“Oui” CANN
Communicating and Networking Nationally
CANN 41st Annual Meeting and Scientific Sessions
June 8–11, 2010
Quebec City, QC
Abstracts for oral presentations
Wednesday, June 9
A1 (EN)
Providing Best Practice Stroke Care to Patients across the In-patient Continuum: An Integrated Stroke Unit
L. MacIsaac, B. Fakehinde, S. Jordan, F. Khalediyan, H. Moon, P. Turner
The provision of stroke care on a dedicated unit has been shown to decrease disability and mortality by as much as 30% for all individuals with stroke regardless of age, gender or severity of stroke (Canadian Stroke Strategy, 2008). At our district stroke centre, the delivery of stroke care underwent reorganization in 2006. A 15-bed integrated stroke unit accepting patients in the acute, rehabilitation and complex phases of the stroke continuum was opened. In the fall of 2007, the unit was expanded with the addition of seven beds. The focus of this reorganization was to provide an integrated approach to the treatment of patients with the diagnosis of stroke and to provide best practice care to patients with stroke throughout the continuum of care.
Patients with new diagnosis of stroke are admitted from the emergency department to an acute care bed. Continuity of care is maximized as patients move across the stroke continuum changing designation, but not location. Assessment, treatment and rehabilitation begin early in the acute phase. Patients with lower Functional Independent Measurement (FIM) scores who may not have been accepted for stroke rehabilitation are placed into the complex rehabilitation beds where they have a longer stay.
This presentation will describe how this integrated approach to patient care exemplifies best practices in stroke care. The benefits and challenges of this type of unit will be discussed.
B1 (EN)
Developing a CNS Role in Pediatric Neurosurgery and Neuro-oncology: Challenges and Triumphs!
T. Primiani
This presentation will summarize the challenges and accomplishments to date in the process of creating and shaping a new and innovative clinical nurse specialist (CNS) role in pediatric neurosurgery and neuro-oncology in a large university teaching hospital. The position was created in 2008 to meet the needs of the approximately 25 to 30 children diagnosed annually with brain tumours within this hospital (MCH Tumor Registry, 2009). Recent evidence-based research related to advance practice nursing will be examined and reviewed. The CNS role will be described in the context of advanced practice models and guidelines, and further elaborated by examples of the challenges, obstacles and rewards of implementing this CNS role and its impact on an interdisciplinary pediatric neuroscience team. The practice of a CNS in neurosurgery and neuro-oncology will be examined in light of its core competencies: leadership, consultation, collaboration and research. Comparisons will be made with the development of advanced practice nursing and Benner’s stages of clinical practice. Finally, a clinical case study will illustrate the evolution of this advanced practice role and its contribution to pediatric neurosurgery and neuro-oncology.
C1 (EN)
Self-Efficacy in Headache Management: A Quasi-Experiment
S. Basiuk, K. Then, J.A. Rankin, W. Becker, T.S. Fung
Aim: To assertain the effectiveness of a headache self-management program offered to clients during the wait-time between referral to a multidisciplinary headache program and consult appointment with a neurologist. The primary research objective was to compare headache management self-efficacy scores for clients at baseline, to post-test scores after participation in the headache self-management program.
Methods: Clients of Calgary Headache Assessment and Management Program, Education Session were recruited. Those who chose to attend the Self-Management Workshop constituted the experimental group. All subjects were given a self-administered, pre-test questionnaire at baseline, including the CESD-R, HDI, HIT-6 and HMSE. The post-test questionnaire was administered during the scheduled neurologist consult.
Results: Data were collected on 231 subjects, 23 in the intervention and 208 in the comparison group. Self-efficacy improved for the entire sample (p = 0.041), headache frequency decreased (p = 0.048), quality of life improved (p = 0.003) and disability improved for the comparison group, but not the intervention group (p = 0.041).
Conclusions: Small sample size in the intervention group did not allow for meaningful comparisons. Therefore, few differences between groups were found. Benefits seen may have been related to education session attendance rather than the intervention itself.
D1 (EN)
Effectiveness of the Prevent Alcohol and Risk-Related Trauma in Youth (PARTY) Program in Preventing Traumatic Injuries: A Ten-Year Analysis
J. Banfield
Objective: The Prevent Alcohol and Risk-Related Trauma in Youth (PARTY) program is a one-day injury awareness and prevention program for youth ages 15 and older, with the goal to educate adolescents to recognize their injury risks and make informed choices to reduce them.
Methods: PARTY participants (study) were matched with a group of subjects having the same age, gender, residential area, and initial year in database, who did not attend the PARTY program (control). Data from two different sources were searched to determine the incidence of traumatic injuries in both groups.
Results: Of 3,905 PARTY participants, 1,281 were successfully randomly matched on the above four variables with 1,281 controls. The most frequent injury was homicide or injury by other 381/2,562 (14.9%). There were fewer traumatic injuries in the study group than in the control group (43.3% versus 47.4%, p = 0.02, OR = 1.22, 95% CI = 1.03-1.45). This difference was stronger in females (44.4% versus 49.0%, p = 0.04), and before the graduated licensing system was implemented (60.1% versus 67.2%, p = 0.04).
Conclusions: The PARTY program effectively reduced the incidence of traumatic injuries among its participants. This effectiveness was stronger among females, and before the driver licensing system was implemented in the province.
A2 (EN)
Providing Stroke Education to Patients and Families on an Integrated Stroke Unit: Our Team’s Experience
L. MacIsaac, R., Dharamshi, J. Hain-Cohen, Trabbior, I. Sulemon
Background: A recent evaluation of the education program developed by our interprofessional team (IPT) for the Integrated Stroke Unit highlighted several challenges including: timing of the presentations, changes in the educational needs of patients over the continuum of care, and format of education. The IPT decided to implement recommendations from the Canadian Best Practice Guidelines for Stroke Care in order to enhance delivery of patient and family education. An enhanced educational program for patients on the Integrated Stroke Unit is under development with implementation planned for January 2010.
Method: Surveys will be conducted with patients at various stages of the continuum in order to determine their educational needs including content, timing and modality. Results of this survey and best practice standards will guide the redevelopment of the education program. Pre- and post-implementation surveys will be conducted to evaluate the enhanced program. Consecutive patients admitted between April 1 and June 30, 2009, will be contacted by phone to complete the pre-implementation survey. Evaluation of the educational program will be conducted through a post-implementation survey in April 2010.
Results: In addition to providing the results from this pre- and post-implementation study, we will detail the components of the educational initiative.
