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Table 3 Included Studies

From: Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

Study ID; theory contribution; search Aim/purpose of the article Type of article & methodology Outcomes assessed or qualitative study information Results/findings from study Level of Evidence
Aoun, 2015 [34];
Theories 1&2, initial systematic search
To investigate the impact of using a carer support needs assessment tool to identify and address support needs in end of life home care, on family caregiver outcomes Quantitative Study. Stepped-wedge cluster non-randomised trial Caregiver strain and distress as measured by subscales of the Family Appraisal of Caregiving Questionnaire (FACQ-PC). Secondary outcomes were caregiver mental and physical wellbeing as measured by SF-12 and caregiver workload as measured by caregiver assistance with Activities of Daily Living Using the carer support needs assessment tool was associated with a significant reduction in Caregiver Strain, an improvement in the SF12 Mental Component Score, (it was not statistically significant after adjusting for covariates, p = 0.67). Both groups showed a worsening on the SF12 Physical Component Score (PCS) over the two time points, but these differences were not significant Experimental research, Level 3 controlled trial
Bainbridge, 2016 [35];
Theories 1&2; initial systematic search
To determine which components of in-home end-of-life care programs are most commonly associated with better quality, effectiveness, or cost outcomes than usual care Review of systematic reviews. Review methodology Components of in-home end-of-life care programs are most commonly associated with better quality, effectiveness, or cost outcomes than usual care On average, each program contained 11 components; the six most common were linkage with acute care, multidisciplinary nature, end-of-life expertise and training, holistic care, pain and symptom management, and professional psychosocial support. Linkage, to around-the-clock availability, and customized care planning were most common to the nine interventions for which a significant cost reduction was reported. Programs that included linkage with other community providers or primary care tended to have positive outcomes in a high proportion of studies Descriptive research, Level 1 systematic review
Bischoff, 2013 [36];
Theories 1&2; initial systematic search
To examine the relationship between advance care planning and the quality of end-of-life care, as measured by the rates of care consistent with pre-existing quality metrics Quantitative Study. Combined administrative cost data with large cohort data-Medicare data with the Health and Retirement Study cohort Quality of end-of-life care Advance care planning is associated with decreased in-hospital death and increased hospice use.
All components of advance care planning are associated with the end-of-life care received
Outcome research, Level 2 pre-existing group comparison
Blackford, 2012 [37];
Theory 2; second systematic search
To develop a service evaluation tool for an advance care planning model implemented in community palliative care Mixed methods Study. Multisite action research approach with three community palliative care services located in Victoria, Australia Qualitative and quantitative data collection used to develop the Advance Care Planning-Service Evaluation Tool (ACP-SET). This tool was designed to assist community-based palliative care services in Australia to establish a sustainable system-wide ACP Model relevant to their local context The ACP-SET Advance Care identified advance care planning progress over time across three stages of Establishment, Consolidation and Sustainability within previously established Model domains of governance, documentation, practice, education, quality improvement and community engagement. The tool was used either as a peer-assessment or self-assessment tool to assist services to track their implementation progress as well as plan further change strategies. The ACP-SET was useful to managers in community palliative care. It provided a clear outline of service progress, level of achievement and provided clear direction for planning future changes. The ACP-SET enables practitioners in community palliative care to monitor, evaluate and plan quality improvement of their advance care planning model to improve end-of-life care Descriptive research, Level 2–3 multiple case study; Qualitative research, Level 2 group qualitative research with more rigor
Blackford, 2013 [38];
Theory 1; second systematic search
The paper is associated with Blackford 2012. It presents findings of a study that aimed to address the question ‘How can palliative care nurses initiate and facilitate an ACP conversation in community palliative care practice?’ Mixed methods Study. Multisite action research approach with three community palliative care services located in Victoria, Australia Baseline audit of staff and clients; analysed relevant documents (client records, policies, procedures and quality improvement strategies) pre-implementation and post-implementation and conducted nine key informant interviews The audit identified that none of the nurses regularly spoke to clients about ACP. The most common reasons nurses articulated for the absence of ACP were a conviction that these discussions were the work of the social worker or counselor and the feeling that either ‘the training that they had wasn’t enough, or they just didn’t feel confident enough to bring up some of those subjects Descriptive research, Level 2–3 multiple case study; Qualitative research, Level 2 group qualitative research with more rigor
