Edmonton Classification System for Cancer Pain: Comparison of Pain Classification Features and Pain Intensity across Diverse Palliative Care Settings in Canada.

Background: The goal of the Edmonton Classification System for Cancer Pain (ECS-CP) is to create an international classification system for cancer pain. Previous studies reinforce the need for standardized training to ensure consistency across assessors. There is no universally accepted classification for neuropathic pain. Objectives: Our primary objective was to describe the prevalence of ECS-CP features in a diverse sample of advanced cancer patients, using assessors with standardized training. The secondary objectives were to: (1) determine the prevalence of neuropathic pain using the Neuropathic Pain Special Interest Group (NeuPSIG) criteria and (2) examine the relationship between specific predictors: ECS-CP features, age, Palliative Performance Scale, Morphine Equivalent Daily Dose (MEDD), setting, and pain intensity; and neuropathic pain. Methods: A total of 1050 adult patients with advanced cancer were recruited from 11 Canadian sites. A clinician completed the ECS-CP and NeuPSIG criteria, and collected additional information including demographics and pain intensity (now). All assessors received standardized training. Results: Of 1050 evaluable patients, 910 (87%) had cancer pain: nociceptive (n = 626; 68.8%); neuropathic (n = 227; 24.9%); incident (n = 329; 36.2%); psychological distress (n = 209; 23%); addictive behavior (n = 51; 5.6%); and normal cognition (n = 639; 70.2%). The frequencies of ECS-CP features and pain intensity scores varied across sites and settings, with more acute settings having higher frequencies of complex pain features. The overall frequency of neuropathic pain was 24.9%, ranging from 11% (hospices) to 34.2% (palliative outpatient clinic) across settings. Multivariate logistic regression analysis revealed that age <60 years, MEDD ≥19 mg, pain intensity ≥7/10, and incident pain were significant independent predictors of neuropathic pain (p < 0.05). Conclusion: The ECS-CP was able to detect salient pain features across settings. Furthermore, the frequencies of neuropathic pain utilizing the NeuPSIG criteria fits within the lower-end of literature estimates (13%-40%). Further research is warranted to validate the NeuPSIG criteria in cancer pain.

Building a new life: a qualitative study of how family carers deal with significant changes.

BACKGROUND: Family carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers' experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers. METHODS: Eight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data. FINDINGS/RESULTS: Carers dealt with the significant changes they experienced through the process of "building a new life" consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life. CONCLUSION: The process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.

Systematic review of factors associated with hope in family carers of persons living with chronic illness.

AIMS: To identify factors associated with hope in family carers of persons living with chronic illness. DESIGN: A systematic review of quantitative and mixed method studies on hope in carers of persons living with chronic illness. DATA SOURCES: Five electronic databases (Medline, Cumulative Index to Nursing and Allied Health Literature, Web of Science, ProQuest Dissertations and PsycINFO) were searched from inception to 13 July 2020. REVIEW METHODS: Inclusion criteria were the following: (a) study population of adult (18 years of age and older) carers of persons living with chronic illness, (b) hope was measured as a variable, (c) reported factors associated with hope, (d) employed either quantitative or mixed methods design, (e) written in English and (f) was published in peer reviewed journals. All included studies were evaluated for quality using the Mixed Method Appraisal Tool. RESULTS: Twenty-six studies were included in the systematic review. Quality of life, physical and mental health, life satisfaction and the hope of care recipients were found to be positively associated with hope. Carer's coping increased (self-efficacy and caregiver preparedness) as hope increased with a decrease in maladaptive coping strategies. Anxiety, depression, distress, grief and guilt were negatively associated with carers' hope. Carers' hope did not appear to be associated with carer or care-recipient demographic variables. CONCLUSION: Carers' hope appears to be associated with the carers' over all positive health. The factors associated with carers' hope provide potential areas to focus intervention development such as strategies that increase self-efficacy. More research is needed to clarify if factors such as stage of disease and resilience are associated with hope. Research on carers' hope assessment and intervention development should also focus on factors associated with hope. IMPACT: The findings underscore the need to assess and work with carers of persons living with chronic illness to enhance their hope.