B2 (EN)
Atypical Teratoid/Rhabdoid Tumour (ATRT): Suri’s Journey
A. Manicat-Emo, R. Radchenko, C. Ross, T. Watkins
Atypical Teratoid/Rhabdoid Tumour (ATRT) is a rare, high-grade tumour occurring most commonly in children younger than two years of age. It’s highly aggressive nature and ability to occur anywhere in the brain necessitates an individual, often complex treatment regimen requiring surgical intervention, followed by chemotherapy and radiation therapy. This unique tumour can spread through the central nervous system and result in a multitude of neurological symptoms that require management. The touching story of an infant diagnosed with ATRT and the family’s difficult journey will be shared during this presentation with particular attention to the clinical management and specific nursing interventions that were used to help this family overcome the many challenges and complications they had to endure.
C2 (EN)
A Nurse Practitioner-Led Headache Clinic in the Acute Care Setting: An Effective Health Care Solution
M. DeVries-Rizzo
A nurse practitioner-led clinic within a tertiary health care centre can be an effective solution to increasing demands on an already burdened health care system. Nurse practitioner-led clinics in Ontario are already emerging as part of a team-based approach to front-line health care in primary care settings. However, opportunities exist for nurse practitioners to lead in the delivery of health care in acute care settings, especially currently in ambulatory care. Advanced practice nurses are well recognized as having advanced education, comprehensive knowledge and complex skills to provide efficient and effective evidence-based care to many patient populations with multiple health conditions. Using the expertise of advanced practice nurses provides an excellent opportunity to improve access to health care. The purpose of this presentation will be to highlight the development of an NP-led headache clinic in a pediatric tertiary health care teaching centre. Benefits and challenges associated with this new model of care will be discussed. Additionally, lessons learned from this patient population will be highlighted. The presentation is meant to stimulate other nurses to evaluate their own roles and scope of practice within their areas of expertise and consider innovative ways to deliver health care within their health care centres.
D2 (EN)
External Ventricular Drainage System Product Change Leads to an Evidence-Informed Protocol Change
D. Meldrum, L. Boisert
Nursing care of a patient requiring external ventricular drainage (EVD) is complex and challenging. Pediatric patients present some specific challenges, one being the management of CSF infection. Our protocol dictated that the CSF specimen be obtained from the port closest to the patient. When we were faced with a new, unfamiliar EVD drainage product without having been previously informed, we recognized a safety risk to the patient with regards to our present practice of CSF collection. This product came from a need for the adult population and pediatrics had not been consulted. This incident prompted an urgent review of our practice and led to many interprofessional discussions. Benchmarking across the country and a literature search were undertaken resulting in an evidence-informed change in our protocol. This not only addressed infection control issues, but also addressed other safety issues related to the withdrawal of CSF from an EVD. The purpose of this presentation is to discuss the concerns presented, the processes undertaken, the outcomes and the lessons learned.
A3 (EN)
Understanding the Allocation of Space on Acute Stroke Units
C. Seneviratne, C.M. Mather
Space to work, collaborate, and appropriately function in health care settings is a luxury individuals sometimes assume will never change. Once workspace becomes scarce or transforms, individuals often adapt to unsuitable or small workspaces, which can influence work relationships and may decrease collaboration opportunities. The spatial structure of our work areas creates different attitudes about those we work with and affects our work with patients. The purpose of this paper is to revisit a finding from a 2007 doctoral ethnographic study conducted on a stroke unit in Canada related to the ways spatial challenges physically constrained nursing work with stroke patients. Participants strongly believed that a lack of unit workspace forced nurses to work within cramped unit spaces, which affected the care provided to stroke patients. In this sub analysis, we examined how lack of workspace forced nurses to work in close proximity and examined the impact of spatial challenges in the greater health care context. The care of stroke patients requires the commitment of all stroke team members. If spatial challenges hinder nurses’ and other professionals’ work, then stroke professionals must find ways to advocate for appropriate workspaces. Recommendations for research and other initiatives will also be discussed.
B3 (EN)
Clinical Questions do translate into Research: The Agitated Behavior Scale in Pediatric Patients Following Traumatic Brain Injury
L. Pearlman, R. Titanic, J. Hutchison, C. Campbell
Agitation is commonly observed following traumatic brain injury (TBI) in pediatric patients. The assessment, pharmacological and non-pharmacological management and evaluation of agitated behavior in the pediatric population is confounded by a lack of (1) a standardized, valid and reliable tool to measure agitation, and (2) evidence-based literature to guide nursing practice. Without a standardized tool for assessment, or evidence-based guidelines for treatment agitation becomes a subjective behavior that is treated according to the individual experiences and opinions of the health care practitioner. The Agitated Behavior Scale (ABS) was developed in the late 1980s to assist with the assessment of agitation in adults with TBI, and has since been widely used in clinical practice settings of trauma, dementia and stroke in adults. The ABS has not undergone testing with pediatric patients. The intent of this presentation is to review the methodology of the multicoated Canadian study (2009) examining the reliability and validity of the Agitated Behavior Scale in pediatric patients following traumatic brain injury. The presentation will highlight the research process that began when a group of bedside nurses questioned the best way to assess and manage agitation. In conclusion, preliminary results of the study will be shared.
C3 (EN)
“Do We Do That Here?” Using Progressive Care Standards to Develop Scope of Practice for a Neurosciences Observation Area
S. Broughton, C. McKim
Patients who are admitted with a primary neurological diagnosis may also have underlying cardiac disease, and may be cared for in an area with continuous cardiac monitoring. Although care may focus on treating the primary neurological problem, nurses may also be asked to manage the underlying cardiac issues. Health care providers can make false assumptions about care provided to patients in a cardiac monitored area. Physicians may prescribe medications and other treatments based on the fact that the patient is on a cardiac monitor. However, the prescribed interventions may not be within the standard practice and skill set of the neuroscience nurse expert. This issue was addressed it the Neurosciences Observation Area (NOA) at The Ottawa Hospital through a formal review and analysis of the Guidelines for Admission and Discharge in Adult Intermediate Care Units from the Society of Critical Care Medicine. Based on these guidelines, the medical and nursing staff developed NOA admission criteria, including a list of medications that can be safely administered and monitored by nurses in patients requiring cardiac and homodynamic monitoring. This session will outline the collaborative process used to develop the NOA admission criteria. The NOA admission criteria will be presented. Case studies will be presented to demonstrate how the NOA admission criteria has been used to expand to scope of practice of the neuroscience nurse and allowed for appropriate bed placement.
