Parenting behaviors and the well-being of children with a chronic physical condition.

INTRODUCTION: Numerous studies have identified the importance of parenting behaviors to the well-being of children with chronic physical conditions. Synthesizing the findings of these studies has potential to identify which parenting behaviors are associated with specific aspects of child well-being. METHOD: We retrieved research reports addressing the relationship between parenting behaviors and well-being in children with chronic physical conditions, and categorized parenting behaviors based on Skinner, Johnson, and Snyder's (2005) core dimensions of parenting (warmth, rejection, structure, chaos, autonomy support, and coercion) Through meta-analysis, we examined relationships between parenting dimension and child well-being variables. RESULTS: Fifty-four reports from 47 unique studies met inclusion criteria. Parent warmth was associated with less child depression, better quality of life, better physical functioning, and fewer externalizing behavior problems. Parent rejection was associated with more child depression, internalizing/externalizing behavior problems, and poorer physical functioning. Parent structure was associated with better child physical functioning. Parent chaos was associated with poorer child physical functioning. Parent autonomy support was associated with better quality of life and fewer externalizing behavior problems. Parent coercion was associated with more child depression, poorer quality of life, poorer physical function, and more internalizing behavior problems. CONCLUSION: The results identify multiple, potentially modifiable parenting dimensions associated with well-being in children with a chronic condition, which could be targeted in developing family-focused interventions. They also provide evidence that research using Skinner's core dimensions could lead to conceptualization and study of parenting behaviors in ways that would enable comparison of parenting in a variety of health and sociocultural contexts. (PsycINFO Database Record

The Nature of Family Engagement in Interventions for Children With Chronic Conditions.

Recognizing the bi-directional relationship between family functioning and child well-being in the context of childhood chronic conditions, researchers have tested family-focused interventions aimed at promoting both child and family well-being through improving the family's condition management capacity. Based on a sample of 70 interventions for families in which there was a child with a chronic physical condition, this analysis examined the nature of family engagement in the interventions. Data were extracted from the intervention reports using a standardized template; conventional content analysis was used to describe family engagement. Interventions varied in focus, structure, and level of family engagement. Investigators most often sought to improve condition control or management, with parent engagement focused on improving capacity to manage the treatment regimen. Few investigators addressed capacity building in the context of family functioning. Recommendations are made for reporting standards for family-focused interventions and for enhancing the family systems grounding of interventions.

Family Functioning and the Well-Being of Children With Chronic Conditions: A Meta-Analysis.

For children with chronic conditions, well-being is closely related to how well their families function. Most prior research syntheses on family functioning and child well-being have focused on children with a single condition, thereby limiting the potential to aggregate and build on what is known across conditions. To address this challenge, research reports were reviewed and meta-analyses conducted of findings on the relationship between family functioning and child well-being across a range of chronic physical conditions. The sample was derived from a larger systematic review study that included 1,028 reports published between January 1, 2000 and March 31, 2014. The current review includes 53 studies in which a relationship between family functioning and child well-being was analyzed using one of four family measures: Family Adaptability and Cohesion Evaluation Scales, Family Environment Scale, Family Relationship Index, or Family Assessment Device. Most studies were cross-sectional and observational (n = 43, 81%). The most frequently studied conditions were diabetes, cancer, sickle cell disease, and asthma. In 37 studies, findings were sufficiently comparable to conduct meta-analyses. Significant correlations were identified between children's psychological health and seven of nine dimensions of family functioning. Significant correlations also were found between dimensions of family functioning and children's problem behaviors, social competence, quality of life, and, to a lesser extent, adherence and physical health. Of the family dimensions, cohesion and conflict were associated most strongly with child outcomes. Understanding the specific family variables, such as conflict, linked to varied child outcomes is key for intervention development. © 2016 Wiley Periodicals, Inc.

Reimplantation surgery in patients with implantable cardioverter defibrillators: A qualitative study.

OBJECTIVE: The purpose of this study was to examine the experience of recurrent surgery for patients with implantable cardioverter defibrillators (ICD). BACKGROUND: Device replacement is typically required every 4-7 years due to battery depletion. Furthermore, recurrent surgery may be related to lead malfunction or pocket infection. METHODS: Ethnographic methods were used for data collection with 23 ICD reimplanted recipients, 12 men and 11 women, 26-85 years of age. Data were analyzed using a with-in case and cross-case method. RESULTS: Three major themes were identified: Anticipation regarding implantation with three sub-themes of logistics and social considerations, decisions regarding replacement, and financial considerations. Relinquishing control and somatic changes frame perceptions related to the operative and postoperative periods. CONCLUSIONS: The frequency of ICD reimplantation differentiates it from other surgical interventions. Perceptions varied according to past experiences and present day social, financial, and somatic differences. Recipients are resolved to life-long surgery aided by their trust in health care professionals.

