From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically.

Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique needs and abilities which hinders their care. Objectives: This study aimed to understand the challenges and suggested approaches parents identified to seeing their child holistically. Design: Cross-sectional qualitative study. Setting/Subjects: Parents/legal guardians of children with SNI at a tertiary pediatric academic center in the United States completed 1:1 interviews between August 2019 and February 2020. Measurements: Qualitative researchers with expertise in care for children with SNI, palliative care, and bioethics used thematic content analysis to inductively analyze data for relevant themes. Results: Twenty-five parents/legal guardians of 23 children with SNI participated. Sixty-eight percent were mothers and 24% were fathers; and 68% were white. Thirty-two percent were from other racial and/or ethnic backgrounds. Children predominantly had congenital/chromosomal (n = 15, 65%) and central nervous system static (n = 6, 26%) SNI diagnoses. Four themes emerged regarding both challenges and approaches to understanding children with SNI holistically. These included uniqueness, interdependency, complexity, and universality. Parents felt that by eliciting and incorporating their perspective on these sometimes contrasting but inherently necessary aspects of their child's care, clinicians would understand their children more fully. Conclusion: By viewing the child through the prismed lens of parents, participants described how clinicians could transition from a monochromatic to a technicolor view of their child-including the inherent contrasting needs required for their comprehensive care.

Patient perspectives on how to demonstrate respect: Implications for clinicians and healthcare organizations.

OBJECTIVE: Clinicians and healthcare organizations are ethically obligated to treat patients with respect, yet it is not clear what actions best demonstrate respect to patients. This exploratory qualitative study aimed to understand what actions on both an individual and organizational level effectively demonstrate respect for primary care patients. METHODS: We conducted semi-structured telephone interviews with primary care patients in an integrated healthcare delivery system in Oregon and an integrated safety net health system in Colorado who were participating in a genomics implementation research study of a hereditary cancer screening program. We systematically coded interview transcripts using a coding framework developed based on iterative review of the interview guide and transcripts. We further analyzed the data coded with sub-codes relating to patients' experiences with respect in healthcare using a descriptive content analysis approach. RESULTS: We interviewed 40 English-speaking (n = 30, 75%) and Spanish-speaking (n = 10, 25%) patients. Most interviewees identified as female (n = 35, 88%) and either Hispanic/Latino(a) (n = 17, 43%) or White or European American (n = 15, 38%). Interviewees identified two categories of efforts by individual clinicians that demonstrate respect: engaging with patients and being transparent. They identified five efforts by healthcare organizations: promoting safety and inclusivity, protecting patient privacy, communicating about scheduling, navigating financial barriers to care, and ensuring continuity of care. CONCLUSIONS: Our findings suggest that patients' experiences of respect depend on efforts by individual clinicians as well as healthcare organizations. Our findings offer insight into how clinicians can build stronger partnerships with patients and how organizations can seek to promote access to care and patient safety and comfort. They also illustrate areas for future research and quality improvement to more effectively respect patients.

Integrating primary and secondary care for children and young people: sharing practice.

OBJECTIVE: To share innovative practice with enough detail to be useful for paediatricians involved in planning services. DESIGN: A review of practice, adopting a realist approach. SETTING: We collected detailed information about five initiatives which were presented at two meetings in July and October 2014 and telephone interviews between July and November 2014 with key informants, updating information again in February 2015. RESULTS: The five case studies involved three clinical commissioning groups (CCGs): Islington CCG and Southwark and Lambeth CCG in London and Taunton CCG in the Southwest. All five initiatives involved acute paediatric units. We heard about four distinct types of services designed to bring paediatric expertise into primary care and/or improve joint working between paediatricians and primary care professionals: telephone multidisciplinary team, hospital at home, general practitioner (GP) outreach clinics, and advice and guidance. We defined four common ways that initiatives might work: promoting shared responsibility; upskilling GPs; establishing relationships between paediatricians and primary healthcare professionals; and by taking specialist care to the patient. CONCLUSIONS: We derived common aims and mechanisms and generated programme (mid-level) theory for each integrated care initiative about how they might work. These descriptions of what is being done can inform debate about which interventions should be prioritised for wider implementation. There is an urgent need for evaluation of these interventions and more indepth research into how mechanisms and their effectiveness could be assessed.

Trading of intensity and interaural coherence in dichotic pitch stimuli.

When a signal is added to noise in the NoSπ binaural configuration, a reduction in interaural coherence, ρ, occurs at the signal frequency and increases in tone intensity decrease ρ. Corresponding manipulations of ρ result in the perception of a phantom signal which increases in loudness as ρ decreases [Culling et al. (2001). J. Acoust. Soc. Am. 110, 1020-1029]. In the present study, a narrow sub-band of noise (462-539 Hz) embedded within a broadband (0-3 kHz) diotic noise was manipulated in both intensity and ρ in a 3-interval, odd-one-out task. In the reference intervals, ρ was zero and the spectrum was flat. In the target interval, both ρ and the intensity of the target band were incremented giving opposing effects on loudness. Correct identification of the target interval followed a V-shape as a function of the size of intensity increment. The minimum of this function was often at chance performance, indicating that monaurally and binaurally evoked loudness were fully traded. These results show that reduction in ρ at a given frequency produces increased loudness at that frequency equivalent to up to 6 dB and consistent with an equalization-cancellation mechanism whose binaural output is strongly weighted compared to monaural excitation.

Manipulation of lipid bioaccessibility of almond seeds influences postprandial lipemia in healthy human subjects.

BACKGROUND: Plant cell walls are known to influence the rate and extent of lipid release from plant food tissues during digestion; however, the effect of cell wall structure on postprandial lipemia is unknown. OBJECTIVE: The objective was to investigate the effects of lipid release (bioaccessibility) on postprandial lipemia by comparing lipid encapsulated by cell walls with lipid present as free oil. DESIGN: A randomized crossover trial (n = 20 men) compared the effects of 3 meals containing 54 g fat provided as whole almond seed macroparticles (WA), almond oil and defatted almond flour (AO), or a sunflower oil blend as control (CO) on postprandial changes in oxidative stress (8-isoprostane F(2)alpha concentrations), vascular tone (peripheral augmentation index), and plasma triacylglycerol, glucose, and insulin concentrations. RESULTS: The postprandial increase in plasma triacylglycerol was lower [74% and 58% lower incremental area under curve (iAUC)] after the WA meal than after the AO and CO meals (P < 0.001). Increases in plasma glucose concentrations (0-180 min) were significantly higher after the WA meal (iAUC: 114; 95% CI: 76, 153) than after the AO meal (iAUC: 74; 95% CI: 48, 99) (P < 0.05), but no significant differences from the CO meal were observed (iAUC: 88; 95% CI: 66, 109). The peak reductions in peripheral augmentation index after the WA, AO, and CO meals (-9.5%, -10.1%, and -12.6%, respectively, at 2 h) were not significantly different between meals. Plasma 8-isoprostane F(2)alpha and insulin concentrations did not differ significantly between meals. CONCLUSIONS: The bioaccessibility of lipid in almond seeds, which is regulated by the structure and properties of cell walls, plays a primary role in determining postprandial lipemia.