Development and Evaluation of the Pediatric Diabetes Routine Questionnaire for Parents of Young Children with Type 1 Diabetes.

This study describes the development and psychometric evaluation of the Pediatric Diabetes Routines Questionnaire for Parents of Young Children (PDRQ-PYC) with type 1 diabetes, a measure adapted from the school-age and adolescent versions of the PDRQ, to measure diabetes-specific routines in families with children under age 6 years with type 1 diabetes. Participants included 173 parents of young children with type 1 diabetes (YC-T1D) who completed measures of diabetes-specific routines, diabetes adjustment, self-efficacy, benefit finding, depression, child behavior problems, spousal support, and T1D treatment engagement. Exploratory factor analysis supported a one-factor model consisting of a unidimensional PDRQ-PYC total score. The PDRQ-PYC total score demonstrated good internal consistency, convergent validity, and criterion validity. The present study demonstrates that PDRQ-PYC is a valuable and feasible tool for measuring the consistency and regularity with which families of YC-T1D perform T1D management tasks. Along with the school-age and adolescent versions of the PDRQ, the PDRQ-PYC now provides the ability to assess diabetes-specific routines from early childhood through adolescence and findings support the notion that routines are associated with engagement in diabetes tasks.ClinicalTrials.gov Identifier NCT03222180 (first posted July 19, 2017).

Topical Review: Crowdsourcing as a Novel Approach to Qualitative Research.

OBJECTIVE: To describe a novel, five-phase approach to collecting qualitative data from hard-to-reach populations using crowdsourcing methods. METHODS: Drawing from experiences across recent studies with type 1 diabetes and congenital heart disease stakeholders, we describe five phases of crowdsourcing methodology, an innovative approach to conducting qualitative research within an online environment, and discuss relevant practical and ethical issues. RESULTS: Phases of crowdsourcing methodology are: (I) Preparing; (II) Forming Crowds; (III) Collecting Crowdsourced Data; (IV) Coding and Analyzing Crowdsourced Data; and (V) Generating and Disseminating Findings. Iterative feedback from stakeholders is obtained in all five phases. Practical and ethical issues include accessing diverse stakeholders, emotional engagement of crowd participants, responsiveness and transparency of crowdsourcing methodology, and limited personal contact with crowd participants. CONCLUSIONS: Crowdsourcing is an innovative, efficient, feasible, and timely approach to engaging hard-to-reach populations in qualitative research.

Interviews with caregivers during acute asthma hospitalisations.

Objective: Childhood asthma is complex and poor management of childhood asthma is the leading health reason for pediatric emergency department visits, hospitalizations and missed school days for school-aged children. The purpose of this study was to explore caregiver perceptions of home management of childhood asthma in school-aged children who have been hospitalized for asthma. Methods: Using qualitative descriptive design with in-depth interviews, we aimed to explore family caregiver perceptions of managing asthma in school-aged children between 5 and 12 years of age. Results: Data were collected from 17 participants; however, two transcripts were incomplete due to interruption in interview from medical team. The sample consisted of 15 families with child age mean of 8 years, and diagnosed with asthma at 2 years and 8 months. Four experts with asthma and research design analyzed all transcripts and six clear themes emerged. These themes included family or caregiver burden, care coordination, certainty or uncertainty continuum, effort to control, sign or symptom recognition, and trigger recognition. In this article, we defined each theme and identify specific statements from families on daily life when affected by childhood asthma. Conclusions: The findings of this study confirm and extend results from other studies of caregivers who have school-aged children diagnosed with asthma. This study found that families play a vital role in management of asthma on a daily basis and families often assess the overall management of asthma by all child relations throughout the day. Clinical implications are highlighted within each theme.

Development and Validation of the Parent-Preschoolers Diabetes Adjustment Scale (PP-DAS).

