Family Interviews Inform School-based Nursing for Children with Type 1 Diabetes and their Families.

The purpose of this study was to better understand the burden(s) associated with type 1 diabetes mellitus (T1DM) on school-aged youth and families and subsequently identify strategies school nurses can adopt to reduce the impact of this disease. Family interviews (n = 5 families, comprised of 15 individual participants) were conducted using a semi-structured interview guide to further explore family members' experiences with T1DM. Directed content analysis was employed for theme identification. Themes reflect individual and family struggles, the importance of teamwork within families, navigating barriers, and facing uncertainty. Select themes provided the impetus for the development of a school-based program directed toward youth and families with T1DM. Plans include developing educational content plus therapeutic conversations with a focus on communication, care coordination, cognition, problem-solving, and strength-building. An emphasis will be placed on participant-directed program content with peer support for youth with T1DM and family members.

A school-based health centre partnership: Faculty practice, nursing student learning and wellness in youth, families and community.

AIMS AND OBJECTIVES: This paper describes the development of a SBHC with an innovative model of care that grew out of a partnership between a public-school district and a university nursing programme in the midwestern region of the United States. BACKGROUND AND PURPOSE: Persistent barriers to health and health care experienced by youth are well documented. School-based health centres (SBHCs) can improve educational and health outcomes, positively impacting health equity. Academic systems are positioned to address health care needs of the school-aged population, yet educators face challenges of accessing quality learning placements for students and faculty practice sites. METHODS: A community-based collaborative methodology guided the planning phases that were driven by priority needs identified by families and stakeholders. With the mission of "partnering with students, families, and communities in the promotion of health and wellness through engagement in practice, education, and research," an ongoing dialogue over a two-year period led to articulating a vision, designing a plan and implementing a nurse-managed SBHC. The Standards for Reporting Qualitative Research (SRQR) checklist was considered in the preparation of this paper. RESULTS: In three years, this SBHC has addressed and identified priority needs and served individual youth and families. The SBHC provides opportunities for the faculty to fulfil a practice requirement for certification and accreditation. Nursing students engage with youth and families in health education and health promotion while strengthening their technical and relational skills. Family nurse practitioner students gain valuable clinical experience. Faculty with expertise in family nursing guide family assessments, support family resiliency and direct therapeutic conversations with family units. CONCLUSION: SBHCs serve youth, families, and community. This academic-practice partnership has the added benefit of providing faculty practice opportunities and nursing student experiential learning. RELEVANCE TO CLINICAL PRACTICE: SHBCs provide practice opportunities that address needs in individuals, families, and communities. Partnerships should be considered at academic nursing programmes to support their needs and fulfil commitments to address health equity gaps.

Intensive care nurse-family engagement from a global perspective: A qualitative multi-site exploration.

BACKGROUND: Critical illness is distressing for families, and often results in negative effects on family health that influence a family's ability to support their critically ill family member. Although recent attention has been directed at improving care and outcomes for families of critically ill patients, the manner in which nurses engage with families is not fully understood. OBJECTIVES: To describe nurses' perceptions and practices of family engagement in adult intensive care units from a global perspective. DESIGN: A qualitative-descriptive multi-site design using content analysis. SETTINGS: The study was conducted in 26 intensive care units of 12 urban, metropolitan, academic medical centers in ten countries, spanning five continents. PARTICIPANTS: A total of 65 registered nurses (77% women, age of M = 39.5, SD = 11.4 years) participated. Most held intensive care certification (72%) and had worked on average 10 (SD = 9.6) years in the ICU. METHODS: Semi-structured, individual interviews (M = 38.4 min, SD = 12.0) were held with ICU nurses at the hospital (94%) or their home using an interview guide. Qualitative interview data were analysed using inductive content analysis. RESULTS: We found that nurse-family engagement was an ebb and flow of relational power that needed to be carefully negotiated and balanced, with nurses holding and often exerting more power than families. Constant fluctuations in nurses' practices of engagement occurred in day-to-day practice from shift-to-shift and from nurse-to-nurse. Family engagement was dependent on individual nurses' attitudes and perceptions of family, the patient's condition, and workload. Lastly, family engagement was shaped by the ICU context, with team culture, collaborative relationships, unit structures and organizational resources either enabling or limiting nurses' ability to engage with families. CONCLUSIONS: This global study provides an in-depth understanding of the way nurses engage with families in ICU and reflects many different cultures and health systems. We found that nurse-family engagement was marked by a shifting, yet often unequal power distribution in the nurse-family relationship, inconsistent nurse engagement practices, both of which resulted in variable family engagement in intensive care. Our research contributes a detailed description of engagement as practiced in the everyday delivery of health care. A more concentrated team effort, based on a shared culture and defined framework of family care is needed to ensure that families of critically ill persons are fully engaged in all aspects of intensive care.

