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.

Using a self-directed workbook to support advance care planning with long term care home residents.

BACKGROUND: While advance care planning (ACP) has been shown to improve the quality of end-of-life (EOL) communication and palliative care, it is rarely practiced in long term care (LTC) homes, where staff time to support the process is limited. This study examines the potential of a publicly available self-directed ACP workbook distributed to LTC residents to encourage ACP reflection and communication. METHODS: Recruitment took place across three LTC homes, between June 2018 and July 2019. To be eligible, residents had to have medical stability, cognitive capacity, and English literacy. The study employed a mixed methods concurrent design using the combination of ranked (quantitative) and open (qualitative) workbook responses to examine documented care preferences and ACP reflections and communications. RESULTS: 58 residents initially agreed to participate in the study of which 44 completed self-directed ACP workbooks. Our combined quantitative and qualitative results suggested that the workbooks supported the elicitation of a range of resident care preferences of relevance for EOL care planning and decision making. For example, ranked data highlighted that most residents want to remain involved in decisions pertaining to their care (70%), even though less than half expect their wishes to be applied without discretion (48%). Ranked data further revealed many residents value quality of life over quantity of life (55%) but a sizable minority are concerned they will not receive enough care at EOL (20%). Open comments affirmed and expanded on ranked data by capturing care preferences not explored in the ranked data such as preferences around spiritual care and post mortem planning. Analysis of all open comments also suggested that while the workbook elicited many reflections that could be readily communicated to family/friends or staff, evidence that conversations had occurred was less evident in recorded workbook responses. CONCLUSIONS: ACP workbooks may be useful for supporting the elicitation of resident care preferences and concerns in LTC. Developing follow up protocols wherein residents are supported in communicating their workbook responses to families/friends and staff may be a critical next step in improving ACP engagement in LTC. Such protocols would require staff training and an organizational culture that empowers staff at all levels to engage in follow up conversations with residents.

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.

Later-Life Homelessness as Disenfranchised Grief.

ABSTRACTAlthough interest on older homelessness is gaining momentum, little research has considered the experiences of first-time homelessness from the perspective of older adults themselves. This constructivist grounded-theory study addresses this gap by exploring how societal perceptions of homelessness and aging shape access to housing, services, and perceptions of self for 15 older adults residing in emergency homeless shelters in Montreal, (Quebec, Canada). Findings revealed that homelessness evoked a grief response characterized by shock, despair, anger, and in some cases, relief. Connecting and receiving support from other shelter residents and staff helped participants to acknowledge and grieve their losses. However, difficult shelter conditions, the stigma associated with aging and homelessness, and not having their grief recognized or validated served to disenfranchise grief experiences. Conceptualizing later-life homelessness as disenfranchised grief contributes to the aging and homelessness literature while providing new avenues for understanding and validating the experiences of a growing population of vulnerable older adults.

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.

Patterns of Shelter Use Among Men New to Homelessness in Later Life: Duration of Stay and Psychosocial Factors Related to Departure.

People who become homeless for the first time in late life are a growing but understudied population. This study draws on administrative data from one shelter (N = 1,214 first-time homeless) to assess the extent to which age is related to shelter stay and, to examine psychosocial factors that may be associated with shelter departure. Our bivariate and survival analysis results suggest that older homeless men stay in the shelter 2 weeks longer than younger clients. Older men with pending legal issues and mobility concerns were more likely to leave the shelter than those without such concerns. Findings highlight the impact of age and other psychosocial variables on shelter stay, and provide direction from which to address homelessness among men who are new to homelessness in later life.

'Growing Old' in Shelters and 'On the Street': Experiences of Older Homeless People.

Homelessness among older people in Canada is both a growing concern, and an emerging field of study. This article reports thematic results of qualitative interviews with 40 people aged 46 to 75, carried out as part of a mixed-methods study of older people who are homeless in Montreal, Quebec, Canada. Our participants included people with histories of homelessness (n = 14) and persons new to homelessness in later life (n = 26). Interviews focused on experiences at the intersections of aging and homelessness including social relationships, the challenges of living on the streets and in shelters in later life, and the future. This article outlines the 5 main themes that capture the experience of homelessness for our participants: age exacerbates worries; exclusion and isolation; managing significant challenges; shifting needs and realities; and resilience, strength, and hope. Together, these findings underscore the need for specific programs geared to the unique needs of older people who are homeless.

A Literature Review of Homelessness and Aging: Suggestions for a Policy and Practice-Relevant Research Agenda.

Homelessness among older people is a growing concern across Canada and is expected to rise with demographic change (Crane & Warnes, 2010; Culhane, Metraux, Byrne, Stino, & Bainbridge, 2013). Yet current knowledge, policies, and practices on homelessness largely focus on younger populations. Likewise, research and policies on aging typically overlook homelessness. Responses to homelessness among older people must address complex needs related to health, income security, and housing. Based on a comprehensive literature review, this article outlines the existing and needed research with regards to homelessness among older people. We clarify the intersections of aging and homelessness; review the relevant statistics, including estimated prevalence; discuss pathways and variations in experience; and identify gaps in knowledge. We conclude with a call for an inclusive research agenda that will help build policies and practices to reduce and ultimately to eliminate homelessness among older people in Canada.

[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.

How do mothers and fathers who have a child with a disability describe their adaptation/ transformation process?

This qualitative study explored the adaptation/transformation process in mothers and fathers at the individual, parental, marital and extrafamilial levels, and the similarities and differences in their experience of living with a child with cerebral palsy. Interviews were conducted with 13 mothers and 13 fathers of children with cerebral palsy. The results show that mothers and fathers are more likely to view the situation differently than similarly. For both parents, the situation offers the potential for transformation. Complementarity between mothers and fathers is an important factor in each of the adaptation or transformation subsystems. Both parents embark on a journey that changes their beliefs about difference, apply their new knowledge to every aspect of their life, and endeavour to normalize their situation.

[The experience of uncertainty of fathers and mothers in the process of the announcement of cerebral palsy of their children]. / L'expérience de l'incertitude chez les pères et les mères dans le processus de l'annonce de la déficience motrice cérébrale de leur enfant.

This qualitative research shows differences and similarities between mother and father's experience of incertitude in the process of the announcement of the cerebral palsy and the adaptation strategies used. Interviews have been conducted with 17 parents (10 mothers and 7 fathers). Results of the research reveals three main triggering factors of incertitude: incertitude in regards with the survival of the child, the unpredictability of the evolution of the child and the ambiguity of the information regarding the cerebral palsy Triggering factors of the incertitude are the same for both parents but their reactions towards the these factors and their way of coping with the situation vary.

[Between family and formal caregivers, the desire of the elderly on their desire to receive assistance]. / Entre les familles et les services formels, le désir des aînés ayant besoin d'aide.

In response to the contradictions appearing between, on the one hand, government promotion of family caregiving for elderly parents and, on the other, the rise of autonomist values (as documented in the literature), we surveyed a number of elderly people living with disabilities about the kind of assistance they would like to receive. The present qualitative, thematic analysis is based on the accounts given by 19 elderly people who receive assistance. The findings show that the position of elderly people with respect to their desire to receive (or not receive) substantial assistance from their family rests on a set of values, wishes, and/or fears - including, particularly, adherence to the value of autonomy, the desire to respect freedom (one's own as well as that of others), adherence to norms of familial duty, attachment to one's home, the value placed on solitude and privacy, and the degree of emotional closeness between the elderly and their children. Access to quality formal services also stands out as a factor enabling elderly people to actualize the desire for care which they elicited within the framework of this analysis.