OBJECTIVE: This article extends work on a social-ecological model of caregiver adjustment and describes the: (a) development and (b) validation of the Parent-Preschoolers Diabetes Adjustment Scale (PP-DAS), a broad measure of caregiver adjustment. METHODS: Participants were caregivers (nstudy1 = 51; nstudy2 = 177) of very young children (<6 years old) with Type 1 diabetes (T1D). In study 1, researchers and stakeholders collaborated to develop 92 items using the 5 domains of a social-ecological model of caregiver adjustment to the challenges of raising a very young child with T1D, and parents and researchers provided feedback on these items. In study 2, confirmatory factor analysis (CFA) and exploratory factor analysis (EFA) were used to examine the factor structure of the PP-DAS. Reliability and validity were also examined. RESULTS: After review by parents and researchers, 52 items were removed resulting in the 40-item version used in study 2. The CFA demonstrated poor fit with the five proposed domains of the social-ecological model, so an EFA was conducted and supported a different five-factor solution. Twenty items were removed due to low factor loadings or communalities, resulting in a final 20-item measure. The PP-DAS demonstrated adequate internal consistency (α's = .73-.84), convergent validity with parent psychological functioning and self-efficacy in T1D management, and criterion validity with hemoglobin A1c and adherence. CONCLUSIONS: The PP-DAS is a valid and reliable measure of adjustment in caregivers of very young children with T1D. The PP-DAS may help identify caregivers who are having adjustment difficulties and would benefit from additional support.

Development and content validation of the Healthcare Transition Outcomes Inventory for young adults with type 1 diabetes.

BACKGROUND: The literature on the specification and measurement of the outcomes of the healthcare transition from pediatric to adult centered-care is scarce and methodologically weak. To address these gaps, we conducted a series of studies to develop a multidimensional, multi-informant (young adults, parents, and healthcare providers) measure of healthcare transition outcomes for young adults with type 1 diabetes (T1D), the Healthcare Transition Outcomes Inventory (HCTOI). The current study describes the development and refinement of the HCTOI item pool. METHODS: Following Patient Reported Outcomes Measurement Information System (PROMIS) standards, the research team conducted qualitative interviews to define six content domains of healthcare transition outcomes from the perspectives of multiple stakeholders, developed an initial item pool of the HCTOI based on the six domains, analyzed expert item ratings and feedback for content validation, and conducted cognitive interviews with informants (patients, parents, and healthcare providers) for further item pool refinement. RESULTS: Qualitative findings revealed six healthcare transition outcome domains: 1) Biomedical markers of T1D control; 2) Navigation of a new health care system; 3) Possession of T1D self-management skills and knowledge; 4) Integration of T1D care into emerging adult roles; 5) Balance of parental involvement with autonomy; and 6) Attainment of T1D "ownership." An initial pool of 88 items focused on the extent to which a young adult with T1D is successful on each of the six domains. Experts rated all content domains and all but six items as relevant. In addition to suggesting additional items, experts were concerned about the length of the measure, response burden, and whether every informant type would have sufficient knowledge to rate items in particular content domains. Cognitive interviews resulted in retaining all six content domains, but dropping some items and yielded fewer items for the healthcare provider version (47 items versus 54 items for the young adult- and parent-versions). CONCLUSIONS: Expert review and cognitive interviews confirmed that all six domains of HCT outcomes were relevant and both procedures resulted in retaining a sufficient number of clear and representative items for each content domain. The HCTOI represents the first multi-informant, rigorously developed item pool that comprehensively measures the multiple components of the transition from pediatric to adult specialty healthcare.

Benefit finding among parents of young children with type 1 diabetes.

