Karen Spalding

Effects of the Characteristics of Teaching on the Outcomes of Heart Failure Patient Education Interventions: A Systematic Review

Background: Limited research has examined the specific approach, mode of delivery, and dose of educational interventions. Yet such knowledge is essential to develop effective heart failure educational interventions. Aims and methods: The intent of this systematic review was to determine what approach, mode, and dose is most effective in producing changes in heart failure patient education. The sample included 69 studies involving 1865 study participants. Results: Findings indicate the most effective means for delivery heart failure patient education is through the individualization of content, the use of combined mediums for delivery, provision of education on a one-on-one basis, and in multiple sessions. Conclusion: These results highlight the need to redesign current heart failure patient education initiatives to enhance patient outcomes.

Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration

BackgroundPrimary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center.MethodsA before- and after-intervention study design with mixed (quantitative/qualitative) methods was utilized. Clinics at two community hospitals distant from tertiary care were staffed by local community pediatricians with the tertiary care center nurse practitioner and linked with primary care providers. Eighty-one children with underlying chronic conditions, fragility, requirement for high intensity care and/or technology assistance, and involvement of multiple providers participated. Main outcome measures included health care utilization and expenditures, parent reports of parent- and child-quality of life [QOL (SF-36®, CPCHILD©, PedsQL™)], and family-centered care (MPOC-20®). Comparisons were made in equal (up to 1 year) pre- and post-periods supplemented by qualitative perspectives of families and pediatricians.ResultsTotal health care system costs decreased from median (IQR)

Sleep disturbance in family caregivers of children who depend on medical technology: A systematic review

244 (981) per patient per month (PPPM) pre-enrolment to

Nursing Professional Organizations: What Are They Doing to Engage Nurses in Health Policy?

131 (355) PPPM post-enrolment (p=.007), driven primarily by fewer inpatient days in the tertiary care center (p=.006). Parents reported decreased out of pocket expenses (p<.0001). Parental QOL did not significantly change over the course of the study. Child QOL improved between baseline and 6 months in two PedsQL™ domains [Social (p=.01); Emotional (p=.003)], and between baseline and 1 year in two CPCHILD© domains [Health Standardization Section (p=.04); Comfort and Emotions (p=.03)], while total CPCHILD© score decreased between baseline and 1 year (p=.003). Parents and providers reported the ability to receive care close to home as a key benefit.ConclusionsComplex care can be provided in community-based settings with less direct tertiary care involvement through an integrated clinic. Improvements in health care utilization and family-centeredness of care can be achieved despite minimal changes in parental perceptions of child health.

Doing ‘technological time’ in a pediatric hemodialysis unit: An ethnography of children

PURPOSE Society relies on family caregivers of children who depend on medical technology (e.g. mechanical ventilation), to provide highly skilled and vigilant care in their homes 24 hours per day. Sleep disturbance is among the most common complaints of these caregivers. The purpose of this review is to systematically examine studies reporting on sleep outcomes in family caregivers of technology dependent children. METHODS All relevant databases were systematically searched: MEDLINE, EMBASE, PsycINFO and CINAHL. Given the heterogeneity of the studies, a qualitative analysis was completed and thus results of this review are presented as a narrative. RESULTS Thirteen studies were retrieved that met eligibility criteria for inclusion. All of the studies reported on family caregivers of children with medical complexity living at home. Moreover, all of the studies relied entirely on self-report, not objective sleep measures. No intervention studies were found. Sleep disturbance was found to be common (51-100%) along with caregiver reports of poor sleep quality. Sleep quantity was seldom measured, but was found in the few studies that did, to be approximately 6 hours, or less than recommendations for optimal health and daytime function. Multiple caregiver, child and environmental factors were also identified that may negatively influence caregiver sleep, health and daytime function. CONCLUSION Findings of this review suggest that family caregivers of children with medical complexity who depend on medical technology achieve poor sleep quality and quantity that may place them at risk of the negative consequences of sleep deprivation. Recommendations for practice include that health care providers routinely assess for sleep disturbance in this vulnerable population. The review also suggests that studies using objective sleep measurement are needed to more fully characterize sleep and inform the development of targeted interventions to promote sleep in family caregivers of technology dependent children.

Inaccessible childhoods: evaluating accessibility in homes, schools and neighbourhoods with disabled children

Nurses have great potential to contribute to the development of health policy through political action. We undertook a systematic website review of international- and national-level professional nursing organizations to determine how they engaged registered nurses in health policy activities, including policy priority setting, policy goals and objectives, policy products, and mechanisms for engaging nurses in policy issues. We reviewed 38 organizations for eligibility and 15 organization websites met our inclusion criteria. Six professional nursing organizations had comprehensive websites with a discussion of specific policy goals and objectives, policy-related products and mechanisms for nurses to become engaged. Future research is needed to evaluate how nursing professional organizations establish policy priorities and to evaluate the effectiveness of the strategies used to politically engage nurses.

Neither seen nor heard: Children and homecare policy in Canada

Since the 1960s, hemodialysis has been a common intervention for children with end-stage renal disease, however little is known about how they experience hospital-based hemodialysis. A focused ethnography was undertaken to explore children׳s perspectives of the time, space and technology of a hemodialysis unit at a Canadian pediatric urban hospital. The children׳s temporal and socio-spatial positions were an effect of their technologically mediated embodiment and shaped their perspectives, evaluations and expectations. The findings suggest that further explorations are needed to envision ways to create with children an overall positive place that merges and balances technological care with child focused care.

Intersecting Health Policy and the Social Determinants of Health in Pediatric Type 1 Diabetes Management and Care

ABSTRACT Accessible built environments are a critical component of Canada’s commitment to disabled children’s ‘right to enjoy full and decent lives’ [United Nations Convention on the Rights of the Child. 1989. Convention on the Rights of the Child. New York.] . Although valid, reliable research data about the accessibility of built environments are key to developing related policies, these data currently do not exist. To begin to redress this gap, we conducted a case study series followed by a survey to determine the accessibility of schools, homes and neighbourhoods directly from disabled children (The ScHaN Project). To present a concise summary of the findings that can inform equitable, evidence-based policies, we developed a scoring system for their homes, schools and neighbourhoods. Although our findings illustrate that eliciting and interpreting data from these children were complex undertakings, it is clear that none of these central environments met Canada’s obligation to enhance equity by enabling their access, inclusion and participation.