A live-online mindfulness-based intervention for children living with epilepsy and their families: protocol for a randomized controlled trial of Making Mindfulness Matter©.

BACKGROUND: Epilepsy extends far beyond seizures; up to 80% of children with epilepsy (CWE) may have comorbid cognitive or mental health problems, and up to 50% of parents of CWE are at risk for major depression. Past research has also shown that family environment has a greater influence on children's and parents' health-related quality of life (HRQOL) and mental health than epilepsy-related factors. There is a pressing need for low-cost, innovative interventions to improve HRQOL and mental health for CWE and their parents. The aim of this randomized controlled trial (RCT) is to evaluate whether an interactive online mindfulness-based intervention program, Making Mindfulness Matter (M3), can be feasibly implemented and whether it positively affects CWE's and parents' HRQOL and mental health (specifically, stress, behavioral, depressive, and anxiety symptoms). METHODS: This parallel RCT was planned to recruit 100 child-parent dyads to be randomized 1:1 to the 8-week intervention or waitlist control and followed over 20 weeks. The intervention, M3, will be delivered online and separately to parents and children (ages 4-10 years) in groups of 4-8 by non-clinician staff of a local community epilepsy agency. The intervention incorporates mindful awareness, social-emotional learning skills, and positive psychology. It is modeled after the validated school-based MindUP program and adapted for provision online and to include a parent component. DISCUSSION: This RCT will determine whether this online mindfulness-based intervention is feasible and effective for CWE and their parents. The proposed intervention may be an ideal vector to significantly improve HRQOL and mental health for CWE and their parents given its low cost and implementation by community epilepsy agencies. TRIAL REGISTRATION: ClinicalTrials.gov NCT04020484 . Registered on July 16, 2019.

A description of Canadian epilepsy monitoring units: An initial step toward developing nursing practice consensus guidelines.

OBJECTIVE: The epilepsy monitoring unit (EMU) is a well-established resource for investigating patients' seizures but is known to be heterogeneous in organization and clinical practice. The purpose of this study was to gain a better understanding of similarities and differences in EMU characteristics across Canada, with specific emphasis on EMU organization and nursing resources, which were currently unknown. Results would be used to develop a consensus on best nursing practice guidelines in EMUs with the goal to improve patient care and safety during epilepsy monitoring admissions. METHODS: An 18-item survey was developed addressing EMU locations, types, nursing ratios, nursing roles, and other allied health resources. Surveys were distributed to lead nurses, physicians, and administrators in 29 EMUs across Canada. Results were tabulated and presented for each question in the survey. CONCLUSION: All EMUs were located in urban, teaching centers and divided similarly by patient age. The survey demonstrated considerable variability in EMU bed location and organization with the majority of EMUs being smaller, open units embedded in wards rather than larger, closed units. Independent of patient acuity, variability also existed in nurse-to-patient ratios, nursing skill level, specialty nursing support, and EEG technician availability. These findings highlight that EMU heterogeneity contributes to the challenges in the development of standardized safe care practices and that nursing education and nursing best practice recommendations need to be developed with baseline EMU nursing competencies, skills, and knowledge in mind.

Intrathecal baclofen and pregnancy: implications for clinical care.

Pregnancy in patients with intrathecal baclofen (ITB) pumps is rare. To our knowledge, only five reported cases of pregnancy exist in the literature. Thus, there is little experience to inform health care practitioners about the maternal and fetal safety of ITB or its efficacy throughout pregnancy. There are no reports of a pregnant female with an implanted ITB pump having a spontaneous, vaginal delivery at term. As far as we know, this is the first case described in the literature. Additionally, current literature does not address clinical implications for these patients. This paper reviews literature to date and presents unique aspects of our patient. It also discusses clinical implications for treating a pregnant patient with an ITB pump. The intent of this paper is to advance our body of knowledge in caring for pregnant clients with ITB pumps and reassure families about the safety and efficacy of this treatment.