Bereaved family members' perceptions of the quality of end-of-life care across four types of inpatient care settings.

BACKGROUND: The aims of this study were to gain a better understanding of how bereaved family members perceive the quality of EOL care by comparing their satisfaction with quality of end-of-life care across four different settings and by additionally examining the extent to which demographic characteristics and psychological variables (resilience, optimism, grief) explain variation in satisfaction. METHODS: A cross-sectional mail-out survey was conducted of bereaved family members of patients who had died in extended care units (n = 63), intensive care units (n = 30), medical care units (n = 140) and palliative care units (n = 155). 1254 death records were screened and 712 bereaved family caregivers were identified as eligible, of which 558 (who were initially contacted by mail and then followed up by phone) agreed to receive a questionnaire and 388 returned a completed questionnaire (response rate of 70%). Measures included satisfaction with end-of-life care (CANHELP- Canadian Health Care Evaluation Project - family caregiver bereavement version; scores range from 0 = not at all satisfied to 5 = completely satisfied), grief (Texas Revised Inventory of Grief (TRIG)), optimism (Life Orientation Test - Revised) and resilience (The Resilience Scale). ANCOVA and multivariate linear regression were used to analyze the data. RESULTS: Family members experienced significantly lower satisfaction in MCU (mean = 3.69) relative to other settings (means of 3.90 [MCU], 4.14 [ICU], and 4.00 [PCU]; F (3371) = 8.30, p = .000). Statistically significant differences were also observed for CANHELP subscales of "doctor and nurse care", "illness management", "health services" and "communication". The regression model explained 18.9% of the variance in the CANHELP total scale, and between 11.8% and 27.8% of the variance in the subscales. Explained variance in the CANHELP total score was attributable to the setting of care and psychological characteristics of family members (44%), in particular resilience. CONCLUSION: Findings suggest room for improvement across all settings of care, but improving quality in acute care and palliative care should be a priority. Resiliency appears to be an important psychological characteristic in influencing how family members appraise care quality and point to possible sites for targeted intervention.

Legitimising and rationalising in talk about satisfaction with formal healthcare among bereaved family members.

While there is a fair amount of knowledge regarding substantive features of end of life care that family members desire and appreciate, we lack full understanding of the process whereby family members formulate care evaluations. In this article we draw on an analysis of interview data from 24 bereaved family members to explicate how they interpret their experiences and formulate evaluations of end of life care services. Most participants wove between expressing and legitimising dissatisfaction, and qualifying or diffusing it. This occurred through processes of comparisons against prior care experiences and expectations, personalising (drawing on personal situations and knowledge), collectivising (drawing on conversations with and observations of others) and attempting to understand causes for their negative care experiences and to attribute responsibility. The findings suggest that dissatisfaction might be diffused even where care is experienced negatively, primarily through the acknowledgement of mitigating circumstances. To a lesser extent, some participants attributed responsibility to the 'system' (policy and decision-makers) and individual staff members. The findings are discussed in relation to the theoretical understanding of satisfaction and evaluation processes and how satisfaction data might inform improvements to care quality.

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings.

BACKGROUND: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. METHODS: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. RESULTS: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. CONCLUSION: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation.

Meaning-making intervention during breast or colorectal cancer treatment improves self-esteem, optimism, and self-efficacy.

Existential issues often accompany a diagnosis of cancer and remain one aspect of psychosocial oncology care for which there is a need for focused, empirically tested interventions. This study examined the efficacy of a novel psychological intervention specifically designed to address existential issues through the use of meaning-making coping strategies on psychological adjustment to cancer. Eighty-two breast or colorectal cancer patients were randomly chosen to receive routine care (control group) or up to four sessions that explored the meaning of the emotional responses and cognitive appraisals of each individual's cancer experience within the context of past life events and future goals (experimental group). This paper reports the results from 74 patients who completed and returned pre- and post-test measures for self-esteem, optimism, and self-efficacy. After controlling for baseline scores, the experimental group participants demonstrated significantly higher levels of self-esteem, optimism, and self-efficacy compared to the control group. The results are discussed in light of the theoretical and clinical implications of meaning-making coping in the context of stress and illness.