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BackgroundFamilies 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. ObjectiveThe 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. MethodsParents 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. ResultsWe 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. ConclusionsA 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 RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN): 84283190; http://www.controlled-trials.com/ISRCTN84283190 (Archived by WebCite at http://www.webcitation.org/6TuPdrXTF).

Wide-ranging large carnivores pose myriad challenges for conservation, especially in highly fragmented landscapes. Over a 13-year period, we combined monitoring of radio collared pumas with complementary multi-generational genetic analyses to inform puma conservation in southern California. Our goals were to generate survivorship estimates, determine causes of mortality, identify barriers to movement, and determine the genetic and demographic challenges to puma persistence among >20,000,000 people and extensive urban, suburban, and exurban development. Despite protection from hunting, annual survival for radio collared pumas was surprisingly low (55.8%), and humans caused the majority of puma deaths. The most common sources of mortality were vehicle collisions (28% of deaths), and mortalities resulting from depredation permits issued after pumas killed domestic animals (17% of deaths). Other human-caused mortalities included illegal shootings, public safety removals, and human-caused wildfire. An interstate highway (I-15) bisecting this study area, and associated development, have created a nearly impermeable barrier to puma movements, resulting in severe genetic restriction and demographic isolation of the small puma population (~17-27 adults) in the Santa Ana Mountains west of I-15. Highways that bisect habitat or divide remaining “conserved” habitat, and associated ongoing development, threaten to further subdivide this already fragmented puma population and increase threats to survival. This study highlights the importance of combining demographic and genetic analyses, and illustrates that in the absence of effective measures to reduce mortality and enhance safe movement across highways, translocation of pumas, such as was done with the endangered Florida panther, may ultimately be necessary to prevent further genetic decline and ensure persistence of the Santa Ana Mountains population.

Wide-ranging large carnivores pose myriad challenges for conservation, especially in highly fragmented landscapes. Over a 13-year period, we combined monitoring of radio collared pumas (Puma concolor) with complementary multi-generational genetic analyses to inform puma conservation in southern California, USA. Our goals were to generate survivorship estimates, determine causes of mortality, identify barriers to movement, and determine the genetic and demographic challenges to puma persistence among >20,000,000 people and extensive urban, suburban, and exurban development. Despite protection from hunting, annual survival for radio collared pumas was surprisingly low (55.8%), and humans caused the majority of puma deaths. The most common sources of mortality were vehicle collisions (28% of deaths), and mortalities resulting from depredation permits issued after pumas killed domestic animals (17% of deaths). Other human-caused mortalities included illegal shootings, public safety removals, and human-caused wildfire. An interstate highway (I-15) bisecting this study area, and associated development, have created a nearly impermeable barrier to puma movements, resulting in severe genetic restriction and demographic isolation of the small puma population (n ~ 17-27 adults) in the Santa Ana Mountains west of I-15. Highways that bisect habitat or divide remaining "conserved" habitat, and associated ongoing development, threaten to further subdivide this already fragmented puma population and increase threats to survival. This study highlights the importance of combining demographic and genetic analyses, and illustrates that in the absence of effective measures to reduce mortality and enhance safe movement across highways, translocation of pumas, such as was done with the endangered Florida panther (P. c. coryi), may ultimately be necessary to prevent further genetic decline and ensure persistence of the Santa Ana Mountains population.

Abstract Background Care of children and young people (children) with long-term kidney conditions is usually managed by multidisciplinary teams. Published guidance recommends that whenever possible children with long-term conditions remain at home, meaning parents may be responsible for performing the majority of clinical care-giving. Multidisciplinary team members, therefore, spend considerable time promoting parents' learning about care-delivery and monitoring care-giving. However, this parent-educative aspect of clinicians' role is rarely articulated in the literature so little evidence exists to inform professionals' parent-teaching interventions. Methods/Design This ongoing study addresses this issue using a combination of quantitative and qualitative methods involving the twelve children's kidney units in England, Scotland and Wales. Phase I involves a survey of multidisciplinary team members' parent-teaching interventions using: i) A telephone-administered questionnaire to determine: the numbers of professionals from different disciplines in each team, the information/skills individual professionals relay to parents and the teaching strategies/interventions they use. Data will be managed using SPSS to produce descriptive statistics ii) Digitally-recorded, qualitative group or individual interviews with multidisciplinary team members to explore their accounts of the parent-teaching component of their role. Interviews will be transcribed anonymously and analysed using Framework Technique. Sampling criteria will be derived from analysis to identify one/two unit(s) for subsequent in-depth study Phase II involves six prospective, ethnographic case-studies of professional-parent interactions during parent-teaching encounters. Parents of six children with a long-term kidney condition will be purposively sampled according to their child's age, diagnosis, ethnicity and the clinical care-giving required; snowball sampling will identify the professionals involved in each case-study. Participants will provide signed consent; data gathering will involve a combination of: minimally-obtrusive observations in the clinical setting and families' homes; de-briefing interviews with participants to obtain views on selected interactions; focussed 'verbatim' field-notes, and case-note reviews. Data gathering will focus on communication between parents and professionals as parents learn care-giving skills and knowledge. Interviews will be digitally recorded and transcribed anonymously. Discussion This study involves an iterative-inductive approach and will provide a unique, detailed insight into the social context in which professionals teach and parents learn; it will inform professionals' parent-educative roles, educational curricula, and health care policy

Background: Few evidence-based, on-line resources exist to support home-based care of childhood long-term conditions.Methods: In a feasibility study, children with stages 3, 4, or 5 chronic kidney disease, parents and professionals collaboratively developed a novel Online Parent Information and Support (OPIS) application. Parents were randomized to an intervention arm with access to OPIS or a control arm without access. OPIS usage was assessed using Google Analytics. Parents in the intervention arm completed the Suitability Assessment of Materials (SAM) and User Interface Satisfaction (USE) questionnaires and participated in qualitative interviews.Results: Twenty parents accessed OPIS with a mean of 23.3 (SD 20.8, range 2-64) visits per user. Responses from the SAM and USE questionnaires were positive, most respondents rating OPIS highly and finding it easy to use. Qualitative suggestions include refinement of OPIS components, enabling personalization of OPIS functionalities and proactive endorsements of OPIS by professionals.Conclusions: Implementation of OPIS into standard practice is feasible in the centre where it was developed. Suggested developments will augment reported strengths to inform ongoing testing in the wider UK network of units. Our design and methods are transferrable to developing and evaluating web-applications to support home-based clinical care-giving for other long-term conditions. [ABSTRACT FROM AUTHOR]

There were no significant differences between 54 supervised and 52 nonsupervised (latchkey) fifth and sixth graders on measures of academic achievement and social development.

Established renal failure is a manageable but incurable problem. Safely transitioning young people from paediatric to adult services remains a major challenge. [ABSTRACT FROM AUTHOR]