The Contribution of Parent and Family Variables to the Well-Being of Youth With Arthritis.

Among developed countries, the reported prevalence of juvenile idiopathic arthritis (JIA) varies from 16 to 150 per 100,000. Previous reviews have identified risks faced by children with chronic conditions and indicate a relationship between parent/family characteristics and child adaptation. This analysis provides a mixed-methods synthesis of 29 research reports addressing the intersection of family life and JIA. Data were extracted using a structured template, and effect sizes were calculated for reported relationships between variables. Results were coded using a scheme that differentiated types of family factors. Meta-analysis revealed a moderately strong positive relationship between parent and child psychological functioning, and a medium negative relationship between family conflict and child psychosocial well-being, and parental depression and child physical functioning. Thematic analysis of qualitative results identified parenting challenges related to pain management and regimen demands. Results indicate that interventions to enhance parenting competence and family relationships may improve caregiver and patient outcomes.

Parent-to-Child Transition in Managing Cystic Fibrosis: A Research Synthesis.

Although parents and children must adhere to five primary treatments for cystic fibrosis (CF), and their roles transition over time, the scope of CF studies often has been limited to one treatment regimen or to children within a specified age range. The purpose of this mixed research synthesis study is to integrate findings from qualitative and quantitative studies addressing the transition of CF management from parent to child, as well as factors related to adherence across treatments and over time. An existing grounded theory was used as a framework to synthesize findings in 17 reports from 16 studies. The results confirm the theory and posit three additional factors that may influence parent-to-child transition of care management.

A matter of taste: evaluating the quality of qualitative research.

Driven by an impetus to standardize, numerous checklists have been devised to address quality in qualitative research, but these standards and the mindset driving them offer no language with which to speak about taste, or the aesthetic sensibilities that play such a key role in evaluating the goodness of any object. In this article, quality appraisal in qualitative research is considered in the context of taste, that is, in the discernment involved in judging the value of research and in the recognition of the key role reviewer preferences, sensibilities and membership in one or more taste communities play in these judgements. The evaluation of a study is accomplished by evaluating one or more reports from that study, and such reports may be conceived as art forms amenable to the same criteria for appraisal as poems or paintings. Taste implies judgements about the quality of objects and a person's ability to sift through and select from a store of knowledge that knowledge appropriate to judge its value. What binds a community of practitioners (here reviewers of qualitative studies) together is taste-making, or the constant refinements of judgements concerning what constitutes good and bad practice.

Timing of translation in cross-language qualitative research.

Although there is increased understanding of language barriers in cross-language studies, the point at which language transformation processes are applied in research is inconsistently reported, or treated as a minor issue. Differences in translation timeframes raise methodological issues related to the material to be translated, as well as for the process of data analysis and interpretation. In this article we address methodological issues related to the timing of translation from Portuguese to English in two international cross-language collaborative research studies involving researchers from Brazil, Canada, and the United States. One study entailed late-phase translation of a research report, whereas the other study involved early phase translation of interview data. The timing of translation in interaction with the object of translation should be considered, in addition to the language, cultural, subject matter, and methodological competencies of research team members.

Delimiting family in syntheses of research on childhood chronic conditions and family life.

Synthesis of family research presents unique challenges to investigators who must delimit what will be included as a family study in the proposed review. In this paper, the authors discuss the conceptual and pragmatic challenges of conducting systematic reviews of the literature on the intersection between family life and childhood chronic conditions. A proposed framework for delimiting the family domain of interest is presented. The framework addresses both topical salience and level of relevance and provides direction to future researchers, with the goal of supporting the overall quality of family research synthesis efforts. For users of synthesis studies, knowledge of how investigators conceptualize the boundaries of family research is important contextual information for understanding the limits and applicability of the results.

Bad thoughts: Brazilian women's responses to mothering while experiencing postnatal depression.

OBJECTIVE: this study explores Brazilian women's experiences of mothering of their infants while experiencing postnatal depression. DESIGN: a cross-language qualitative descriptive design. METHOD: the sample was composed of 15 women diagnosed with postnatal depression in a psychiatric institute in São Paulo, Brazil. Open-ended interviews were conducted and the data underwent thematic analysis. RESULTS: 13 women worried that harm would come to their infants. Seven of these women self-identified as potential sources of harm, with two women physically hurting their infants. The remaining six women worried about unknown agents, such as disease, hurting their infants. In response to these bad thoughts, women mothered their infants in one of four ways: (1) transferred care, completely delegating this task to family members; (2) shared care, asking family members to share the responsibility; (3) sole care, having to look after their infants by themselves because they had no available family support; (4) and smother care, being hyper-vigilant, constantly watching their infants and not trusting infant care to anyone else. CONCLUSIONS: the bad thoughts influenced the women's adaptation to mothering their infants. Health professionals should assess these thoughts early in the postnatal period and the women's mothering responses for the protection of mother and child.