A Retrospective Thematic Analysis of Patient, Family, and Staff Creative Art Tiles Developed on a Tertiary Palliative Care Unit.

OBJECTIVES: Clinical use of the creative arts in palliative care is well established, yet there are few evaluation studies of these programs. METHODS: In this first phase of a 3-phase evaluation of a creative arts program entitled "Tile Tales," we conducted a retrospective thematic analysis of 85 painted tiles and accompanying stories that were publically displayed on a tertiary palliative care unit. Each story was independently coded, using content analysis. Themes were derived through consensus, using the constant comparative method. RESULTS: Tiles were created by staff (n = 36, 42%), family (n = 32, 38%), patients (n = 9, 11%), or patients and family (n = 8, 9%). Six major themes emerged from the artwork: "Spirituality," "Relationships," "Journey," "Story," "Symbolism," and "Paradox." SIGNIFICANCE OF RESULTS: These results illustrate how the creative arts can support the expression of diverse palliative care experiences, for patients, their families and palliative care staff, when words alone may not suffice.

A Feasibility Study of a Volunteer Navigation Program in the Palliative Context.

AIMS: This mixed methods longitudinal study evaluated Nav-CARE for feasibility, acceptability, ease of use, and satisfaction by older persons and volunteers. METHODS: Nine volunteer navigators visited 23 older persons with serious illness every 3 to 4 weeks for 1 year. Data were collected from volunteer navigators, and older person participants at baseline, during the year- long implementation and post implementation. RESULTS: Volunteer navigators and older persons reported Nav-CARE was easy to use, feasible and acceptable. The majority of older persons agreed or strongly agreed that they were satisfied with the navigation services (100%; 8/8), that navigation services were important to them (87%; 7/8), that they would recommend the program to someone else (87%; 7/8), and would participate in the program again (75%; 6/8). Similarly, volunteer navigators reported 100% (9/9) satisfaction with the program, 100% (9/9) would recommend it to others, and 67% (6/8) would participate again. CONCLUSIONS: Nav-CARE appears to be a feasible, acceptable, and satisfactory program for older persons with serious illness and volunteer navigators.

Sustainability of a rural volunteer program (Nav-CARE): a case study.

INTRODUCTION: Nav-CARE (Navigation: Connecting, Accessing, Resourcing and Engaging) is an evidence-based program that was implemented over 1 year in a rural community in western Canada. Nav-CARE uses volunteers who are trained in navigation to facilitate access to resources and provide social support to older persons living in the community with serious illness such as cancer, congestive heart failure and chronic obstructive pulmonary disease. Following implementation in which Nav-CARE was found to be feasible, acceptable and have positive outcomes, Nav-CARE was integrated into the local community-based hospice society program. Two years after a successful implementation, it continued to be sustainable in this same rural community. The purpose of this study was to explore the key factors that facilitated the sustainability of Nav-CARE in a rural hospice society. METHODS: A qualitative single case study design was used with data from several sources collected at different times: (a) pre-implementation, (b) Nav-CARE program implementation (1-year time period), (c) immediately after implementation and (d) 6 months to 2 years after implementation). Data included individual interviews with community stakeholders (n=9), the study volunteer coordinator (n=1), hospice society coordinator (n=1) and Nav-CARE volunteers (n=9). It also included meeting notes of volunteer debriefing sessions and meetings with stakeholders planning for sustainability of Nav-CARE that were held during the 1-year implementation. Data were organized using the i-PARIHS (integrated Promoting Action on Research Implementation in Health Services) framework (a well known implementation framework). Data were analyzed using Yin's qualitative case study approach. RESULTS: The findings from this case study suggested that key factors in facilitating sustainability of a rural community intervention (Nav-CARE) were the organizational context (inner context) and facilitation (facilitator and facilitation processes). Additionally, the inner context included the fit of Nav-CARE with the organization's priorities, the absorptive capacity of the organization, and organizational structure and mechanisms to integrate Nav-CARE into current programs. The hospice society was well established and supported by the rural community. The role of the facilitator and the planned facilitation processes (training of volunteer navigators, ongoing support and planning events) were key factors in the sustainability of the Nav-CARE program. The findings found that the formal role of the facilitator in the implementation and sustainability of Nav-CARE in this rural community required skills and knowledge, as well as ongoing mentorship. As well, the facilitation process for Nav-CARE included formal sustainability planning meetings involving stakeholders. CONCLUSION: Using the i-PARIHS framework and a case study approach, key factors for facilitating sustainability were identified. The role of the facilitator, the facilitation processes and the characteristics of the organizational context were important for the sustainability of Nav-CARE. Future research is needed to understand how to assess and enhance an organization's sustainability capacity and the impact of additional facilitator training and mentoring. This study provides a foundation for future research and adds to the discussion of the issue of sustainability of evidence-based interventions in rural community settings.

