Emerging communities of child-healthcare practice in the management of long-term conditions such as chronic kidney disease: Qualitative study of parents' accounts

Background: Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management. Methods. The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept. Results: Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents' efficacy of care and Fear of the child's health failing; and (3) Belonging/Becoming (Parents defining task and group members' worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease. Conclusions: Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child's healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions. © 2014 Carolan et al.; licensee BioMed Central Ltd

Effective Hamiltonian Approach to Hyperon Beta Decay with Final-State Baryon Polarization

Using an effective Hamiltonian approach, we obtain expressions for hyperon beta decay final-state baryon polarization. Terms through second order in the energy release are retained. The resulting approximate expressions are much simpler and more compact than the exact expressions, and they agree closely with them.Comment: 1 Figure Will appear in Phys Rev D 60 Article 117505 (Dec 1, 1999

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration

Background: Mobile apps for mobile phones and tablet devices are widely used by children and young people aged 0-18 years with long-term health conditions, such as chronic kidney disease (CKD), and their healthy peers for social networking or gaming. They are also poised to become a major source of health guidance. However, app development processes that are coproduced, rigorously developed, and evaluated to provide tailored, condition-specific, practical advice on day-to-day care management are seldom systematic or sufficiently described to enable replication. Furthermore, attempts to extrapolate to the real world are hampered by a poor understanding of the effects of key elements of app components. Therefore, effective and cost-effective novel, digital apps that will effectively and safely support care management are critical and timely. To inform development of such an app for children with CKD, a user requirements-gathering exercise was first needed. Objective: To explore the views of children with CKD, their parents, and health care professionals to inform future development of a child-focused, care-management app. Methods: Using age- and developmentally appropriate methods, we interviewed 36 participants: 5-10-year-olds (n=6), 11-14-year-olds (n=6), 15-18-year-olds (n=5), mothers (n=10), fathers (n=2), and health care professionals (n=7). Data were analyzed using Framework Analysis and behavior change theories. Results: Of the 27 interviews, 19 (70%) interviews were individual and 8 (30%) were joint—5 out of 8 (63%) joint interviews were with a child or young person and their parent, 1 out of 8 (13%) were with a child and both parents, and 2 out of 8 (25%) were with 2 professionals. Three key themes emerged to inform development of a software requirement specification for a future home-based, digital care-management app intervention: (1) Gaps in current online information and support, (2) Difficulties experienced by children with a long-term condition, and (3) Suggestions for a digital care-management app. Reported gaps included the fact that current online information is not usually appropriate for children as it is “dry” and “boring,” could be “scary,” and was either hard to understand or not relevant to individuals’ circumstances. For children, searching online was much less accessible than using a professional-endorsed mobile app. Children also reported difficulty explaining their condition to others, maintaining treatment adherence, coping with feeling isolated, and with trying to live a “normal” life. There was recognition that a developmentally appropriate, CKD-specific app could support the process of explaining the condition to healthy peers, reducing isolation, adhering to care-management plans, and living a “normal” life. Participants recommended a range of media and content to include in a tailored, interactive, age- and developmentally appropriate app. For example, the user would be able to enter their age and diagnosis so that only age-appropriate and condition-specific content is displayed. Conclusions: Future development of a digital app that meets the identified information and support needs and preferences of children with CKD will maximize its utility, thereby augmenting CKD caregiving and optimizing outcomes

An interactive health communication application for supporting parents managing childhood long-term conditions: outcomes of a randomized controlled feasibility trial

Background: Families living with chronic or long-term conditions such as chronic kidney disease (CKD), stages 3-5, face multiple challenges and respond to these challenges in various ways. Some families adapt well while others struggle, and family response to a condition is closely related to outcome. With families and professionals, we developed a novel condition-specific interactive health communication app to improve parents’ management ability—the online parent information and support (OPIS) program. OPIS consists of a comprehensive mix of clinical caregiving and psychosocial information and support. Objective: The purpose of this study was to (1) assess feasibility of a future full-scale randomized controlled trial (RCT) of OPIS in terms of recruitment and retention, data collection procedures, and psychometric performance of the study measures in the target population, and (2) investigate trends in change in outcome measures in a small-scale RCT in parents of children with CKD stages 3-5. Methods: Parents were recruited from a pediatric nephrology clinic and randomly assigned to one of two treatment groups: usual support for home-based clinical caregiving (control) or usual support plus password-protected access to OPIS for 20 weeks (intervention). Both groups completed study measures at study entry and exit. We assessed feasibility descriptively in terms of recruitment and retention rates overall; assessed recruitment, retention, and uptake of the intervention between groups; and compared family condition management, empowerment to deliver care, and fathers’ involvement between groups. Results: We recruited 55 parents of 39 children (42% of eligible families). Of those, about three-quarters of intervention group parents (19/26, 73%) and control group parents (22/29, 76%) were retained through completion of 20-week data collection. The overall retention rate was 41/55 (75%). The 41 parents completing the trial were asked to respond to the same 10 questionnaire scales at both baseline and 20 weeks later; 10 scores were missing at baseline and nine were missing at 20 weeks. Site user statistics provided evidence that all intervention group parents accessed OPIS. Analysis found that intervention group parents showed a greater improvement in perceived competence to manage their child’s condition compared to control group parents: adjusted mean Family Management Measure (FaMM) Condition Management Ability Scale intervention group 44.5 versus control group 41.9, difference 2.6, 95% CI -1.6 to 6.7. Differences between the groups in the FaMM Family Life Difficulty Scale (39.9 vs 36.3, difference 3.7, 95% CI -4.9 to 12.2) appeared to agree with a qualitative observation that OPIS helped parents achieve understanding and maintain awareness of the impact of their child’s condition. Conclusions: A full-scale RCT of the effectiveness of OPIS is feasible. OPIS has the potential to beneficially affect self-reported outcomes, including parents’ perceived competence to manage home-based clinical care for children with CKD stage 3-5. Our design and methodology can be transferred to the management of other childhood conditions. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): 84283190; http://www.controlled-trials.com/ISRCTN84283190 (Archived by WebCite at http://www.webcitation.org/6TuPdrXTF)