Coventry, 2005 [39];
Theory 1; purposive search
To identify and evaluate potential decision-making tools and predictor variables that might aid clinicians to determine ≤6 months survival in older, non-cancer patients Systemic review. Review methodology Identification of potential decision-making tools and predictor variables to determine ≤6 months survival in older, non-cancer patients Given the unpredictability of the nature of progressive life-threatening non- cancerous illnesses it is difficult to determine a specific cut-off point to refer patients to palliative care. Starting palliative care as early as possible, at any stage of the illness, along with curative measures would be beneficial for patients. There is a need to be aware of palliative care and commutate this with patients and their families Descriptive research, Level 1 systematic review
De Vleminck, 2013 [40];
Theories 1&2; purposive search
To identify the perceived factors hindering or facilitating General Practitioners (GP) in engaging in advance care planning with their patients about care at the end of life Systematic review. Review methodology Perceived factors hindering or facilitating GPs in engaging in advance care planning Initiation of advance care planning in general practice may be improved by targeting the practitioner’s skills, attitudes, and beliefs, but changes in health care organization and financing could also contribute. Understanding the barriers and facilitators is important to develop strategies promoting end-of-life conversations in Primary Care. For example, educational programs aiming to change attitudes or improve healthcare providers skills, and compensation policies Descriptive research, Level 1 systematic review
Dingley, 2016 [41];
Theory 2; initial systematic search
To examine caregiver and nurse communication behaviors associated with caregiver activation during home hospice visits of patients Qualitative Study Prospective observational design Thematic analysis to develop codes for nurse communications Caregiver communication that reflected activation included demonstrating knowledge regarding the patient and carer, describing care strategies, expressing opinions regarding care, requesting explanations of care, expressing concern about the patient, and redirecting the conversation toward the patient. Nurses responded to carers by providing education, reassessing the patient and care environment, validating communications, clarifying care issues, updating/revising care, and making recommendations for future care. Nurses prompted carer activation through focused care-specific questions, open-ended questions/statements, and personal questions Qualitative research, Level 2 group qualitative studies with more rigor
Ewing 2016 [42];
Theories 1&2; initial systematic search
To examine practitioner perspectives on the impact, and mechanisms of action of the Carer Support Needs Assessment Tool in palliative home care Qualitative Study. Practitioner accounts of implementation (interviews, focus groups, reflective audio diaries) plus researcher field notes Patients’ experiences of being in receipt of the evolving and complex process of advanced care coordination within and between primary and secondary care settings in order to inform current debates on care coordination of patients toward Existing approaches to identification of carer needs were informal and unstructured. Practitioners expressed some concerns, pre-implementation, about negative impacts of the Carer Support Needs Assessment Tool on carers and expectations raised about support available. In contrast, post-implementation, the Carer Support Needs Assessment Tool provided positive impacts when used as part of a career-led assessment and support process: it made support needs visible, legitimised support for carers and opened up different conversations with carers. The mechanisms of action that enabled the Carer Support Needs Assessment Tool to make a difference were creating space for the separate needs of carer, providing an opportunity for carer to express support needs and responding to carer self-defined priorities Qualitative research, Level 2 group qualitative research with more rigor
Gallagher 2012 [43];
Theory 1; initial systematic search
To develop and evaluate a form with a brief overview of each patient’s plan of care for use in multidisciplinary team meetings and everyday clinical practice in the community Qualitative research report on how a care team used a form to communicate. Discusses the development and evaluation of a form with a brief overview of each patient’s plan of care for use in multidisciplinary team meetings and everyday clinical practice in the community Costs (of development) and evaluation feedback were used to improve the service and form Costs in team hours are outlined; feedback to improve form; data collected on care outcomes: information about individual and team workloads on a month-by-month and annual basis. Data on referral patterns, number and place of deaths, and the number of end-of-life tools being used Qualitative research, Level 4 qualitative study with a single case
Gardiner 2015 [44];
Theories 1&2; purposive search
To explore the evidence relating to transitions from curative care to palliative care Systematic review. Review methodology Review of the evidence relating to transitions to palliative care within a UK context The reviewed studies examined patients and providers experiences with regards to transition to palliative care. Findings show poor communication, mixed messages, unrealistic information resulted in patients’ unrealistic expectations (mentioned by healthcare providers) and feeling of fear and uncertainty about the palliative care. Another interesting finding is the concern about the continuity of care. All these imply the necessity of having clear communication with patients/ families, as well as interprofessional and intra-professional ones Descriptive research, Level 1 systematic review
