Safeguarding survival: Older persons with multiple chronic conditions' unplanned readmission experiences: A mixed methods systematic review.

AIMS AND OBJECTIVES: The aim of this study was to create a holistic understanding of the psychosocial processes of older persons with multiple chronic conditions' experience with unplanned readmission experiences within 30 days of discharge home and identify factors influencing these psychosocial processes. DESIGN: Mixed methods systematic review. DATA SOURCES: Six electronic databases (Ovid MEDLINE (R) All 1946-present, Scopus, CINAHL, Embase, PsychINFO and Web of Science). REVIEW METHODS: Peer-reviewed articles published between 2010 and 2021 and addressed study aims (n = 6116) were screened. Studies were categorised by method: qualitative and quantitative. Qualitative data synthesis used a meta-synthesis approach and applied thematic analysis. Quantitative data synthesis used vote counting. Data (qualitative and quantitative) were integrated through aggregation and configuration. RESULTS: Ten articles (n = 5 qualitative; n = 5 quantitative) were included. 'Safeguarding survival' described older persons' unplanned readmission experience. Older persons experienced three psychosocial processes: identifying missing pieces of care, reaching for lifelines and feeling unsafe. Factors influencing these psychosocial processes included chronic conditions and discharge diagnosis, increased assistance with functional needs, lack of discharge planning, lack of support, increased intensity of symptoms and previous hospital readmission experiences. CONCLUSIONS: Older persons felt more unsafe as their symptoms increased in intensity and unmanageability. Unplanned readmission was an action older persons required to safeguard their recovery and survival. RELEVANCE TO CLINICAL PRACTICE: Nurses play a critical role in assessing and addressing factors that influence older persons' unplanned readmission. Identifying older persons' knowledge about chronic conditions, discharge planning, support (caregivers and community services), changes in functional needs, intensity of symptoms and past readmission experiences may prepare older persons to cope with their return home. Focusing on their health-care needs across the continuum of care (community, home and hospital) will mitigate the risks for unplanned readmission within 30 days of discharge. REPORTING METHOD: PRISMA guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution due to design.

Nigerian Health Care Providers and Diabetes Self-Management Support: Their Perspectives and Practices.

Nigeria struggles to reframe its traditional acute-care disease approach to health care to accommodate rising needs for chronic disease care. This interpretive descriptive study explored Nigerian healthcare providers' (HCPs) perspectives, experiences, and practices related to self-management support (SMS). Observational and experiential data were gathered from 19 HCPs at two urban hospitals in Southeastern Nigeria (seven physicians, four nurses, five dietitians/nutritionists, and three health educators). There were four themes: (a) compliance-oriented medical model, (b) SMS as advice, informal counseling, and education, (c) navigating the sociocultural terrain, and (d) workarounds. Nigerian HCPs perspectives and SMS practices were characterized by attempts to foster compliance with healthcare instructions within a traditional biomedical model. Participants enhanced patient support using specific strategies to bypass structural system obstacles. These findings demonstrate the need to reevaluate the current understanding of SMS in Nigeria and its practice.

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.

Optimizing the integration of family caregivers in the delivery of person-centered care: evaluation of an educational program for the healthcare workforce.

BACKGROUND: While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. OBJECTIVE: This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. METHODS: This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers' learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). RESULTS: Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = - 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners' knowledge and confidence. CONCLUSION: Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.

Coping strategies and quality of life among Thai family carers of community-dwelling persons living with dementia: A cross-sectional study.

