EXPERIENCING POSITIVE ASPECTS IN BEING A SPOUSAL CAREGIVER IN PARKINSON’S AND ALZHEIMER’S DISEASE

poster abstractAim: A primary aim of this study was to describe caregiver appraisal and coping strategies in caregivers of family members with Parkinson’s (PD) or Alzheimer’s disease (AD). This study was part of a larger randomized clinical trial of a skill building intervention for caregivers. Method: To achieve this aim, 84 spousal caregivers who were consecutively enrolled in the study were interviewed at baseline. The interview focused on specific caregiving situations where the caregiver was asked to describe a positive or meaningful caregiving event. Interviews were semi-structured and included probes to elicit the full narrative of the events. Interviews were transcribed verbatim and analyzed by the research team utilizing a thematic analysis. Results: Of the 84 caregivers, 48% (N=44) were PD caregivers and 52% (N=40) were AD caregivers. Male caregivers comprised 17% (N=14) of the sample. The mean age of the caregivers was 63.7 years (SD ±26.8) with the mean age of their spouses being 75.5 years (SD ± 7.2). The core theme identified was “time spent together”. Within this core theme were several relational sub-themes including turning back the hands of time, being able to rely on the caregiver, and experiencing moments of joy when the family member can participate. Conclusions: Differences existed in both how easily caregivers could identify positive or meaningful aspects to caregiving and how many aspects they could identify. However, the majority of caregivers were able to identify a positive or a meaningful aspect to spousal caregiving. Future intervention studies with spousal caregivers might consider developing targeted interventions based on positive meaningful caregiving situations and building on this relational aspect

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

Experiences of Nursing Students in Caring for Patients with Behaviors Suggestive of Low Health Literacy: A Qualitative Analysis

Background: Health literacy is the ability to obtain, process, and understand health information in order to take appropriate health actions. Low health literacy is associated with poor health knowledge and self-management of chronic disease, inadequate utilization of preventive services, and increased hospital admissions. The American Association of Colleges of Nursing recommends that nursing schools incorporate health literacy into curricula. Little, however, has been reported about what nursing students have learned and done about health literacy in clinical. This study explored undergraduate nursing students’ experiences in caring for patients with low health literacy. Methods: A qualitative content analysis method was used to analyze 59 narratives written by undergraduate nursing students. Results: Three themes were uncovered: sensing low health literacy by behavioral cues, promoting health literacy with multiple strategies, and closing the health information loop with positive and negative feelings. Noncompliance, knowledge deficits, anxiety/concerns, and language barriers were behavioral cues indicating low health literacy, and these cues triggered the students’ information support actions. Students promoted patient understanding and utilization of information by using many interventions: simplifying information, reinforcing information, giving written information, and demonstration/teach-back. Many students felt good about being able to help increase knowledge and self-care skills of their patients. Some were frustrated because they were unable to promote lifestyle modifications of the patients with complicated chronic diseases. Students, however, did not employ standardized tools to assess the health literacy of the patient or the patient’s knowledge of specific diseases, nor did they assess readability of patient education materials or provide patient empowerment interventions to encourage active information-seeking and participation in self-care. Conclusions: Nursing students could identify behavioral cues suggestive of low health literacy and provide solutions to increase the patient’s health literacy. To enhance student practice, nursing curricula, however, can integrate relevant health literacy assessment tools and empowerment interventions

Barriers and facilitators to salivary rapid HIV testing in African Americans

OBJECTIVE: To identify barriers and facilitators of voluntary Salivary Rapid HIV testing decisions (SRT) among African Americans in order to develop interventions to improve HIV testing rates and care entry if HIV positive. METHODS: This first phase of a two-phase study used a Comprehensive Health Seeking and Coping Paradigm-based semi-structured interview guide (SSIG) to conduct 10 focus groups of 2-5 African Americans recruited from a large STI Clinic. Content analysis of the focus group transcripts was done using line-by-line analysis, and reviewing sentences and phrases for patterns or core meanings. Patterns were refined and synthesized into descriptive statements. An iterative process of comparison was used to further analyze the data, moving between individual elements of the text specific to participant responses. Meanings that were implicit rather than explicit in the text; and of one whole account with another were used to identify overall patterns of meaning. RESULTS: Of the 38 African American adults recruited, 16 were female with ages 18-49 (M =23) and 22 were male with ages 18-49 (M=29.5). All self identified as heterosexual with most reporting low income and no health insurance. Within the context of barriers and facilitators to SRT, eight themes emerged: Familiarity, Stigma, Fear, Access, Immediacy, Ease, Degree of Responsibility, and Trust. Each theme was not seen exclusively as a barrier or facilitator but was interpreted to be one or the other depending on the aspect of HIV testing being discussed. A gender sub analysis revealed themes of health maintenance and illness management for females and males respectively. CONCLUSIONS: Since there has not been an increase in HIV testing rates in AA’s even with newer SRT technology. The findings support the need to assess barriers and facilitators to testing decisions in order to increase testing rates. The themes also suggest the need for tailored community based interventions that decrease fear, stigma and increase trust in testing methods and providers for HIV and STI screening

