A new measure of 'lay' care-giver activities.

The Lay Care-Giving for Adults Receiving Dialysis (LC-GAD) was developed using qualitative and quantitative approaches to systematically measure the breadth and quantity of caregiver activities. The reliability and validity of these evaluations was tested on a sample of 447 Canadian family members and friends who cared for adults on dialysis. Factor analysis was performed independently assessing two components. The first measured the abstract, cognitive work of care-giving (Think-LC-GAD) which included the subscales of appraisal, advocating, coaching, juggling and routinizing. These five factors explained two-thirds of the total variance of the Think-LC-GAD. The second component measured the concrete tasks of care-giving (Task-LC-GAD) which included providing transportation, performing dialysis, personal hygiene, diet, symptom relief, comfort measures and teaching self-care. These seven factors explained seven-eights of the total variance in the Task-LCGAD. Test-retest reliability of these two components had significant correlation coefficients. The validity of the Think- and Task-LC-GADs showed positive correlations between themselves and the perceived burden of care-giving, the trait of conscientiousness and self-reported self-care abilities.

The impact of sex in primary glomerulonephritis.

BACKGROUND: Studies comparing the impact of sex in primary glomerular disease have reported conflicting results. METHODS: We analysed 395 membranous (MGN), 370 focal and segmental glomerulosclerosis (FSGS) and 542 IgA nephropathy patients to determine the impact of the patients' sex on outcome. We assessed initial and follow-up blood pressure, proteinuria, anti-hypertensive and immunosuppressive therapy, rate of renal function decline and survival from renal failure or a 50% decrease in creatinine clearance (combined event). RESULTS: Women accounted for one-third of the cohort. At presentation they were on average 2 years younger than men, and over follow-up received no more immunosuppression or anti-hypertensive agents than their male counterpart. Their mean arterial pressure (MAP) overall was 2 mmHg lower. Proteinuria at presentation and during follow-up in women compared to men was 50% and 30% lower in MGN and FSGS, while no differences were seen in IgA nephropathy. The rate of renal function decline and outcome favoured women over men in MGN (hazard ratios of a combined event of 0.63, 95% CI 0.40-1.00, P = 0.05) and in FSGS (HR 0.67, 95% CI 0.48-0.95, P = 0.02) but not in IgA nephropathy. These differences were not independent of blood pressure and proteinuria, indicating that these sex-dependent risk factors accounted for most of the hazards seen in men. However, the quantitative effect of proteinuria on the rate of progression was distinct and modified by sex in MGN and FSGS with higher proteinuria levels having less impact on progression rate in women. This interaction was independent of blood pressure. CONCLUSIONS: Women have a better outcome than men in MGN and FSGS but not in IgA nephropathy. These benefits are mostly mediated through both lower proteinuria and blood pressure at presentation and throughout follow-up, although females did have an independent advantage at higher levels of proteinuria.

The experience of quarantine for individuals affected by SARS in Toronto.

OBJECTIVE: The purpose of this study was to explore the experience of home quarantine during the severe acute respiratory syndrome (SARS) outbreak in Toronto in 2003. DESIGN: Qualitative descriptive design. SAMPLE: Stratified random sampling techniques were used to generate a list of potential participants, who varied in terms of gender and closeness of exposure to someone with suspected SARS (contact level). Twenty-one individuals participated in the study. MEASUREMENTS: All interviews were audiotaped and followed a semistructured interview guide. Participants were invited to describe their experience of quarantine in detail including their advice for Public Health. RESULTS: The experience followed a trajectory of stages beginning before quarantine and ending after quarantine. Despite individual differences, common themes of uncertainty, isolation, and coping intersected the data. CONCLUSIONS: Public Health has a dual role of monitoring compliance and providing support to people in quarantine. This study has implications for public health policy and practice in planning for future public health emergencies in terms of the information and the resources required to mount an effective response.

Risk perception and compliance with quarantine during the SARS outbreak.

PURPOSE: To explore the experience of being on quarantine for severe acute respiratory syndrome (SARS) with a focus on the relationship between perceived risk of contracting SARS and reported compliance with the quarantine order and protocols. DESIGN: Descriptive, qualitative. METHODS: Semi-structured interviews were conducted with people who had been quarantined during the SARS outbreak in Toronto in 2003. Data analysis was completed using an iterative and collaborative approach of reading and re-reading the transcribed interviews, identifying common themes, and comparing and contrasting the data. FINDINGS: To varying extents, participants wavered between fear and denial about their risk of contracting or spreading SARS. Reported compliance with the actual quarantine order was high. However, within households quarantine protocols were followed unevenly. CONCLUSIONS: This research indicates the need for greater credibility in public health communications to increase compliance with quarantine protocols and to contain outbreaks of new and deadly infectious diseases.

Self-concept as a "BMT patient", illness intrusiveness, and engulfment in allogeneic bone marrow transplant recipients.

OBJECTIVE: The experience of cancer and its treatment by bone marrow transplantation (BMT) can enhance the salience of one's status as a patient in the evolution of self-concept. Illness and the patient role can come to dominate the sense of self, resulting in feelings of hopelessness, helplessness, and distress ("engulfment"). Illness-induced lifestyle disruptions ("illness intrusiveness") introduce adaptive demands, challenging preexisting conceptions of self. Illness intrusiveness and engulfment may interact, leading affected individuals to construe themselves as highly similar to a prototypical "BMT patient". METHODS: Ninety allogeneic BMT outpatients completed the Illness Intrusiveness Ratings Scale, Modified Engulfment Scale, and a semantic differential measure of self-concept as a BMT patient in an interview context. RESULTS: Illness intrusiveness correlated significantly with engulfment (r=.58, P<.0001) and with self-concept as a BMT patient (r=.27, P<.016). Engulfment did not correlate significantly with self-concept as a BMT patient (r=.15). Multiple regression analysis, controlling for relevant covariates, indicated a significant Illness Intrusiveness x Engulfment interaction effect on self-concept as a BMT patient [F(1,84)=4.93, P<.029]. CONCLUSIONS: Self-concept as a BMT patient increases as cancer and its treatment introduce increasing lifestyle disruptions (illness intrusiveness). These effects are amplified when self-experience is dominated by disease and treatment and patients feel helpless, hopeless, and distressed (engulfment).