Service learning within community-engaged research: Facilitating nursing student learning outcomes.

The objective of this manuscript is to describe a method of integrating baccalaureate nursing student service-learning experiences within a randomized controlled trial conducted in a community setting to facilitate student learning and expose students to the nursing scientist role. Placing students in a research service-learning experience involved several steps beginning with finding a nursing program for potential collaboration where this service-learning opportunity would be a natural fit with course content and formalizing the collaboration between the two institutions. Upon receipt of research grant funding, researchers and course faculty worked to navigate logistics and place students within the service-learning experience. After research training, 35 students assisted with intervention delivery and completed course assignments to document their learning. The collaboration described between a community-engaged research team from a research-intensive university and course faculty from a distant institution could be replicated with all types of nursing research.

Care coordination guidelines for the care of people with spina bifida.

Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a person's care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities. It is often managed by the exchange of information among participants responsible for different aspects of care [1]. With an estimated 85% of individuals with Spina Bifida (SB) surviving to adulthood, SB specific care coordination guidelines are warranted. Care coordination (also described as case management services) is a process that links them to services and resources in a coordinated effort to maximize their potential by providing optimal health care. However, care can be complicated due to the medical complexities of the condition and the need for multidisciplinary care, as well as economic and sociocultural barriers. It is often a shared responsibility by the multidisciplinary Spina Bifida team [2]. For this reason, the Spina Bifida Care Coordinator has the primary responsibility for overseeing the overall treatment plan for the individual with Spina Bifida[3]. Care coordination includes communication with the primary care provider in a patient's medical home. This article discusses the Spina Bifida Care Coordination Guideline from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida and explores care coordination goals for different age groups as well as further research topics in SB care coordination.

Bowel function and care: Guidelines for the care of people with spina bifida.

PURPOSE: Bowel dysfunction, such as constipation and fecal incontinence, has a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Secondary complications may result from bowel dysfunction and include urologic dysfunction, loss of skin integrity, shunt (hydrocephalus) function, as well as loss of social opportunities and employability. METHODS: Using a consensus building methodology, the guidelines for management of bowel dysfunction in spina bifida were written by experts in the field of spina bifida and bowel function and care. RESULTS: The evidence-based guidelines are presented in table format and provide age-specific recommendations to achieve fecal continence without constipation. Recommended treatments are presented from least to most invasive options. Literature supporting the recommendations and the interval research published to date is also presented. CONCLUSION: These guidelines present a standardized approach to management of bowel dysfunction in spina bifida. Bowel management in children and young adults with spina bifida is limited by variability in clinical practice and paucity of robust research in neurogenic bowel. Collaborative multi-institutional efforts are needed to overcome research barriers and provide innovative solutions.

Integument: Guidelines for the care of people with spina bifida.

PURPOSE: Skin-related issues have a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Data presented by select clinics that participate in the National Spina Bifida Patient Registry reported that 26% of individuals had a history of pressure injuries with 19% having had one in the past year. The spina bifida community lack direct guidelines on prevention of these and other skin related issues. The Integument (skin) Guidelines focus on prevention, not treatment, of existing problems. METHODS: Using a consensus building methodology, the guidelines were written by experts in spina bifida and wound care. RESULTS: The guidelines include age-grouped, evidence-based guidelines written in the context of an understanding of the whole person. They are presented in table format according to the age of the person with spina bifida. CONCLUSION: These guidelines present a standardized approach to prevention of skin-related issues in spina bifida. Discovering what results in successful minimization of skin-related issues with testing of technology or prevention strategies is the next step in protecting this vulnerable population.

