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.

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.

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.

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.

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.

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

"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.

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.

Discrimination against Muslim American adolescents.

Although there is ample evidence of discrimination toward Muslim Americans in general, there is limited information specific to Muslim American adolescents. The few existing studies specific to this age group suggest that Muslim American adolescents encounter much discrimination from teachers, school administrators, and classmates. This descriptive qualitative study complements the few existing studies on Muslim American adolescents by obtaining in-depth description of the discrimination they encounter. The sample was 14 Muslim American adolescents who participated in one of two gender-specific focus groups about their discrimination experiences. Findings identified school settings as rife with discrimination toward Muslims, portrayed Muslim girls as at risk for harassment by strangers in public places, and illustrated how Muslim youth cope with discrimination. The study findings sensitize school nurses to the nature of the problem and provide direction for intervention.

A longitudinal family-level model of Arab Muslim adolescent behavior problems.

Arab-American Muslim adolescents in immigrant families face a number of challenges that put them at risk for behavior problems. This study of Arab-American Muslim Adolescents and their relatively recent immigrant mothers tested a longitudinal family-level model of adolescent behavior problems. Mother-adolescent dyads (N = 530) completed measures of maternal and adolescent stressors, active and avoidance coping, and social support; maternal distress; quality of mother-child relationship; and adolescent behavior problems at Time 1 and approximately 18 months later. The youth were between the ages of 11 and 15 years at Time 1 and 48.7% were girls. Longitudinal analyses were conducted using latent change modeling with change scores from Time 1 and Time 2 data. Social support facilitated active coping for both mothers and adolescents. Although maternal avoidance coping mediated maternal stressors and its effect on maternal distress, maternal stressors and maternal distress were not related to adolescent behavior problems. The only factor mitigating the effects of adolescent stressors on adolescent behavior problems was the quality of the mother-child relationship. These findings suggest that adolescents are insulated from maternal stress and distress as long as there is a good mother-child relationship.

Premigration persecution, postmigration stressors and resources, and postmigration mental health: a study of severely traumatized U.S. Arab immigrant women.

BACKGROUND: Competing theories exist regarding the importance of premigration trauma as compared with postmigration stressors and resources with respect to the risk to immigrant mental health. OBJECTIVE: To examine how type of premigration trauma, postmigration stressors, and postmigration resources differentially predict posttraumatic stress disorder (PTSD) and major depressive disorder (MDD) symptomatology in Arab immigrant women who have been exposed to premigration trauma. DESIGN: Descriptive, using multinomial logistic regression to explain membership in one of four groups: (a) PTSD only (n = 14), (b) MDD (n = 162), (c) comorbid PTSD-MDD (n = 148), and (d) subclinical symptoms (n = 209). RESULTS: Parameter estimates for postimmigration-related stressors (as measured by the Demands of Immigration [DI]) indicated that a unit increase in DI scores was associated with a nearly 16-fold increase in the likelihood of being in the comorbid relative to the subclinical group, and a nearly 2.5-fold increase in the likelihood of being in the comorbid relative to the MDD-only group (p < .05). Odds ratios for social support, age, and type of premigration trauma ranged between 0.95 and 1.95 and only differentiated between subclinical and comorbid PTSD-MDD groups (p < .05). CONCLUSION: Postmigration stressors exert substantive effects on immigrant mental health outcomes. Nursing interventions are needed to reduce immigration-related stressors. Screening Arab immigrant women for depression and PTSD is important, given the high levels observed in this community-based sample.

Adaptation and psychometric evaluation of the Multidimensional Scale of Perceived Social Support for Arab immigrant women.

We adapted the Multidimensional Scale of Perceived Social Support (MSPSS) for use with Arab immigrant women (MSPSS-AW) and estimated the psychometric properties of the adapted version with a sample of 539 Arab immigrant women living in the United States. Confirmatory factor analysis (CFA) supported the proposed three-factor solution. Internal consistency reliability coefficients for the three subscales ranged from good to very good. Additional evidence for construct validity of the MSPSS-AW subscales was demonstrated through relationships with theoretically related measures. We conclude that the MSPSS-AW is reliable and valid for use with Arab immigrant women.

Factor Structure of the Denyes Self Care Practice Instrument (DSCPI-90).

This study evaluates the factor structure and concurrent validity of a measure of self-care, the Denyes Self Care Practice Instrument (DSCPI-90), when used with adults. Three hundred eight participants complete the 18-item DSCPI-90 and a measure of general health status. Data are examined using descriptive statistics, exploratory factor analysis, and correlation. An efficient 12-item, two-factor model is identified. Reducing the number of items from 18 to 12 does not have an untoward effect on either scale reliability or the amount of variance explained. Correlations with a measure of health status are modest, lending validity to the construct of self-care as being distinct from, yet related to, health status. It is concluded that the 12-item version of the DSCPI is reliable and valid when used with adults.

Adaptation and psychometric evaluation of the multidimensional scale of perceived social support for Arab American adolescents.

The multidimensional scale of perceived social support (MSPSS) was revised for Arab American adolescents (MSPSS-AA). Items measuring social support from significant others were omitted and items measuring support from school personnel were added based on advice from cultural experts. The sample consisted of 635 Arab American young adolescents in metropolitan Detroit. Confirmatory factor analysis (CFA) supported the proposed three-factor solution (family, friends, and school personnel). Internal consistency coefficients for the three subscales of family (alpha = 0.63), friends (alpha = 0.75), school personnel (alpha = 0.72) were good. As predicted, perceived support from family, friends, and school personnel were inversely related to self reports of daily hassles and internalizing behavior and positively related to assistance seeking coping, which provides evidence for construct validity. Support for discriminant validity was also demonstrated with significantly larger correlations between the MSPSS-AA Family subscale and daily hassles specific to parents and the MSPSS-AA Friend subscale and daily hassles specific to peers. These finding suggest that the MSPSS-AA is reliable and valid for use with Arab-American adolescents.

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.