Benefit finding, perceived positive effects of adversity, has been associated with psychological well-being in people with chronic illnesses and with better adherence for adolescents with type 1 diabetes (T1D). Our qualitative research with parents of young children (< 6 years old) with T1D indicated that benefit finding (BF) is a common parental coping mechanism, but no tools exist to measure BF in parents. We determined psychometric properties of the Diabetes Benefit Finding Scale for Parents (DBFS-P), a 16-item questionnaire adapted from the validated adolescent version. Parents of young children with T1D (n = 172) were participants in a randomized trial of an online intervention. We examined the DBFS-P factor structure through principal component analysis (PCA); internal consistency through Cronbach's alpha; convergent validity via bivariate correlations between the DBFS-P and measures of parental depression, anxiety, T1D self-efficacy, and hypoglycemia fear; and discriminant validity via bivariate correlations between the DBFS-P and measures of parental somatization and child behavior problems. PCA revealed one factor (56.47% variance) with Cronbach's α = 0.95. Convergent validity of the DBFS-P was supported by significant correlations with parental depression (r = -0.35, P < 0.001), anxiety (r = -0.20, P = 0.008), T1D self-efficacy (r = 0.36, P < 0.001), and hypoglycemia fear (r = 0.27, P < 0.001). Non-significant correlations with parental somatization (r = -0.06, P = 0.42) and child behavior problems (r = -0.12, P = 0.14) support its discriminant validity. The DBFS-P demonstrated good psychometric properties as a tool for assessing BF among caregivers.

Can proactive rapid response team rounding improve surveillance and reduce unplanned escalations in care? A controlled before and after study.

BACKGROUND: Unplanned escalations manifest as a breakdown of hospital care attributable to clinician error through missed or delayed identification of physiological instability, ineffective treatment, or iatrogenic harm. OBJECTIVES: To examine the impact of an Early Warning Score-based proactive rapid response team model on the frequency of unplanned intra-hospital escalations in care compared with a rapid response team model based on staff nurse identification of vital sign derangements. DESIGN: Pre- and post Early Warning Score-guided proactive rapid response team model intervention. SETTING: 237-bed community hospital in the southeastern United States. PARTICIPANTS: All hospitalized adults (n = 12,148) during a pre- and post-intervention period. METHODS: Logistic regressions used to examine the relationship between unplanned ICU transfers and rapid response team models (rapid response team vs. Early Warning Score-guided proactive rapid response team). RESULTS: Unplanned ICU transfers were 1.4 times more likely to occur during the rapid response team baseline period (OR = 1.392, 95% CI [1.017-1.905]) compared with the Early Warning Score-guided proactive rapid response team intervention period. CONCLUSIONS: This study reports a difference in the frequency of unplanned escalations using different rapid response models, with fewer unplanned ICU transfers occurring during the use of Early Warning Score-guided proactive rapid response team model while accounting for differences in admission volumes, age, gender and comorbidities. Implementation of this model has implications for patient outcomes, hospital operations and costs.

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design.

BACKGROUND: Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents' ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents. User-centered design (UCD) of a continuously accessible Web-based resource could be a mechanism for helping parents of YC-T1D cope more effectively with the complex challenges they face by providing them with information, solutions, and emotional support. OBJECTIVE: The objectives of this paper are to (1) describe the application of UCD principles to the development of a Web-based coping intervention designed by and for parents of very young children (<6 years old) with T1D; (2) illustrate the use of crowdsourcing methods in obtaining the perspectives of parents, health care providers, and Web development professionals in designing and creating this resource; and (3) summarize the design of an ongoing randomized controlled trial (RCT) that is evaluating the effects of parental access to this resource on pertinent child and parent outcomes. METHODS: This paper illustrates the application of UCD principles to create a Web-based coping resource designed by and for parents of YC-T1D. A Web-based Parent Crowd, a Health Care Provider Crowd, and a Focus Group of minority parents provided input throughout the design process. A formal usability testing session and design webinars yielded additional stakeholder input to further refine the end product. RESULTS: This paper describes the completed website and the ongoing RCT to evaluate the effects of using this Web-based resource on pertinent parent and child outcomes. CONCLUSIONS: UCD principles and the targeted application of crowdsourcing methods provided the foundation for the development, construction, and evaluation of a continuously accessible, archived, user-responsive coping resource designed by and for parents of YC-T1D. The process described here could be a template for the development of similar resources for other special populations that are enduring specific medical or psychosocial distress. The ongoing RCT is the final step in the UCD process and is designed to validate its merits.

