Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24-hour care homes.

Objectives: Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home.Method: Qualitative thematic and conversational analysis were used: themes were co-created and modes of speech and syntactical patterns analysed to expose discourses related to caregiving after placement in 24-hour care homes.Results: Four main themes were co-constructed from the data analysis: living with loss, relinquishing, redefining the caregiving role, and rediscovering and recreating a new self.Discussion: Caregiving continues after placement of family members with dementia in 24-hour care homes. Caregivers are at-risk group and require ongoing support throughout the caregiving journey. Study participants reported that navigation skills such as relationship building, communication, and advocacy were particularly salient to the post-placement period, when navigating the complex health care environment was a significant obstacle. Ultimately, findings from these focus groups will be used to inform an online intervention to support caregivers of a family member with dementia residing in a 24-hour care home.

Indicators of integration of oncology and palliative care programs: an international consensus.

BACKGROUND: Recently, the concept of integrating oncology and palliative care has gained wide professional and scientific support; however, a global consensus on what constitutes integration is unavailable. We conducted a Delphi Survey to develop a consensus list of indicators on integration of specialty palliative care and oncology programs for advanced cancer patients in hospitals with ≥100 beds. METHODS: International experts on integration rated a list of indicators on integration over three iterative rounds under five categories: clinical structure, processes, outcomes, education, and research. Consensus was defined a priori by an agreement of ≥70%. Major criteria (i.e. most relevant and important indicators) were subsequently identified. RESULTS: Among 47 experts surveyed, 46 (98%), 45 (96%), and 45 (96%) responded over the three rounds. Nineteen (40%) were female, 24 (51%) were from North America, and 14 (30%) were from Europe. Sixteen (34%), 7 (15%), and 25 (53%) practiced palliative care, oncology, and both specialties, respectively. After three rounds of deliberation, the panelists reached consensus on 13 major and 30 minor indicators. Major indicators included two related to structure (consensus 95%-98%), four on processes (88%-98%), three on outcomes (88%-91%), and four on education (93%-100%). The major indicators were considered to be clearly stated (9.8/10), objective (9.4/10), amenable to accurate coding (9.5/10), and applicable to their own countries (9.4/10). CONCLUSIONS: Our international experts reached broad consensus on a list of indicators of integration, which may be used to identify centers with a high level of integration, and facilitate benchmarking, quality improvement, and research.

Palliative care rehabilitation survey: a pilot study of patients' priorities for rehabilitation goals.

Rehabilitation in palliative care is often overlooked. Settings that do consider occupational or physical therapy for palliative care patients often consult to therapists with competing caseloads. Few therapists specialise in palliative care, but nearly all ask, 'What needs doing'? and 'How well am I doing that'? No existing instruments address their questions. The objective is to develop and test a questionnaire for identifying patient goals and priorities for rehabilitation in palliative care. A questionnaire representing 11 domains of the Canadian Model of Occupational Performance was designed and pilot tested at four palliative care sites. Each question reflected a typical rehabilitation intervention in palliative care. Patients were asked to rate how important each of these interventions was on a numerical rating scale (0, not important-10, extremely important). Open-ended questions captured verbatim comments regarding thoughts of rehabilitation. The questionnaire was tested for test-retest reliability with two interviews approximately 1 week apart. Forty patients participated in the first interview and 32 in the second. Eight of eleven domain sub-scores achieved an intra-class correlation coefficient of 0.6 or higher. The highest means were for the physical (8.2), institutional (7.8) and self-care (7.8) domains on the first interview and for the spiritual domain (7.9) on the second interview. Suggestions are provided to shorten the questionnaire and strengthen validity. This work furthers the understanding of the role of rehabilitation in palliative care. It also illustrates the feasibility of involving palliative care patients in research that contributes to setting standards and measuring quality of service.

Communication between primary care physicians and radiation oncologists regarding patients with cancer treated with palliative radiotherapy.