AIMS: To examine the association between coping strategies and quality of life (QOL) among Thai family carers of persons living with dementia. DESIGN: A descriptive correlational quantitative design. METHODS: Data were collected between January 2021 and April 2021. A multi-pronged approach for recruitment was used. Participants completed measures assessing carer demographic characteristics, coping styles, QOL, perceived stress and perceived social support. Hierarchical multiple regression analysis was used to determine the association between types of coping strategies used and QOL scores, adjusting for carer characteristics and carers' stress and social support. RESULTS: There were 86 participants (mean age 52.84 years), and the majority were female (87.2%). After adjusting for covariates, hierarchical multiple regression revealed that only positive emotion-focused coping demonstrated a statistically significant association with total QOL scores. Problem-focused coping and negative emotion-focused coping were not significantly associated with total QOL scores of Thai family carers of persons living with dementia. CONCLUSION: Positive emotion-focused coping was associated with improved QOL scores. This finding supports the use of positive emotion-focused coping in Thai family carers of persons living with dementia, which potentially could improve the QOL of this population. IMPACT: It is essential to differentiate between positive and negative emotion-focused coping to generate valid estimates of the association between coping and QOL. Nurses should encourage carers to use positive emotion-focused coping strategies as these strategies were found to be helpful in enhancing carers' QOL.

How do inner and outer settings affect implementation of a community-based innovation for older adults with a serious illness: a qualitative study.

BACKGROUND: Implementing community-based innovations for older adults with serious illness, who are appropriate for a palliative approach to care, requires developing partnerships between health and community. Nav-CARE is an evidence-based innovation wherein trained volunteer navigators advocate, facilitate community connections, coordinate access to resources, and promote active engagement of older adults within their communities. Acknowledging the importance of partnerships between organizations, the aim of our study was to use the Consolidated Framework for Implementation Research (CFIR) to explore organizational (Inner Setting) and community or health system level (Outer Setting) barriers and facilitators to Nav-CARE implementation. METHODS: Guided by CFIR, qualitative individual and group interviews were conducted to examine the implementation of Nav-CARE in a Canadian community. Participants were individuals who delivered or managed Nav-CARE research, and stakeholders who provided services in the community. The Framework Method was used to analyse the data. Particular attention was paid to the host organization's external network and community context. RESULTS: Implementation was affected by several inter-related CFIR domains, making it difficult to meaningfully separate key findings by only inner and outer settings. Thus, findings were organized into themes informed by CFIR, that cut across other domains and incorporated inductive findings: intraorganizational perceptions of Nav-CARE; public and healthcare professionals' perceptions of palliative care; interorganizational partnerships and relationships; community and national-level factors that should have facilitated Nav-CARE implementation; and suggested changes to Nav-CARE. Themes demonstrated barriers to implementing Nav-CARE, such as poor organizational readiness for implementation, and public and health provider perceptions palliative care was synonymous with fast-approaching death. CONCLUSIONS: Implementation science frameworks and theories commonly focus on assessing implementation of innovations within facilities and changing behaviours of individuals within that organizational structure. Implementation frameworks need to be adapted to better assess Outer Setting factors that affect implementation of community-based programs. Although applying the CFIR helped uncover critical elements in the Inner and Outer Settings that affected implementation of Nav-CARE. Our study suggests that the CFIR could expand the Outer Setting to acknowledge and assess organizational structures and beliefs of individuals within organizations external to the host organization who impact successful implementation of community-based innovations.

Unplanned readmission for older persons: A concept analysis.

AIM: The purpose of this concept analysis is to define and analyse the concept of unplanned readmission to hospital for older persons. DESIGN: Review the literature and analyse the concept of unplanned readmission. METHOD: Guided by Walker and Avant's eight-stage method of concept analysis, four databases (Ovid MEDLINE, Scopus, CINAHL, and Embase) were searched between 1946 and 2020 for empirical studies focused on older persons with multiple chronic conditions, experiences or perspectives and unplanned readmission. A total of 34 articles (10 quantitative, 17 qualitative, three mixed methods), one concept analysis and three historical articles were included. RESULTS: An unplanned readmission is an experience, process and event. The proposed definition of unplanned readmission is an older person's need for acute care treatment for an urgent or emergent health crisis that has occurred after a previous hospitalization(s). Unplanned readmission is characterized by the attributes of older persons' previous hospitalization(s), the urgent or emergent nature of the older persons' health and the older persons' need for acute care hospital services to resolve their health crisis. CONCLUSION: Unplanned readmission is a complex concept that is different from planned and emergency visits/admissions and readiness for discharge. These findings provide a link for understanding unplanned readmission as a consequence of discharge readiness. Analysing this concept supports the need for older persons to seek unplanned readmission for acute care treatment of urgent and emergent health crisis, reduces the blame that older persons may feel from questions related to preventability, and stresses the need to include older persons' experiences in the development and expansion of nursing theory, interventions and current understandings of unplanned readmission.

