Barbara Habermann

Deciding to Institutionalize: Why Do Family Members Cease Caregiving at Home?

The primary purpose of this secondary analysis was to identify common themes from the statements of caregivers who ultimately decided to institutionalize their relative with Alzheimer or Parkinson disease. Content analysis of transcripts from caregivers (n = 11) who institutionalized their relative during their participation in a caregiver intervention study was performed. Two categories identified from the caregivers stories were anticipating the inevitable and reaching the limit. The results of the descriptive analysis indicated that 3 to 4 months before institutionalization, caregivers discussed knowing that they would not be able to continue caring for their relative. The most frequent reasons for institutionalization were serious health events. The incidental finding that there were more institutionalizations in the Alzheimer disease participant group than in the Parkinson disease group may indicate that caregiving is more difficult for caregivers in Alzheimer disease than in Parkinson disease. This analysis contributes new and important information about the time interval between caregivers anticipation of the need for alternative care arrangements and the subsequent placement in formal care. Nurses and other healthcare providers should be alert to the fact that when caregivers express anticipation of the need for change in care arrangements, it may be a signal for immediate assessment and referral to appropriate resources for assistance.

Task Difficulty and Life Changes Among Stroke Family Caregivers: Relationship to Depressive Symptoms

OBJECTIVESnTo investigate differences in stroke caregiver task difficulty and life changes based on level of caregiver depressive symptoms, and to estimate probabilities among task difficulty and life change items.nnnDESIGNnDescriptive analysis of baseline data from an ongoing stroke caregiver intervention trial.nnnSETTINGnHospitals and rehabilitation facilities.nnnPARTICIPANTSnCaregivers (N=242; 78.6% women; 47.7% spouses; 71.8% white; mean age, 54.2±12.1y) caring for stroke survivors within 8 weeks of discharge to home.nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnBaseline measures for task difficulty (Oberst Caregiving Burden Scale) and life changes (Bakas Caregiving Outcomes Scale) were compared based on level of depressive symptoms (Patient Health Questionnaire-9 [PHQ-9] scores <5 means no depressive symptoms; n=126; PHQ-9 scores ≥5 means mild to severe depressive symptoms, n=116). Mean scores were analyzed using general linear modeling, with item analyses using logistic regression and the Benjamini-Hochberg method to control type I error inflation.nnnRESULTSnCaregivers with mild to severe depressive symptoms have greater difficulty with tasks and worse life changes than those with no depressive symptoms (P<.001). Odds ratios were highest for the task of arranging care while away and for negative life changes (eg, addressing self-esteem, coping with stress, physical health).nnnCONCLUSIONSnFindings underscore the importance of depressive symptom screening for stroke caregivers during or shortly after discharge. Assisting caregivers with depressive symptoms to arrange for respite care and addressing negative physical and psychological changes may be priority areas for future interventions.

Research Coordinators' Experiences With Scientific Misconduct and Research Integrity

Background: Most reports of scientific misconduct have been focused on principal investigators and other scientists (e.g., biostatisticians) involved in the research enterprise. However, by virtue of their position, research coordinators are often closest to the research field where much of misconduct occurs. Objective: The purpose of this study was to describe research coordinators experiences with scientific misconduct in their clinical environment. Design: The descriptive design was embedded in a larger cross-sectional national survey. A total of 266 respondents, predominately registered nurses, who answered yes to having firsthand knowledge of scientific misconduct in the past year, provided open-ended question responses. Methods: Content analysis was conducted by the research team, ensuring agreement of core categories and subcategories of misconduct. Findings: Research coordinators most commonly learned about misconduct via firsthand witness of the event, with the principal investigator being the person most commonly identified as the responsible party. Five major categories of misconduct were identified: protocol violations, consent violations, fabrication, falsification, and financial conflict of interest. In 70% of cases, the misconduct was reported. In most instances where misconduct was reported, some action was taken. However, in approximately 14% of cases, no action or investigation ensued; in 6.5% of cases, the coordinator was fired or he or she resigned. Conclusions: This study demonstrates the need to expand definitions of scientific misconduct beyond fabrication, falsification, and plagiarism to include other practices. The importance of the ethical climate in the institution in ensuring a safe environment to report and an environment where evidence is reviewed cannot be overlooked.