D3 (FR)
External Ventricular Drainage System Product Change Leads to an Evidence-Informed Protocol Change
D. Meldrum, L. Boisert
Nursing care of a patient requiring external ventricular drainage (EVD) is complex and challenging. Pediatric patients present some specific challenges, one being the management of CSF infection. Our protocol dictated that the CSF specimen be obtained from the port closest to the patient. When we were faced with a new, unfamiliar EVD drainage product without having been previously informed, we recognized a safety risk to the patient with regards to our present practice of CSF collection. This product came from a need for the adult population and pediatrics had not been consulted. This incident prompted an urgent review of our practice and led to many interprofessional discussions. Benchmarking across the country and a literature search were undertaken resulting in an evidence-informed change in our protocol. This not only addressed infection control issues, but also addressed other safety issues related to the withdrawal of CSF from an EVD. The purpose of this presentation is to discuss the concerns presented, the processes undertaken, the outcomes and the lessons learned.
A4 (EN)
Associations between Biophysical and Psychosocial Outcomes Following Minor Stroke
T. Green, K. King
Background: Minor stroke is typically regarded as a non-disabling event resulting in minimal neurological impairment, as measured on stroke severity and functional outcome scales. There is an expectation that these patients will return to their pre-stroke status relatively quickly and they are most often discharged directly home into the care of the family within three to four days of admission. However, psychosocial squeal such as cognitive and behavioural/emotional dysfunction may affect patient and carer recovery.
Purpose: We conducted a prospective cohort study of 38 male patients with minor stroke and their wife-caregivers to assess biophysical and psychosocial outcomes over the first three months post-stroke. The purpose of this presentation is to report the associations between biophysical and psychosocial factors in this population.
Results: While biophysical measures revealed consistent improvement, psychosocial measures did not. At three months post-stroke, nearly half the study patients (n = 18/38) indicated difficulty with performance of normal daily life routines and integrating residual physical deficits into life activities. The ability or inability to attend to family roles, self-care needs, and work provided patients and spouses with a measure of stroke recovery outside of functional recovery.
B4 (EN)
Kids in Transition: The Rehab Experience
T. Flaming, A. Hodinott, A. Manicat-Emo, S. Stinson-Lypka
“Kids in Transition: The Rehab Experience” was a partnership between SickKids and Bloorview Kids Rehab in Toronto, whose goal was to enhance the health care experience for SickKids’ patients from the neurosciences/trauma program requiring off-site rehabilitation services at Bloorview in the brain injury rehab program. The project’s aim was to reduce the number of medically unnecessary days for patients awaiting transfer to Bloorview from unit 5C at SickKids by 50%. An improvement team, with representation from both facilities, worked to assess the previous transition processes in order to identify delays and bottlenecks, enhance practices and streamline the transition between facilities. The improvement plan included: identification of medical and rehab readiness for transition; development of a timely, efficient and appropriate referral process; provision of an accurate clinical picture of the child pre-transfer; and a measurable increase in family and staff satisfaction. Nurses were empowered to become more involved in the transfer process, which resulted in enhanced continuity of nursing care. Expectations were exceeded, with the most significant change found in the number of medically unnecessary days, which has decreased, resulting in a 58% reduction. This presentation will discuss the experience and lessons learned by the improvement team, which was instrumental in ensuring safe and relevant nursing care.
C4 (EN)
Frontotemporal Dementia (FTD): A Disease that Steals the Self
M. Halper, M. Goodman
The purpose of this presentation is to bring about a greater awareness of this degenerative neurologic disease; to educate about Frontotemporal Lobar Degeneration (FTLD) and ways we, as nurses, can improve care to the patient, as well as provide support to the caregiver. It is the leading cause of dementia in middle age. Age of onset varies from 20s to 80s, most common in 40s, 50s and 60s. This session will describe FTLD, which represents a spectrum of disorders comprised of behavioural-variant FTD, Progressive Non-Fluent Aphasia (PNFA), and Semantic Dementia (SD). We will review the neuropathology, clinical features and current treatment of these disorders. Frequently, patients with FTD are misdiagnosed as having OCD, Bipolar Disorder, Schizophrenia or Alzheimer’s Disease because of behavioural and personality changes that may arise early in the disease process. We will look at the impact of these changes on family, friends and community. We will discuss the role of the nurse clinician in the management of varied and challenging behavioural symptoms of FTD. We will also present some of the current research findings that contribute to a greater understanding of the spectrum of these disorders.
D4 (FR)
Exploration of the Feelings of Competence and Professional Self-Government of Nurses in the Establishment of a Tool of Integrated Management of Patients Affected by Myotonic Dystrophy Type 1 (OGIS-DM1)
M. Lavoie, M.C. Chouinard, J. Mathieu, C. Gagnon
Presence of various characteristics of the persons affected by myotonic dystrophy type 1 (DM1), and in the way that services are organized, can result in sub-optimum care being provided by the nurses working in a specialized neuromuscular private hospital. To examine this, it was proposed to establish a plan of integrated care named "Tool of integrated management of health" (OGIS-DM1). This tool, which is meant to be a guide for the nurse for evaluation of interventions to be undertaken, notably is aimed at refinement and development of new competences of the nurses, as well as their professional self-government. The purpose of this study is to explore changes brought about by the introduction of OGIS-DM1 on the feeling of competence and professional self-government of the nurses. A pre- and post-implementation study of numerous cases and six nurses was used. Data were acquired through semi-structured interviews, using the domains of competence of Benner and the Dempster Practice Behaviours Scale. In most cases, the introduction of OGIS in the practice of the nurses ameliorated the feeling of competence in functions of diagnosis and surveillance, and of efficient caregiving, organization and sharing out of tasks, as well as help. It also supported autonomous behaviours in nurses.
A5 (EN)
Under Pressure: Understanding Chiari Malformation
A. Manicat-Emo, M. Namtu, B. Sivakumar
Chiari Malformation is a structural defect in the cerebellum characterized by its herniation through the foramen magnum into the spinal canal. The resulting pressure on the cerebellum and, possibly, the brain stem may have devastating effects on the neurological functions controlled by these areas and impede the flow of cerebrospinal fluid. There are several different forms. The most common type is Chiari I Malformation, and less commonly Chiari II Malformation, also known as Arnold-Chiari Malformation. The causes of Chiari Malformation, as well as its symptomatology, associated conditions, radiographical findings, and clinical treatment will be discussed. Two case presentations are provided to illustrate the nature of this disorder and its impact on the patients and their families. The nursing and interprofessional approach to its management are also addressed.
B5 (EN)
Presumed Perinatal Ischemic Stroke, a Retrospective Diagnosis
S. Rothenmund, N. Thornton
You will not incur a higher period of risk for stroke than the week you are born. With an incidence of at least 1:4,000 live births, perinatal ischemic stroke syndromes are common, but poorly understood. Presumed perinatal ischemic stroke (PPIS) is diagnosed retrospectively, usually within the first year of life. Despite the plasticity of the young brain, most survivors suffer adverse neurological outcomes such as hemiparesis, language dysfunction, cognitive and behavioural disorders, and epilepsy. Much more research is needed to advance our understanding regarding the causes, prevention, treatment, and outcomes for this type of stroke.