Flourishing: An Evolutionary Concept Analysis.

PURPOSE: Mental health is an important measure of public health (WHO, 2004); however, nursing practice and research continues to prioritize mental illness, rather than well-being (Wand, 2011). Flourishing is a recent concept in the field of well-being. The term has been used sparingly in nursing practice and research, and conceptual clarification is needed to promote comprehensive understanding of the phenomenon. The purpose of this study is to critically analyze flourishing, assess the maturity of the concept, and provide recommendations for future research, education, and practice. METHOD: The concept of flourishing was analyzed using the evolutionary approach to concept analysis (Rodgers, 2000). A search for articles on flourishing within the context of well-being was conducted through CINAHL, MEDLINE, and PsycINFO. A sample of 32 articles and 1 book was reviewed. Data were reviewed for concept attributes, antecedents, consequences, surrogate terms and related concepts. FINDINGS: Four models of flourishing were identified with six overlapping attributes: meaning, positive relationships, engagement, competence, positive emotion, and self-esteem. Limited longitudinal and predictive studies have been conducted, but there is evidence for several antecedents and outcomes of flourishing. Research is ongoing primarily in psychology and sociology and is lacking in other disciplines. DISCUSSION: The concept of flourishing is immature; however, evidence is building for related concepts. A lack of consistent terminology regarding flourishing prevents knowledge development of flourishing as a distinct concept. Further multidisciplinary research is needed to establish standard operational and conceptual definitions and develop effective interventions.

Health Care Transition for Young Adults With Type 1 Diabetes: Stakeholder Engagement for Defining Optimal Outcomes.

Objectives: Research on the transition to adult care for young adults with type 1 diabetes (T1D) emphasizes transition readiness, with less emphasis on transition outcomes. The relatively few studies that focus on outcomes use a wide variety of measures with little reliance on stakeholder engagement for measure selection. Methods: This study engaged multiple stakeholders (i.e., young adults with T1D, parents, pediatric and adult health care providers, and experts) in qualitative interviews to identify the content domain for developing a multidimensional measure of health care transition (HCT) outcomes. Results: The following constructs were identified for a planned measure of HCT outcomes: biomedical markers of T1D control; T1D knowledge/skills; navigation of a new health care system; integration of T1D into emerging adult roles; balance of parental involvement with autonomy; and "ownership" of T1D self-management. Discussion: The results can guide creation of an initial item pool for a multidimensional profile of HCT outcomes.

The Ups and Downs of Parenting Young Children With Type 1 Diabetes: A Crowdsourcing Study.

Objectives: Parenting young children with type 1 diabetes (YC-T1D) entails pervasive challenges; parental coping may influence child and parent outcomes. This study used a qualitative descriptive design to describe these challenges comprehensively to inform the user-centered design of an Internet coping resource for parents. Methods: A "Parent Crowd" of 153 parents of children with T1D onset at ≤ 5 years old submitted textual responses online to open-ended questions about parenting YC-T1D. Systematic coding organized responses into domains, themes, and examples. A supplemental focus group of racial/ethnic minority parents enhanced the sample's diversity and validated findings from the Parent Crowd. Results: Similar domains and themes emerged from responses of crowdsourcing and focus group participants. In each domain, parenting YC-T1D was challenging, but there was also substantial evidence of positive coping strategies and adaptability. Conclusions: The study yielded rich data to inform user-centered design of an Internet resource for parents of YC-T1D.

Longitudinal study of stress, social support, and depression in married Arab immigrant women.