Holdsworth, 2011 [45];
Theories 1&2; initial systematic search
To identify issues around discussing and recording preferences on place of death from the perspective of hospice patients, carers, and hospice community nurse specialists Qualitative Study. Focus group and interviews across three settings. Thematic analysis cross referenced emerging themes between all groups Important to build relationships with patients and carers, this makes it easier to talk about dying. The timing of discussions on dying was also thought to be important. The patient’s understanding of their prognosis was felt to be a precondition for the discussion by health professionals. Patients may not be aware of the practicalities around planning care, but having a discussion focused on service provision and availability may be a useful and acceptable step toward a discussion on their end-of-life wishes Qualitative research, Level 2 group qualitative studies with more rigor
Howard, 2018 [46];
Theories 1&2; purposive search
To identify barriers to and enablers of advance care planning perceived by physicians and allied health professionals in primary care Quantitative Study. Cross-sectional, self-administered survey in Ontario, Alberta, and British Columbia, Canada The primary outcome was rating of the magnitude of each barrier by respondents using a 7-point scale from 0 to 6 (not at all, very little, a little, a moderate amount lot, a great deal, an extreme amount) Physicians rated 4 barriers with a mean score of 3 (a moderate amount) or higher: insufficient time, inability to electronically transfer the patient’s advance care plan, decreased interaction with patients owing to transfer of care, patients’ difficulty understanding the limitations and complications of life- sustaining therapies. Allied Health Professional identified 12 barriers with a mean score of 3 or higher. Three were the same as for physicians: Inability to electronically transfer the patient’s advance care plan, decreased interaction with patients owing to transfer of care, patients’ difficulty understanding the limitations and complications of life-sustaining therapies. They also rated a lack of knowledge of ACP significantly higher compared with physicians (P < .001), and rated lack of time significantly lower (P < .001). In the qualitative comments five themes emerged to overcome barriers: public engagement, health care provider attitudes, creating capacity for primary care providers, integration of ACP into the workflow, and system and policy support Descriptive research, Level 2 correlational study and Qualitative research, Level 2 group qualitative study with more rigor
Jacobsen, 2017 [47];
Theories 1&2; purposive search
To describe a dual framework that focuses on living well while acknowledging the possibility of dying to help outpatient clinicians working with seriously ill patients hold both possibilities Theoretical article based dialectical behaviour therapy and acceptance/commitment therapy that includes individual case studies. This article describes how trained clinicians can use a dual framework to help patients navigate a developmental process in which patients maintain a focus on living well while simultaneously learning to consider and talk more explicitly about the possibility of dying They discuss a dual framework and offer a definition, then they describe (1) how to start using the dual framework with patients, (2) how to use the framework to help patients define for themselves what it means to live well, and (3) how to use the framework to gently encourage patients to acknowledge and tolerate discussions about the possibility of dying The article describes the importance of building rapport, communication and providing a supportive environment for seriously ill patients to acknowledge their conditions, help them have a personalized definition of living well, acknowledge of the possibility of dying and being prepared for the future that developing an ACP could be one of those preparations. This stepwise framework helps clinicians start off and maintain difficult conversations with patients. Starting to Use the Dual Framework involves two steps: First, clinicians encourage a patient swinging between optimistic hopes and realism to consider both possibilities nearly simultaneously. In the second step, once the clinician has linked optimistic hopes with the illness, the clinician encourages the patient to expand his or her hopes to include living well. The subtle shift from pure optimism to living well allows the patient to be future oriented and hopeful for a possibly achievable outcome. Over time, the clinician and patient work together to define better how to live well Descriptive research, Level 4 individual case studies
Johnston, 2009 [16];
Theory 1; purposive search
To find out what is known about how people experiencing end of life care manage their illness themselves, in the advanced stages of their disease Systematic Review. Review methodology Synthesized evidence o what is known about how people experiencing end of life care manage their illness themselves, in the advanced stages of their disease Three main themes were identified from the literature that formed the outline of the literature review; interventions for end of life care; self-care behaviours used by patients; factors that prevent patients to self-care Descriptive research, Level 1 systematic review