Through case studies, this presentation will:
- Provide an overview of PPIS.
- Illustrate the impact of PPIS on the pediatric patient population and their families.
- Describe some of the challenges these children and their families face when confronted with this diagnosis.
- Describe initiatives our hospital has taken to help children and their families overcome some of these challenges.
C5 (EN)
Exploring Nursing Work Life Transition on an Acquired Brain Injury Rehabilitation Unit
T. Haycock, K. Low
The inpatient Acquired Brain Injury Rehabilitation program at Hamilton Health Sciences consists of three separate patient foci: community reintegration, neurobehavioural management, and slow to recover. Historically, these units have functioned independently of each other and were even located on different sites across the city of Hamilton, Ontario. However, the completion of a state-of-the-art regional rehabilitation facility in the fall of 2009 resulted in the merging of two separate units, the community reintegration and the slow to recover into one integrated unit. The aim of this presentation is to provide an overview of how the nursing staff and health care team adapted to this new environment. Furthermore, this presentation will address the stages of transition experienced throughout the unit merger, and the strategies employed by leadership and management to facilitate the transition. The results of a post-transition survey and focus group session regarding the experience will be presented and discussed with respect to present and future directions. This session will be applicable to all health care team members who may experience or have endured restructuring and reorganizing within their work life environment.
D5 (FR)
Systematic Telephone Monitoring of Patients Affected by Oculopharyngeal Dystrophy
N. Leclerc, A. Larouche, N. Bouchard
Muscular oculopharyngeal dystrophy is a form of hereditary muscular dystrophy that affects the muscles of eyes in most cases (eye palsies) and the muscles of the throat (dysphagia). The first symptoms appear most often between 45 and 55 years, and the evolution of the affected person is progressive and variable. Nonetheless, it is one of the milder forms of muscular dystrophy, not requiring an annual evaluation or even the presence or services of a specialized hospital. In the context of a slow evolution and variability from person to person, a telephone tool of systematic monitoring was developed by the nurses of the private hospital of neuromuscular diseases of Jonquière in Quebec. This tool aims at assuring an optimal monitoring of the patients by: 1) assessing the progress of illness, 2) targeting needs, 3) assuring referrals to requested services, and 4) assuring education according to needs. It was developed from observations made in the private hospital to correspond to the needs of the patients. It allows for assessment of the psychomotor system, dysphagia and the risks of nutritional deficit, as well as the presence of eye weaknesses. This presentation will introduce the developed tool.
A6 (EN)
Stroke E-learning Modules: Just a Click Away!
V. Riediger, R. Wiegner, A. Cayley, J. Abraham
The development of e-learning has provided institutions and educators the tools necessary to complement the traditional methods of education. Some of the advantages of e-learning are: the focus on specific topics, readily available, learner centred, self-paced, and cost effective. E-learning, as an adjunct to other teaching styles, can be used to maximize nursing knowledge and skills. Stroke is prevalent throughout all populations. Therefore, all nurses should be able to recognize the signs of stroke for all patients, and also have a thorough knowledge of best practice guidelines in order to provide optimal stroke care. An effective means to reach the majority of staff at the Toronto Western Hospital (TWH), a regional stroke centre, is through the use of e-learning. Using a multidisciplinary approach, stroke e-learning modules were developed based on a regional and internal needs assessment and the Canadian best practice stroke guidelines. The electronic learning format developed by the TWH stroke nurses in conjunction with nursing informatics will be presented to demonstrate the advantages of this method.
B6(EN)
Parent Input, Are We Listening?
S. Rothenmund, N. Thornton, A. Kirton
A key goal of the Calgary Pediatric Stroke Program is to provide education and support for families of children diagnosed with stroke. Parent focus groups were conducted in the spring of 2009, helping us to better understand some of the challenges these families face in coping and daily living. In an effort to help parents overcome some of these challenges, we have been incorporating these parent perspectives into program planning and development. The highest occurrence rate of pediatric stroke occurs within the neonatal period. These perinatal stroke syndromes are most commonly diagnosed within the first year of life. Our first formal parent information and networking session targeted this specific patient and family population.
This presentation will:
- Provide an overview of parent feedback.
- Describe our collaboration with community stakeholders to provide a community-based parent support group.
- Discuss the development of our first formal parent information and networking session.
- Discuss future plans for further education and family support initiatives.
C6 (EN)
A Review of Recreational Street Drugs
B. Won, A. Dalgetty
The use of recreational street drugs seems to be more prevalent with today’s youth. Drug use is much more visible in the media, whether it is on the television or in the movies. These drugs are more accessible and affordable, enabling younger people the opportunity to experiment. At BC Children’s Hospital, we have seen some of the adverse effects this crisis has brought.
Not only are we seeing teenagers who have overdosed, taken drugs from a “bad batch”, or experienced a poor reaction, but we are also seeing babies born from young parents who are regular users of these drugs. This population poses a unique challenge for nurses. We have to be tolerant and we have to educate ourselves about the more common street drugs and their effects on the brain. What are the long- and short-term side effects of their use, and how does this look at the bedside or in the clinic? What are the implications for nursing care?
D6 (FR)
Nursing Case Manager in Neuromuscular Diseases: Outcomes of a Community-Integrated Care Pathway Implementation
M.C. Chouinard, C. Gagnon, J. Mathieu
Adult-onset neuromuscular diseases present several challenges to service organization due to numerous physical and psychosocial impacts, symptom variability and lack of consensus regarding their care. In addition, neuromuscular clinics present different service organization, with the medical model being predominant, and limited access to health care resources including neurologists and the rehabilitation team. Part of the solution may lie in giving nursing staff more responsibilities in evaluation/intervention and referral procedures to health care and community resources. An evidence-based integrated care pathway (ICP) was developed to support the neuromuscular nurse in this extended role. The ICP was developed after an extensive review of literature and an international expert consultation. The objective was to improve factual practice and service organization with the implementation of the ICP within a nursing case management framework without impeding on service satisfaction and quality of life of the participants. The ICP was implemented among 45 participants with myotonic dystrophy at home and compared to a control group. The results demonstrated improved factual practice and service organization with no change in patients’ satisfaction and quality of life. This research supports the hypothesis that a nurse case manager using an ICP can adequately perform an annual follow-up with myotonic dystrophy patients.
