Barbara Habermann

Day-to-day demands of Parkinson's disease.

This interpretive study explored the experience of having Parkinsons disease in middle life. The researcher examined the day-to-day demands experienced by 16 people (9 men and 7 women), ages 42-59 years, who had been diagnosed with Parkinson s disease for a range of 1-16 years. Demands directly attributable to the illness included acknowledging symptoms and seeking help, balancing emotional responses, dealing with a changing body, gaining formal and practical knowledge, and dealing with unpredictability. The illness also created demands related to changing roles, sense of identity, and relationships. This study advances understanding of the dijficulties and challenges experienced by those who live with Parkinsons disease and has implications for nursing practice with this population.

Influence of Employment Characteristics on Postpartum Mothers' Health

SUMMARY Background/Purpose: Over half of mothers with infants under one year are employed. This study explored the work experiences of women who returned to employment during the first year and the relationship of employment characteristics to maternal health. Design/Methods: Longitudinal, repeated measures during pregnancy and 1, 4, 8, and 12 months postpartum. Data on employment characteristics and health status gathered between 1990–95 by questionnaire from 149 employed, partnered women residing in a large urban area in the northwestern United States. Results: Work-family interference increased significantly between pregnancy and each postpartum occasion (p < .001). Between 19–34% of the variance in health status at each measurement occasion was explained by employment characteristics. Work-family interference consistently contributed to the variance in health status. Conclusions: New models are needed to further understand the complex interplay of work and family lives.

Scientific misconduct from the perspective of research coordinators: a national survey

Objective: To report results from a national survey of coordinators and managers of clinical research studies in the US on their perceptions of and experiences with scientific misconduct. Methods: Data were collected using the Scientific Misconduct Questionnaire-Revised. Eligible responses were received from 1645 of 5302 (31%) surveys sent to members of the Association of Clinical Research Professionals and to subscribers of Research Practitioner, published by the Center for Clinical Research Practice, between February 2004 and January 2005. Findings: Overall, the perceived frequency of misconduct was low. Differences were noted between workplaces with regard to perceived pressures on investigators and research coordinators, and on the effectiveness of the regulatory environment in reducing misconduct. First-hand experience with an incident of misconduct was reported by 18% of respondents. Those with first-hand knowledge of misconduct were more likely to report working in an academic medical setting, and to report that a typical research coordinator would probably do nothing if aware that a principal investigator or research staff member was involved in an incident of misconduct. Conclusion: These findings expand the knowledge on scientific misconduct by adding new information from the perspective of research coordinators. The findings provide some data supporting the influence of workplace climate on misconduct and also on the perceived effectiveness of institutional policies to reduce scientific misconduct.

Caring for Family with Alzheimer's Disease and Parkinson's Disease

A convenience sample of 40 family members caring for an individual with either Alzheimers disease (AD) or Parkinsons disease (PD) completed the Caregiver Assistance Measure (CAM) to identify the types of assistance that would be most helpful in caring for a family member at home. The CAM measures three categories or types of assistance: care knowledge and skills, self-care, and resource acquisition. Caregivers also completed open-ended questions about the difficulties and the satisfactions of caregiving. The PD and AD caregivers agreed on the importance of 75% of the assistance items on the CAM. In addition, both groups of caregivers identified issues related to care knowledge and skills and selfcare as the most difficult aspects of caregiving. These findings suggest many caregiver needs may be common across chronic illness populations and provide initial support for the development and testing of standardized interventions for caregivers.

The Scientific Misconduct Questionnaire—Revised (SMQ-R): Validation and Psychometric Testing

Purpose: The overall purposes of this article are to report the development of a survey instrument, Scientific Misconduct Questionnaire-Revised (SMQ-R) that elicits the perceptions of research coordinators managing clinical trials about the various aspects of scientific misconduct and to present the psychometric analyses for the SMQ-R. Methods: A panel of five researchers and research coordinators reviewed the original SMQ (Rankin and Esteeves, 1997) and suggested an additional 42 items based on the review of the literature and their own experiences in research. The SMQ-Revised (SMQ-R) consists of 68 closed-choice items in six sections and one section with 12 open-ended questions. The SMQ-R was sent to 5302 persons who were members of the Association for Clinical Research Professionals (ACRP) or subscribers to Research Practitioner, published by the Center for Clinical Research Practice (CCRP). Findings: Internal consistency of subscales was assessed with Cronbachs alpha and ranged from .83 to .84. Confirmatory factor analysis was used to test construct validity of the instrument subscales. The factor structure was assessed with the principal factors method, using the squared multiple correlations as initial communality estimates followed by varimax (orthogonal) or biquartimax (oblique) rotations. Analyses revealed five distinct factors among three subscales. Construct validity for the SMQ-R was also assessed by testing hypothesized relationships using the known groups approach. Conclusion: The current effort demonstrated the usefulness of the SMQ-R in obtaining information from a national sample of experienced research coordinators about their perceptions of the prevalence of different types of scientific misconduct and of factors that influence the occurrence of misconduct. The psychometric evaluation of the SMQ-R suggests good internal consistency for most subscales and suggests adequate construct validity of the instrument as a whole. The analyses also suggest that further refinement of the instrument for future studies is warranted.

