Psychometric properties of the Patient's Perception of Life on Hemodialysis Scale.

BACKGROUND AND PURPOSE: Hemodialysis (HD) is the main form of renal replacement therapy for many patients with end-stage renal disease. The purpose of this research is to assess reliability and validity of the Patient's Perception of Hemodialysis Scale. METHODS: Using a cross-sectional design and a convenient sample (n = 236), psychometric properties of the PPHS were examined. Validity was assessed using factor analysis and Pearson's correlation. Reliability was determined using Cronbach's alpha and test-retest stability (n = 30). RESULTS: Validity and reliability was supported. CONCLUSION: Examination of the PPHS provides evidence that it is a valid and reliable instrument for measuring disease-specific concerns with the HD patients, assessing how people experience life, and identifying ways in which people interpret the meaning of their physical and psychosocial health and adaptation to life on HD.

Qualitative research in clinical epidemiology.

This chapter has been written to specifically address the usefulness of qualitative research for the practice of clinical epidemiology. The methods of grounded theory to facilitate understanding of human behavior and construction of monitoring scales for use in quantitative studies are discussed. In end-stage renal disease patients receiving long-term hemodialysis, a qualitative study used grounded theory to generate a multilayered classification system, which culminated in a substantive theory on living with end-stage renal disease and hemodialysis. The qualitative data base was re-visited for the purpose of scale development and led to the Patient Perception of Hemodialysis Scale (PPHS). The quantitative study confirmed that the PPHS was psychometrically valid and reliable and supported the major premises of the substantive theory.

Responsiveness of the patient's perception of hemodialysis scale.

OBJECTIVES: To assess hemodialysis (HD) patients' physical health, social supports, psychosocial well-being and the interrelationship among patients' experiences, demographics, illness characteristics, and biochemical indicators of health. To determine responsiveness of the Patient's Perception of Hemodialysis Scale (PPHS) to change in health status and critical events. METHODS: Using a longitudinal design HD patients (n = 85) were assessed at two time periods. Data analysis included measures of central tendency and tests of difference to assess interrelationships and responsiveness of the PPHS. RESULTS: There were no significant changes in PPHS's subscales scores between measurement times or groups based on demographic variables. Significant differences were found in the number of co-morbid illnesses, illness severity, albumin, and urea reduction. The Psychosocial Distress subscale varied significantly in relation to time on HD, reason for admission to hospital, and number of admissions. Physical Health scores were significantly different for subgroups divided by illness, illness severity, number of illnesses, age, albumin and reason for admission. PPHS subscale mean scores were responsive to positive events in the predicted direction most of the time and appeared to have had more of an effect on the PPHS scores than negative critical events. CONCLUSION: The PPHS is responsive to a change in physical health and positive critical events, but results were unsubstantiated for patient's reaction to negative critical events. The PPHS is reliable, valid, and responsive to physical changes and positive critical events. This instrument offers health care professionals a viable method for assessing important factors capable of predicting quality outcomes.

Development and preliminary testing of the psychosocial adjustment to hereditary diseases scale.

BACKGROUND: The presence of Lynch syndrome (LS) can bring a lifetime of uncertainty to an entire family as members adjust to living with a high lifetime cancer risk. The research base on how individuals and families adjust to genetic-linked diseases following predictive genetic testing has increased our understanding of short-term impacts but gaps continue to exist in knowledge of important factors that facilitate or impede long-term adjustment. The failure of existing scales to detect psychosocial adjustment challenges in this population has led researchers to question the adequate sensitivity of these instruments. Furthermore, we have limited insight into the role of the family in promoting adjustment. METHODS: The purpose of this study was to develop and initially validate the Psychosocial Adjustment to Hereditary Diseases (PAHD) scale. This scale consists of two subscales, the Burden of Knowing (BK) and Family Connectedness (FC). Items for the two subscales were generated from a qualitative data base and tested in a sample of 243 participants from families with LS. RESULTS: The Multitrait/Multi-Item Analysis Program-Revised (MAP-R) was used to evaluate the psychometric properties of the PAHD. The findings support the convergent and discriminant validity of the subscales. Construct validity was confirmed by factor analysis and Cronbach's alpha supported a strong internal consistency for BK (0.83) and FC (0.84). CONCLUSION: Preliminary testing suggests that the PAHD is a psychometrically sound scale capable of assessing psychosocial adjustment. We conclude that the PAHD may be a valuable monitoring tool to identify individuals and families who may require therapeutic interventions.

Lynch syndrome: barriers to and facilitators of screening and disease management.

