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.

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.

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.

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.

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.

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.

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.

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.

'All I can do is help': Transition experiences of male spouse caregivers of women with breast cancer.

The transition experience of male spouses of women with breast cancer is largely unknown. Ninety-one open-ended surveys of male spouses were analyzed using thematic analysis to understand the transition experience of this population when their partners were diagnosed and treated for breast cancer. While 10 participants indicated they experienced no changes, the majority experienced changes to their roles and relationships, their mental health, and their share of household work. Spouses took on a supportive role. They adjusted to the changes they faced by proactively becoming aware of their situation, fostering a positive approach, and being actively involved in their partners' experiences. Implications for nurses entail recognizing the role of the spouse, as well as facilitating access to reliable information and support networks.

Health care providers' use and knowledge of the Edmonton Symptom Assessment System (ESAS): is there a need to improve information and training?

OBJECTIVES: The ESAS is a clinical symptom assessment tool developed for patients receiving palliative care for pain and symptom control. Recent studies have indicated that patients have difficulty understanding terminology and correct use of the ESAS, and that they appreciate the presence of a health care provider (HCP) to assist with ESAS completion. As appropriate assessment translates into effective treatment, it is important that HCPs have a good understanding of the tool. The purpose of this study was to assess HCPs' use, knowledge, and training needs of the ESAS. METHODS: One hundred ninety-three HCPs in palliative care and chronic pain, who used the ESAS, were invited to participate in a survey. RESULTS: The response rate was 43 % (n = 83), with 62 % nurses, 26 % physicians, and 12 % other specialties. Most participants were palliative care specialists (79 %). The majority (77 %) had a good understanding of the ESAS terms. Knowledge problems included distinguishing tiredness and drowsiness (25 %), interpreting shortness of breath as a combination of subjective and objective symptoms (19 %), not indicating current symptom level (14 %), and reverse scoring of well-being (13 %) and appetite (9 %). Reported challenges were misinterpretation of some ESAS terms, assessing patients with impaired communication, and lack of time and reliability of caregiver assessments. Participants offered suggestions regarding how their knowledge and use of the ESAS could be improved. CONCLUSIONS: Suggestions for improving ESAS administration and training were to include term definitions and examples of how to ask about terms that might be challenging for patients. Furthermore, initial and ongoing training sessions might help to clarify issues with the tool.

Hope and connection: the experience of family caregivers of persons with dementia living in a long term care facility.

BACKGROUND: Hope is a psychosocial resource that is essential for the psychological, spiritual, and physical well-being of family members caring for persons with dementia. A significant positive relationship has been found between hope and well-being in family caregivers of persons with dementia living in the community. However, the hope experience of family caregivers of persons living with dementia in long-term care (LTC) facilities has not been explored. The purpose of this study was to explore the hope experience of family caregivers of persons with dementia living in a LTC facility. METHODS: Twenty-three open-ended face to face interviews were conducted with 13 family caregivers of residents with dementia in a LTC facility. Family was broadly defined to include relatives and friends. Seven of these participants also reflected on their hope in diaries over a two week period. Interview transcripts and journal texts were analyzed using Thorne's interpretive description approach. RESULTS: The over-arching theme was "hope and connection". Participants lost hope and felt despair when they perceived they were unable to connect with their family member in the LTC facility. They regained their hope when a connection could be made. Several sub-themes were identified including: accepting where we are, living life in the moment, believing in something, standing together, and balancing dual worlds. CONCLUSIONS: Hope was important and essential for family caregivers of persons with dementia residing in a LTC facility. The overarching theme of "hope and connection" underscores the importance of maintaining relationships and connection between family members and the person in LTC. Given the paucity of hope research conducted within this population, the study findings provide a foundation for future research.

Cancer patients' experiences of the early phase of individual counseling in an outpatient psycho-oncology setting.

Distress is a common and substantive problem associated with the invasive nature of cancer. Psychosocial interventions can alleviate distress and enhance quality of life, with a wealth of research demonstrating benefits of group interventions. Less is known, however, about the value of individual psychological counseling for cancer patients. The goal of our study was to understand patients' experiences of attending an individual psycho-oncology counseling service in a comprehensive cancer center in Canada. We conducted six focus groups to ask patients about their perceived benefits of the early phase of counseling. The 23 participants were predominantly women living in urban areas who sought counseling for emotional and coping difficulties. Using inductive analysis, we identified four interrelated themes: distress and need for support, challenges to service access, service benefits, and the therapeutic encounter. The therapeutic encounter formed a core component of patients' experiences, highlighting the benefits of specific therapeutic interventions and processes.

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.

The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: development and refinement.