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.

Person-centered care for family caregivers of people living with dementia: Co-designing an education program for the healthcare workforce.

BACKGROUND: Recent research recommends the healthcare workforce receive competency-based education to identify, assess, support and partner with family-caregivers [FCGs} across the care trajectory.[1 2] Although the risk of FCG anxiety, burden, and loneliness to FCG's wellbeing is widely documented, typically education has been targeted towards FCG's to increase their care skills rather to educate healthcare providers to support FCG's caregiving and wellbeing.[3] OBJECTIVES: We will present the co-design process used to create a competency-based education program for the healthcare workforce that ensures a person-centered focus on FCGs and introduce our Health Workforce Caregiver-Centered Care Education focused on dementia. Co-design is the act of creating with stakeholders to ensure the results meet their needs and are usable. PROJECT DESCRIPTION: We began by coining the concept "caregiver-centered care," defining it as: a collaborative working relationship between families and healthcare providers aimed at supporting FCGs in their caregiving role, decisions about services, care management, and advocacy [4 5] . From this definition, and working with multi-level interdisciplinary stakeholders we designed[6] and validated[7] a Caregiver-Centered Care Competency Framework in a Modified Delphi Process. Stakeholders (n= 101) including FCGs, health providers, policy makers, community organizations, research team, script writer, and educational designers then used effective practices for dementia education for the health workforce [8-11] to co-design the first or 'foundational' level of a Caregiver Centered Care education program. RESULTS: Teaching and learning resources include six competency-aligned educational modules with videos and interactive exercises that encourage reflection. With the COVID-19 pandemic, we moved the education online (caregivercare.ca). In the first two months online, November 9, 2020-January 9, 2021, 352 healthcare providers completed the education. To date, learners' qualitative evaluations have been positive, "Very good information for professionals working with caregivers; especially relevant to homecare, geriatricians, allied health, and others working within the Seniors' Health realm. Engaging format that really evokes empathy for caregivers." DISCUSSION: We continue to use mixed methods to evaluate the Caregiver-Centered Care Education, for acceptability and effectiveness, in five care contexts (primary, acute, home, supportive living, long-term care). CONCLUSION: We expect that our education will support caregiver-centered care in all settings providing dementia-related care.

"I Need Presence and a Listening Ear": Perspectives of Spirituality and Spiritual Care Among Healthcare Providers in a Hospice Setting in Pakistan.

This paper aims to describe how healthcare providers perceived spirituality and spiritual care while caring for dying patients and their families in a hospice setting in Karachi, Pakistan. Using a qualitative interpretive description design, individual in-depth interviews were conducted among healthcare providers. Thematic analysis approach was used for data analysis. Spirituality and spiritual care were perceived as shared human connections, relating to each other, acts of compassion, showing mutual respect while maintaining dignity in care and empowering patients and families. Developing spiritual competency, self-awareness, training and education, and self-care strategies for healthcare providers are essential components promoting spiritual care in a hospice setting.

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.

Implementing volunteer-navigation for older persons with advanced chronic illness (Nav-CARE): a knowledge to action study.