Using a stress and social support framework, this study explored the trajectory of depression in 388 married Arab immigrant women. The women provided three panels of data approximately 18 months apart. Depression at Time 3 was regressed on Time 1 depression, socio-demographic variables, and rate of change over time in stress and social support. The regression model was significant and accounted for 41.16% of the variation in Time 3 depression scores. Time 1 depression, English reading ability, husband's employment status, changes over time in immigration demands, daily hassles, and social support from friends were associated with Time 3 depression.

Daily hassles, mother-child relationship, and behavior problems in Muslim Arab American adolescents in immigrant families.

OBJECTIVE: This longitudinal study examines reciprocal and dynamic relations among daily hassles, the mother-child relationship, and adolescent behavior problems and whether the relations differed by sociodemographic variables. METHOD: Three waves of data about adolescent daily hassles, quality of the mother-child relationship, and adolescent behavior problems were collected from 454 Arab Muslim adolescents and their immigrant mothers over a 3-year period. Cross-lagged structural equation modeling (SEM) was used to examine reciprocal relations among the study variables. RESULTS: Relations between the mother-child relationship and adolescent behavior problems were reciprocal, with a poor mother-child relationship contributing to greater behavior problems and behavior problems contributing to a decline in the quality of the mother-child relationship. Relations involving daily hassles were unidirectional: A better mother-child relationship contributed to fewer daily hassles and behavior problems contributed to more daily hassles but daily hassles did not contribute to more behavior problems. Father's education was the only sociodemographic variable that was significant: Adolescents with more highly educated fathers had a better mother-child relationship and fewer behavioral problems. CONCLUSIONS: Findings suggest that Arab American Muslim adolescents with behavior problems are differentially exposed to daily hassles but daily hassles are not the best point of intervention. Bidirectional relations between the mother-child relationship and adolescent behavior problems suggest intervening to improve the mother-child relationship and manage symptoms of adolescent behavior problems. (PsycINFO Database Record

Commentary: Writing and Evaluating Qualitative Research Reports.

OBJECTIVE: To provide an overview of qualitative methods, particularly for reviewers and authors who may be less familiar with qualitative research. METHODS: A question and answer format is used to address considerations for writing and evaluating qualitative research. RESULTS AND CONCLUSIONS: When producing qualitative research, individuals are encouraged to address the qualitative research considerations raised and to explicitly identify the systematic strategies used to ensure rigor in study design and methods, analysis, and presentation of findings. Increasing capacity for review and publication of qualitative research within pediatric psychology will advance the field's ability to gain a better understanding of the specific needs of pediatric populations, tailor interventions more effectively, and promote optimal health.

First-Time Mothers with a History of Infertility: Their Internalized Pressure to Breastfeed.

BACKGROUND: The meaning of breastfeeding and breastfeeding experiences has been studied extensively in general and specific populations. However, there is little research about the meaning of breastfeeding and breastfeeding experiences in first-time mothers who were previously infertile. OBJECTIVE: This article aims to understand the breastfeeding experiences of new mothers with a history of infertility. METHODS: Twelve women who were first-time mothers and conceived their infants through fertility treatments were interviewed about their early postpartum experiences as part of a larger phenomenological study. Interview transcripts were reviewed, and data about breastfeeding were extracted and analyzed using thematic analysis. RESULTS: One main theme from the breastfeeding data emerged, "Internalized Pressure to Breastfeed," with 3 subthemes: "My Only Chance to Breastfeed," "The One Natural Thing I Should Be Able to Do," and "Not Breastfeeding Means Failing at Motherhood." New mothers who have undergone fertility treatment equated breastfeeding with being the perfect mother and attached special meanings to the act of breastfeeding. CONCLUSION: This study demonstrated that mothers who were previously infertile have unique breastfeeding experiences. Health care professionals need to be sensitized to these women's internalized pressure to breastfeed. Additional research is needed to fully explore the breastfeeding experiences of this group of women.

The early postpartum experience of previously infertile mothers.

