Dena Schulman-Green

Abstract

Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers’ processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers’ processes to support patient self-management: “Focusing on the Patient’s Illness Needs,” “Activating Resources to Support Oneself as the Family Caregiver,” and “Supporting a Patient Living with a Chronic, Life-Limiting Illness.” Factors affecting family caregivers’ support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.

Abstract

Background: Delirium is a common and preventable geriatric syndrome. Moving beyond the binary classification of delirium present/absent, delirium severity represents a potentially important outcome for evaluating preventive and treatment interventions and tracking the course of patients. Although several delirium severity assessment tools currently exist, most have been developed in the absence of advanced measurement methodology and have not been evaluated with rigorous validation studies. Objective: We aimed to report our development of new delirium severity items and the results of item reduction and selection activities guided by psychometric analysis of data derived from a field study. Methods: Building on our literature review of delirium instruments and expert panel process to identify domains of delirium severity, we adapted items from existing delirium severity instruments and generated new items. We then fielded these items among a sample of 352 older hospitalized patients. Results: We used an expert panel process and psychometric data analysis techniques to narrow a set of 303 potential items to 17 items for use in a new delirium severity instrument. The 17-item set demonstrated good internal validity and favorable psychometric characteristics relative to comparator instruments, including the Confusion Assessment Method-Severity (CAM-S) score, the Delirium Rating Scale Revised 98, and the Memorial Delirium Assessment Scale. Conclusion: We more fully conceptualized delirium severity and identified characteristics of an ideal delirium severity instrument. These characteristics include an instrument that is relatively quick to administer, is easy to use by raters with minimal training, and provides a severity rating with good content validity, high internal consistency reliability, and broad domain coverage across delirium symptoms. We anticipate these characteristics to be represented in the subsequent development of our final delirium severity instrument.

Abstract

Aim: To describe Israel's development of the palliative care advanced practice registered nurse as a foundation for the development of the advanced practice registered nurse role in other specialties. Background: Palliative care centres on alleviating physical, emotional, social and spiritual distress associated with life-limiting illness. In 2009, Israel introduced the palliative care advanced practice nurse role, that is, registered nurses with specialized training in palliative care, to address increasing palliative care needs. Introduction: While there has been investment in its development, full implementation of the advanced practice nurse has not yet been achieved. Methods: In this qualitative descriptive study, we conducted a document analysis (n = 11) and key informant interviews (n = 11), extracted themes using qualitative content analysis and triangulated data sets. Results: Documents reflected growing palliative care needs and uniform requirements for advanced practice nurse training. Interviews uncovered a perceived lack of awareness of palliative care, the need for increased role definition and practice authority for advanced practice nurses, and barriers to entry and training for this role. Discussion: Findings highlight ongoing needs in palliative care and advanced practice nursing and a trajectory of growth. Conclusions: The challenges Israel faces in implementation of the palliative care advanced practice nurse role inform development of other advanced practice nursing roles in Israel and other countries. Implications for Nursing Practice: Streamlining training pathways and resolving scope of practice issues will assist in implementation of advanced practice nursing roles. Implications for Health Policy: Our data offer targets for policymakers advocating the advanced practice nurse role, including training requirements and scope of practice.

Abstract

Background: While clinical pathways have been widely adopted to decrease variation in cancer treatment patterns, they do not always incorporate patient and family caregiver perspectives. We identified shared patient and family caregiver considerations influencing treatment preferences/decision making to inform development of a shared decision pathway. Methods: We conducted qualitative interviews with women who completed initial definitive treatment for stage I–III breast cancer and their family caregivers. As part of a broader interview, we asked participants what they considered when choosing a treatment option for themselves/their loved one. We coded transcribed interviews, analyzed patient and family caregiver datasets separately, and compared findings. Findings Patients’ (n = 22) mean age was 55.7 years, whereas family caregivers’ (n = 20) mean age was 59.5 years, with most (65%) being patients’ spouses/partners. Considerations reported by both groups included cancer status, treatment issues, physical/psychosocial/family consequences, and provider/health care system issues. Data revealed three key tensions that arise during treatment decision making: (1) having enough information to set expectations but not so much as to be overwhelming; (2) balancing the highest likelihood of cure with potential physical/emotional/social/financial consequences of the chosen treatment; and (3) wanting to make data-driven decisions while having a personalized treatment plan. Discussion: Patients and family caregivers identified several considerations of shared relevance reflecting different perspectives. Efforts to balance considerations can produce tensions that may contribute to decision regret if unaddressed. Conclusion: Clinical pathways can increase exposure to decision regret if treatment options are selected without consideration of patients’ priorities. A shared decision pathway that incorporates patient-centeredness could facilitate satisfactory decision making.

