Susan M. McLennon

Systematic review of health-related quality of life models

BackgroundA systematic literature review was conducted to (a) identify the most frequently used health-related quality of life (HRQOL) models and (b) critique those models.MethodsOnline search engines were queried using pre-determined inclusion and exclusion criteria. We reviewed titles, abstracts, and then full-text articles for their relevance to this review. Then the most commonly used models were identified, reviewed in tables, and critiqued using published criteria.ResultsOf 1,602 titles identified, 100 articles from 21 countries met the inclusion criteria. The most frequently used HRQOL models were: Wilson and Cleary (16%), Ferrans and colleagues (4%), or World Health Organization (WHO) (5%). Ferrans and colleagues’ model was a revision of Wilson and Cleary’s model and appeared to have the greatest potential to guide future HRQOL research and practice.ConclusionsRecommendations are for researchers to use one of the three common HRQOL models unless there are compelling and clearly delineated reasons for creating new models. Disease-specific models can be derived from one of the three commonly used HRQOL models. We recommend Ferrans and colleagues’ model because they added individual and environmental characteristics to the popular Wilson and Cleary model to better explain HRQOL. Using a common HRQOL model across studies will promote a coherent body of evidence that will more quickly advance the science in the area of HRQOL.

Finding meaning as a mediator of burden on the health of caregivers of spouses with dementia

Objective: The aim of this study was to examine the role of finding meaning in caregiving as a way of coping and potential mediator of the effect of caregiver burden on caregiver health, controlling for potentially influencing factors. Method: This was a cross-sectional, descriptive study of 84 community-residing spouse caregivers for persons with dementia in which participants completed questionnaires during a face-to-face meeting. Variables included background and contextual variables, caregiver burden, finding meaning through caregiving (FMTCG), and caregiver physical and mental health. Measures included the Zarit Burden Interview, the FMTCG Scale, and the Medical Outcomes Short Form-36, v2. Results: Regression analyses revealed that FMTCG partially mediated the relationship between caregiver burden and caregiver mental health. Caregiver burden was not associated with caregiver physical health. Conclusion: This study contributed new information by examining the role of finding meaning in caregiving, conceptualized from an existential perspective, as a mediator in the stress-coping process. Caregiver burden had an indirect effect on caregiver mental health that was partially mediated by finding meaning. Results underscore the importance of the positive aspects of caregiving such as finding meaning as potential buffers of the burden of caregiving.

Oncology nurses' narratives about ethical dilemmas and prognosis-related communication in advanced cancer patients.

Background: Oncology nurses routinely encounter ethical dilemmas when caring for advanced cancer patients, particularly concerning prognosis-related communications. Nurses experience uncertainty and barriers to providing quality end-of-life care; thus, more information is needed about recognizing and managing these dilemmas and to clarify their role in these situations. Objective: The purposes of this study were to (1) describe the frequency and types of ethical dilemmas experienced by oncology nurses caring for advanced cancer patients and (2) to summarize their written comments about prognosis-related communications. Methods: This was a content analysis of narrative comments provided by 137 oncology nurses who completed a mailed national survey of members of the Oncology Nursing Society. Results: The most frequently reported ethical dilemmas encompassed uncertainties and barriers to truth telling, familial and cultural conflict, and futility. Physician-nurse teams were considered optimal for delivering prognosis-related information. Nurses offered strategies for facilitating these communications. They also expressed the need for more education about how to engage in prognosis-related discussions and for better methods for relaying this information among team members to avoid “working in the dark.” Conclusions: Oncology nurses routinely experience ethical dilemmas, and there is a need for clarification of their role in these circumstances. Healthcare providers would benefit from interdisciplinary education about prognosis-related discussions. Attention to managing familial conflict and understanding cultural variations associated with illness, death, and dying is also needed. Implications for Practice: Findings reveal new information about ethical dilemmas encountered by nurses and strategies for improving end-of-life communications with advanced cancer patients.

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.

Are there Gender, Racial, or Relationship Differences in Caregiver Task Difficulty, Depressive Symptoms, and Life Changes among Stroke Family Caregivers?