Preface to the special issue for the guidelines for the care of people with spina bifida.

"Guidelines for the Care of People with Spina Bifida" provide the best, most up-to-date recommendations for care across the lifespan, from newborn to adult. This special issue of the Journal of Pediatric Rehabilitation Medicine is a collection of key sections of the 2018 Guidelines. The sections of the Guidelines published herein have been expanded from their original format to include more background information about key topics and why they are important in the care of people with SB. It is the hope of SBA that these and future Guidelines will promote and standardize best practice regardless of the characteristics of individuals with SB or where their care was received. It is through providing better care that we will ultimately achieve a better future for all those living with SB.

An Educational Intervention Incorporating Digital Storytelling to Implement Family Nursing Practice in Acute Care Settings.

This project describes implementation of an educational intervention designed to initiate practice changes that support families and nurses during acute illness. An academic-practice partnership and digital storytelling methodology provided a foundation. A quasi-experimental research design included quantitative and qualitative measurement before and after the educational intervention. Themes identified in digital stories of nurse experiences caring for families provided direction for the educational intervention including the digital stories, empirical evidence, and proposed changes in nursing practice focused on families. Nurse participants (n = 160) in the educational intervention reported positive responses on a qualitative questionnaire. Comparing pretest and posttest results of the Family Nurse Practice Scale reflected positive, though not significant change. Family members (n = 49) reported significantly improved perceptions of support on 7 of the 14 items on the Iceland Perceived Family Support Questionnaire. This project highlighted digital storytelling's power to promote family interventions and move family nursing knowledge into practice.

Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association.

BACKGROUND: We combined literature review and consensus-building methodologies to develop health care guidelines for people with Spina Bifida across the life span. OBJECTIVE: The present paper describes the methodology used to update and expand this fourth edition of the Guidelines for the Care of People with Spina Bifida ("Guidelines"). This process was a fundamental initiative within the Spina Bifida Collaborative Care Network. METHODS: Working groups were formed consisting of international, multidisciplinary teams of clinical and research experts. A systematic review of multiple databases was conducted. The consensus building methodology, One-Text Procedure, was followed to draft and revise documents. Each section of the Guidelines was presented by working group chairs at a face-to-face meeting using the Nominal Group Technique (NGT). RESULTS: The Level 1 review resulted in 2449 abstracts being reviewed, and the Level 2 review resulted in 874 full text articles being archived for working groups. After working groups added and eliminated articles, a total of 803 manuscripts were included in the bibliography of the Guidelines. The final version of the Guidelines was then released in 2018. CONCLUSIONS: Evidenced based-research and consensus methodologies were used to develop the fourth edition of the Guidelines. It is hoped that this document will guide not only health care providers, but also patients and families, so that people with Spina Bifida can have the best and most scientifically-based care and treatments throughout ever-longer and higher-quality lives.

Reducing Digital Storytelling Implementation Barriers in Nursing Education Workshops.

Digital stories have the potential to transform health care systems by cultivating understanding and compassion; however, limited research explores the use of this innovative strategy in continuing education. This article describes how a collaborative partnership of an Academic Team and Translational Partners (n = 15) implemented a four-phase study that included a continuing education workshop with digital stories as the central strategy. The study's guiding questions focused on adapting approaches to creating digital stories to reduce logistic concerns and overcome implementation challenges yet empower nurses in their practice with families. Numerical and narrative responses from workshop participant evaluations (n = 160) affirmed storytelling as the most valuable component, and reflection increased understandings to influence their thinking and actions. This study affirms using digital stories as an implementation strategy in health care systems has the potential to transform nursing education, supports the transfer of family nursing practice knowledge, encourages reflection, and develops empathy for families and nurse peers. [J Contin Educ Nurs. 2019;50(9):411-416.].

