Tensions among siblings in parent care.
Ontology highlight
ABSTRACT:
SUBMITTER: Lashewicz B
PROVIDER: S-EPMC5547296 | biostudies-other | 2009 Jun
REPOSITORIES: biostudies-other
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Project description:BACKGROUND:Although the importance of evaluating implementation fidelity is acknowledged, little is known about heterogeneity in fidelity over time. This study aims to generate insight into the heterogeneity in implementation fidelity trajectories of a health promotion program in multidisciplinary settings and the relationship with changes in patients' health behavior. METHODS:This study used longitudinal data from the nationwide implementation of an evidence-informed physical activity promotion program in Dutch rehabilitation care. Fidelity scores were calculated based on annual surveys filled in by involved professionals (n = ± 70). Higher fidelity scores indicate a more complete implementation of the program's core components. A hierarchical cluster analysis was conducted on the implementation fidelity scores of 17 organizations at three different time points. Quantitative and qualitative data were used to explore organizational and professional differences between identified trajectories. Regression analyses were conducted to determine differences in patient outcomes. RESULTS:Three trajectories were identified as the following: 'stable high fidelity' (n = 9), 'moderate and improving fidelity' (n = 6), and 'unstable fidelity' (n = 2). The stable high fidelity organizations were generally smaller, started earlier, and implemented the program in a more structured way compared to moderate and improving fidelity organizations. At the implementation period's start and end, support from physicians and physiotherapists, professionals' appreciation, and program compatibility were rated more positively by professionals working in stable high fidelity organizations as compared to the moderate and improving fidelity organizations (p < .05). Qualitative data showed that the stable high fidelity organizations had often an explicit vision and strategy about the implementation of the program. Intriguingly, the trajectories were not associated with patients' self-reported physical activity outcomes (adjusted model β = - 651.6, t(613) = - 1032, p = .303). CONCLUSIONS:Differences in organizational-level implementation fidelity trajectories did not result in outcome differences at patient-level. This suggests that an effective implementation fidelity trajectory is contingent on the local organization's conditions. More specifically, achieving stable high implementation fidelity required the management of tensions: realizing a localized change vision, while safeguarding the program's standardized core components and engaging the scarce physicians throughout the process. When scaling up evidence-informed health promotion programs, we propose to tailor the management of implementation tensions to local organizations' starting position, size, and circumstances. TRIAL REGISTRATION:The Netherlands National Trial Register NTR3961 . Registered 18 April 2013.
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Project description:BackgroundParent-focused Redesign for Encounters, Newborns to Toddlers (PARENT), is a well-child care (WCC) model that has demonstrated effectiveness in improving the receipt of comprehensive WCC services and reducing emergency department utilization for children aged 0 to 3 in low-income communities. PARENT relies on a health educator ("parent coach") to provide WCC services; it utilizes a Web-based previsit prioritization/screening tool (Well-Visit Planner) and an automated text message reminder/education service. We sought to assess intervention feasibility and acceptability among PARENT trial intervention participants.MethodsIntervention parents completed a survey after a 12-month study period; a 26% random sample of them were invited to participate in a qualitative interview. Interviews were recorded, transcribed, and analyzed using the constant comparative method of qualitative analysis; survey responses were analyzed using bivariate methods.ResultsA total of 115 intervention participants completed the 12-month survey; 30 completed a qualitative interview. Nearly all intervention participants reported meeting with the coach, found her helpful, and would recommend continuing coach-led well visits (97-99%). Parents built trusting relationships with the coach and viewed her as a distinct and important part of their WCC team. They reported that PARENT well visits more efficiently used in-clinic time and were comprehensive and family centered. Most used the Well-Visit Planner (87%), and found it easy to use (94%); a minority completed it at home before the visit (18%). Sixty-two percent reported using the text message service; most reported it as a helpful source of new information and a reinforcement of information discussed during visits.ConclusionsA parent coach-led intervention for WCC for young children is a model of WCC delivery that is both acceptable and feasible to parents in a low-income urban population.
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Project description:MEIS2 (Meis homeobox 2) encodes a homeobox protein in the three amino acid loop extension (TALE) family of highly conserved homeodomain-containing transcription regulators important for development. MEIS2 deletions/mutations have been associated with cleft lip/palate, dysmorphic facial features, cardiac defects, as well as intellectual disability at a variable severity. Here we report on one familial case that two affected siblings carry the same non-mosaic ~ 423 kb genomic deletion at 15q14 encompassing the entirety of CDIN1 and the last three exons (ex. 10, 11, 12) of the MEIS2 gene, while their unaffected father is mosaic for the same deletion in about 10% lymphocytes. Both siblings presented with mild developmental delay and bifid uvula, while no congenital cardiac abnormalities were identified. The elder sister also showed syncopal episodes and mild speech delay and the father had atrial septal defects. This is the first report showing multiple family members inherit a genomic deletion resulting in a MEIS2 partial truncation from a mosaic parent. Taken all together, this study has important implications for genetic counseling regarding recurrence risk and also points to the importance of offering MEIS2 gene tests covering both point mutations and microdeletions to individuals with milder bifid uvula and developmental delay.
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Project description:Background: The satisfaction of parents of infants in neonatal intensive care is important to parent-infant bonding and parents' ability to care for their baby, including after discharge. Given the principal caregiver role of nurses in this setting, parent satisfaction is influenced by high quality nursing care. Nursing care that is required but missed, such as counseling and support, might influence parent satisfaction. How missed nursing care relates to parent satisfaction is unknown. Objective: To describe the satisfaction of parents of infants in neonatal intensive care and to determine how satisfaction relates to missed nursing care in a sample of USA nursing units. Methods: The design was cross-sectional and correlational. Thirty neonatal intensive care units that participate in the National Database of Nursing Quality Indicators were recruited. To maximize sample variation in missed care, the highest and lowest quartile hospitals on missed nursing care, measured by nurse survey, were eligible. Ten parents of infants who were to be discharged were recruited from each site to complete a survey. Parent satisfaction was measured by the EMPATHIC-38 instrument, comprising five subscales: information, care and treatment, organization, parental participation, and professional attitude, and a total satisfaction score. Multivariate regression models were estimated. Results: Parent satisfaction was high (5.70 out of 6.00). The prevalence of missed care was 25 and 51% for low and high missed care units, respectively, and 40% for all units. On average, nurses missed 1.06 care activities; in the low and high missed care units the averages were 0.46 and 1.32. Over 10% of nurses missed activities that involved the parent, e.g., teaching, helping breastfeeding mothers, and preparing families for discharge. One standard deviation decrease in missed care activities at the unit level was associated with a 0.08-point increase in parent satisfaction with care and treatment (p = 0.01). Conclusion: Parents in USA neonatal intensive care units are highly satisfied. Neonatal intensive care nurses routinely miss care. Parent satisfaction with care and treatment is related to missed nursing care. Nursing care that is missed relates primarily to the care of the baby by the parents, which could have long term health and developmental consequences.
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