Evaluation of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme: a protocol of a cluster randomised control trial.

INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.

Condition-Specific Pamphlets to Improve End-of-life Communication in Long-term Care: Staff Perceptions on Usability and Use.

OBJECTIVES: This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care. DESIGN: A mixed-method (qualitative and quantitative) survey design was used. Step 1 collected survey data on the usability of the pamphlets. Step 2 collected survey data on pamphlet use. SETTINGS AND PARTICIPANTS: Two nurses with specialized palliative care training, 2 resident/family representatives, 10 condition-specific specialists, and 33 LTC palliative leads reviewed the pamphlets for usability prior to distribution. A total of 178 LTC home staff in 4 participating LTC homes reported on pamphlet use. MEASURES: Specialists and resident/family representatives were asked to provide open comments and LTC home palliative leads were asked to complete a survey on the accuracy, readability, and relevance of the pamphlets. After 6 months of distribution, all staff in participating LTC homes were asked to complete a survey on pamphlet use, usefulness, and comfort with distribution. RESULTS: The pamphlets were reportedly accurate, relevant, and easy to understand. Following 6 months of availability, most staff in LTC had read the pamphlets, found the information useful, and planned to share them. However, half of the staff questioned their role in pamphlet distribution and most had not distributed them. Regulated staff (ie, staff affiliated with a regulated profession) expressed more comfort sharing the pamphlets than care aides and support staff. CONCLUSIONS/IMPLICATIONS: Condition-specific pamphlets appear to hold promise in providing residents and families with relevant information that may activate early reflections and conversations about end-of-life care. However, structured implementation strategies, training, and discussions are required to improve staff comfort with distribution and explore roles in distribution and follow-up.

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care.

This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents' perceptions of end-of-life comfort, sharing information about a fellow resident's death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.

[Not Available]. / La souffrance en lien avec les écueils de la communication chez les femmes âgées atteintes de cancer incurable.

Among the older population in Canada, the majority of whom are women, incurable cancer is rampant. Having incurable cancer often implies suffering. Studies reveal that communication with one's circle is therefore often arduous, leading us to believe that it can cause suffering. To our knowledge, there has been no research that specifically explores the suffering related to communication among older women with incurable cancer: this will be the objective of our article.This exploratory qualitative research is in humanistic psychology. It is based on a phenomenological analysis of the conceptual categories that emerged from 19 semi-structured interviews among 10 women aged 65 years and over with incurable cancer.The results reveal both the dynamic of silence, desired in order to prevent increased suffering, and sometimes imposed and a source of further suffering. They also reveal that the absence of listening, the imposition of silence, and the minimization of what these women say, also cause suffering. The consequences of disclosing one's illness and its suffering are also explored.