PURPOSE: The purpose of this study was to assess the satisfaction and information needs of primary care physicians (PCPs) regarding communication with radiation oncologists (ROs), with respect to patients who receive palliative radiotherapy (RT). A selected objective was to evaluate the agreement between PCPs' expectations and the content of the RO letter sent after completion of RT. PCPs' knowledge of the role of palliative RT and their awareness of available patient support services were also determined. METHODS: The PCPs of patients discharged from the Cross Cancer Institute after receiving palliative RT were surveyed using a mail-out questionnaire. Questions regarding communication, RT knowledge, and awareness of support services were asked. The corresponding RO letter was reviewed. RESULTS: A total of 148 PCPs were identified and were mailed questionnaires, with 114 (77%) responding. Overall, 80% (87 of 109) of PCPs found the RO letter to be useful in patient management. However, there was poor (< 53%) agreement between PCPs' expectations and the actual content of the RO letter. Knowledge of the indications and effectiveness of palliative RT was limited, with PCPs obtaining a median score of 4 of a possible 8. Only 27% (31 of 114) of PCPs were aware of all five of the patient support services listed. CONCLUSION: Results show that although the majority of PCPs found the RO letter useful, they believed that the letter lacked important information while containing unnecessary details. Communication between PCPs and ROs needs improvement, especially considering that PCPs seem to have limited knowledge of palliative RT.

Clinical utility, factor analysis, and further validation of the memorial delirium assessment scale in patients with advanced cancer: Assessing delirium in advanced cancer.

BACKGROUND: Delirium is a common neuropsychiatric complication in patients with advanced cancer. The Memorial Delirium Assessment Scale (MDAS) is a recently developed 10-item severity rating instrument. The purpose of the current prospective study was to further assess the clinical utility, factor structure, and validity of the MDAS in a relatively homogeneous population of patients with advanced cancer. METHODS: Study entry of 104 patients occurred on their consecutive admission to a tertiary-level, acute palliative care unit in a university-affiliated teaching hospital. Patients underwent regular cognitive screening using the Mini-Mental State Examination, and serial monitoring of delirium using standardized semistructured interviews and MDAS ratings, up to the study endpoints of either patient discharge or death. RESULTS: Seventy-one patients met Diagnostic and Statistical Manual (of Mental Disorders)-IV criteria for a first episode of delirium. In 15 of 71 (21%) patients with a first episode of delirium, the first MDAS ratings were prorated because of dyspnea, fatigue, or profound delirium. In the remaining 56 patients (79%), the first MDAS ratings were rated fully and therefore evaluable. Correlations among the scale items ranged from moderate to low (correlation coefficient [r] = 0.68-0.02). Analysis of the pattern of factor loadings identified two primary correlated factors: global cognitive (Factor I) and neurobehavioral (Factor II) (r = 0.33). Cronbach alpha coefficients for Factors I and II were 0.8 and 0.66, respectively, indicating a relatively high level of correlation for items within each. The Cronbach alpha coefficient for all 10 items was 0.78, suggesting a general underlying factor. In a larger sample of complete MDAS ratings (n = 330) a cutoff total MDAS score of 7 of 30 yielded the highest sensitivity (98%) and specificity (96%) for delirium diagnosis. The MDAS was correlated moderately with the Mini-Mental State Examination (r = 0.55). CONCLUSIONS: The authors concluded that the MDAS structure is representative of the many features of delirium, broadly grouped as global cognitive and neurobehavioral dimensions. Prorating item scores is necessary in approximately 20% of advanced cancer patients with delirium. This poses potential limitations on the applicability of the MDAS in research. Conversely, the ability to prorate item scores confers a clinical advantage to the instrument when assessing delirium in a patient population with advanced cancer.

Assessing the reliability of patient, nurse, and family caregiver symptom ratings in hospitalized advanced cancer patients.