Thursday, June 10
A7 (EN)
Maintaining the Stroke Continuum of Care: Diabetic Management in Restorative, Rehabilitation and Out-patient Areas within the Champlain District Stroke Region
L. Joseph, E. Desjardin, S. Draper, J. Furletti, G. Miller, J. Sohmer
Diabetes is a major risk factor for cardiovascular disease and has been recognized as an independent risk factor for ischemic stroke. Diabetes also doubles the risk of stroke recurrence and stroke outcomes are significantly worse among patients with diabetes, with longer hospital stays, long-term stroke mortality, and more residual neurological and functional disability (Canadian Best Practice Recommendations for Stroke Care, 2008). The Best Practice Guidelines for Stroke Care (2008) outlines specific standards and recommendations for the management of particular health conditions impacting stroke recovery. The restorative, rehabilitation and outpatient stroke programs at Bruyère Continuing Care reviewed these guidelines and the 2008 Canadian Diabetic Guidelines to promote best practices in diabetic management of the stroke patient across the continuum of care. The purpose of this presentation is to outline the process used by the authors to develop an action plan to ensure these guidelines were being implemented for stroke patients with diabetes. Strategic directions and specific goals were identified and aligned to the organization’s strategic directions. Interventions implemented to change practice will be presented, along with implications for nurses working in similar settings.
B7 (EN)
Hurry Hard: The Joys and Worries of a Canadian Pastime
T. Bergner
It is well known fact that curling is a Manitoba and Canadian passion with more than one million Canadians taking to the ice and rings every winter. With our growing trend toward increasing Body Mass Indexes and our increasing time constraints with work, school and family, how does one fit exercise and fun into one’s world? Curling is a sport that someone can play for his or her entire life. It also allows people of different abilities and ages to curl against one another. What other sport do you know of that has wheelchair athletes competing against non-wheelchair athletes? It is also one of the most sportsmanship-embedded activities. There are no officials on the ice and each game starts and ends with a handshake, wishing one another good luck and a good game. Curling is also one of the only ice sports that does not require wearing of protective headgear. Using case studies, this presentation will outline the sport of curling and the neurological risks that present while playing the game.
C7 (EN)
Development of a Community-Integrated Care Pathway for Health Management in Myotonic Dystrophy
M.C. Chouinard, C. Gagnon, J. Mathieu
Adult neuromuscular disorders like myotonic dystrophy type 1 (DM1) require long-term health management. However, lack of specialized resources, variable clinical pictures and scarcity of guidelines make its management a constant challenge. We proposed that rehabilitation nurses can have an extended role in health management of DM1 patients within a case management framework. To support their practice, a community-integrated care pathway was developed (ICP-DM1) by a clinical and research team. An ICP may include multidisciplinary, multi-agency, clinical activities, tests, assessments, local and national standards, and decision trees that help to prompt decisions based on clinical practice guidelines. This poster will describe strategies used for the development of this ICP-DM1: 1) literature review (n = 847) using the SIGN method; 2) a chart review in four clinical settings to identify actual clinical practice; 3) validation by rehabilitation nurses (n = 4) and international panel of researchers (n = 9); and 5) pilot implementations (n=5; n=45). An administration manual was developed and a workshop was given to nurses from neuromuscular clinics in Quebec. These strategies led to a promising tool that may permit nurses to accomplish the proposed extended role in order to offer services based on factual practices and DM1 patients needs.
D7 (EN)
“No More Scars”: Past and Present—Implication of Postoperative Skull Base Tumour Resection in the Neuro Critical Care Unit
A. Vasconcelos, Y. Silvestre , J. Yu
The Krembil Neuroscience program at the Toronto Western Hospital, a division of the University Health Network, is a world leader in neuroscience. Minimally invasive surgery for skull base tumours is a standard of practice for our patient population. Traditionally, resection of a tumour on the base of the skull involved an extensive and invasive craniofacial approach, which involved extensive surgical and postoperative interventions. Previously, surgical technique for pituitary tumors, which is located at the base of the skull, included incision inside the mouth or by performing craniotomies. The Krembil Neuroscience Program at the Toronto Western Hospital uses a minimally invasive endoscopic approach for patients requiring skull base tumor resections.
This technique provides patients with fewer complications, far less postoperative pain and faster recovery than with the traditional surgical method such as craniotomies. This presentation will explore the changes of the surgical revolution of skull base tumors/pituitary tumours with respect to surgical interventions, patient outcomes and nursing care and practice in the neuro critical care unit. An in-depth nursing perspective of the care that is provided to this patient population today in comparison to the care plans of the past will be explored and discussed throughout this presentation.
A8 (EN)
Is BABS a Word? Brain Artery Bypass Surgery
M. Pantalone, S. Broughton
Health care personnel think of bypass surgery as a cardiac intervention, known as coronary artery bypass graft surgery (CABG). However, since 1967, neurosurgeons have been perfecting a cranial microsurgical technique known as brain artery bypass surgery. This concurrent session will review normal arterial blood flow, and pathological reasons for brain bypass surgery. Diagnostic criteria and surgical evaluation for brain bypass surgery candidates will be reviewed. The intricate extracranial-to-intracranial brain bypass procedure will be presented. Using a case study approach, nursing care of a patient undergoing brain bypass surgery will be examined. This session has significant implications for nursing practice at all levels of care. Critical care nurses and perioperative nurses are responsible for the immediate care of the postsurgical patient. As patients move through the health care continuum, neurosurgical nurses and rehabilitation nurses will assist the patient and family to meet their maximum health potential. As this surgical procedure is done at tertiary care hospitals, it will allow health care providers working in community and remote settings to learn more about this life-saving procedure.
B8 (EN)
Move Over Mr. Elephant: Advanced Care Planning in Pediatric Patients with Neuromuscular Disease
L. Pearlman
Advance care planning is a process of dialogue and clarification of patient goals of care, as it relates to treatment decision-making, resuscitation, palliative and end-of-life care. Infants, children and adolescents with neuromuscular diseases (NMD) have a progressive illness trajectory and a shortened lifespan. However, pharmacological and technological advances translate into specific patients with neuromuscular disease living beyond care at pediatric centres. These patients, most often adolescent boys with Duchenne Muscular Dystophy, live well into early adulthood, often without advanced care directives in place and with increasing comorbidities. Neuroscience nurses in both pediatric and adult settings encounter patients with NMD in acute care, critical care and outpatient settings. The intent of this presentation is to (1) present the unique considerations of advanced care planning for pediatric patients with NMD and their families, and (2) critically examine the research of advanced care planning in this specialized group of neuroscience patients. The principles of advanced care planning are relevant to every neuroscience nurse working in pediatric/adult and acute/chronic/rehabilitation settings.