OBJECTIVE: The Edmonton Symptom Assessment System (ESAS) has been proposed as one element of a distress screening strategy in cancer patients. It consists of 11-point numerical rating scales for self-report of nine common symptoms of cancer, with a 10th scale for a patient-specific symptom. The ESAS has undergone widespread adoption internationally for clinical, research and administrative purposes. Despite its rapid uptake, validity evidence has lagged behind, and concerns have been raised about feasibility and usefulness. The objective of this paper is to provide a synthesis of a program of research focusing on the psychometric properties of the ESAS. METHODS: We describe and discuss a series of three ESAS studies undertaken by our group: (i) a review of ESAS validation studies (1991-2006); (ii) a think-aloud study conducted in 20 advanced cancer patients; and (iii) a prospective multicenter study conducted in 160 patients in different palliative care settings, comparing the ESAS with a revised version (ESAS-r). RESULTS: The review identified 13 articles focusing on gathering reliability and/or validity evidence; the need to standardize the ESAS and conduct further validation research was apparent. The think-aloud study elucidated the complex cognitive processes by which patients arrive at symptom ratings and areas of potential difficulty in understanding and completing the ESAS. The multicenter study demonstrated that the ESAS-r was significantly easier for patients to understand. CONCLUSIONS: Overall, our findings support consideration of the ESAS and its successor, the ESAS-r, for use in distress screening in cancer patients. Areas for future research will be presented. Copyright © 2011 John Wiley & Sons, Ltd.

Hope, older adults, and chronic illness: a metasynthesis of qualitative research.

AIM: To report a metasynthesis review of qualitative research studies exploring the hope experience of older persons with chronic illness. BACKGROUND: Hope is a psychosocial resource used by persons to deal with their chronic illness experience. DATA SOURCES: A comprehensive search of multiple databases for studies of the hope experience (published 1980-2010) was completed. Inclusion criteria were included qualitative studies of the hope experience of persons (all genders; mean age 60 years and older), with chronic illnesses, and publications in any language and country. REVIEW METHODS: The metasynthesis followed four procedural steps: (a) comprehensive search, (b) quality appraisal, (c) classification of studies, and (d) synthesis of findings. RESULTS: Twenty studies were included in the metasynthesis representing research from a variety of different countries and populations with differing medical diagnoses. The characteristics of hope included: (a) dynamic or situational nature, (b) multiple co-existing types, (c) objects that were desirable realistic possibilities, (d) future-focused, and (e) involvement of choice/will. Hope as 'transcending possibilities' represented the integration of two processes of transcendence and positive reappraisal. Reaching inwardly and outwardly and finding meaning and purpose were sub-processes of transcendence, whereas re-evaluating hope in light of illness and finding positive possibilities were sub-processes of positive reappraisal. CONCLUSIONS: The concept of hope may differ for older adults vs. younger adults in its interaction with suffering. Resources for hope are both internal and external. Finding meaning and positive reappraisal are important strategies to help older adults with chronic illness maintain their hope.

Referral patterns and psychosocial distress in cancer patients accessing a psycho-oncology counseling service.

OBJECTIVE: One in three cancer patients will experience significant psychosocial distress, yet less than 10% will seek formal counseling. Who are the patients accessing counseling and what are their presenting needs? The purpose of this study was to identify referral patterns and psychosocial distress in cancer patients newly referred to a psycho-oncology counseling service. METHODS: Consecutive new referrals were tracked over 1 year (n=361). On initial visit, 145 patients completed a demographic survey, Brief Symptom Inventory-18 (BSI-18), Cancer Coping Questionnaire and Medical Outcomes Study Social Support Survey. RESULTS: Approximately one in five newly referred patients never attended counseling, with a significant representation of men (p=0.016) and lung cancer patients (p=0.010). Of 361 referrals, 295 patients attended initial counseling, 259 were approached, and 145/259 (56%) completed the survey. Most were women (79%), urban-dwelling (73%), diagnosed with non-advanced cancer (72%), well-educated (68%) and married (56%); average age of 52 years (SD=12.3). Two most common diagnoses were breast (36%) and genitourinary (14%) cancers. A total of 59% were significantly distressed (BSI-18 global severity index T-score⩾63) with less available social support than non-distressed patients (p=0.022). Coping strategy use did not differ significantly between distressed and non-distressed groups. Two of five patients were not significantly distressed. CONCLUSIONS: Most cancer patients attending counseling are well-educated urban residing women, with significant psychosocial distress. Further research is needed to better understand barriers and appropriate screening methods for accessing counseling, as well as the needs of men, advanced Copyright © 2010 John Wiley & Sons, Ltd.

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.