A mixed-method evaluation of a volunteer navigation intervention for older persons living with chronic illness (Nav-CARE): findings from a knowledge translation study.

BACKGROUND: Volunteer navigation is an innovative way to help older persons get connected to resources in their community that they may not know about or have difficulty accessing. Nav-CARE is an intervention in which volunteers, who are trained in navigation, provide services for older persons living at home with chronic illness to improve their quality of life. The goal of this study was to evaluate the impact of Nav-CARE on volunteers, older persons, and family participating across eight Canadian sites. METHODS: Nav-CARE was implemented using a knowledge translation approach in eight sites using a 12- or 18-month intervention period. A mixed method evaluation was used to understand the outcomes upon older person engagement; volunteer self-efficacy; and older person, family, and volunteer quality of life and satisfaction with the intervention. RESULTS: Older persons and family were highly satisfied with the intervention, citing benefits of social connection and support, help with negotiating the social aspects of healthcare, access to cost-effective resources, and family respite. They were less satisfied with the practical help available for transportation and errands. Older persons self-reported knowledge of the services available to them and confidence in making decisions about their healthcare showed statistically significant improvements (P < .05) over 12-18 months. Volunteers reported satisfaction with their role, particularly as it related to building relationships over time, and good self-efficacy. Volunteer attrition was a result of not recruiting older persons in a timely manner. There was no statistically significant improvement in quality of life for older persons, family or volunteers from baseline to study completion. CONCLUSIONS: Findings from this study support a developing body of evidence showing the contributions volunteers make to enhanced older person and family well-being in the context of chronic illness. Statistically significant improvements were documented in aspects of client engagement. However, there were no statistically significant improvements in quality of life scores even though qualitative data illustrated very specific positive outcomes of the intervention. Similar findings in other volunteer-led intervention studies raise the question of whether there is a need for targeted volunteer-sensitive outcome measures.

Study protocol: pragmatic randomized control trial of my tools 4 care- in care (MT4C-in care) a web-based tool for family Carers of persons with dementia residing in long term care.

BACKGROUND: When a family member resides in long term care facility (LTC), family carers continue caregiving and have been found to have decreases in mental health. The aim of My Tools 4 Care - In Care (an online intervention) is to support carers of persons living with dementia residing in LTC through transitions and increase their self-efficacy, hope, social support and mental health. This article comprises the protocol for a study to evaluate My Tools 4 Care-In Care (MT4C-In Care) by asking the following research questions: 1) Is there a 2 month (immediately post-intervention) and 4 month (2 months post-intervention) increase in mental health, general self-efficacy, social support and hope, and decrease in grief and loneliness, in carers of a person living with dementia residing in LTC using MT4C-In CARE compared to an educational control group? 2) Do carers of persons living with dementia residing in LTC perceive My Tools 4 Care- In Care helps them with the transitions they experience? METHODS: This study is a single blinded pragmatic mixed methods randomized controlled trial. Approximately 280 family carers of older persons (65 years of age and older) with dementia residing in LTC will be recruited for this study. Data will be collected at three time points: baseline, 2 month, and 4 months. Based on the feasibility study, we hypothesize that participants using MT4C-In Care will report significant increases in hope, general self-efficacy, social support and mental health quality of life, and significant decreases in grief and loneliness from baseline, as compared to an educational control group. To determine differences between groups and over time, generalized estimating equations analysis will be used. Qualitative descriptive analysis will be used to further evaluate MT4C-In Care and if it supports carers through transitions. DISCUSSION: Data collection will begin in four Canadian provinces (Alberta, Manitoba, Ontario and Saskatchewan) in February 2020 and is expected to be completed in June 2021. The results will inform policy and practice as MT4C-In Care can be revised for local contexts and posted on websites such as those hosted by the Alzheimer Society of Canada. TRIAL REGISTRATION: NCT04226872 ClinicalTrials.gov Registered 09 January 2020 Protocol Version #2 Feb 19, 2020.