BACKGROUND: Nav-CARE is a volunteer-led intervention designed to build upon strategic directions in palliative care: a palliative approach to care, a public health/compassionate community approach to care, and enhancing the capacity of volunteerism. Nav-CARE uses specially trained volunteers to provide lay navigation for older persons and family living at home with advanced chronic illness. The goal of this study was to better understand the implementation factors that influenced the utilization of Nav-CARE in eight diverse Canadian contexts. METHODS: This was a Knowledge to Action study using the planned action cycle for Nav-CARE developed through previous studies. Participants were eight community-based hospice societies located in diverse geographic contexts and with diverse capacities. Implementation data was collected at baseline, midpoint, and endpoint using qualitative individual and group interviews. Field notes of all interactions with study sites were also used as part of the data set. Data was analyzed using qualitative descriptive techniques. The study received ethical approval from three university behavioural review boards. All participants provided written consent. RESULTS: At baseline, stakeholders perceived Nav-CARE to be a good fit with the strategic directions of their organization by providing early palliative support, by facilitating outreach into the community and by changing the public perception of palliative care. The contextual factors that determined the ease with which Nav-CARE was implemented included the volunteer coordinator champion, organizational capacity and connection, the ability to successfully recruit older persons, and the adequacy of volunteer preparation and mentorship. CONCLUSIONS: This study highlighted the importance of community-based champions for the success of volunteer-led initiatives and the critical need for support and mentorship for both volunteers and those who lead them. Further, although the underutilization of hospice has been widely recognized, it is vital to recognize the limitations of their capacity. New initiatives such as Nav-CARE, which are designed to enhance their contributions to palliative care, need to be accompanied by adequate resources. Finally, this study illustrated the need to think carefully about the language and role of hospice societies as palliative care moves toward a public health approach to care.

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.

Characteristics and unmet care needs of unbefriended residents in long-term care: a qualitative interview study.

Objectives: This study explored the impact of being 'unbefriended' for residents in Canadian long-term care (LTC) homes. Residents are 'unbefriended' if they lack decision-making capacity and family or friends to act as their legal representative. Research suggests that unbefriended individuals may have unmet needs and experience poor quality of care due to their limited social support. Our specific objectives were to identify resident characteristics, their unmet care needs, and implications for quality of care and quality of life.Methods: We conducted semi-structured interviews with 39 LTC staff and 3 public guardians. Interviews took place between March 2017 and September 2017. All interviews were audio recorded and transcribed verbatim. We analyzed the interviews using content analysis.Results: We found two groups of unbefriended LTC residents: (1) individuals with no living conjugate partner or children and (2) individuals with histories of substance use, homelessness, and estrangement from family. Unbefriended residents have no one to help meet needs for social interaction and engagement or to assist in purchasing needed personal items and uninsured services. LTC staff report significant care issues with unbefriended residents at end of life, including more aggressive behaviors and inappropriate care practices.Conclusion: Our findings demonstrate alarming issues in quality of life and quality of care for unbefriended residents. Unbefriended residents had limited social support and difficulty accessing even basic personal items. We discuss implications for policy and practice.

Qualitative Research and Its Importance in Adapting Interventions.

Systematic approaches are essential when adapting interventions, so the adapted intervention is feasible, acceptable, and holds promise for positive outcomes in the new target population and/or setting. Qualitative research is critical to this process. The purpose of this article is to provide an example of how qualitative research was used to guide the adaptation a web-based intervention for family carers of persons with dementia residing in long-term care (LTC) and to discuss challenges associated with using qualitative methodologies in this regard. Four steps are outlined: (a) choosing an intervention to adapt, (b) validating the conceptual framework of the intervention, (c) revising the intervention, and (d) conducting a feasibility study. Challenges with respect to decontextualization and subjective reality are discussed, with suggestions provided on how to overcome them. The result of this process was a feasible and acceptable web-based intervention to support family carers of persons with dementia residing in LTC.

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.

Social disparities and symptom burden in populations with advanced cancer: specialist palliative care providers' perspectives.