OBJECTIVE: To explore the lived experience of becoming a new mother from the unique perspectives of previously infertile women. DESIGN: A descriptive phenomenological design was used to extract the fundamental structure of the postpartum experience of previously infertile mothers. SETTING: Central Florida. PARTICIPANTS: Twelve first-time, previously infertile mothers age 27 to 43 years. METHODS: Face-to-face interviews were conducted twice with each participant. Recorded interviews were transcribed verbatim and analyzed using Colaizzi's approach. RESULTS: Two main themes emerged that described the early postpartum experience of first-time, previously infertile mothers: (a) lingering identity as infertile and (b) gratitude for the gift of motherhood. Participants reported that their lingering identities as infertile and immense gratitude for the gift of motherhood propelled them to establish unrealistic expectations to be perfect mothers. When they were unable to live up this expectation, they censored their feelings of inadequacy, guilt, and shame. CONCLUSION: Findings from this study may help to sensitize health care providers to the difficulties faced by previously infertile women during their transition to motherhood.

Longitudinal study of daily hassles in adolescents in Arab Muslim immigrant families.

This study investigated which daily hassles (i.e., parent, school, peer, neighborhood, and resource) were perceived by Arab Muslim immigrant adolescents as most stressful over a three-year time period and according to child's gender and mother's immigration status (i.e., refugee or non refugee). Data were collected at three time points during adolescence and analyzed using doubly multivariate analysis of covariance with linear and quadratic trends. School and parent hassles were greater than other hassles at every time point. Main effects of time, immigration status, and father's employment, but not child's gender, were statistically significant. School and parent hassles increased while peer and resource hassles decreased over time. Adolescents with refugee mothers reported greater school and neighborhood and fewer parent hassles than those with non refugee mothers. Adolescents with unemployed fathers reported significantly more school and neighborhood hassles. Study findings identify two at risk subgroups: those adolescents with refugee mothers and/or those adolescents with unemployed fathers; and pinpoint problematic daily hassles. Additional research is needed to explore vicarious trauma effects as a potential underlying reason for the pattern of daily hassles noted in adolescents with refugee mothers.

"A bump in the road": older women's views on surviving breast cancer.

Due to the aging of the Baby Boomer generation, surviving with breast cancer will become more common, but also more complicated, as older women are often dealing with additional chronic illnesses and problems of aging. The purpose of this qualitative study was to explore how older women view surviving breast cancer in context with aging. Findings suggest that most women are able to put their cancer experience in the background and come to view breast cancer as a bump in the road through expecting illness with aging, putting cancer in perspective, and sensing a partnership.

Adapting large batteries of research measures for immigrants.

A four-step, streamlined process to adapt a large battery of measures for a study of mother-child adjustment in Arab Muslim immigrants and the lessons learned are described. The streamlined process includes adapting content, translation, pilot testing, and extensive psychometric evaluation but omits in-depth qualitative inquiry to identify the full content domain of the constructs of interest and cognitive interviews to assess how respondents interpret items. Lessons learned suggest that the streamlined process is not sufficient for certain measures, particularly when there is little published information about how the measure performs with different groups, the measure requires substantial item revision to achieve content equivalence, and the measure is both challenging to translate and has little to no redundancy. When these conditions are present, condition-specific procedures need to be added to the streamlined process.

Interactive performance and focus groups with adolescents: the power of play.

Conducting focus groups with adolescents can be challenging given their developmental needs, particularly with sensitive topics. These challenges include intense need for peer approval, declining social trust, short attention span, and reliance on concrete operations thinking. In this article, we describe an adaptation of interactive performance as an alternative to traditional focus group method. We used this method in a study of discrimination experienced by Muslims (ages 13-17) and of peer pressure to engage in sexual behavior experienced by Hispanic girls (ages 10-14). Recommendations for use of this method include using an interdisciplinary team, planning for large amounts of disclosure towards the end of the focus group, and considering the fit of this method to the study topic.