Transcultural Validation of the French Version of the Modified Edmonton Symptom Assessment Scale: The ESAS12-F.

Background: Cancer-related physical symptoms can decrease patients' overall quality of life and are often underdiagnosed. The Edmonton Symptom Assessment Scale (ESAS) is widely used in palliative care for cancer patients to easily assess cancer patients' symptoms. It has been often modified, adding symptoms and explanations, and translated into many languages. The European Association of Palliative Care research team developed a database, which included the modified 12-item ESAS-r as the symptom assessment tool. Objectives: The purpose of this study was to achieve the translation and cross-cultural validation in French of the 12-item ESAS-r, the ESAS12-F. Design: A French version of the ESAS-r was developed using a standardized forward and backward translation method. Patients completed the ESAS12-F and provided feedback on the translation. Setting/Subjects: Forty-five patients with advanced cancer, followed by the palliative care team from the Lyon Sud University Hospital in France, were recruited. Results: Eighty-nine percent of patients considered the ESAS easy to understand. They highlighted some concerns more about the tool itself than the translation: the time line "now," the difficulty to quantify a symptom in a numerical evaluation. Some items (sleep and appetite) needed to be reread and for some others (digestive and psychological symptoms, and well-being) to be reordered in the questionnaire. Conclusion: The ESAS12-F is well accepted and easy to use for the cancer patients. The next step is to carry out a psychometric validation of the definitive version of the ESAS12-F.

Clinical characteristics of patients having single versus multiple patient encounters within a palliative care programme.

OBJECTIVE: The objective of this study was to describe the clinical characteristics of patient initial presentations, and to explore associations between patients' clinical characteristics at initial presentation and number of encounters (single vs multiple) to an integrated palliative care programme. METHODS: This was a retrospective study of a decedent cohort of 2922 patient initial presentations to the Edmonton Zone Palliative Care Program (EZPCP). Data included age, gender, setting of encounter, diagnosis, Edmonton Symptom Assessment System, CAGE, Mini-Mental Status Examination, Palliative Performance Status, Edmonton Classification System for Cancer Pain and time to death. RESULTS: On initial presentation to the EZPCP, the mean age was 73 (SD 14 years), with 1358 (46%) being female, and the majority having a cancer diagnosis (n=2376, 81%), the most common of which was gastrointestinal primary (n=681, 29%). In univariate analyses, patients with younger age (<60), higher palliative performance status (>40%), a malignant diagnosis, gastrointestinal primary or unimpaired cognition at initial presentation were significantly associated with multiple encounters with an integrated palliative care programme (p<0.05). In a multivariate regression analysis, a malignant diagnosis, longer survival, higher performance status and initial entry through acute care sites were independently associated with multiple encounters in the programme (p<0.001). CONCLUSIONS: Larger prospective studies are warranted to further elucidate the complex relationships between patient clinical characteristics, initial presentations and subsequent encounters to an integrated palliative care programme.

Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities.

