Consent and assent to participate in research from people with dementia.

Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study.

Partnerships in specialty care: exploring rural haemophilia provider resource needs.

OBJECTIVE: The purpose of this study was to determine whether rural providers have adequate preparation for safe and effective haemophilia care. DESIGN: This qualitative study proceeded in two phases: focus group (phase I) and telephone (phase II) interviews. SETTING: Five Canadian rural hospitals served by one urban haemophilia treatment centre and providing service to at least one haemophilia family. PARTICIPANTS: Phase I: focus groups of rural health professionals (site 1: n = 5; site 2: n = 6), including nursing, medicine and lab technology. Phase II: telephone interviews with nine participants from nursing, medicine, lab technology, social work and physiotherapy across three sites. MAIN OUTCOME MEASURES: Qualitative content analysis yielded categorical themes for specialty care resource requirements in a rural context. RESULTS: Resource needs reflected five main categories: communication network, subjective knowledge, team roles, objective knowledge and partnerships (C-STOP). CONCLUSIONS: The five C-STOP categories require resources and alignment of urban specialist, rural provider and family expertise. Specialty clinic efforts promoting self-care are incomplete without matched resources for rural providers.

Measuring physical and social environments in nursing homes for people with middle- to late-stage dementia.

OBJECTIVES: To evaluate measures of dementia care environments by comparing a special care facility (SCF) with traditional institutional facilities (TIFs). DESIGN: A cross-sectional comparative study of nursing home environments conducted as part of a longitudinal study on quality of life for residents with dementia. SETTING: Twenty-four traditional nursing homes and one special care facility. PARTICIPANTS: One SCF with six distinct environments, 24 TIFs with 45 distinct environments, and 88 family members. MEASUREMENTS: Therapeutic Environment Screening Scale-2+ (TESS-2+); Special Care Unit Environmental Quality Scale (SCUEQS), a subset of the TESS-2+ items; Composite Above Average Quality Score (CAAQS), a composite score of all items on the TESS-2+; and Models of Care Instrument (MOCI). RESULTS: The SCUEQS did not detect a significant difference between the SCF and the TIFs (30.0 vs 27.2, P = .28). The CAAQS detected a significant difference between the SCF and the TIFs, whereby the SCF environments were rated as having above-average quality in 71.4% of the domains, compared with 57.3% for the TIF environments (95% confidence interval (CI) for difference = 2.6-25.6%, P = .02). Using the MOCI, SCF families were 1.8 times as likely to rate the SCF as a home or resort versus a hospital as TIF families rating TIFs (95% CI for odds ratio = 1.5-2.1, P < .001). CONCLUSION: The TESS-2+ CAAQS differentiated between physical environments better than the more established SCUQES. The MOCI distinguished between environments using a more holistic approach to measurement. The availability of environmental measures that are able to discriminate between specialized and traditional long-term care settings will facilitate future outcome-based research.

A new approach to the construct of alertness.

OBJECTIVE: There are no psychometric measures to evaluate the critical construct of alertness. We, therefore, developed two questionnaires to measure alertness, the Toronto Hospital Alertness Test (THAT) and the ZOGIM-A, and evaluated their psychometric properties. METHODS: We examined the correspondence between scores on the THAT and the ZOGIM-A in a sample of sleep clinic outpatients (n=96) with Maintenance of Wakefulness Test (MWT) results after an overnight sleep study, physiological sleep parameters, measures of subjective sleepiness, and two psychosocial variables (psychological well-being and emotional distress). Test-retest reliability was estimated based on responses from an independent sample of 295 sleep clinic outpatients who completed the instruments before and after an overnight sleep study. RESULTS: High values were observed for both the THAT (r(tt)=.79) and the ZOGIM-A (r(tt)=.70). Internal consistency reliability (coefficient alpha) was also high: .96 for THAT and .83 for ZOGIM-A. Although neither of the new scales correlated significantly with measures derived from the MWT or nocturnal physiological measures, the two alertness scales did correlate significantly and as hypothesized with subjective measures of sleepiness and other psychosocial measures. CONCLUSIONS: These results support the perspective that subjective alertness cannot be reduced to the absence of sleepiness and corroborate the psychometric adequacy of the THAT and the ZOGIM-A as unique indices of alertness that complement objective data obtained via MWT and physiological indices of sleep architecture.