Using a Decision Tree to Guide Bowel Management in Spina Bifida.

BACKGROUND: When born with spina bifida, there are numerous neurologic disorders that accompany this birth defect, including neurogenic bowel. Proactive, systematic, and rational approaches can lead to continence and a more functional lifestyle [1]. METHODS: Based on the evidence in the literature and expert experience, our approach to bowel management was developed as a step by step, individualized approach. This was converted to a decision tree for easy guidance of treatment decisions. The approach includes teaching patients and families normal bowel function, changes resulting from neurogenic bowel, common pitfalls in bowel management, and techniques that may improve outcomes. The decision tree, starting with dietary management, breaks into a two-fold attack, oral and rectal. Our data as part of the National Spina Bifida Patient Registry (NSBPR) database was compared to public data from the NSBPR. RESULTS: Preliminary data from the NSBPR in 2011 reported bowel continence in 42.1% (n = 898) compared to our clinical outcomes of 72.1% (n = 43). As the variable of bowel continence was further defined and more patients were enrolled, the clinic results were comparable to the national reports. CONCLUSION: Consistency among providers and caregivers is critical to evaluating the management of continence in spina bifida. While this protocol warrants further evaluation, it is offered as an evidence-based, step by step, approach to bowel management in spina bifida with good outcomes for patient management.

Differences in Length of Stay and Costs Between Comparable Hospitalizations of Patients With Spina Bifida With or Without Pressure Injuries.

OBJECTIVE: To estimate differences in the length of stay and costs for comparable hospitalizations of patients with spina bifida (SB) with and without pressure injuries. DESIGN: Retrospective, cross-sectional, observational study. SETTING: Nationwide Inpatient Sample from years 2010-2014. PARTICIPANTS: Hospitalizations of patients with SB (N=7776). Hospitalizations among patients with SB and pressure injuries (n=3888) were matched to hospitalizations among patients with SB but without pressure injuries (n=3888). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Differences in length of stay and total costs between the 2 groups. RESULTS: After successful matching, multivariate modeling of costs and length of stay on matched sample showed that hospitalizations with pressure injuries had an increased 1.2 inpatient days and excess average costs of $1182 in 2014 dollars. CONCLUSIONS: The estimated average cost of hospitalization increased by 10%, and the estimated average length of stay increased by 24% in the presence of pressure injuries among hospitalized patients with SB, compared with their peers without these injuries. These results highlight the substantial morbidity associated with pressure injuries, which are potentially preventable before or during hospitalizations among persons with SB.

Latex Safe at School: A Student-Centered Approach.

Providing a safe environment for students at risk for anaphylaxis from a latex allergy requires care coordination and collaboration of all members of the school community. Strategies for allergy management include educating the school community, identifying potential exposure to latex, preparing to respond in an emergency, and creating a plan for the future. With the student at the center of sound planning, the school can provide a secure and healthy environment.

Factors associated with pressure ulcers in individuals with spina bifida.

OBJECTIVE: To describe factors associated with pressure ulcers in individuals with spina bifida (SB) enrolled in the National Spina Bifida Patient Registry (NSBPR). DESIGN: Unbalanced longitudinal multicenter cohort study. SETTING: Nineteen SB clinics. PARTICIPANTS: Individuals with SB (N=3153) enrolled in 19 clinic sites that participate in the NSBPR. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Pressure ulcer status (yes/no) at the annual visit between 2009 and 2012. RESULTS: Of 3153 total participants, 19% (n=603) reported ulcers at their most recent annual clinic visit. Seven factors-level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex-were significantly associated with the presence of pressure ulcers. Of these factors, level of lesion, urinary incontinence, recent surgery, and male sex were included in the final logistic regression model. The 3 adjusting variables-SB type, SB clinic, and age group-were significant in all analyses (all P<.001). CONCLUSIONS: By adjusting for SB type, SB clinic, and age group, we found that 7 factors-level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex-were associated with pressure ulcers. Identifying key factors associated with the onset of pressure ulcers can be incorporated into clinical practice in ways that prevent and enhance treatment of pressure ulcers in the population with SB.