BACKGROUND: Following institutionalization of a relative with Alzheimer disease and related dementias (ADRD), family carers continue to provide care. They must learn to negotiate with staff and navigate the system all of which can affect their mental health. A web-based intervention, My Tools 4 Care-In Care (MT4C-In Care) was developed by the research team to aid carers through the transitions experienced when their relative/friend with ADRD resides in a long-term care (LTC) facility. The purpose of this study was to evaluate MT4C-In Care for feasibility, acceptability, ease of use, and satisfaction, along with its potential to help decrease carer's feelings of grief and improve their hope, general self-efficacy, and health-related quality of life. METHODS: The study was a mixed-methods single-arm repeated measures feasibility study. Participants accessed MT4C-In Care over a 2-month period. Data were collected at baseline and 1 and 2 months. Using a checklist, participants evaluated MT4C-In Care for ease of use, feasibility, acceptability, and satisfaction. Measures were also used to assess the effectiveness of the MT4C-In Care in improving hope (Herth Hope Index), general self-efficacy (GSES), loss and grief (NDRGEI), and health-related quality of life (SF12v2) of participants. Qualitative data were collected at 2 months and informed quantitative findings. RESULTS: The majority of the 37 participants were female (65%; 24/37), married (73%; 27/37), and had a mean age of 63.24 years (SD = 11.68). Participants reported that MT4C-In Care was easy to use, feasible, and acceptable. Repeated measures ANOVA identified a statistically significant increase over time in participants hope scores (p = 0.03) and a significant decrease in grief (< 0.001). Although significant differences in mental health were not detected, hope (r = 0.43, p = 0.03) and grief (r = - 0.66, p < 0.001) were significantly related to mental health quality of life. CONCLUSION: MT4C-In Care is feasible, acceptable, and easy to use and shows promise to help carers of family members with ADRD residing in LTC increase their hope and decrease their grief. This study provides the foundation for a future pragmatic trial to determine the efficacy of MT4C-In Care. TRIAL REGISTRATION: ClinicalTrials.gov NCT03571165. June 30, 2018 (retrospectively registered).

Feasibility Study of an Online Intervention to Support Male Spouses of Women With Breast Cancer.

PURPOSE/OBJECTIVES: To evaluate the feasibility of a web-based psychosocial supportive intervention entitled Male Transition Toolkit (MaTT). 
. DESIGN: Randomized, controlled trial, mixed methods, concurrent feasibility design.
. SETTING: Edmonton, a large metropolitan city in western Canada.
. SAMPLE: 40 dyads (women with breast cancer and their spouse).
. METHODS: Male spouse participants in the treatment group accessed MaTT for four weeks. Data on hope, quality of life, general self-efficacy, and caregiver guilt were collected at baseline and days 14, 28, and 56. Quality-of-life data were collected from the women with breast cancer at each time period. Qualitative data were collected from the usual care group in an open-ended interview and from the treatment group in an evaluation survey on days 14 and 28.
. MAIN RESEARCH VARIABLES: Feasibility, as measured by the MaTT questionnaire. 
. FINDINGS: Evaluation survey scores indicated that MaTT was feasible, acceptable, and easy to use. Male spouse quality-of-life scores were not significantly different between groups. As guilt scores decreased, male spouses' quality of life increased. 
. CONCLUSIONS: The findings provided useful information to strengthen MaTT and improve study design. Additional research is needed to determine its efficacy in improving male spouses' quality of life. 
. IMPLICATIONS FOR NURSING: MaTT is a feasible intervention. Future research should evaluate MaTT with larger samples as well as determine the amount of time participants used MaTT.

Continuous Palliative Sedation for Existential Distress? A Survey of Canadian Palliative Care Physicians' Views.

BACKGROUND: Palliative sedation can be used for refractory symptoms during end-of-life care. However, continuous palliative sedation (CPS) for existential distress remains controversial due to difficulty determining when this distress is refractory. OBJECTIVES: The aim was to determine the opinions and practices of Canadian palliative care physicians regarding CPS for existential distress. METHODS: A survey focusing on experience and views regarding CPS for existential distress was sent to 322 members of the Canadian Society of Palliative Care Physicians. RESULTS: Eighty-one surveys returned (accessible target, 314), resulting in a response rate of 26%. One third (31%) of the respondents reported providing CPS for existential distress. On a 5-point Likert-type scale, 40% of participants disagreed, while 43% agreed that CPS could be used for existential distress alone. CONCLUSION: Differing opinions exist regarding this complex and potentially controversial issue, necessitating the education of health-care professionals and increased awareness within the general public.