C8 (EN)
Adapting and Validating the Stanford Self-Management Program for People with Myotonic Dystrophy Type 1: Preliminary Results and Lessons Learned
C. Gagnon, M.C. Chouinard, J. Mathieu, N. Leclerc, S. Jean
Patients with myotonic dystrophy type 1 (DM1) deal with the challenges associated with the disorder on a daily basis. Self-management is an approach that allows for people with chronic diseases to take charge of their condition. A self-management program already used for other chronic diseases at the Patient Education Research Center (Stanford University, California) has been adapted to DM1 patients, to be led by two health care professionals and to include the participation of family members. It was preliminary tested with five DM1 patients and their caregivers. Interviews and questionnaires about main indicators developed by the Stanford team (fatigue, self-efficacy, pain, illness intrusiveness, etc.) were used before, during and after. The participants were very satisfied and judge that the content was pertinent to their reality, providing sufficient material for them to handle the disorder. The trainers observed that participants achieved a feeling of confidence, encouraging active participation. Caregivers also noted a better understanding of the disorder, allowing them to act as a source of support. The results also suggested a potential improvement of indicators once the program was completed. These preliminary results confirm that the adapted self-management program is plausible and has the potential to bring positive outcomes to that population.
D8 (EN)
Writing for Publication
S. Sarkissian
Back by popular demand! Come and learn tips and guidelines for getting your case studies and research work turned into a format that helps you get published.
A9 (EN)
Terson’s Syndrome: A Complication of Aneurysmal Subarachnoid Hemorrhage
C.A. Miller
Aneurysmal subarachnoid hemorrhage accounts for approximately 5% of all strokes. It is associated with high rates of morbidity and mortality. Of those who survive the initial hemorrhage, life-threatening complications include hydrocephalus, vasospam and stroke. Neuroscience nurses play a critical role in the early detection of these complications. This allows for timely intervention that can prevent permanent deficits. Terson’s syndrome or vitreous hemorrhage is a lesser-known complication of aneurysmal subarachnoid hemorrhage. It has been reported to occur in up to 40% of patients. This presentation will review a case of Terson’s syndrome in a 46-year-old female following rupture of a posterior communicating artery aneurysm. The important role of the neuroscience nurse in screening for Terson’s syndrome will be highlighted.
B9 and B10 (EN) *double session
Traumatic Brain Injury: Transitioning from “Poor” Prognosis to Palliative Care
S. Kadyschuk, T. Robertson
Hickey and Montgomery (2009) note the context and circumstances surrounding neurologically compromised patients are unique in that the “organ of reason” is rendered permanently impaired and patients are unable to make informed-consent decisions. This often leads to a state of “limbo” for many severely brain-injured patients. These patients often show no signs of neurological improvement and their prognosis is poor. However, they are without end-of-life care plans. In addition to recognized moral and ethical implications, there appears to be many barriers to decision-making regarding transition to palliative care, including ambiguity of prognosis or uncertainty. Is it time to develop a pathway for pre-palliative care for TBI survivors, perhaps for some, facilitating transition from a state of limbo to palliative or end-of-life care?
Using case studies of three young, severely brain-injured patients, this presentation will illustrate the multifaceted challenges facing neuroscience nurses who care for the long-term brain-injured patients; specifically young adults whose prognoses are designated poor, but who have no end-of-life care plans. Although the patients to be presented had similar prognoses following initial emergency and critical care interventions, their medical treatment followed different trajectories, each fraught with difficulties that impacted the patients, their families, nurses and other health care professionals.
C9 (EN)
Quality Improvement through the Development of the SCIN Team
S. Nicosia
Pressure ulcers are a common secondary complication for persons with spinal cord injury (SCI). They affect the person’s well being and health, and are extremely costly to the health care system. A quality improvement model was used to examine the problem of increased incidence of skin breakdown in this population and to direct effective changes in practice by developing an SCIN Team. The SCIN Team is made up of a group of nurses who are specialized in the area of spinal cord injury who were provided with support to obtain additional education in skin care. These nurses became champions of skin management for in-patients with spinal cord injury. The champion would help other nurses with care coordination, provide consultation at the bedside and model best practice. The champion would also lead an interdisciplinary team to conduct weekly skin care rounds providing an expert educational and clinical resource for frontline staff at the point of care. Development of champion roles would be on both the acute spine unit and spinal cord injury rehabilitation units. To complete the quality improvement process, outcomes include reduction in the incidence of pressure ulcers, increased awareness and utilization of guidelines, and reduced length of stay.
D9 and D10 (EN) *double session
Developing a Comprehensive Care Pathway for Traumatic Spinal Cord Injury Patients
R. Murphy
Traumatic spinal cord injury can result in devastating losses for affected patients and their families. The health care professionals’ ability to anticipate the care needs and challenges these patients may face can favourably influence the course of recovery and adjustment to illness. To achieve this, the effective coordination of care and services for patients with spinal cord injury within an interdisciplinary framework is paramount. There is much literature to suggest that care pathways can be useful tools to improve patient care. This workshop explores one organization’s collaborative efforts to develop a care pathway for the patient with traumatic spinal cord injury with an emphasis on:
- employing evidence-based interventions to achieve patient-centred goals
- producing measurable outcomes.
- standardizing the care of the patient with traumatic spinal cord injury along the health care continuum, from critical care to rehabilitation and synchronizing the interdisciplinary team’s management of these patients.
A10 (EN)
The Pressure Cooker: Hypertension and Hemorrhagic Stroke
N. Chenier-Hogan, D. Bowman, D. Podgers
Although hemorrhagic stroke accounts for approximately one-fifth of the stroke population, it continues to have a three- to five-fold higher 30-day mortality rate than ischemic strokes. The majority of these strokes are intracerebral. Intracerebral hemorrhage (ICH) is most common in patients with hypertension and cerebral atherosclerosis, which results in degenerative changes to the vessel caused by these diseases and increases risk of rupture. This mostly occurs in cerebral lobes, basal ganglia, thalamus, brain stem (pons) and cerebellum. With hypertension being a primary risk factor, the importance of blood pressure control cannot be underestimated. The early identification and intervention in primary care accompanied with health teaching is essential. In the event of hemorrhagic stroke, maintenance of strict blood pressure parameters are necessary to prevent further sequelae. Patients with ICH often have greater neurological instability and risk of early neurological deterioration than patients with ischemic stroke. They will have greater need for neurological expertise, monitoring of ICP and neurosurgical intervention. Astute assessment is essential to identify changes in neurologic condition. The diagnosis, prevention, medical and surgical management and outcomes of patients with hypertensive hemorrhagic strokes will be reviewed using case studies.
C10 (EN)
Treatment of Aggressive MS with High-Dose Chemotherapy and Autologous Stem Cell Transplant: The Impact on Quality of Life and Fatigue
M.J. Bowman, M.S. Freeman, H.L. Atkins
Background: High-dose chemotherapy and autologous stem cell transplantation is a potential treatment for aggressive MS, but can be associated with significant morbidity and mortality. Any gains from treatment must not be offset by reductions in the quality of life (QoL) or worsening fatigue.
