Palliative Professionals' Experiences of Receiving Gratitude: A Transformative and Protective Resource.

Providing palliative care can be both challenging and rewarding. It involves emotionally demanding work and yet research shows that burnout is lower than in other fields of health care. Spontaneous expressions of gratitude from patients and family members are not uncommon and are highly valued. This study explored the experience of Spanish palliative professionals who received expressions of gratitude from their patients and families. A phenomenological approach was used to better understand the role of receiving gratitude in participants' lives. Interviews were transcribed verbatim and a phenomenological approach to analysis was undertaken using macro-thematic and micro-thematic reflection. Two team members independently engaged in this reflection with an inductive approach. The analysis was shared and discussed at periodic meetings to identify the key themes and sub-themes of the gratitude experience. Ten palliative professionals were interviewed. Participants engaged in a process of recognizing, internalizing, and treasuring the expressions of gratitude which they then used for reflection and growth. These expressions were a powerful and deeply meaningful resource that the palliative professionals revisited over time. Receiving expressions of gratitude invited a stronger sense of the value of one's self and one's work that was motivational and protective, particularly during challenging times.

Short Graphic Values History Tool for decision making during serious illness.

OBJECTIVES: To develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness. METHODS: The development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before-after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1-2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one's values. RESULTS: In the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (-6.7 points, 95% CI -11.1 to -2.3, p=0.003; 0-100 scale; N=100), with the most improvement seen in the values clarity subscale (-10.0 points, 95% CI -17.3 to -2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1-5 scale; N=61). CONCLUSIONS: The Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.

Effect of "Speak Up" educational tools to engage patients in advance care planning in outpatient healthcare settings: A prospective before-after study.

BACKGROUND: Tools for advance care planning (ACP) are advocated to help ensure patient values guide healthcare decisions. Evaluation of the effect of tools introduced to patients in clinical settings is needed. OBJECTIVE: To evaluate the effect of the Canadian Speak Up Campaign tools on engagement in advance care planning (ACP), with patients attending outpatient clinics. Patient involvement: Patients were not involved in the problem definition or solution selection in this study but members of the public were involved in development of tools. The measurement of impacts involved patients. METHODS: This was a prospective pre-post study in 15 primary care and two outpatient cancer clinics. The outcome was scores on an Advance Care Planning Engagement Survey measuring Behavior Change Process on 5-point scales and Actions (0-21-point scale) administered before and six weeks after using a tool, with reminders at two or four weeks. RESULTS: 177 of 220 patients (81%) completed the study (mean 68 years of age, 16% had cancer). Mean Behavior Change Process scores were 2.9 at baseline and 3.5 at follow-up (mean change 0.6, 95% confidence interval 0.5 to 0.7; large effect size of 0.8). Mean Action Measure score was 3.7 at baseline and 4.8 at follow-up (mean change 1.1, 95% confidence interval 0.6-1.5; small effect size of 0.2). PRACTICAL VALUE: Publicly available ACP tools may have utility in clinical settings to initiate ACP among patients. More time and motivation may be required to stimulate changes in patient behaviors related to ACP.

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings.

PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.

Fractured Care: A Window Into Emergency Transitions in Care for LTC Residents With Complex Health Needs.

Objective: For long-term care (LTC) residents, transfers to emergency departments (EDs) can be associated with poor health outcomes. We aimed to describe characteristics of residents transferred, factors related to decisions during transfer, care received in emergency medical services (EMS), ED settings, outcomes on return to LTC, and times of transfer segments along the transition. Method: We prospectively followed 637 transitions to an ED in British Columbia and Alberta, Canada, over a 12-month period. Data were captured through an electronic Transition Tracking Tool and interviews with health care professionals. Results: Common events triggering transfer were falls (26.8%), sudden change in condition (23.5%), and shortness of breath (19.8%). Discrepancies existed between reason for transfer, EMS reported chief complaint, and ED diagnosis. Many transfers resulted in resident return directly to LTC (42.7%). Discussion: Avoidable transfers may put residents at risk of receiving inappropriate care. Standardized communication strategies to highlight changes in resident condition are warranted.

People With Advanced Cancer: The Process of Living Well With Awareness of Dying.

Literature suggests that it is possible to live well with advanced cancer but little is known about the process. In this article, we present a secondary analysis of experiences of living with advanced cancer (n = 22) that refines the theory of "Living Well with Chronic Illness" for a different context and population. The refined theory explains the experience of living well with advanced cancer illuminating a five-phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience, and reconstructing life. These five phases revolve around the core concept of Awareness of Dying, which varied from awareness of the possibility of dying, to accepting the possibility of dying, to acceptance that "I am dying." Awareness of Dying led to a focus on living well with advanced cancer and movement towards living a life rather than living an illness.