PURPOSE: The purpose of this study was to examine the reliability of symptom assessments in advanced cancer patients under various conditions, including multiple raters (patients, nurses, and family caregivers), occasions, and symptoms. PATIENTS AND METHODS: The study sample consisted of 32 advanced cancer patients admitted to a tertiary palliative care unit. Symptom assessments were completed for each patient on two separate occasions, approximately 24 hours apart. On each occasion, the patient, the primary care nurse, and a primary family caregiver independently completed an assessment using the Edmonton Symptom Assessment System (ESAS). The ESAS is a nine-item visual analogue scale for assessing symptoms in palliative patients. The reliability of the assessments (r) was examined using generalizability theory. RESULTS: Three important findings emerged from this analysis. First, the analysis of individual symptom ratings provided a more meaningful representation of the symptom experience than total symptom distress ratings. Secondly, patients, nurses, and caregivers varied in their ratings across different patients, as well as in their ratings of shortness of breath, which may have been a result of individual rater variability. Finally, reliability estimates (r), based on a single rater and one occasion, were less than.70 for all symptoms, except appetite. These estimates improved substantially (r >/=.70) for all symptoms except anxiety and shortness of breath, using three raters on a single occasion or two raters across two occasions. CONCLUSION: The findings from this study reinforce the need for the development of an integrated symptom assessment approach that combines patient and proxy assessments. Further research is needed to explore individual differences among raters.

Structuring the meaning of hope in health and illness.

The purpose of this paper is to describe a conceptual model for hope that captures the personal meaning of this construct within the context of health and illness. To identify this model, a research tool was created based on the semantic differential technique, a well-validated and often used approach for quantifying personal or connotative meaning. This tool was distributed in the form of a questionnaire to a voluntary sample (n = 550), consisting of three primary subsamples: a healthy adult subsample (n = 146), a chronic and life-threatening illness subsample (n = 159) and a nursing subsample (n = 206). A multidimensional structure for the concept, Hope, was identified, using principal components analysis. Three primary factors defined this structure: personal spirit (personal dimension), risk (situational dimension) and authentic caring (interpersonal dimension). Personal spirit, a dominant factor, is characterized by a holistic configuration of hope elements, revolving around a core theme of meaning. Risk is primarily a predictability factor, targeted with an underlying component of boldness. The authentic caring factor has a substantial credibility component, linked with the theme of comfort. Three distinctive features characterize this model: (a) its ability to capture the dynamic qualitative experience of hope within a holistic multidimensional quantitative framework, (b) its representation of hope as a location in three-dimensional space and (c) its sensitivity to individual and group variability. This integrative model deepens our understanding of the experience of hope within health and illness at the theoretical, clinical and methodological levels.

The meaning of hope in health and illness.

Hope plays an important role in the illness experience, yet it is a difficult concept to articulate, given its complex intangible nature. To develop a model for capturing the personal meaning of hope in health and illness, I developed a questionnaire and distributed it to 550 healthy adults, adults with illness experience, and nurses. Major findings from this study suggest that people experience hope within three interconnected realms: personal spirit, risk, and authentic caring. This multidimensional framework provides a novel approach for understanding the complex experience of hope in health and illness.

A comparison of patient and proxy symptom assessments in advanced cancer patients.

The purpose of this study was to compare patient and proxy (physician and nurse) assessments of symptoms in advanced cancer patients. The sample consisted of 49 patients with advanced cancer admitted to an acute palliative care unit. Three independent assessments were completed for each patient on two occasions within 11 days of admission. On each occasion, symptoms were rated independently by the patient and two proxies (treating physician and nurse), using the Edmonton Symptom Assessment System (ESAS). The ESAS is a nine-item visual analogue scale (VAS) for assessing pain, activity, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. Symptom ratings were compared using a repeated-measures ANOVA procedure and correlations. Average physician ratings were generally lower than average patient ratings for both occasions. Average nurse ratings agreed more closely with patient ratings, with a trend towards lower ratings on occasion 1 and higher ratings on occasion 2. There was a significant rater (person rating the effects) effect (P < 0.01) for three of the nine symptoms: physicians rated drowsiness, shortness of breath and pain significantly lower than patients. For drowsiness and shortness of breath, these differences were clinically relevant, representing a difference of more than 12 mm on a 100-mm VAS. The accuracy of assessments amongst those rating the symptoms did not improve over time. Proxy assessments of symptom intensity, particularly by physicians, were significantly lower than patient assessments for three of the nine symptoms. Further research regarding the reliability of patient and proxy assessments is needed to assess and manage symptoms in advanced cancer effectively.