The Internet as a source of data to support the development of a quality-of-life measure for eating disorders.

Despite the attractiveness of the Internet as a data source on individuals' experiences with health conditions, few have studied its use in quality-of-life instrument development. In this article, the authors describe the use of Internet-based unsolicited first-person narratives to supplement qualitative material derived from other sources (published articles and interviews) in the early stages of development of a quality-of-life instrument for eating disorders. In a systematic Internet search, they identified 31 posted first-person narratives. Sixteen (52%) authors had anorexia nervosa, 11 (35%) had bulimia nervosa, and 4 (13%) had either eating disorders not otherwise specified or both diagnoses. Themes arising from the narratives were very similar to those from other sources; however, some specific sensitive topics uniquely expressed in the narratives produced items that the authors later validated in focus groups. Despite some limitations, the Internet was an efficient, inexpensive, and fruitful source of supplementary information for item generation.

Rehabilitation outcome evaluation after very severe brain injury.

Few centres provide long-term therapy for survivors of very severe brain injury who continue in a minimally responsive state. We report on two outcome evaluation projects in association with one such centre in western Canada. In one project a functional scale to detect subtle changes after long-term therapy with the most severely compromised clients (Rancho levels II and III) is being tested. In the other project outcome indicators of change in quality of life after initiation of community-based rehabilitation have been generated by collecting over 400 critical incidents reported by family members, volunteers, staff and a few higher functioning clients. Our intention in this report is to highlight what can be done in terms of rehabilitation and outcome evaluation with clients who seem to be persisting in vegetative or minimally responsive states.

Mary Glover Lecture 2004: leaving a legacy.

Mary Glover was a Head Nurse at St. Paul's Hospital in Vancouver. She was killed in a plane crash more than 25 years ago. Yet, through this neuroscience nurse's passion for her specialty, we share in her legacy through the annual Mary Glover Lecture, which was established by her parents after her death. The first Mary Glover Lecturer was Pamela Mitchell, a well-known neuroscience nurse from the School of Nursing at the University of Washington. She is leaving a multifaceted legacy through her research on intracranial pressure and quality of care as well as her books and her mentorship. Jessie Young has left a legacy as the founder and first president of the Canadian Association of Neuroscience Nurses (CANN). CANN is leaving a legacy with many firsts among Canadian nursing specialty organizations. Leaving a legacy is not just about donating money or writing a famous book. For most of us, our legacy comes in the little everyday things of life. Ask yourself, what is the legacy that you are leaving as a neuroscience nurse and as an individual?

Post-stroke shoulder subluxation: a concern for neuroscience nurses.

Approximately 84% of all stroke patients with hemiplegia will experience shoulder injury and pain. The importance of maintaining proper posture while positioning and transferring a stroke patient is key to decreasing risk for shoulder injury. Shoulder subluxation injury post-stroke is a consequence of sustained hemiplegia and spasticity. Current research evidence suggests that using therapies such as gentle range of motion and functional electrical stimulation may reduce and prevent shoulder subluxation and hemiplegic shoulder pain. However, physiotherapists are currently the only professionals who can implement such therapies. Considering that stroke care provided by neuroscience nurses includes transferring, positioning and assisting in activities of daily living, it is clear that nurses are an important part of the therapy process. Therefore, the question is: "What is the role of the neuroscience nurse in the reduction and prevention of shoulder pain post-stroke?" The purposes of this paper are to i) discuss the causes of shoulder subluxation and related pain post-stroke, ii) review current best practice in prevention and treatment of shoulder subluxation, and iii) explore ways in which the acute neuroscience nurse can prevent or reduce shoulder subluxation in the hemiplegic stroke patient.

Special care facility compared with traditional environments for dementia care: a longitudinal study of quality of life.