Jones 2014 [48];
Theories 1&2; purposive search
To explore providers’ opinions about adoption, implementation and maintenance of a patient decision aids (PtDA) designed for patients and families facing serious illness Qualitative Study. Focus group data using an inductive interpretive approach to explore patterns and preliminary themes in the data They analyzed provider and patient focus group data using an inductive, team-based, interpretive approach to explore patterns and preliminary themes in the data. The study examined the perceptions of physicians and patients about PtDA as a tool to improve shared decision making. The findings showed a gap between patients and non-palliative care clinicians: “Clinicians were afraid the tool could be seen as a ‘death message’, abandonment and/or ‘giving up’ on the part of the provider”, but patients found it a useful tool that should be introduced to them earlier rather than later, “never too early”. Their findings indicate patients expect their provider needs to be better informed and make decisions when they are still well. Patients indicated that there needs to be an effective communication strategy about end-of-life throughout the community. The article’s findings sugget promoting interpersonal communication skills, community awareness, and knowledge and use of community resources Qualitative research, Level 2 group qualitative research with more rigor
Kelley 2013 [49];
Theory 1; initial systematic search
To describe and organize caregiver pain management challenges faced by home hospice caregivers of cancer patients Qualitative Study. Content analysis of secondary data Recordings of caregiver interviews, to describe pain management issues The six major themes identified in the analysis included Caregiver-Centric Issues, Caregiver Medication Skills and Knowledge Issues, End-of-Life Symptom Knowledge Issues, Caregiver Medication Skills and Knowledge Issues, End-of-Life Symptom Knowledge Issues, Communication and Teamwork Issues, Organizational Skill Issues, and Patient-Centric Issues Qualitative research, Level 3 group qualitative with less rigor
Kramer, 2013 [50];
Theory 1; initial systematic search
To understand what social-workers do and their roles in providing end-of-life care to low-income older adults with multiple comorbid chronic conditions in a community- based managed care program, from multiple stakeholder perspectives (i.e., older adults, family caregivers, team members, and social workers themselves) Mixed Methods Study. Multimethod longitudinal case study Survey reports of needs addressed by social workers for deceased older adults, focus groups with interdisciplinary team members, and in-depth interviews with older adults and their family caregivers. Thematic conceptual matrix was developed to detail distinctive social work roles that address divergent needs of older adults, family, and team members Distinctive perceptions of social workers’ roles were identified for the different stakeholder groups (i.e., older adults, family caregivers, team members, and social workers). Older adults identified seven primary roles that social workers have in helping them: ensure that basic needs are met; provide meaningful caring relationship; complete organization tasks; help make informed decisions; prepare for future and for death; tackle problems; and watch over older adult. Three primary roles that social workers were perceived to have in helping the family were: provide information, provide emotional support, and take burden off. Family members acknowledged all of the roles reported by the older adult, but they identified six additional roles in helping the older adult (i.e., provide intellectual and social stimulation, address grief and bereavement, provide emotional support, facilitate transitions, facilitate independence, and serve as central care mangers), and three additional roles that social workers play in helping the family (i.e., facilitate transitions, facilitate family communication, and prepare family for future and for death). Family members reported tremendous appreciation and trust they felt in reliance on social workers who had cultivated meaningful, long-term caring relation- ships with the elder Qualitative research, Level 2 group qualitative research with more rigor
Le, 2017 [51];
Theory 1; initial systematic search
To determine General Practitioner (GP) needs when providing home-based palliative care in collaboration with existing palliative care services Quantitative Study. Online survey Outcomes were to determine knowledge, skills and confidence of GPs in providing community-based palliative care Of the 56 respondents, 82% reported that they were involved in palliative management of at least one cancer patient in the previous year. A significant number of GPs (31%) lacked confidence in providing this care because of patient complexity, inadequate training and insufficient resources. Other barriers included poor communication from specialists and treating teams. Factors facilitating provision of home-based palliative care were community palliative care services and links to hospital-based palliative care teams Descriptive research, Level 2 correlational study
Linderholm, 2010 [52];
Theory 1; initial systematic search
To explore how the family/friend caregiver of a dying relative in palliative home care experienced their caring role and support during the patient’s final illness and after death Qualitative Study. A hermeneutic approach was used to analyze the data Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data The findings revealed that being a family/friend caregiver was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The family/friend caregiver felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals Qualitative research, Level 2 group qualitative research with more rigor