Design: The Canadian MS/BMT trial is a non-randomized phase II trial of immunoablation and purified ASCT in aggressive MS patients who have failed ≥1 year of standard treatment. MSQoL-54 and fatigue impact scale (FIS) were assessed in all patients in the three months pre-transplant and every six months thereafter for three years.
Results: Twenty-four patients have received the treatment and have remained free of MS relapses or any new MRI activity. Fourteen patients have completed 36 months of follow-up, and three patients have completed 12 months of follow-up. Overall physical (pQoL) and mental (mQoL) scores: all but three treated patients reported improvement or stabilization in pQoL and all but one improved or stabilized in mQoL in 12- to 36-month post-transplant period. FIS: all but two treated patients improved or remained unchanged compared with the pre-transplant period.
Conclusion: Immunoablation and ASCT stabilizes or improves very aggressive MS patients without compromising patient-related outcomes of well being (FIS and MSQoL54).
Abstracts for posters
Patients’ Experiences with Postoperative Pain after Spinal Surgery and their Perceptions of Pain Management
S.T. Chan, C. Nehme, J. Rennick
Background: Despite advances in pain management techniques, it has been found that approximately 50% to 80% of patients still suffer high severity of pain after surgery. In particular, patients who have undergone spinal surgery are known to experience a high intensity of pain.
Objective: To explore the pain experiences of spinal surgical patients and their perceptions of postoperative pain management.
Methods: A qualitative descriptive design using semi-structured interviews.
Participants: A convenience sample of 12 spinal surgical patients from a neurosurgery unit at a university-affiliated hospital.
Results: Spinal surgical patients were found to experience moderate to severe pain after the surgery. Pain location and intensity were different in comparison to patients’ pre-operative pain. The pain experience was influenced by history of pain experience, personal beliefs, and coping strategies. Although pain was a priority in postoperative care setting, approaches used by health care providers in pain control involved mainly regular intake of analgesics and additional medication as needed. Efficiency of nursing care, physiotherapy, and pre-operative information provided by health care providers to patients were aspects in pain management that were appreciated by patients. Despite experiencing high severity of pain after surgery, patients were generally satisfied with the pain management received during their hospital stay.
Burrholes Without Borders
J. Evans, J. Middleton, V. Warne
Burrhole is a simple procedure that involves drilling of a small hole(s) in the skull to allow for drainage of blood (i.e., chronic subdural hematoma SDH).
Traditionally, the burrhole procedure is done in the operating room, which has the potential to disrupt the electively scheduled operative procedures already taking place.
The development of a dedicated procedure room in the critical care area provides prompt, safe and expedient treatment, as well as continuity of neuroscience nursing care and a more streamlined approach to repatriation for these individuals who, in most cases, can be safely returned to their hospital of origin. Our poster will cover the prerequisites and considerations and statistics, as well as the initial phase and relevance of this simple procedure in our unit.
Interventions with Families Experiencing Chronic Sorrow Related to Multiple Sclerosis
D. Lowden, L. Fabijan
Multiple sclerosis is a chronic, disabling neurological illness, the diagnosis of which may represent multiple losses for individuals and their families. Research on individuals and families suggests that both experience a high level of chronic sorrow, described as pervasive or intermittent grief in relation to an illness. Incremental or progressive worsening of the disease, significant caregiver responsibilities and missed developmental milestones can lead to a sense of chronic sorrow. The resulting emotional distress is not always adequately addressed by clinicians in the field of multiple sclerosis care. In our tertiary care centre multiple sclerosis program, clinical nurse specialists engage in a collaborative partnership with individuals and families around issues related to coping with this chronic illness, including the management of chronic sorrow. The McGill Model of Nursing and the Calgary Family Assessment and Intervention Models are the principal frameworks that guide work with families. Elements from theories of individual and family chronic sorrow provide specific direction for understanding and assessing this lived experience in families coping with multiple sclerosis. This poster will discuss interventions that can be used by clinicians in relation to chronic sorrow, focusing on emotional, cognitive and behavioural domains and moving beyond empathic listening and “emotional support” to collaborative goal setting and problem solving over the illness trajectory. Outcomes such as finding new ways of communicating, reframing the meaning of events, agreeing to respite or ensuring time together as a couple are examples of outcomes that will be described.
The Prevent Alcohol and Risk-related Trauma in Youth (PARTY) Program
J. Banfield
Introduction: The Prevent Alcohol and Risk-related Trauma in Youth (PARTY) program is a one-day injury awareness and prevention program for youth ages 15 and older, developed in 1986 at Sunnybrook Health Sciences Centre. To date, the program has expanded to well over 100 sites and into six countries.
Methods: The goal of PARTY is to provide young people with information about injury (trauma) that will enable them to: recognize potential injury producing situations, make prevention-oriented choices and adopt behaviours that minimize unnecessary risk.
Results: Students follow the course of injury from occurrence, through transport, treatment, rehabilitation and community re-integration. They interact with professionals that include paramedics, police, nurses, physicians, and persons who have been injured. They are given information about: basic anatomy, physiology and the mechanics of injury; the effects of alcohol/drugs on decision-making, judgment, concentration and coordination; the nature of injuries that can be repaired, and those that cannot; the effect of injury on families, finances and future plans. Evaluation of the program has shown effectiveness with reductions in crashes and injuries.
Conclusions: This program is a vital component of the growing community effort to reduce death and injury in alcohol- and risk-related crashes and other incidents.
The Evaluation of Kolb’s Experiential Learning Model in Training Nurses about Creutzfeldt-Jakob Disease
R. D’Amour, P. Guimond
Creutzfeldt-Jacob disease (CJD) is a rare prion disease that is fatal. Prion diseases affect humans and animals such as cattle (bovine spongiform encephalopathy, commonly called “mad cow disease”). The mad cow disease epidemic in the United Kingdom popularized prion diseases worldwide. This contributed to the proliferation of disinformation, causing confusion between those two prion diseases in the public and health care providers. The purpose of this paper is to describe the approach utilized to develop and evaluate an educational module on CJD for nurses. Kolb’s four phases of experiential learning model were used in this intervention. A workbook was developed to complement learning. Fifteen participants were recruited from the Alzheimer Society of Canada. The results indicated that the participants had limited knowledge about CJD. They felt unprepared in providing care to these patients. An experiential learning model is an effective approach to increase knowledge about CJD. Kolb’s experiential learning approach is highly efficient in providing knowledge to nurses. With an adequate educational tool, information can be obtained to improve patient care. The importance of having knowledge to provide better care to this unique clientele cannot be overlooked.