Disparities in access to palliative care services for populations with social disparities have been reported in Western countries. Studies indicate that these populations tend to report higher symptom distress than other population groups. We need to further investigate how social disparities influence symptom burden to improve symptom relief in these populations. PURPOSE: To examine the perspectives of specialist palliative care providers concerning the relationship between social disparities and symptom burden in populations with advanced cancer. METHODS: Two sequential qualitative studies that followed a combination of interpretive and critical methodologies. The interpretive approach was outlined by van Manen's hermeneutic phenomenology while the critical component was informed by the works of Paulo Freire. Participants involved two specialist palliative care teams from a large acute care hospital and a large cancer center in Western Canada. Participants included 11 palliative care providers including registered nurses, nurse practitioners, physicians, and pharmacists. RESULTS: Participants perceived that social conditions that might aggravate symptom burden included low income, low education, lack of social support, language barriers, and rurality. The relationship between income and symptom burden reflected diverse views. Participants identified populations prone to complex symptom burden including homeless individuals, Indigenous people, people with a history of addictions, and people with mental health or psychosocial issues. CONCLUSION: Participants perceived that social disparities may increase symptom complexity in populations with advanced cancer. Participants did not identify ethnicity and gender as influencing symptom burden. Further research is needed to examine the interactions of social disparities, patient individuality, and symptom burden.

Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers.

PURPOSE: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. METHODS: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. RESULTS: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. CONCLUSION: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis.

BACKGROUND: A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period. OBJECTIVE: This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse. METHODS: Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants' hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage. RESULTS: Of the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction). CONCLUSIONS: Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access. TRIAL REGISTRATION: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387.

Web-Based Intervention for Family Carers of Persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial.

BACKGROUND: My Tools 4 Care (MT4C) is a Web-based intervention that was developed based on the transitions theory. It is an interactive, self-administered, and portable toolkit containing six main sections intended to support carers of community-living persons with Alzheimer's disease and related dementia and multiple chronic conditions through their transition experiences. OBJECTIVE: The objective of our study was to evaluate the effectiveness of MT4C with respect to increasing hope, self-efficacy, and health-related quality of life in carers of community-living older persons with Alzheimer's disease and related dementia and multiple chronic conditions. METHODS: A multisite, pragmatic, mixed methods, longitudinal, repeated-measures, randomized controlled trial was conducted between June 2015 and April 2017. Eligible participants were randomized into either treatment (MT4C) or educational control groups. Following baseline measures, carers in the treatment group received 3 months of password-protected access to MT4C. Trained research assistants collected data from participants via phone on hope (Herth Hope Index [HHI]), self-efficacy (General Self-Efficacy Scale), and health-related quality of life (Short Form-12 item [version 2] health survey; SF-12v2) at baseline, 1, 3, and 6 months. The use and cost of health and social services (Health and Social Services Utilization Inventory) among participants were measured at baseline, 3, and 6 months. Analysis of covariance was used to identify group differences at 3 months, and generalized estimating equations were used to identify group differences over time. RESULTS: A total of 199 carers participated in this study, with 101 participants in the treatment group and 98 in the educational control group. Of all, 23% (45/199) participants withdrew during the study for various reasons, including institutionalization or death of the person with dementia and lack of time from the carer. In the treatment group, 73% (74/101) carers used MT4C at least once over the 3-month period. No significant differences in the primary outcome measure (mental component summary score from the SF-12v2) by group or time were noted at 3 months; however, significant differences were evident for HHI-factor 2 (P=.01), with higher hope scores in the treatment group than in the control group. General estimating equations showed no statistically significant group differences in terms of mental component summary score at all time points. Attrition and the fact that not all carers in the treatment group used MT4C may explain the absence of statistically significant results for the main outcome variable. CONCLUSIONS: Despite no significant differences between groups in terms of the primary outcome variable (mental component score), the significant differences in terms of one of the hope factors suggest that MT4C had a positive influence on the lives of participants. TRIAL REGISTRATION: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 (Archived by Webcite at http://www.webcitation.org/708oFCR8h).