Development and Implementation of the Family Caregiver Decision Guide.

Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG). The Guide entails four steps: thinking about the current caregiving situation, imagining how the caregiving situation may change, exploring available options, and considering best options if caregiving needs change. The FCDG was based on available evidence and was developed and refined using focus groups, cognitive interviewing, and a feasibility and acceptability study. Finally, an interactive version of the Guide was created for online use ( https://www.caregiverdecisionguide.ca ). In this article, we describe the development, evaluation, and utility of the FCDG.

Factors Affecting Palliative Care Development in Africa: In-Country Experts' Perceptions in Seven Countries.

CONTEXT: Factors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC. OBJECTIVES: To identify key factors affecting PC development in African countries from in-country PC experts' perspectives. METHODS: About 16 PC experts from seven African countries undertook semistructured interviews on PC development in their respective countries. An interpretive description approach was adopted, with data analyzed using constant comparison. RESULTS: Emerged themes included drivers, strengths, challenges, and aspirations for PC development in Africa. Drivers included advocates and pioneering organizations, HIV/AIDS, culture of caregiving, and the World Health Assembly PC resolution. Strengths included community health workers, the special role of nurses, diversity of services, and short training courses. Challenges included lack of PC education; lack of standardization in implementation; limited availability of and/or accessibility to morphine; poverty and disease burden; and lack of funding for PC. Aspirations included integration of PC, specialization in PC, nurse prescribing, and strong partnerships with Ministries of Health. Factors already highlighted in the literature were only briefly discussed. CONCLUSION: The key factors underpinning PC development in the seven countries contributed to the beginnings of PC in Africa, fueled by advocates who built on existing strengths to maximize opportunities. However, the current approach is at high risk in terms of its sustainability, and strategies for maximizing existing resources and growing infrastructure support are needed moving forward.

Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients.

PURPOSE: The purpose of this study was to explore the acceptability, applicability, and understandability of a promising advance care planning (ACP) web-based resource for use with oncology patients, and determine whether revisions to the website would be necessary before implementation into oncology care. The resource is called PREPARE ( www.prepareforyourcare.org ) and it had not been tested for use within oncology, but had previously been shown to influence the readiness of older, community-dwelling adults to engage in ACP behaviors. METHODS: This qualitative descriptive study included participants receiving cancer medications and one participant on watchful waiting post-chemotherapy (n = 21). Data were collected via cognitive interviewing, followed by a brief semi-structured interview to gather a meaningful account of the participants' experience with PREPARE. Content analysis resulted in a comprehensive summary of what participants liked and did not like about the resource, as well as suggestions for change. RESULTS: Overall, participants agreed PREPARE was acceptable, applicable, and understandable for cancer patients. A small number of participants had difficulty with the life-limiting language found within the website and this requires follow-up to determine whether the language causes distress or disengagement from ACP. These findings extend our understanding of barriers to engagement in ACP that appear unique to cancer patients receiving active treatment. CONCLUSIONS: Results indicated that PREPARE is a reflective, capacity-building ACP resource that was acceptable, applicable, and understandable for use in oncology. These findings offer direction for both research and practice.

Families Living Well With Chronic Illness: The Healing Process of Moving On.

Chronic illness is a global issue of escalating importance. While prevention, control, and management of chronic disease are imperative, it is also critical to shift our focus away from illness and toward living. In particular, attention needs to focus on living well despite illness. This article reports a grounded theory study with 43 members from 17 families who perceived they were managing well with serious chronic illnesses. The theory that captures the circular, iterative healing process of moving on is comprised of five phases: the fight, accepting, living with the chronic illness, sharing the experience, and reconstructing life. Families moved on through the process and moved on over time toward healing where they lived well alongside chronic illness. Family issues associated with each phase are identified as well as implications for health care providers. The theory provides a way of conceptualizing wellness in illness that supports patient- and family-centered care.

Measuring Advance Care Planning: Optimizing the Advance Care Planning Engagement Survey.

