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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).

Background: The natural response to the intrusive bodily sensation is positional change. This study explored how children and young people (CYP) with intellectual disabilities had their comfort needs met when using adaptive positioning equipment. Methods: Thirteen qualitative case studies were undertaken. A parent, a teacher/key worker and a therapist for each CYP were interviewed, and daily routines were observed, with selective video recording. Single case and cross case analyses were undertaken. Results: Attentive caregivers read the behavioural expressions of the CYP and responded reassuringly, safeguarding them from discomforting experiences. Threats to comfort include the restrictive nature of some equipment accessories, positioning errors and procedural stretching. Conclusions: The same item of equipment can be both comfortable and uncomfortable. Given the social and interactional world in which the CYP live and learn, it is others who must accept responsibility for ensuring their optimal level of comfort.

Discusses the creation of a program of accredited work-based learning (learning at and through work that earns college credit) for emergency nurse practitioners. Highlights the challenges of collaboration with purchasers of education and nonnurse colleagues in creating an appropriate learning environment outside university control. (Contains 28 references.) (SK)

Northgate and Prudhoe NHS Trust is a specialist trust catering for people with disability, including learning disability. As one of the UK's largest providers of care for people with a [...]

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