BACKGROUND: Lynch syndrome is a hereditary cancer with confirmed carriers at high risk for colorectal (CRC) and extracolonic cancers. The purpose of the current study was to develop a greater understanding of the factors influencing decisions about disease management post-genetic testing. METHODS: The study used a grounded theory approach to data collection and analysis as part of a multiphase project examining the psychosocial and behavioral impact of predictive DNA testing for Lynch syndrome. Individual and small group interviews were conducted with individuals from 10 families with the MSH2 intron 5 splice site mutation or exon 8 deletion. The data from confirmed carriers (n = 23) were subjected to re-analysis to identify key barriers to and/or facilitators of screening and disease management. RESULTS: Thematic analysis identified personal, health care provider and health care system factors as dominant barriers to and/or facilitators of managing Lynch syndrome. Person-centered factors reflect risk perceptions and decision-making, and enduring screening/disease management. The perceived knowledge and clinical management skills of health care providers also influenced participation in recommended protocols. The health care system barriers/facilitators are defined in terms of continuity of care and coordination of services among providers. CONCLUSIONS: Individuals with Lynch syndrome often encounter multiple barriers to and facilitators of disease management that go beyond the individual to the provider and health care system levels. The current organization and implementation of health care services are inadequate. A coordinated system of local services capable of providing integrated, efficient health care and follow-up, populated by providers with knowledge of hereditary cancer, is necessary to maintain optimal health.

Predictors of perceived health care quality for registered nurses during and after health care reform.

BACKGROUND: Limited research has focused on the predictive nature of organizational culture and trust on registered nurses' perceived health care quality in reformed health care systems. PURPOSES: The purpose of this article was to investigate nurses' perceptions of organizational culture factors, trust in employer, and perceived health care quality during and 5 years after major organizational reform in the acute care setting and to test a model linking culture to perceived health care quality. METHODOLOGY: Survey data collected from two samples of nurses (N = 222,343) during and 5 years after major organizational reform in the acute care setting of one Canadian province were analyzed, and an exploratory model linking aspects of culture, trust, and quality was tested. FINDINGS: For both periods, most variable scores were in the low range and depicted moderately positive intercorrelations with each other. Support for the proposed model was mixed. Select culture variables predicted health care quality at both periods, but trust emerged as a significant predictor in 2000 only. The findings support the negative impact of system transformation on nurses and the link between culture and health care quality. PRACTICE IMPLICATIONS: The study findings suggest that managers and policy makers must develop and implement supportive and nurturing strategies that will enhance the organizational culture (emotional climate, collaborative relations), which should result in more positive perceptions of health care quality. However, further research is required to gain a better understanding of the relationships among trust, organizational culture, and perceptions of health care quality and what implications this may or may not have for nursing practice.

Qualitative research in clinical epidemiology.

This chapter has been written to specifically address the usefulness of qualitative research for the practice of clinical epidemiology. The methods of grounded theory to facilitate understanding of human behavior and construction of monitoring scales for use in quantitative studies are discussed. In end-stage renal disease patients receiving long-term hemodialysis, a qualitative study used grounded theory to generate a multilayered classification system, which culminated in a substantive theory on living with end-stage renal disease and hemodialysis. The qualitative database was revisited for the purpose of scale development and led to the Patient Perception of Hemodialysis Scale (PPHS). The quantitative study confirmed that the PPHS was psychometrically valid and reliable and supported the major premises of the substantive theory.

Predictors of registered nurses' organizational commitment and intent to stay.

BACKGROUND: Health care reform has significantly altered employment relations. Research findings suggest that the presence or absence of supportive work environments helps explain the differences observed in employee attitudes and turnover intentions. PURPOSES: The purposes of this study were to examine frontline registered nurses' (RNs') perceptions of organizational culture and attitudes and behaviors and test a model linking culture to outcome (organizational commitment and intent to stay). METHODOLOGY: A non-experimental predictive survey design was used to test the model in a sample (N = 343) of acute care RNs employed in one Canadian province. Data were collected with the following scales: Emotional Climate, Practice Issues, Collaborative Relations, Psychological Contract Violation, General Job Satisfaction, Organizational Commitment Questionnaire, and Intent to Stay. FINDINGS: The response rate was 29.4%. Most respondents were middle aged and diploma prepared, were in their current positions for 5 years or more, had 10 or more years of nursing experience, and worked full time. Despite moderate levels of job satisfaction, RNs held negative perceptions of culture (emotional climate, practice-related issues, and collaborative relations), trust, and commitment and were unlikely to stay with current employers. Structural equation modeling provided support for the impact of culture, trust, and satisfaction on commitment and partial support for intent to stay, explaining 45 and 31% of the variance, respectively. PRACTICE IMPLICATIONS: The development and implementation of policies and interventions aimed at creating more supportive work environments and greater trust in employers and job satisfaction have merit. The most obvious benefit from such strategic interventions is the potential for improving RNs' organizational commitment and reducing turnover intentions.