OBJECTIVES: To compare the effect of a specialized care facility (SCF) on quality of life (QoL) for residents with middle- to late-stage dementia over a 1-year period with residence in traditional institutional facilities. DESIGN: A prospective, matched-group design with assessments of QoL every 3 months for 1 year. SETTING: Twenty-four long-term care centers and four designated assisted living environments in an urban center in western Canada. PARTICIPANTS: One hundred eighty-five residents with Global Deterioration Scores of 5 or greater were enrolled: 62 in the intervention SCF group and 123 in the traditional institutional facilities groups. INTERVENTION: The SCF is a 60-bed purpose-built facility with 10 people living in six bungalows. The facility followed an ecologic model of care that is responsive to the unique interplay of each person and the environment. This model encompasses a vision of long-term care that is more comfortable, more like home, and offers more choice, meaningful activity, and privacy than traditional settings. MEASUREMENTS: QoL outcomes were assessed using the Brief Cognitive Rating Scale, Functional Assessment Staging, Cohen-Mansfield Agitation Inventory, Pleasant Events Scale-Alzheimer's disease, Multidimensional Observation Scale of Elderly Subjects, and Apparent Affect Rating Scale. RESULTS: The intervening SCF group demonstrated less decline in activities of daily living, more sustained interest in the environment, and less negative affect than residents in the traditional institutional facilities. There were no differences between groups in concentration, memory, orientation, depression, or social withdrawal. CONCLUSION: The present study suggests that QoL for adults with middle- to late-stage dementia is the same or better in a purpose-built and staffed SCF than in traditional institutional settings.

Neurodevelopmental treatment stroke rehabilitation: a critique and extension for neuroscience nursing practice.

The aim of this article is to review neurodevelopmental treatment (NDT) literature and existing stroke NDT nursing research, as well as explore issues related to professional collaboration in stroke rehabilitation and implications for neuroscience nursing practice. NDT or the Bobath approach is used to encourage stroke patients to use the affected side of their body in order to promote and relearn normal movement and to reduce muscle spasticity. Neuroscience nurses have an important role in facilitating stroke patients to practise transferring out of bed and performing activities of daily living outside of physiotherapy and occupational therapy sessions. Neuroscience nurses also care for stroke patients over a 24-hour perio. Therefore, it is important that nurses understand physiotherapy and occupational therapy strategies in stroke rehabilitation.

Quality of life in sleep disorders.

Quality of life is a major outcome variable in choosing and evaluating treatment alternatives for sleep disorders. However, the number of well validated and sufficiently responsive quality of life measures for use with this population is limited. The SF-36, Nottingham Health Profile (NHP) and Sickness Impact Profile (SIP) are the most frequently used generic measures. The Functional Outcomes of Sleep Questionnaire (FOSQ) and Sleep Apnoea Quality of Life Index (SAQLI) are useful as condition/disease specific measures. However there are not yet specific measures in common use for other sleep disorders. Results across the sleep disorders that have been studied, primarily sleep apnea, narcolepsy, restless legs and insomnia, have consistently shown poorer quality of life than population norms prior to treatment, particularly in those dimensions related to sleep, energy and fatigue. Before treatment scorespes typically are of similar magnitude to those found among individuals with other chronic diseases such as hypertension and chronic obstructive pulmonary disease. With treatment quality of life scores may or may not improve to the level of population norms, suggesting that currently available treatments may not fully reverse the effects of the common sleep disorders.

Workplace violence in Alberta and British Columbia hospitals.

Workplace violence is a significant and widespread public health concern among health care workers, including nurses. With growing awareness of how practice environments influence patient outcomes and the retention of health professionals, it is timely to consider the impact of workplace violence in hospitals. Registered nurses in Alberta and British Columbia, Canada were surveyed on their experiences of violence in the workplace over the last five shifts. Our results suggest that nurses are experiencing many incidences of violence in a given work week, particularly in the emergency, psychiatric, and medical-surgical settings. Most violent acts are perpetrated by patients, but there is also a significant portion of violence and abuse committed by hospital co-workers, particularly emotional abuse and sexual harassment. Our results also indicate that the majority of workplace violence is not reported. We suggest that using the Broken Windows theory might be a useful tool to conceptualize why workplace violence occurs, and that this framework be used to begin to develop new violence prevention policies and strategies.

Do we need stimulation programs as a part of nursing care for patients in "persistent vegetative state"? A conceptual analysis.