Abstract

Background/Objectives: To describe the design, procedures, and cohort for the Better ASsessment of ILlness -(BASIL) study, which is conducted to develop and test new delirium severity measures, compare them with existing measures, and examine related clinical outcomes. Methods: Prospective cohort study with 1 year follow-up of study participants at a large teaching hospital in Boston, Massachusetts. After brief cognitive testing and the Delirium Symptom Interview, delirium and delirium severity were rated daily in the hospital using the Confusion Assessment Method (CAM) and CAM-Severity score, the Delirium Rating Scale-Revised-98 (DRS-R-98), and the Memorial Delirium Assessment Scale (MDAS). Other key study variables included comorbidity, physical function (basic and instrumental activities of daily living [ADL]), ratings of subjective health and well-being, and clinical outcomes (length of stay, 30 day rehospitalization, nursing home admission, healthcare utilization). Follow-up interviews occurred at 1- and 12-month with patients and families. In 42 patient interviews, inter-rater reliability for key variables was assessed. Results: Of 768 eligible patients approached, 469 were screened and 352 enrolled, yielding an overall study response rate of 67% for potentially eligible participants. The mean participant was 80.3 years old (SD 6.8) and 203 (58%) were female. The majority of patients were medically complex with Charlson Comorbidity Scores ≥2 (192 patients, 55%), and 102 (29%) met criteria for dementia. Inter-rater reliability assessments (n = 42 pairs) were high for overall ratings of presence or absence of delirium by CAM (κ = 1.0), delirium severity by DRS-R-98 and MDAS (weighted kappa, κ = 1.0 for each) and for ADL impairment (κ = 1.0). For eligible participants at each time point, 278 out of 308 (90%) completed the 1-month follow-up and 132 out of 256 (53%) have completed the 12-month follow-up to date, which is still in progress. Among those who completed interviews, there was only 1-3% missing data on most major outcomes (delirium, basic ADL, and readmission). Conclusion: The BASIL study presents an innovative effort to advance the conceptualization and measurement of delirium severity. Unique strengths include the diverse cohort with complete high quality data and longitudinal follow-up, along with detailed collection of multiple delirium measures daily during hospitalization.

Abstract

Background and Objectives Delirium creates distinct emotional distress in patients and family caregivers, yet there are limited tools to assess the experience. Our objective was to develop separate patient and family caregiver delirium burden instruments and to test their content and construct validity. Research Design and Methods Two hundred forty-seven patients and 213 family caregivers were selected from an ongoing prospective cohort of medical-surgical admissions aged ≥70 years old. New patient and family caregiver delirium burden instruments were developed and used to measure the subjective experiences of in-hospital delirium. Delirium and delirium severity were measured by the Confusion Assessment Method (CAM) and CAM-Severity (long form). Results Both Delirium Burden (DEL-B) instruments consist of eight questions and are measured on a 0 - 40 point scale. Final questions had good clarity and relevancy, as rated by the expert panel, and good internal consistency (Cronbach's α = .82-.86). In the cohort validation, Patient DEL-B (DEL-B-P) was 5.1 points higher and Family Caregiver DEL-B (DEL-B-C) was 5.8 points higher, on average, for patients who developed delirium compared to those who did not (p < .001). Test-retest reliability of DEL-B-C at baseline and 1 month was strong (correlation = .73). Delirium severity was mildly-moderately correlated with DEL-B-P (correlation = .34) and DEL-B-C (correlation = .26), suggesting contribution of other factors. Discussion and Implications We created instruments to reliably measure and evaluate the burden of delirium for patients and their family caregivers. Although additional validation is indicated, these instruments provide a key first step toward measuring and improving the subjective experience of delirium for patients and their families.

Abstract

Background We created the Measurement of Transitions in Cancer Scale to assess patients' perceptions of the extent of change they experience with cancer-related transitions and how well they feel they are managing these transitions. For some transitions, we found that the more change that was reported, the worse management was reported; however, the benchmark by which patients assess how well they have managed may vary with the extent of change. Objectives The aim of the study was to identify approaches to combine reports of extent and management of change. Methods Among women with breast cancer, we explored relationships of composite measures (arithmetic and geometric means, subtractive and proportional need for improvement) with other indicators of well-being (symptoms, anxiety, depression, uncertainty, self-efficacy, knowledge of care options, medical communication competence). We examined statistical significance using false rate discovery for multiple tests on correlations with clinical outcomes. Results Greater extent and less management were significantly associated with higher total symptoms, anxiety, depression, uncertainty, and less self-efficacy in Personal Transitions, but not in Care Transitions. The arithmetic and geometric means had weak correlations with clinical outcomes, whereas the subtractive and proportional need for improvement had significant correlations with most clinical outcomes both in Personal and Care Transitions. The combined proportional need for improvement in Personal Transitions was significantly associated with total symptoms, anxiety, depression, uncertainty, and self-efficacy. The Care Transitions score was also significantly associated with total symptoms, anxiety, uncertainty, and self-efficacy. Discussion These approaches can be applied to other aspects of self-management that require assessment of the extent and management of an experience. The four approaches yield different results. We recommend the need for improvement composites to capture correlations with the clinical outcomes.