Differentiating Behavior Initiation and Maintenance: Theoretical Framework and Proof of Concept.

Although many interventions are effective for health behavior initiation, maintenance has proven elusive. Interventions targeting maintenance often extend the duration with which initiation content is delivered or the duration of follow-up without intervention. We posit that health behavior initiation and maintenance require separate psychological processes and skills. To determine the value of operationalizing maintenance as a process separate from initiation, we conducted a pilot study of a telephone-delivered intervention to assist people in transitioning from behavior initiation to maintenance. Participants were 20 veterans who had initiated lifestyle changes during a randomized controlled trial of a cholesterol reduction intervention. After completing the randomized controlled trial, these participants were enrolled in the pilot maintenance intervention, which involved three monthly telephone calls from a nurse interventionist focusing on behavioral maintenance skills. To evaluate the feasibility and acceptability of this intervention, we assessed recruitment and retention rates as well as 4-month pre-post changes in health behaviors and associated psychological processes. We also conducted individual interviews with participants after study completion. Although not powered to detect significant changes, there was evidence of improvement in dietary intake and of maintenance of physical activity and low-density lipoprotein cholesterol during the 4-month maintenance study. Participants found it helpful to plan for relapses, self-monitor, and obtain social support, but they had mixed reactions about reflecting on satisfaction with outcomes. Participants accepted the intervention and desired ongoing contact to maintain accountability. This pilot maintenance intervention warrants further evaluation in a randomized controlled trial.

Managing large-volume literature searches in research synthesis studies.

BACKGROUND: Systematic reviews typically require searching for, retrieving, and screening a large volume of literature, yet little guidance is available on how to manage this volume. PURPOSE: We detail methods used to search for and manage the yield of relevant citations for a mixed-methods, mixed research synthesis study focused on the intersection between family life and childhood chronic physical conditions. METHODS: We designed inclusive search strings and searched nine bibliographic databases to identify relevant research regardless of methodological origin. We customized searches to individual databases, developed work-arounds for transferring large volumes of citations and eliminating duplicate citations using reference management software, and used this software as a portal to select citations for inclusion or exclusion. We identified 67,555 citations, retrieved and screened 3,617 reports, and selected 800 reports for inclusion. DISCUSSION/CONCLUSIONS: Systematic reviews require search procedures to allow consistent and comprehensive approaches and the ability to work around technical obstacles.

Turning over patient turnover: an ethnographic study of admissions, discharges, and transfers.

The impact on nursing work of patient turnover (admissions, discharges, and transfers) became evident in an ethnographic study of turbulence. The patient turnover data were generated from extensive observations, 21 formal interviews, and a year of admission and discharge records on one medical and one surgical unit. Timing of turnover events on the two units differed, but on both units admissions typically interrupted workflow more than did discharges, clustered admissions were more disruptive than staggered admissions, and patient turnover during change of shift was more disruptive than during medication administration. Understanding the complexity of patient turnover will elucidate the work involved and improve the evidence base for nurse staffing, a key determinant of quality and safety of care.

Spousal support in a behavior change intervention for cholesterol management.

OBJECTIVE: To evaluate spousal involvement in a nurse-led intervention for patients with high cholesterol in which patients set health goals and spouses learned support strategies. METHODS: Qualitative interviews were conducted with 29 patients and 26 spouses who received the intervention during a trial. Interviews were stratified by patient LDL-C change (better, same, worse). Coded text was content analyzed, and organized into thematic matrices, with columns indicating individuals (spouse or patient) and rows indicating dyads. RESULTS: Patients and spouses reported no drawbacks to spousal involvement; some patients whose LDL-C did not improve wanted more focus on spouse health. Spouses said that the nurse's expertise and interest were helpful and they were better able to communicate with patients about health. Although the program helped couples work together, spouses with better or same LDL-C talked more about functioning as a unit, whereas those whose partners had worse LDL-C talked more about functioning as individuals. CONCLUSION: Although the spousal role was accepted, there were variations in level of involvement. More active spousal involvement might relate to better patient outcomes. For less involved spouses, more focus on their health may improve commitment or involvement. PRACTICE IMPLICATIONS: These findings can inform ways to generate spousal support in future trials.

"You need a song to bring you through": the use of religious songs to manage stressful life events.