Search for the Rare Decays KL->pi0pi0mu+mu- and KL->pi0pi0X0->pi0pi0mu+mu-

The KTeV E799 experiment has conducted a search for the rare decays KL->pi0pi0mu+mu- and KL->pi0pi0X0->pi0pi0mu+mu-, where the X0 is a possible new neutral boson that was reported by the HyperCP experiment with a mass of (214.3 pm 0.5) MeV/c^{2}. We find no evidence for either decay. We obtain upper limits of Br(KL->pi0pi0X0->pi0pi0mu+mu-) pi0pi0mu+mu-) < 9.2 x 10^{-11} at the 90% confidence level. This result rules out the pseudoscalar X0 as an explanation of the HyperCP result under the scenario that the \bar{d}sX0 coupling is completely real

Search for the Rare Decay K_{L}\to\pi^{0}\pi^{0}\gamma

The KTeV E799 experiment has conducted a search for the rare decay $K_{L}\to\pi^{0}\pi^{0}\gamma$ via the topology $K_{L}\to\pi^{0}\pi^{0}_D\gamma$ (where $\pi^0_D\to\gamma e^+e^-$). Due to Bose statistics of the $\pi^0$ pair and the real nature of the photon, the $K_{L}\to\pi^{0}\pi^{0}\gamma$ decay is restricted to proceed at lowest order by the CP conserving direct emission (DE) of an E2 electric quadrupole photon. The rate of this decay is interesting theoretically since chiral perturbation theory predicts that this process vanishes at level $O(p^4)$. Therefore, this mode probes chiral perturbation theory at $O(p^6)$. In this paper we report a determination of an upper limit of $2.43\times 10^{-7}$ (90% CL) for $K_{L}\to\pi^{0}\pi^{0}\gamma$. This is approximately a factor of 20 lower than previous results.Comment: six pages and six figures in the submission. Reformatted for Physics Review

Determination of the Parity of the Neutral Pion via the Four-Electron Decay

We present a new determination of the parity of the neutral pion via the double Dalitz decay pi^0 -> e+ e- e+ e-. Our sample, which consists of 30511 candidate decays, was collected from K_L -> pi0 pi0 pi0 decays in flight at the KTeV-E799 experiment at Fermi National Accelerator Laboratory. We confirm the negative pi^0 parity, and place a limit on scalar contributions to the pi^0 -> e+ e- e+ e- decay amplitude of less than 3.3% assuming CPT conservation. The pi^0 gamma* gamma* form factor is well described by a momentum-dependent model with a slope parameter fit to the final state phase space distribution. Additionally, we have measured the branching ratio of this mode to be B(pi^0 -> e+ e- e+ e-) = (3.26 +- 0.18) x 10^(-5).Comment: 5 pages, 4 figures. Typographical error in radiative branching ratio (Eq. 6) correcte

Detailed Study of the KL -> 3pi0 Dalitz Plot

Using a sample of 68 million KL -> 3pi0 decays collected in 1996-1999 by the KTeV (E832) experiment at Fermilab, we present a detailed study of the KL -> 3pi0 Dalitz plot density. We report the first observation of interference from KL->pi+pi-pi0 decays in which pi+pi- rescatters to 2pi0 in a final-state interaction. This rescattering effect is described by the Cabibbo-Isidori model, and it depends on the difference in pion scattering lengths between the isospin I=0 and I=2 states, a0-a2. Using the Cabibbo-Isidori model, we present the first measurement of the KL-> 3pi0 quadratic slope parameter that accounts for the rescattering effect.Comment: accepted by Phys. Rev

Improved KL->pi e nu Form Factor and Phase Space Integral with Reduced Model Uncertainty

Using the published KTeV sample of 2 million KL-> pi e nu decays and a new form factor expansion with a rigorous bound on higher order terms, we present a new determination of the KL->pi e nu form factor and phase space integral. Compared to the previous KTeV result, the uncertainty in the new form factor expansion is negligible and results in an overall uncertainty in the phase space integral (IKe) that is a factor of two smaller: IKe = 0.15392 +- 0.00048 \.Comment: 3 pages, 2 figures, submitted to PRD Rapid Communicatio

Measurements of the Decay KL→e+e−γK_L \to e^+e^-\gamma

The E799-II (KTeV) experiment at Fermilab has collected 83262 $K_L \to e^+e^-\gamma$ events above a background of 79 events. We measure a decay width, normalized to the $K_L \to \pi^0\pi^0\pi^0_D$ (\pi^0 \to \gamma\gamma, \pi^0 to \gamma\gamma, \pi^0_D \to e^+e^-\gamma) decay width, of $\Gamma($K_L \to e^+e^-\gamma$)/\Gamma(K_L \to \pi^0\pi^0\pi^0_D) = (1.3302 \pm 0.0046_{stat} \pm 0.0102_{syst}) \times 10^{-3}$. We also measure parameters of two $K_L \gamma^{\ast}\gamma$ form factor models. In the Bergstrom, Masso, and Singer (BMS) parametrization, we find \caks = -0.517 \pm 0.030_{stat} \pm 0.022_{syst}. We separately fit for the first parameter of the D'Ambrosio, Isidori, and Portoles (DIP) model and find \adip = -1.729 \pm 0.043_{stat} \pm 0.028_{syst}.Comment: 5 pages, 3 figures, submitted to PR