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.

Palliative approach education for rural nurses and health-care workers: a mixed-method study.

BACKGROUND: The aim of this mixed-method study was to evaluate the outcomes of an educational intervention in a palliative approach for rural nurses and health-care workers (HCWs) using a team-based method. METHODS: Pre- and post-test measures using the Palliative Care Nursing Self-Competence (PCSNC) scale and the Self-Perceived Palliative Care Knowledge instrument were used to evaluate learning outcomes. Participant post-test scores were also compared to normative provincial data. FINDINGS: At post-test, HCWs showed statistically significant improvements across 7 of 10 domains in self-perceived competence and 6 of 12 domains in self-perceived knowledge; all scores were equivalent to or better than provincial normative data. Nurses' self-perceived knowledge showed statistically significant improvements in 3 of 12 domains; all post-test scores were equivalent to provincial normative data. Qualitative data indicated improvements in familiarity with the resources available for palliative care and in communication among the nursing team. CONCLUSION: An educational intervention can improve the competence and knowledge of rural HCWs and nurses in a palliative approach.

Applying research into practice: a guide to determine the next palliative home care nurse visit.

Beyond their own family caregivers, home healthcare nurses play a pivotal role in caring for those dying at home. However, deciding the timing of the next visit for these patients and their families is not straightforward. The Palliative Care: Determining Next Home Care Nurse Visit decision guide supports clinicians in their decision-making process of planning visits to most effectively meet the needs and goals of patients and families during the final months of life.

Rural nursing and quality end-of-life care: palliative care ... palliative approach ... or somewhere in-between?

Secondary analysis of data from 2 studies examining palliative care in rural areas was conducted with the aim to better understand how a nursing palliative approach influences quality outcomes at end-of-life. Nurses' ways of being that brought connection and comfort at end-of-life included paying attention to time, privacy, and family support. The rural context with its geography, relationships, and unique resources influenced nurses' abilities to enact a palliative approach. Findings demonstrate that urban-centric models of palliative care do not fit well in rural nursing practice and highlight the importance of understanding the rural context.

Core aspects of "empowering" caregivers as articulated by leaders in home health care: palliative and chronic illness contexts.

Home-based family caregivers are often assisted by home care services founded upon principles of health promotion, such as empowerment. Using an interpretive approach and in-depth qualitative interviews, the authors examine descriptions of family empowerment by leaders and managers in the field of home health care in the province of British Columbia, Canada. In a culture of fiscal restraint, dying at home, and self-care, participants described how home care nurses empower family caregivers to meet these objectives. This involves educating and informing caregivers, engaging them in planning and decision-making, and reassuring them that their role is manageable and worthwhile. Though some participants viewed providing supports as empowering (e.g., during times of crisis), others viewed them as disempowering (by promoting dependence). Empowered caregivers were characterized as able to provide home care, confident of their capabilities, and believing that their work is positive and beneficial. The long-term goal of empowerment was characterized as client self-care and/or family care and decreased dependence on formal services.

Home care nurses' decisions about the need for and amount of service at the end of life.

AIMS: We explore home care nurse decision-making about the need for and amount of service by clients and families at the end of life. We identify factors nurses refer to when describing these decisions, situated within contextual features of nursing practice. BACKGROUND: Home care nurses are often responsible for decisions which have an impact on the access of clients and families to services at the end of life. Understanding how these decisions, are made, factors that are considered, and contextual influences is critical for improving access and enhancing care. METHODS: Qualitative data were collected between 2006 and 2008 from two samples of home care nurses: the first group (n = 29) recorded narrative descriptions of decisions made during visits to families. The second group (n = 27) completed in-person interviews focusing on access to care and their interactions with clients and families. Data were analysed with thematic coding and constant comparison. FINDINGS: Participants described assessing client and family needs and capacity. These assessments, at times integrated with considerations about relationships with clients and families, inform predictive judgements about future visits; these judgments are integrated with workload and home health resource considerations. In describing decisions, participants referred to concepts such as expertise, practice ideals and approaches to care. CONCLUSION: Findings highlight the role of considerations of family caregiver capacity, the influence of relationships and the importance of the context of practice, as part of a complete understanding of the complexity of access to care at the end of life.

Articulating the role of relationships in access to home care nursing at the end of life.

In this article, we draw on data collected from two samples of home care nurses to examine how relationships between nurses and family caregivers intersected with access to palliative home care nursing services. Participants referred to relationships as important for their practical benefits and for access to care: good relationships enhanced the nurse's ability to assess clients and families and fostered the family's trust in the nurse's care. Although emphasizing the need to build and maintain relationships (often requiring time), participants simultaneously referred to beliefs about the need to control the personal emotions invoked in relationships so as to ensure appropriate access for clients and families. Future research should further explore how the organizational and resource context, and the culture of palliative care, shape nurses' beliefs about relationships in their practice, the nature and types of relationships that can develop, and both client and family caregivers' access to care.