Enhanced Stroke Education using Motivational Interviewing Increases Patient Knowledge and Satisfaction after Discharge from an Acute Care Setting
A.M. Byers, L. Lamanna, A. Rosenberg
Having knowledge of the warning signs of stroke may reduce the incidence of having a second stroke by receiving medical intervention in a timely manner. The need for stroke education in the acute care setting is paramount to obtaining this goal. The objective of this pilot study was to develop and evaluate an effective method of providing stroke education in an acute care setting.
Method: Twenty patients were recruited and randomized to two groups. Group one was given verbal and written education at the time of discharge by the discharge nurse without the caregivers present. Group two was given individualized protocol-driven verbal and written education with the caregivers present within the context of the Therapeutic Alliance Model using motivational interviewing techniques. A Stroke Knowledge Test (SKT) and Satisfaction Survey were sent to their homes at one month after discharge. Results indicated that the enhanced education group had higher scores on the SKT and improved stroke education satisfaction scores.
Conclusions: An enhanced educational method using an individualized protocol-driven education to the stroke patient and a caregiver increases stroke knowledge and improves stroke patient education satisfaction scores after discharge from the acute care setting.
Development of an Evidence-Based Pathway for Accurate Diagnosis of Urinary Tract Infections in Neurology Patients
S. Rachel
Neurology patients are susceptible to developing urinary tract infections. These are often associated with prolonged or inappropriate use of indwelling catheters. Patients’ alterations in sensorimotor function, decreased levels of consciousness and diminished cognitive or communication abilities also create challenges for nurses to assess signs and symptoms of urinary tract infections (UTI). Accurate diagnosis of UTIs depends on clinical signs and symptoms, as well as laboratory results. As the infection control practitioner in a neuroscience setting, my objective was to develop a teaching program for the team to promote appropriate use of catheters, accurate diagnosis of infections and to reduce the incidence of inappropriate prescribing of antibiotics. The first step was to evaluate current practice. This was done by chart reviews and unit-based discussions. The Centers for Disease Control (CDC) surveillance definitions for UTI were used to develop guidelines for practice. Both nurses and physicians were found to have misconceptions. Weekly teaching sessions focused on implementing an algorithm describing the procedure in the case of suspect UTIs. This poster will describe the transition process and the impressive changes in nursing practice related to UTIs.
Leaders and Innovators in Neuroscience Nursing, 1934–2009
M. Stewart, L. Fabijan, P. Kerr, S. Koutsogiannopoulos, C.A. Miller, R. Sourial
The Montreal Neurological Institute and Hospital (MNI/H) celebrated its 75th anniversary in November 2009. This poster showcases the achievements of neuroscience nurses at the MNI/H in patient care, nursing education and research, beginning with the first Director of Nursing, Eileen Flanagan. Her visionary belief in the importance of neuroscience nurses being well educated in their specialty was the impetus for the development of the neuroscience nursing program, which continues to evolve to the present day. Over the past 20 years, there have been numerous innovations directly attributable to the transformational leadership of Patricia O’Connor. These include the implementation of in-patient and out-patient best practice guidelines and protocols, the development of interprofessional ambulatory teams co-led by clinical nurse specialists, clinical and educational partnerships at the provincial and national level, strong links and academic appointments with McGill University, nursing research projects and numerous publications. Archival and recent photographs illustrate the evolution of nursing at the MNI/H over nearly eight decades.
Experience of Korean Elderly Patients Undergoing Lumbar Spine Surgery: Inventive Adaptation to Post-Surgical Lives
M. Jun, E. Lim, C. Choi
The number of elderly undergoing spine surgery has grown rapidly. Nursing has to pay more attention to this population’s adaptation to their daily lives following surgery.
This ethnographic nursing research was done to understand major experiences of the Korean elderly undergoing lumbar spine surgery from May 2009 to January 2010 using in-depth interviews and participant observation at both the hospital and their homes. After ethnographic analysis of 20 participants’ verbatim and field notes, researchers could learn that elderly patients went through the feeling of uncertainty about the prognosis of the disease. Major problems they faced after the surgery were knowledge deficit in how to take care of them at home, especially while wearing a back brace. In adapting to those problems, they invented various adaptation skills on their own and overcame many daily life difficulties. They utilized such skills and ideas tailored to their specific cultural environments. Those various adaptation skills were derived from their life-long experiences and their individualized background knowledge. Based on this observation, researchers recommend these inventive adaptation skills be taught as culturally sensitive educational tips when teaching patients for their home care.
Hard to Swallow: Understanding the Lived Experience of Caregivers for Individuals with Myotonic Dystrophy (DM1) and Dysphagia
K.A. LaDonna, W.J. Koopman, S.L. Ray, S.L. Venance
Rationale: Given the complex physical and cognitive challenges faced by individuals with myotonic dystrophy (DM1), caregivers provide physical, social, and emotional support. The morbidity and mortality associated with dysphagia makes caregivers responsible for supervising food intake and for recognizing, preventing, and treating choking episodes. To date, the literature neither includes a needs assessment nor a study of the social and emotional impact of dysphagia for DM1 individuals and their families.
Objectives: To understand the lived experience of DM1 caregivers, and to assess their perceptions of individuals with DM1 and dysphagia.
Methodology/method: An interpretive phenomenological approach was used as the methodological framework for this study (in progress). Individuals with DM1 (n = 5-10) were asked to invite a caregiver to be interviewed. Interviews will be transcribed verbatim and read as a whole to determine emerging themes. Data collection will continue until no new information is forthcoming. To ensure authenticity, participants will review a list of themes compiled by the researchers.
Results/future directions: To date, one caregiver has been interviewed, and four more have consented to participate. The participant interviewed suggests that symptoms may socially impact individuals with DM1 and their families, but that dysphagia may be a lesser concern than other aspects of the condition. Participant recruitment and data collection will continue to determine if these findings resonate with other DM1 caregivers.
An Evaluation of an Interprofessional Positioning Protocol for Patients with Guillain-Barré Syndrome
W. Koopman
Patients with Guillain-Barré Syndrome (GBS) who experience quadriplegia are at risk for contractures, which may, ultimately, limit functional recovery. A retrospective chart review of these patients at a tertiary care centre identified that some lost significant range of motion (ROM) despite standard care. Following a literature review, a prolonged positioning protocol was developed. Four positions were identified to address major muscle groups at risk of contracture development. Adult patients were eligible for this study if shoulder or hip flexor strength was less than Grade 3 on the MRC scale for more than two weeks. Nine patients were included in this case series. Patients were positioned in two of the four positions each day for 30 minutes. Therefore, each position was utilized every other day. Range of motion was measured on admission to the study, six weeks and discontinuation of the protocol or discharge from hospital. The majority of patients maintained or gained ROM in the muscle groups identified most at risk. Pain and edema did not limit the use of this protocol. This interprofessional positioning protocol appears to be effective at preventing loss of ROM in this population and continues to be followed at this centre.