Abstract Objective: To examine differences in caregiver perceptions of task difficulty, depressive symptoms and life changes based on caregiver characteristics of gender, race and type of relationship to the person with stroke. Methods: A sample of 243 stroke caregivers (females n = 191; males n = 52; non-African Americans n = 184; African Americans n = 59; non-spouses n = 127; spouses n = 116) were interviewed by telephone within 8 weeks of the survivor’s discharge to home. Measures included the Oberst Caregiving Burden Scale (OCBS) for task difficulty, Patient Health Questionnaire (PHQ-9) for depressive symptoms and Bakas Caregiving Outcomes Scale (BCOS) for life changes. Three general linear models computed differences in OCBS, PHQ9 and OCBS scores. Results: Significant differences were found on the OCBS for females (p < 0.001) and African American spouses (p < 0.048); on the PHQ9 for females (p < 0.001), non-African Americans (p = 0.047), spouses (p = 0.003) and African-American spouses (p = 0.010); and on the BCOS for females (p = 0.008) and non-African Americans (p = 0.033). Conclusions: Findings suggest that female and non-African American stroke caregivers are relatively more likely to experience task difficulty, depressive symptoms and negative life changes as a result of providing care. African American spouses were also at risk. Tailoring interventions based on caregivers’ characteristics may improve outcomes. Trial registration: ClinicalTrials.gov identifier: NCT01275495.

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.

Implementation of a Stroke Competency Program to Improve Nurses' Knowledge of and Adherence to Stroke Guidelines.

ABSTRACT Background: Nurses play an integral part in providing evidence-based care to patients with stroke, yet some patients receive unnecessary or even harmful care. The literature supports the use of multifaceted strategies to promote implementation of evidence-based practice; however, there is a gap in knowing which combinations of strategies are most successful. Purpose: The purpose of this study was to determine if a tailored, multifaceted Stroke Competency Program would improve nurses’ knowledge of and adherence to evidence-based practices in the care of patients with stroke. This program bundled implementation strategies of local opinion leaders, printed educational materials, and educational outreach. Methods: This study used a pretest/posttest program design. Nursing adherence was measured via documentation audits with knowledge measured by an author-developed assessment. Findings: Most participating nurses had approximately 10 years of nursing experience and were baccalaureate prepared; participation ranged from 32% to 58% (n = 88). Overall, an improvement in nursing adherence was noted after the program as well as significant improvements in nursing knowledge. Conclusion: Although the Stroke Competency Program improved nursing knowledge of and adherence to stroke guidelines, future research should seek to extend these findings to identify which bundle of strategies are most effective for implementing evidence into nursing practice using psychometrically sound outcome measures.

Needs, Concerns, Strategies, and Advice of Daily Home Hemodialysis Caregivers:

Improved patient outcomes have led to increased international interest in daily home hemodialysis as a kidney replacement therapy. Daily home hemodialysis often requires the assistance of a caregiver during and between treatments. Understanding the needs and concerns of caregivers of persons on daily home hemodialysis will inform the design of supportive interventions to improve caregiver retention and maintain their health and well-being. Using a descriptive qualitative design, the purpose of this study was to identify and describe the needs, concerns, strategies, and advice of family caregivers. Twenty-one caregivers were interviewed; five of these individuals were former caregivers of patients who had returned to outpatient hemodialysis. Data were collected via audio-recorded telephone interviews following a semistructured interview guide with five open-ended questions. A content analysis approach was used to code and analyze the data. Caregivers described needs, concerns, and strategies and offered advice in five predetermined major categories. Major findings included a need for respite services and a need for interventions to manage the emotional responses to caregiving. This study provides valuable information about relevant areas to consider when developing an intervention program for daily home hemodialysis caregivers.

Content and Face Validity of the Marwit-Meuser Caregiver Grief Inventory (Short Form) in African American Caregivers

There may be cultural differences in the experience of predeath grief in African American (AA)/Black caregivers for persons with Alzheimers disease (AD). The most commonly used screening tool, the Marwit and Meuser Caregiver Grief Inventory—Short Form (MMCGI-SF), was developed from focus groups with primarily Caucasian/White caregivers. Interviews were held with 19 AA spouse and adult child caregivers for persons with mild, moderate, and severe AD, and data were coded and compared with scale items on the MCMGI-SF to assess validity. Results from this study provide evidence for content and face validity of the MMCGI-SF for use in AA caregivers.

Developing a cost template for a nurse-led stroke caregiver intervention program

The purpose of this brief report was to estimate the program costs for the Telephone Assessment and Skill-building Kit (TASK) for stroke caregivers, in comparison with an Information, Support, and Referral (ISR) group. Using data from our pilot trial, we developed a cost template, accounting for both the costs of organizing and implementing the TASK intervention and ISR programs and costs of the caregivers time involved. Mean costs per caregiver were estimated to be