A review of health-related quality of life in adult traumatic brain injury survivors in the context of combat veterans.

Health-related quality of life (HRQOL) research in traumatic brain injury (TBI) populations is beginning to emerge in the literature. Because rehabilitation and reintegration issues are complex with TBI, especially with new combat veterans, it is critical that future HRQOL research be designed to consider these issues. Utilizing explicit definitions and a conceptual model of HRQOL can provide researchers with a holistic base on which to build interventions for successful patient outcomes. The conceptual model of HRQOL of C.E. Ferrans, J.J. Zerwic, J.E. Wilbur, and J.L. Larson (2005) is an exemplar model that presents clear definitions and encompasses domains of HRQOL relevant to TBI survivors and their families. This review was organized utilizing the model of HRQOL of Ferrans et al. The objective of this review was to identify gaps in current knowledge of HRQOL and TBI. These findings were then used to develop recommendations for future research with combat veterans who have sustained a TBI.

Challenges and strategies of medication adherence in Parkinson's disease: A qualitative study

Little is known about strategies used by people with Parkinsons disease (PD) to facilitate medication adherence in the U.S. The purpose of this study was to describe challenges in adherence to medication regimens and to identify strategies used to facilitate adherence to medication regimens. A qualitative research design was used to interview sixteen community-dwelling people with PD and five caregivers. Data analysis was performed using content analysis. The majority of the participants (81.3%) reported decreased adherence to medication regimens. Seven themes emerged from the data. The main challenges of medication adherence included medication responses, cost of medications, and forgetfulness. Strategies used to facilitate adherence to medication regimens included seeking knowledge about antiparkinsonian medications, seeking advice from family and friends, use of devices, and use of reminders. These findings may be important in formulating interventions to improve adherence to medication regimens for people living with PD.

Needs and concerns of male combat Veterans with mild traumatic brain injury

Traumatic brain injury (TBI) has emerged as a major cause of morbidity among U.S. servicemembers who have served in Iraq and Afghanistan. Even mild TBI (mTBI) can result in cognitive impairments that can affect the community reintegration of Veterans postdeployment. The purpose of this study was to explore the needs and concerns of combat Veterans with mTBI to provide support for an mTBI-specific conceptual model (Conceptual Model in the Context of mTBI) derived from Ferrans et al.s health-related quality of life model and the TBI literature. Content analysis of qualitative interview data was conducted using a thematic matrix with a predetermined code list. Data saturation was achieved after interviews with eight male Veterans. Six key categories and predominant themes emerged: cognitive impairments, physical symptoms, emotions and behaviors, instrumental activities of daily living, interpersonal interactions, and community reintegration. Findings provide preliminary support for a new, context-specific conceptual model that has the potential to identify areas for future interventions to enhance community reintegration of combat Veterans with mTBI.

Emergence and evolution of social self-management of Parkinson’s disease: study protocol for a 3-year prospective cohort study

BackgroundParkinson’s disease affects facial, vocal and trunk muscles. As symptoms progress, facial expression becomes masked, limiting the person’s ability to communicate emotions and intentions to others. As people with the disease live and reside in their homes longer, the burden of caregiving is unmitigated by social and emotional rewards provided by an expressive individual. Little is known about how adults living with Parkinson’s disease manage their social lives and how an inability to be emotionally expressive can affect social connections and health. Because social networks have been shown to be crucial to the overall well-being of people living with chronic diseases, research is needed on how expressive capacity affects life trajectories and health.Methods/DesignThe overall objective is to understand the emergence and evolution of the trajectories of the self-management of the social lives of people living with Parkinson’s disease. The central hypothesis is that expressive capacity predicts systematic change in the pattern of social self-management and quality of life outcomes. The specific aims of this 3-year longitudinal study of 120 people with the disease and a maximum of 120 care partners are: 1) characterize social self-management trajectories over a 3-year period; 2) estimate the degree to which expressive nonverbal capacity predicts the trajectory; and 3) determine the moderating effect of gender on the association between expressive capacity and change in social self-management. Each participant will be assessed 14 times to detect rapid and non-linear changes in social participation and management of social activities; social network; and social comfort, general health and well-being.DiscussionThis project will provide evidence to guide the development of interventions for supporting social integration of those living with Parkinson’s disease, thus leading to improved overall health. It focuses on the novel construct of social self-management and known factors—expressive capacity and gender—that contribute to stigmatization. The repeated measures design detects triggers of rapid changes in social and health outcomes.