A metasynthesis study of family caregivers' transition experiences caring for community-dwelling persons with advanced cancer at the end of life.

BACKGROUND: Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. AIMS: To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. DESIGN: Sandelowski and Barroso's methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. DATA SOURCES: Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. RESULTS: A total of 72 studies were included in the metasynthesis. Family caregivers experience a "life transition" whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. CONCLUSION: The findings provide a framework to guide the development of supportive programs and future research.

What is stable pain control? A prospective longitudinal study to assess the clinical value of a personalized pain goal.

BACKGROUND: A universal consensus regarding standardized pain outcomes does not exist. The personalized pain goal has been suggested as a clinically relevant outcome measure. AIM: To assess the feasibility of obtaining a personalized pain goal and to compare a clinically based personalized pain goal definition versus a research-based study definition for stable pain. DESIGN: Prospective longitudinal descriptive study. MEASURES: The attending physician completed routine assessments, including a personalized pain goal and the Edmonton Classification System for Cancer Pain, and followed patients daily until stable pain control, death, or discharge. Stable pain for cognitively intact patients was defined as pain intensity less than or equal to desired pain intensity goal (personalized pain goal definition) or pain intensity ⩽3 (Edmonton Classification System for Cancer Pain study definition) for three consecutive days with <3 breakthroughs per day. SETTING/PARTICIPANTS: A total of 300 consecutive advanced cancer patients were recruited from two acute care hospitals and a tertiary palliative care unit. RESULTS: In all, 231/300 patients (77%) had a pain syndrome; 169/231 (73%) provided a personalized pain goal, with 113/169 (67%) reporting a personalized pain goal ⩽3 (median = 3, range = 0-10). Using the personalized pain goal definition as the gold standard, sensitivity and specificity of the Edmonton Classification System for Cancer Pain definition were 71.3% and 98.5%, respectively. For mild (0-3), moderate (4-6), and severe (7-10) pain, the highest sensitivity was for moderate pain (90.5%), with high specificity across all three categories (95%-100%). CONCLUSION: The personalized pain goal is a feasible outcome measure for cognitively intact patients. The Edmonton Classification System for Cancer Pain definition closely resembles patient-reported personalized pain goals for stable pain and would be appropriate for research purposes. For clinical pain management, it would be important to include the personalized pain goal as standard practice.

Development of a French Version of the Edmonton Symptom Assessment System-Revised: A Pilot Study of Palliative Care Patients' Perspectives.

BACKGROUND: The Edmonton Symptom Assessment System-revised (ESAS-r) is a nine-item self-report symptom intensity tool developed for palliative care patients, with the option of adding a 10th patient-specific symptom. Due to growing international uptake, the ESAS-r has been translated into different languages. There has not been agreement, however, regarding a standard process for translation into multiple languages, which also includes patients' perspectives. OBJECTIVE: The purpose of this study was to develop a French version of the ESAS-r, using a standardized translation protocol, and to obtain palliative care patients' perspectives regarding this translated tool. DESIGN: We developed a French version of the ESAS-r, using a standard translation method, involving both professional translators (n = 2) and bilingual palliative care experts (n = 3). Fifteen Francophone participants recruited from palliative care sites in two urban centers in Canada completed the ESAS-r and provided feedback on the translation, in the presence of a trained interviewer. Descriptive statistics and thematic analysis were used to analyze the quantitative and qualitative data, respectively. SETTING/SUBJECTS: Fifteen Francophone participants were recruited from palliative care sites in two urban centers in Canada. MEASUREMENTS: Participants completed the ESAS-r and provided feedback on the translation in the presence of a trained interviewer. Descriptive statistics and thematic analysis were used to analyze the quantitative and qualitative data, respectively. RESULTS: Based on participants' concerns, translations for four of the nine symptoms were revised: drowsiness, nausea, lack of appetite, and shortness of breath. Concerns expressed for three additional symptoms (depression, anxiety, and well-being) were related to overall difficulty rating these symptoms, not specific to the translation. CONCLUSION: The French version of the ESAS-r is a credible tool for symptom assessment in Francophone patients. The study findings provide a vital step in the development of a standardized translation protocol, including patients' perspectives, which can be applied to other languages.