PURPOSE: To explore in a sample of older African Americans how religious songs were used to cope with stressful life events and to explore the religious beliefs associated with these songs. DESIGN AND METHODS: Sixty-five African American older adults residing in the Southeastern US participated in a qualitative descriptive study involving criterion sampling, open-ended semi-structured interviews, qualitative content analysis, and descriptive statistics. RESULTS: Religion expressed through song was a coping strategy for participants experiencing stressful life events who described feelings of being comforted, strengthened, able to endure, uplifted, and able to find peace by turning to the types of religious songs described here. Five types of songs were used including those evoking Thanksgiving and Praise, Instructive, Memory of Forefathers, Communication with God, and Life after Death. IMPLICATIONS: Religious songs are an important form of religious expression important to the mental health of older African Americans. The incorporation of religious songs into spiritual care interventions might enhance the cultural relevance of mental health interventions in this population.

Text-in-context: a method for extracting findings in mixed-methods mixed research synthesis studies.

AIM: Our purpose in this paper is to propose a new method for extracting findings from research reports included in mixed-methods mixed research synthesis studies. BACKGROUND: International initiatives in the domains of systematic review and evidence synthesis have been focused on broadening the conceptualization of evidence, increased methodological inclusiveness and the production of evidence syntheses that will be accessible to and usable by a wider range of consumers. Initiatives in the general mixed-methods research field have been focused on developing truly integrative approaches to data analysis and interpretation. DATA SOURCE: The data extraction challenges described here were encountered, and the method proposed for addressing these challenges was developed, in the first year of the ongoing (2011-2016) study: Mixed-Methods Synthesis of Research on Childhood Chronic Conditions and Family. DISCUSSION: To preserve the text-in-context of findings in research reports, we describe a method whereby findings are transformed into portable statements that anchor results to relevant information about sample, source of information, time, comparative reference point, magnitude and significance and study-specific conceptions of phenomena. IMPLICATIONS FOR NURSING: The data extraction method featured here was developed specifically to accommodate mixed-methods mixed research synthesis studies conducted in nursing and other health sciences, but reviewers might find it useful in other kinds of research synthesis studies. CONCLUSION: This data extraction method itself constitutes a type of integration to preserve the methodological context of findings when statements are read individually and in comparison to each other.

Mapping the Mixed Methods-Mixed Research Synthesis Terrain.

Mixed methods-mixed research synthesis is a form of systematic review in which the findings of qualitative and quantitative studies are integrated via qualitative and/or quantitative methods. Although methodological advances have been made, efforts to differentiate research synthesis methods have been too focused on methods and not focused enough on the defining logics of research synthesis-each of which may be operationalized in different ways-or on the research findings themselves that are targeted for synthesis. The conduct of mixed methods-mixed research synthesis studies may more usefully be understood in terms of the logics of aggregation and configuration. Neither logic is preferable to the other nor tied exclusively to any one method or to any one side of the qualitative/quantitative binary.

Examining the impact of genetic testing for type 2 diabetes on health behaviors: study protocol for a randomized controlled trial.

BACKGROUND: We describe the study design, procedures, and development of the risk counseling protocol used in a randomized controlled trial to evaluate the impact of genetic testing for diabetes mellitus (DM) on psychological, health behavior, and clinical outcomes. METHODS/DESIGN: Eligible patients are aged 21 to 65 years with body mass index (BMI) ≥27 kg/m(2) and no prior diagnosis of DM. At baseline, conventional DM risk factors are assessed, and blood is drawn for possible genetic testing. Participants are randomized to receive conventional risk counseling for DM with eye disease counseling or with genetic test results. The counseling protocol was pilot tested to identify an acceptable graphical format for conveying risk estimates and match the length of the eye disease to genetic counseling. Risk estimates are presented with a vertical bar graph denoting risk level with colors and descriptors. After receiving either genetic counseling regarding risk for DM or control counseling on eye disease, brief lifestyle counseling for prevention of DM is provided to all participants. DISCUSSION: A standardized risk counseling protocol is being used in a randomized trial of 600 participants. Results of this trial will inform policy about whether risk counseling should include genetic counseling. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT01060540.

Informing the dosing of interventions in randomized trials.

Dosing is potentially the most important decision that must be made when building or refining behavioral interventions. In this paper, we propose standardized terminology and reporting of dosing information, which would inform intervention development, refinement for dissemination, and systematic reviews of dose-response relationships. Dosing of interventions may be characterized by duration, frequency, and amount. To illustrate the value of operationalizing these three parameters to evaluate dose-response relationships, 31 published reports of behavioral interventions to increase adherence to antiretroviral therapy (ART) were reviewed. The ART literature was characterized by under-reporting of dosing parameters, heterogeneity in dosing schedules, and heterogeneity in type of control group, which complicate analysis of dose-response relationships in systematic review and determination of the optimal dose for intervention dissemination. Improved reporting of the three dosing parameters and comparison of intended to actual delivery can inform the identification of the most effective intervention doses and the efficient implementation of efficacious interventions in clinical practice.