CONTEXT: A validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of behaviors. However, concise surveys are needed. OBJECTIVES: The objective of this study was to validate shorter versions of the survey. METHODS: The survey included 57 process (e.g., readiness) and 25 action items (e.g., discussions). For item reduction, we systematically eliminated questions based on face validity, item nonresponse, redundancy, ceiling effects, and factor analysis. We assessed internal consistency (Cronbach's alpha) and construct validity with cross-sectional correlations and the ability of the progressively shorter survey versions to detect change one week after exposure to an ACP intervention (Pearson correlation coefficients). RESULTS: Five hundred one participants (four Canadian and three US sites) were included in item reduction (mean age 69 years [±10], 41% nonwhite). Because of high correlations between readiness and action items, all action items were removed. Because of high correlations and ceiling effects, two process items were removed. Successive factor analysis then created 55-, 34-, 15-, nine-, and four-item versions; 664 participants (from three US ACP clinical trials) were included in validity analysis (age 65 years [±8], 72% nonwhite, 34% Spanish speaking). Cronbach's alphas were high for all versions (four items 0.84-55 items 0.97). Compared with the original survey, cross-sectional correlations were high (four items 0.85; 55 items 0.97) as were delta correlations (four items 0.68; 55 items 0.93). CONCLUSION: Shorter versions of the ACP Engagement Survey are valid, internally consistent, and able to detect change across a broad range of ACP behaviors for English and Spanish speakers. Shorter ACP surveys can efficiently measure broad ACP behaviors in research and clinical settings.

Oncologist Experience Implementing Goals of Care Discussions in Everyday Ambulatory Oncology Practice: Implications for Education.

Despite evidence that Goals of Care (GOC) discussions should occur early in the disease trajectory, the majority occur close to end of life. In a pilot, oncologists routinely initiated GOC discussions with all patients in their everyday ambulatory practice. Following the pilot, 9 of 12 eligible oncologists participated in semi-structured interviews about their experiences. Analysis resulted in the identification of seven principles of good GOC discussions embedded in the oncologists' interviews, four barriers to engaging in GOC discussions and foundational education needs. Participants believed that the appropriate trigger for a GOC discussion is a diagnosis of advanced cancer, not simply a diagnosis of cancer, and supported the importance of selective and strategic targeting of GOC discussions. The findings have informed the development of an education-based model for culture change within a province-wide cancer care system.

Caring at home until death: enabled determination.

PURPOSE: The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death. METHOD: A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death. RESULTS: Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person. CONCLUSIONS: Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.

Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study.

OBJECTIVES: To assess the feasibility, acceptability and clinical sensibility of a novel survey, the advance care planning (ACP) Engagement Survey, in various healthcare settings. SETTING: A target sample of 50 patients from each of primary care, hospital, cancer care and dialysis care settings. PARTICIPANTS: A convenience sample of patients without cognitive impairment who could speak and read English was recruited. Patients 50 and older were eligible in primary care; patients 80 and older or 55 and older with clinical markers of advanced chronic disease were recruited in hospital; patients aged 19 and older were recruited in cancer and renal dialysis centres. OUTCOMES: We assessed feasibility, acceptability and clinical sensibility of the ACP Engagement Survey using a 6-point scale. The ACP Engagement Survey measures ACP processes (knowledge, contemplation, self-efficacy and readiness) on 5-point Likert scales and actions (yes/no). RESULTS: 196 patients (38-96 years old, 50.5% women) participated. Mean (±SD) time to administer was 48.8±19.6 min. Mean acceptability scores ranged from 3.2±1.3 in hospital to 4.7±0.9 in primary care, and mean relevance ranged from 3.5±1.0 in hospital to 4.9±0.9 in dialysis centres (p<0.001 for both). The mean process score was 3.1±0.6 and the mean action score was 11.2±5.6 (of a possible 25). CONCLUSIONS: The ACP Engagement Survey demonstrated feasibility and acceptability in outpatient settings but was less feasible and acceptable among hospitalised patients due to length. A shorter version may improve feasibility. Engagement in ACP was low to moderate.

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.

Trust, Health Care Relationships, and Chronic Illness: A Theoretical Coalescence.

Trust in health care relationships is a key ingredient of effective, high-quality care. Although the indirect influence of trust on health outcomes has long been recognized, recent research has shown that trust has a direct effect on outcomes of care. Trust is important. However, the research on trust is disparate, organized around differing definitions, and primarily focused on patients' trust in physicians. Morse's method of theoretical coalescence was used to further develop and elaborate a grounded theory of the evolution of trust in health care relationships, in the context of chronic illness. This middle-range theory offers a clear conceptual framework for organizing and relating disparate studies, explaining the findings of different studies at a higher conceptual level, and identifying gaps in research and understanding. In addition, the grounded theory is relevant to practice.