The rehabilitative care of persons suffering long-lasting effects of brain injury is a significant challenge for nurses as they are the health professionals who usually spend the most time with them. Historically in Germany, the term "apallic syndrome" has been commonly used for what Plum and Posner (1980) termed the persistent vegetative state. When persons are diagnosed as being in a persistent vegetative state, that is awake but not aware, for more than six months, they seldom receive active therapy except what nurses or families may provide. Stimulation programs have been advocated for these persons, but there is still no reliable evidence as to their effectiveness, and the conceptual basis of the two main types of programs has been poorly understood. The multisensory stimulation approach, such as the Coma Recovery Program or Coma Arousal Therapy, is based on behaviourism with the belief that intensive stimulation provided to all senses will enhance synaptic reinnervation and stimulate the reticular activating system to increase brain tone. In contrast, the sensory regulation approach is based on information processing and mediation of reaction to sensory information with emphasis on enhancing selective attention by regulating the environment rather than providing high degrees of stimulation. What both approaches have in common is the belief that the person in a persistent vegetative state may, at some level, be able to perceive and begin to process information and that external stimulation may enhance that process. Nurses interacting with persons in persistent vegetative state are encouraged to think about how they can regulate sensory input to enhance meaning and facilitate information processing for these persons.

Major depressive disorder and health care costs in multiple sclerosis.

OBJECTIVE: Multiple Sclerosis (MS) is associated with elevated levels of depressive symptoms and an elevated frequency of depressive disorders. Depressive disorders, in general, are associated with substantial direct and indirect economic costs, and have been shown to increase the costs associated with the management of medical conditions in a variety of clinical settings. However, the impact of depressive disorders on costs associated with MS have not been evaluated. The objective of this study was to evaluate this association. METHODS: The Composite International Diagnostic Interview (CIDI) was used to identify subjects with major depressive disorder in a sample who had earlier been selected for a broader economic evaluation of the costs associated with MS. Costs were measured in two ways: retrospectively (by questionnaire covering a 2-year period) and prospectively (using a 6-month diary). The proportion of subjects reporting any costs and the proportion exceeding various cost thresholds were calculated in subjects with and without lifetime major depression. These proportions were compared using exact statistical tests and confidence intervals. Non-parametric (rank sum) tests were used to compare median costs. RESULTS: Of 136 subjects, 31 had a lifetime history of major depression. MS-related expenses evaluated retrospectively (e.g., house and vehicle alterations and purchases) did not differ depending on major depression status. In the prospective analysis, subjects with lifetime major depression were more likely to purchase vitamins, herbs, and naturopathic remedies (p < 0.01) and more likely to incur costs associated with utilization of services provided by alternative practitioners (p = 0.04). Other differences (e.g., in mental health care, medical specialists, general practitioner visits) were not observed. CONCLUSIONS: Contrary to expectation, this study did not find increased direct medical costs in persons with comorbid major depressive disorder and multiple sclerosis. Persons with comorbid MS and (lifetime) major depression did not incur greater costs or utilize more services. The Canadian health care system is guided by principles of universality and is publicly funded and administered, however, the lack of an impact of major depression on utilization may reflect limited access to services. The lack of an association between costs and major depression may or may not be generalizable to health care systems in other countries.

Measurement properties of the calgary sleep apnea quality of life index.

Sleep apnea patients were studied three times prior to and 4 wk after a trial of nasal continuous positive airway pressure to determine the measurement properties of the Calgary Sleep Apnea Quality of Life Index (SAQLI), a disease-specific quality of life questionnaire. All patients completed the Medical Outcome Survey Short Form (SF-36), the Ferrans and Powers Quality of Life Index, and a global assessment of quality of life before and after treatment. The SAQLI was found to have a very high responsiveness index of 1.9 and an effect size of 1.1, which was much greater than the domains of the SF-36 and the FPQLI. There were statistically significant longitudinal correlations (range: 0.24 to 0.54) between the SAQLI and seven of the SF-36 domains in a pattern that was predicted beforehand and which demonstrated the validity of the SAQLI as an evaluative instrument. The SAQLI also had a range of correlations at baseline with the SF-36 (range: 0.36 to 0.71), the Epworth Sleepiness Scale (-0.26), and the FPQLI (0.29 to 0.66), and with a global rating of quality of life (0.61). The SAQLI had a high reliability coefficient of 0.92 on testing and retesting at 2 wk. We conclude that the SAQLI has excellent measurement properties for an evaluative instrument, and beginning evidence of validity as a discriminative index. It measures components of quality of life that are important to sleep apnea patients, and will be an important outcome measure in clinical trials.