Family Caregiver Participation in Palliative Care Research: Challenging the Myth.

CONTEXT: Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members. OBJECTIVES: To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care. METHODS: Three hundred sixteen of 322 participants (98.1%), who completed an FC support intervention through a stepped-wedge cluster trial (Australia, 2012-2015), participated in a postintervention telephone interview on their study experiences, which included quantitative and qualitative questions. RESULTS: Ninety-seven percent of both the control (n = 89) and intervention (n = 227) groups perceived positive aspects, whereas almost all did not report any negative aspects of being involved in this research; the majority rated their involvement as very/extremely beneficial (control 77%; intervention 83%). The qualitative analysis generated three major themes: "intrapersonal-inward directed"; "connection with others-outward directed"; and "interpersonal-participant-researcher relationship." CONCLUSIONS: This study provided quantitative and qualitative evidence challenging the myth. In contrast to health professional concerns, FCs appreciated the opportunity to participate and benefited from their involvement in research. Research protocols need to be specifically tailored to the needs of family caregivers and include debriefing opportunities for all participants at the end of intervention studies, regardless of which group they have been assigned. Strategies that facilitate health professionals' understanding of the research and risk benefits may help reduce gatekeeping and improve the validity of research findings.

The psychosocial experiences of older palliative patients while participating in a Living with Hope Program.

OBJECTIVE: Several studies have reported the effectiveness of a variety of psychosocial interventions in increasing levels of hope in palliative care patients. The experience of palliative patients while participating in these interventions is unknown. Understanding these experiences would provide a rich understanding of how the interventions work to foster hope. The purpose of the present study was to describe the psychosocial processes that participants with advanced cancer receiving palliative care experienced when taking part in a Living with Hope Program (LWHP). METHOD: In the context of a study evaluating the LWHP, data were collected from 13 dyads (persons with advanced cancer and their caregivers) at two timepoints (one week apart). A thematic qualitative analysis of 52 open-ended audiotaped interviews was conducted that focused on the psychosocial processes that occurred during the LWHP. RESULTS: The average age of palliative participants was 67 (SD = 6.6) and of their family caregivers 61 years of age (SD = 13.9). A thematic analysis suggested that the participants experienced the following psychosocial processes while participating in the LWHP: (1) reminiscing, (2) leaving a legacy, (3) positive reappraisal, and (4) motivational processes. These processes are the mechanisms by which the LWHP fosters the positive outcomes of increasing hope and improving quality of life. As well, the finding of motivational processes suggested that the LWHP may also increase life satisfaction, which is an outcome of motivational processes. Significance of the results: The findings from our study underscore the importance of uncovering the psychosocial processes through which the LWHP works to foster hope. They will assist in making revisions to the intervention that will increase its effectiveness, as well as providing a better understanding of hope in persons with advanced cancer.

Developing Navigation Competencies to Care for Older Rural Adults with Advanced Illness.

Navigators help rural older adults with advanced illness and their families connect to needed resources, information, and people to improve their quality of life. This article describes the process used to engage experts - in rural aging, rural palliative care, and navigation - as well as rural community stakeholders to develop a conceptual definition of navigation and delineate navigation competencies for the care of this population. A discussion paper on the important considerations for navigation in this population was developed followed by a four-phased Delphi process with 30 expert panel members. Study results culminated in five general navigation competencies for health care providers caring for older rural persons and their families at end of life: provide patient/family screening; advocate for the patient/family; facilitate community connections; coordinate access to services and resources; and promote active engagement. Specific competencies were also developed. These competencies provide the foundation for research and curriculum development in navigation.