Continuity challenges of Parkinson's disease in middle life.

This interpretive study explored the experience of having Parkinsons disease (PD) in middle life. The researcher examined how persons with PD (N = 16) coped with challenges to their sense of self and a future of limited horizons. Participants were ages 42-59 years (mean age = 48 years) and had been diagnosed for a range of 1-16 years. In-depth interviews, focusing on day to day experiences, coping episodes and future hopes and concerns, were conducted on 3 occasions. Findings indicated that participants maintained an intact identity by sustaining a sense of continuity with their pre-Parkinsons self. They dealt with the progressive nature of their illness of by keeping open a range of possibilities for the future. This study advances understanding of the challenges experienced by those with PD and suggests ways in which nurses may be able to be more effective in supporting individuals who are living with this disease.

Caring for parents with neurodegenerative disease: a qualitative description.

Purpose/Objective: The objective of this study was to explore the positive aspects experienced by adult children in providing care to their parent who has either Parkinson’s or Alzheimer’s disease. Design: A qualitative descriptive approach was used to analyze audiotaped in-depth semistructured interviews that were conducted with 34 adult children who were primary caregivers as part of a larger randomized clinical trial. Setting: Individual interviews were conducted by trained research assistants in the caregiver’s home. Sample: Thirty-four adult children caregivers who were primary caregivers for their respective 34 parents. Seventy-six percent (n = 26) of the caregivers were caring for a parent with Alzheimer’s disease. Twenty-four percent (n = 8) were caring for a parent with Parkinson’s disease. Eighty-two percent were adult daughters. Mean age of the caregiver was 52 years, and the mean age of the parent was 81 years. Fifty-three percent of caregivers were white, and 47% were black. Data Analysis: A conventional content analysis was performed to summarize themes. Findings: Results indicated that most caregivers had positive experiences. Three relationship-centered themes were identified: spending and enjoying time together, appreciating each other and becoming closer, and giving back care. A small number of caregivers (n = 6) could not identify positive experiences. Conclusion/Implications: Caregivers who had positive experiences in caregiving expressed fewer feelings of being overwhelmed or distressed by their situations. Further study is needed on caregivers who do not experience positive aspects in caring for a parent, and these caregivers potentially may be a group that warrants further intervention by advanced practice nurses.

The influence of spirituality on family management of Parkinson's disease

This study examined the role of spirituality in defining and managing Parkinsons disease (PD) for people with PD and their families. A content-analysis approach was used to interpret and analyze individual and family interviews from 27 families. Participants primarily were Caucasian dyads representing different geographic areas and socioeconomic statuses. Findings revealed that the ways persons with PD and their families managed the chronic illness were influenced by belief and faith, purpose and meaning, prayer, the support of family and friends, and hope. Healthcare providers need to understand the role of spirituality in influencing ways that persons with PD and their families define and manage the disease and to support people in their efforts.

Ready or Not: Planning for Health Declines in Couples with Advanced Multiple Sclerosis

ABSTRACT This study explored how couples living with advanced multiple sclerosis approach planning for health changes together. A qualitative descriptive approach was used, with multiple in-depth interviews. Ten couples were interviewed, consisting of 10 participants with advanced multiple sclerosis and their 10 respective spouses. Interviews were transcribed verbatim and analyzed for themes related to dyad decision making. Particular focus was paid to how or if couples planned for worsening health, including advance care planning. Characteristics of couples who had made plans for worsening health included a desire to make decisions ahead of time, work in a healthcare field, and a life-threatening health event for the care-giving partner. Characteristics of couples who had not discussed plans for worsening health included diminished quality of communication between partners and hoping for a cure. Findings suggest that providers may need to assess quality of communication between partners, because strained communication may negatively affect the process of informed healthcare decision making.

Hiring the right people and management of research staff

Research grant or project management requires substantial skills and experiences of the principal investigator and the investigative team. Hiring the right people for appropriate positions and ongoing staff training and management are critical keys to successful conduct of the research projects. Necessary activities include the clear identification of positions and qualifications, recruiting the best, and hiring, training, and retaining the right staff. Tips and strategies for problem solving during each step are included.