant GER.

Googling for Information About Alternative Vaccination Schedules.

INTRODUCTION: The purpose of this study was to explore and describe the information a parent may find when Googling for information about alternative vaccination schedules. METHODS: The data collection tool included evaluation of Web site quality and vaccine-specific content on the 12 sites that met the inclusion criteria. RESULTS: Seven of the Web sites had a bias toward vaccination, three sites were anti-vaccine, and two sites were neutral in their stance. Three of the four Web sites authored by physicians had an antivaccine bias. Only three sites included 50% or more of the vaccine-specific content. Fewer than half of the Web sites recommended that vaccine concerns be discussed with a health care provider. Three alternate vaccine schedules were found in the study sample. DISCUSSION: Although the majority of the Web sites indicated that vaccines are important and acknowledged that parents may have legitimate concerns regarding vaccinations, few addressed parental fears surrounding vaccine safety. It would be challenging for a parent to decide what vaccine information constitutes "science" and which site is "right" when there are "expert" physicians on both sides of an intense debate. It is important for parents to bring in the vaccine information they find to facilitate an open dialogue and build trust with their health care provider.

Infant teething information on the world wide web: taking a byte out of the search.

INTRODUCTION: The purpose of this study was to describe and evaluate the quality of infant teething information on selected popular parenting Web sites. METHODS: Two checklists were used to evaluate the quality of the 16 parenting sites and infant teething-specific content included on each site. FINDINGS: Three of the 16 parenting sites did not contain teething-specific articles. Teething-specific content found on 13 of the 16 sites supported a connection between the process of teething and nonspecific symptoms with a perception that management is required. Popular management strategies included chewing on chilled objects, gingival massage, and the use of over-the-counter medications. Information about possible adverse effects of administering medications for infant teething was not found on the majority of sites. Eleven of the 16 sites advised parents to contact their primary care provider if they were uncertain about management for infant teething or whether the symptoms were related to illness. IMPLICATIONS: Although infant teething has an evidence base from which parents and professionals can make safe decisions about symptoms and treatment, translating the evidence into professional practice and health-related information on the Internet remains a challenge. Parents and pediatric health providers would benefit greatly from the development of clinical practice guidelines summarizing our present-day understanding of teething symptoms and the limited evidence supporting the use of over-the-counter medications.

Information on infantile colic on the World Wide Web.

INTRODUCTION: The purpose of this study was to explore and describe the type and quality of information on infantile colic that a parent might access on the World Wide Web. METHODS: Two checklists were used to evaluate the quality indicators of 24 Web sites and the colic-specific content. RESULTS: Fifteen health information Web sites met more of the quality parameters than the nine commercial sites. Eight Web sites included information about colic and infant abuse, with six being health information sites. DISCUSSION: The colic-specific content on 24 Web sites reflected current issues and controversies; however, the completeness of the information in light of current evidence varied among the Web sites. Strategies to avoid complications of parental stress or infant abuse were not commonly found on the Web sites. Pediatric professionals must guide parents to reliable colic resources that also include emotional support and understanding of infant crying. A best evidence guideline for the United States would eliminate confusion and uncertainty about which colic therapies are safe and effective for parents and professionals.

Building life skills for children with cystic fibrosis: effectiveness of an intervention.

BACKGROUND: With improved survival and the transformation in the course of cystic fibrosis (CF), there is a need to develop interventions to help children balance the physiologic and functional health demands of CF with psychosocial and developmental needs before the downward trajectory of CF intensifies in adolescence. OBJECTIVE: The aim of this study was to test the effectiveness of an intervention to improve psychosocial adjustment, functional health, and physiologic health in children (8-12 years of age) with CF by teaching them life skills for managing their chronic illness in their everyday lives. METHODS: A two-group, experimental, repeated-measures design was used to compare 116 children with CF randomly assigned to intervention and usual care groups at baseline and at 3, 6, and 9 months post-intervention using repeated measures multivariate analysis of variance. Children received an individual, tailored intervention during a home visit and a structured group intervention. Four instruments were used to measure psychosocial health status: Perceived Illness Experience Scale, Self-Perception Profile for Children, Social Support Scale for Children, and Children's Loneliness Scale. Functional health status was measured with the Functional Disability Inventory for Children. Physiologic status was assessed as pulmonary function (FEV1%) and physical growth. RESULTS: Compared with children in the usual care group, the participants demonstrated decreased perceived impact of illness (p < .0001) and decreased loneliness (p < .0001). At 9 months, the improvements were maintained for impact of illness (p = .01) and loneliness (p = .01), remaining significantly different from baseline. CONCLUSION: This developmentally appropriate, problem-solving, and social skills intervention has promise for decreasing the social consequences of chronic illness (CF) in children's lives.