Task difficulty and life changes among stroke family caregivers: relationship to depressive symptoms

OBJECTIVES: To 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. DESIGN: Descriptive analysis of baseline data from an ongoing stroke caregiver intervention trial. SETTING: Hospitals and rehabilitation facilities. PARTICIPANTS: Caregivers (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. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Baseline 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. RESULTS: Caregivers 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). CONCLUSIONS: Findings 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

How to Reach the Hidden: Strategies for Recruiting HIV-Positive Transgender Women

Purpose: Transgender women (TGW) or biological men, who identify as women, are at high risk for HIV infection and are less likely to enter care. TGW are among the most marginalized of all sexual and gender minority populations, and are therefore at greater risk of violence and discrimination. Further, HIV remains one of the most stigmatizing illnesses in the US and disclosure of one’s HIV status could lead to negative health and social outcomes. Due to social marginalization and stigma related to their gender identity and HIV status, this population is often hard to reach and is underrepresented in healthcare utilization research. Theoretical/conceptual framework: The Network Episode Model is a service utilization model that has been used for exploring the patterns and pathways through which hard to reach populations access care for medical problems and was used to inform this study. Sample: Twenty to twenty-five HIV-positive TGW who accessed care at least once within one year prior to the start of the study. Method and results: Prior to data collection the researcher embedded herself in the community by networking and consulting with community gatekeepers, attending cultural celebrations and events, and volunteering at community agencies that served the transgender population. Using purposive and snowball sampling strategies, participants were then recruited from community- based agencies that serve TGW and from venues where TGW were known to socialize. Local and state health departments assisted with recruitment by identifying eligible participants through care coordination and HIV services databases and direct mailings of recruitment fliers. To protect against the loss of confidentiality, private one-on-one interviews were conducted, a waiver of written informed consent was obtained, and aliases were used to collect and report results. These strategies were selected because they have the highest success rate of recruiting hard to reach populations, provided the greatest protection against loss of privacy, and build on network ties through which TGW socialize and seek formal and informal care. Conclusions: Outcomes of these recruitment strategies and lessons learned in recruiting members of this highly marginalized group will be discussed

Tracking Patterns of Needs During a Telephone Follow-up Program for Family Caregivers of Persons with Stroke

Purpose Programs that address stroke family caregiver needs and skill-building are recommended based on the literature and patient care guidelines for stroke rehabilitation. The purpose of this study was to explore patterns of perceived needs and skill-building during a stroke caregiver intervention program. Method Descriptive statistics were used to analyze data from 123 stroke caregivers enrolled in the intervention group of a randomized controlled clinical trial. Caregivers received 8 weekly telephone sessions, with a booster session a month later. At each session, the Caregiver Needs and Concerns Checklist (CNCC) was used to identify and prioritize current needs that were then addressed through skill-building strategies. Results Perceived needs changed over time. Information about stroke was the highest priority need during Session 1. Managing survivor emotions and behaviors was the highest priority for Sessions 2 through 4. Caregivers generally waited until Sessions 5 through 9 to address their own emotional and physical health needs. Physical and instrumental care needs were relatively low but stable across all 9 sessions. Skill-building was consistently high, though it peaked during Sessions 2 and 3. Conclusions Tracking patterns of needs and skill-building suggest appropriate timing for targeting different types of family caregiver support during stroke rehabilitation