Research involving participants with chronic diseases: overcoming recruitment obstacles.

Chronic diseases are rampant in the United States and account for the majority of healthcare costs in this country. The implementation of research studies involving members of chronic disease populations is necessary to the development of interventions aimed at preventing these conditions and improving outcomes. The implementation of such studies hinges on the successful recruitment of an adequate number of study participants. Difficulties surrounding participant recruitment in behavioral studies are well documented and present a barrier to researchers aiming to conduct research involving persons with chronic diseases. Common recruitment challenges associated with recruiting chronic disease participants are reviewed, and a highly effective, alternative recruitment strategy used by the authors in a qualitative study involving persons with epilepsy is discussed in detail.

Telephone Assessment and Skill-Building Kit for Stroke Caregivers: A Randomized Controlled Clinical Trial

Background and Purpose— There are few evidence-based programs for stroke family caregivers postdischarge. The purpose of this study was to evaluate efficacy of the Telephone Assessment and Skill-Building Kit (TASK II), a nurse-led intervention enabling caregivers to build skills based on assessment of their own needs. Methods— A total of 254 stroke caregivers (primarily female TASK II/information, support, and referral 78.0%/78.6%; white 70.7%/72.1%; about half spouses 48.4%/46.6%) were randomized to the TASK II intervention (n=123) or to an information, support, and referral group (n=131). Both groups received 8 weekly telephone sessions, with a booster at 12 weeks. General linear models with repeated measures tested efficacy, controlling for patient hospital days and call minutes. Prespecified 8-week primary outcomes were depressive symptoms (with Patient Health Questionnaire Depressive Symptom Scale PHQ-9 ≥5), life changes, and unhealthy days. Results— Among caregivers with baseline PHQ-9 ≥5, those randomized to the TASK II intervention had a greater reduction in depressive symptoms from baseline to 8, 24, and 52 weeks and greater improvement in life changes from baseline to 12 weeks compared with the information, support, and referral group (P<0.05); but not found for the total sample. Although not sustained at 12, 24, or 52 weeks, caregivers randomized to the TASK II intervention had a relatively greater reduction in unhealthy days from baseline to 8 weeks (P<0.05). Conclusions— The TASK II intervention reduced depressive symptoms and improved life changes for caregivers with mild to severe depressive symptoms. The TASK II intervention reduced unhealthy days for the total sample, although not sustained over the long term. Clinical Trial Registration— URL: https://www.clinicaltrials.gov. Unique identifier: NCT01275495.

Nursing Research in Parkinson's Disease From 2006 to 2015: A Systematic Review.

Most people with Parkinson’s disease (PD) reside in their homes with their family members. Nurses are in a good position to partner with people with PD and their family members for better self-management of the disease and improved quality of life. The purpose of this systematic review was to assess the state of the science of nursing research related to PD during the 10-year period, 2006 to 2015. A total of 27 studies were included in this review. Family caregiving was the most studied topic, followed by symptom management/medication adherence, quality of life, end-of-life/palliative care, and functional status/improving function. Recommendations for future studies in PD include (a) developing and testing interventions based on theoretical models in the areas of self-management, symptom management, and function improvement in people with PD and for caregivers caring for people with advanced stage PD, and (b) building programs of research with interprofessional teams.