A Motivational, Gender-Sensitive Smoking Cessation Resource for Family Members of Patients With Lung Cancer.

PURPOSE/OBJECTIVES: To gather feedback on an innovative gender-sensitive booklet that draws on emotional connections and relationship factors to motivate smoking cessation. RESEARCH APPROACH: Qualitative, descriptive. SETTING: Six provinces in Canada. PARTICIPANTS: 30 family members of patients with lung cancer who were currently smoking or had recently quit. METHODOLOGIC APPROACH: Parallel booklets for women and men were developed using language and images to emphasize family relationships and gender considerations to motivate smoking cessation. Participants were provided with the women's and men's versions of the resource, and they were asked to review the gender-specific version of the booklet that was relevant to them. Semistructured telephone interviews were conducted, and transcriptions were analyzed for themes. FINDINGS: Three themes were evident in the data, including "new perspectives. CONCLUSIONS: A gender-sensitive approach that focuses on relationship factors represents an acceptable way to engage relatives of patients with lung cancer in discussions to support smoking cessation. INTERPRETATION: Approaches to supporting smoking cessation among relatives of patients diagnosed with lung cancer should draw on positive relationship bonds and caring connections to motivate cessation.

Nurses' experiences of caring for the older adult in the emergency department: a focused ethnography.

The purpose of this study was to explore nurses' experience of caring for the older adult within the ED. This focused ethnographic study used a combination of semi-structured interviews and non-participant observation. Seven registered nurses participated, detailing their experiences of caring for the older adult in the ED. Data were transcribed verbatim and analyzed thematically. Findings revealed three themes: the culture, which focused on priority setting and throughput of patients, lack of fit between the older adult and the ED, and managing lack of fit. Nurses relied on a default orientation of priority setting, recognizing this put the older adult at risk of substandard care. Lack of fit was accentuated by the need to 'puzzle through' atypical presentations of many older adults. It is concluded that consideration needs to be given on how to mitigate lack of fit and how to support nurses to give the care the older adult requires.

Gender, smoking and tobacco reduction and cessation: a scoping review.

Considerations of how gender-related factors influence smoking first appeared over 20 years ago in the work of critical and feminist scholars. This scholarship highlighted the need to consider the social and cultural context of women's tobacco use and the relationships between smoking and gender inequity. Parallel research on men's smoking and masculinities has only recently emerged with some attention being given to gender influences on men's tobacco use. Since that time, a multidisciplinary literature addressing women and men's tobacco use has spanned the social, psychological and medical sciences. To incorporate these gender-related factors into tobacco reduction and cessation interventions, our research team identified the need to clarify the current theoretical and methodological interpretations of gender within the context of tobacco research. To address this need a scoping review of the published literature was conducted focussing on tobacco reduction and cessation from the perspective of three aspects of gender: gender roles, gender identities, and gender relations. Findings of the review indicate that there is a need for greater clarity on how researchers define and conceptualize gender and its significance for tobacco control. Patterns and anomalies in the literature are described to guide the future development of interventions that are gender-sensitive and gender-specific. Three principles for including gender-related factors in tobacco reduction and cessation interventions were identified: a) the need to build upon solid conceptualizations of gender, b) the importance of including components that comprehensively address gender-related influences, and c) the importance of promoting gender equity and healthy gender norms, roles and relations.

The Male Face of Caregiving: A Scoping Review of Men Caring for a Person With Dementia.

The purpose of this scoping review was to examine the empirical evidence published since 2007 on men as family caregivers of persons with dementia. Searches were conducted on Academic Search Complete, Ageline, CINAHL, Embase, Medline, PsychINFO, Social Work Abstracts, and Web of Science using database-specific controlled (i.e., MeSH terms) vocabulary related to dementia, men, and caregiving. Studies published in English between 2007 and 2012 that provided evidence of the experiences of male family caregivers of persons with dementia were included in the review. A total of 30 articles were selected for inclusion. Studies were grouped into three major themes for review: men's experiences of caregiving, relational factors, and outcomes of caregiving. The reviewed studies build on and support previous findings related to stress, burden, accessing services, and the importance of relational factors to men's caregiving experiences. However, there is a need for a framework that explains these findings in relation to masculinities. Such a framework would provide the necessary unifying context for a more powerful explanatory account. Furthermore, there appears to be the potential for great benefit in fully linking men's caregiver research to men's health issues as a means to articulate strategies to sustain the health and well-being of men caregivers. This seems especially relevant in light of the closing gender gap in life expectancy, which will ultimately see many men providing direct care to their partners.