Preliminary Efficacy of a Stroke Caregiver Intervention Program for Reducing Depressive Symptoms

poster abstractBackground and Purpose: Stroke caregivers who lack skills because of unmet needs are at increased risk for depressive symptoms; which can impede rehabilitation of the survivor and increase the survivor’s risk for costly, long-term institutionalization. The Telephone Assessment and Skill-Building Kit (TASK) is an 8-week follow-up program based on individualized assessment of caregiver needs. The purpose of this study was to explore preliminary efficacy of the TASK program for improving stroke caregiver depressive symptoms. Methods: A subgroup of 15 caregivers who screened positive for mild to severe depressive symptoms at baseline (PHQ-9 > 5) were randomized to the TASK program (n=8) or an attention control group (n=7). Data were analyzed using Univariate ANCOVA, controlling for baseline scores and number of minutes spent with the nurse for each timepoint (4, 8, and 12 weeks after baseline). Partial ƞ2 was used to estimate effect sizes (.25 large). Results: Although not statistically significant because of the small sample size, medium to large improvements based on effect sizes were found in depressive symptoms for the TASK group relative to the control group at 4 weeks [F(1,11) = 4.15, p=.07, ƞ2=.27], 8 weeks [F(1,11) = 1.66, p=.22, ƞ2=.13], and 12 weeks after baseline [F(1,11) = 1.47, p=.25, ƞ2 =.12]. Adjusted PHQ-9 means for the TASK group at 4, 8, and 12 weeks ranged from 4.9 to 5.9; adjusted PHQ-9 means for the control group at 4, 8, and 12 weeks ranged from 9.0 to 10.8. Conclusions: Caregivers in the TASK group reduced their depressive symptoms to the mild range, while caregivers in the control group maintained their scores primarily in the moderately depressed range. Further testing of the TASK program in a larger randomized controlled clinical trial is warranted and is currently underway

Comparing treatment fidelity between study arms of a randomized controlled clinical trial for stroke family caregivers

OBJECTIVE: To compare treatment fidelity among treatment arms in the Telephone Assessment and Skill-Building Kit study for stroke caregivers (TASK II) with respect to: 1) protocol adherence; 2) intervention dosage and 3) nurse intervener perspectives. DESIGN: A randomized controlled clinical trial design. SETTING: Urban, community, midwestern United States. SUBJECTS: A total of 254 stroke caregivers (mean ±SD age, 54.4 ±11.8 years), 55 (22.0%) males and 199 (78.4%) females) randomized to the TASK II intervention (n=123) or an Information, Support, and Referral comparison group (n=131). INTERVENTIONS: TASK II participants received the TASK II Resource Guide; Information, Support, and Referral participants received a standard caregiver brochure. At approximately 8 weeks after discharge, both groups received 8 weekly calls from a nurse, with a booster call 4 weeks later. MEASURES: Protocol adherence was evaluated with the TASK II Checklist for Monitoring Adherence. Intervention dosage was measured by the number of minutes caregivers spent reading materials and talking with the nurse. Nurse intervener perspectives were obtained through focus groups. RESULTS: Protocol adherence was 80% for the TASK II and 92% for the Information, Support, and Referral. As expected, intervention dosage differed between TASK II and Information, Support, and Referral with respect to caregiver time spent reading materials (t=-6.49; P<.001) and talking with the nurse (t=-7.38; P<.001). Focus groups with nurses yielded further evidence for treatment fidelity and recommendations for future trials. CONCLUSIONS: These findings substantiate treatment fidelity in both study arms of the TASK II stroke caregiver intervention trial (NIH R01NR010388; ClinicalTrials.govNCT01275495)

Challenges of a Sustained Climate Observing System

Observations of planet Earth and especially all climate system components and forcings are increasingly needed for planning and informed decision making related to climate services in the broadest sense. Although significant progress has been made, much more remains to be done before a fully functional and dependable climate observing system exists. Observations are needed on spatial scales from local to global, and all time scales, especially to understand and document changes in extreme events. Climate change caused by human activities adds a new dimension and a vital imperative: to acquire climate observations of sufficient quality and coverage, and analyze them into products for multiple purposes to inform decisions for mitigation, adaptation, assessing vulnerability and impacts, possible geoengineering, and predicting climate variability and change and their consequences. A major challenge is to adequately deal with the continually changing observing system, especially from satellites and other remote sensing platforms such as in the ocean, in order to provide a continuous climate record. Even with new computational tools, challenges remain to provide adequate analysis, processing, meta-data, archival, access, and management of the resulting data and the data products. As volumes of data continue to grow, so do the challenges of distilling information to allow us to understand what is happening and why, and what the implications are for the future. The case is compelling that prompt coordinated international actions are essential to provide for information-based actions and decisions related to climate variability and change