Lum, 2017 [53];
Theories 1&2; purposive search
To explore whether participation in an Advance Care Planning- Group Visit (ACP-GV) intervention for older adults increased documentation filed within the health care system of either surrogate decision maker(s) or goals for medical care in an ACP document compared with before the intervention Mixed Methods Study. The ACP-GV intervention was integrated into existing workflows of primary care clinics. Older adults (> 65 years) in primary care participated in a 2-session ACP-GV intervention that promoted group dynamics, peer-based learning, and goal setting. … facilitated by a physician and social worker pair who used a facilitators’ guide to conduct a semi-structured group interaction Charts were reviewed at baseline, 3 months, and 12 months for documentation of decision makers and ACP forms. Patients’ reasons for participating was described through analysis of transcripts The ACP-GV intervention significantly increased ACP documentation of surrogate decision makers and goals for future medical care among older adults in primary care clinics Descriptive research, Level 2 correlational study and Qualitative research, Level 3 group qualitative study with less rigor
OudeEngberink, 2017 [54];
Theory 1; initial systematic search
To determine how French General Practitioners (GP) provide palliative care in at-home settings, what their needs may be, and what skills and resources they mobilize for these interventions Qualitative Study. Phenomenological questioning An interview guide including phenomenological questioning focused on the GPs lived experience in providing palliative care Offering palliative care was perceived by GPs as a moral obligation. They felt vindicated in a process rooted in the paradigm values of their profession. This study results in two key findings: firstly, their patient-centred approach facilitated the anticipatory discussions of any potential event or intervention, which the GPs openly discussed with patients and their relatives; secondly, this approach contributed to build an “end-of-life project” meeting patients’ wishes and needs. The GPs all shared the idea that the end-of-life process required human presence and recommended that at-home care be coordinated and shared by multi-professional referring teams. Theme 1: Palliative care represents another dimension of care: the transition from a disease-centred curative paradigm to a patient-centred multi-dimensional support and end-of-life quality paradigm. Theme 2: GPs’ patient-centered approach combines duty as a human being with professional and personal values. Theme 3: Discussing and anticipating potential events allows GPs to collaboratively devise “end-of-life projects” with their patients. Theme 4: Organizing human presence around the patient by sharing the caregiving amongst a multi-disciplinary team Qualitative research, Level 2 group qualitative research with more rigor
Sanders, 2008 [55];
Theories 1&2; purposive search
To examine the impact of incorporating ACP within a self-management intervention Qualitative Study. Qualitative interviews with participants enrolled in an RCT evaluation study of the Expert Patients Program versus an Expert Patients Program with for those HIV positive The principal aim of the qualitative component of the evaluation was to provide a deeper understanding of the lives of people living with a chronic condition and the complexities and implications of planning for end of life care The study indicates that people are different in their experiences with their health issues, as such in introducing new concepts such ACP one size doesn’t fit all. It is important to be aware of the context for talking about planning for death, building relationships, and providing adequate and correct information/expectations Qualitative research, Level 2 group qualitative research with more rigor
Seymour, 2010 [56];
Theories 1&2; initial systematic search
To examine how community nurses working in palliative care understand ACP and their roles within ACP and to identify factors surrounding community nurses’ implementation of ACP and nurses’ educational needs Qualitative Study. Community nurses took part in 6 focus group discussions about experiences of providing end-of-life care and views about ACP. Data analysed using a constant comparison approach Experiences and views and collaborative interpretation of the focus group data and identification of key themes and developing ideas about educational resources for ACP Nurses understood ACP to be an important part of practice and to have the potential to be a celebration of good nursing care. Nurses saw their roles in ACP as engaging with patients to elicit care preferences, facilitate family communication and enable a shift of care focus towards palliative care. They perceived challenges to ACP, including: timing, how to effect team working in ACP, the policy focus on instructional directives which related poorly to patients’ concerns; managing differences in patients’ and families’ views. Perceived barriers included: lack of resources; lack of public awareness about ACP; difficulties in talking about death. Nurses recommended the following to be included in education programmes: design of realistic scenarios; design of a flow chart; practical advice about communication and documentation; insights into the need for clinical supervision for ACP practice. Potential for community nurse (or equivalent) to have a key role in facilitating a process of ACP which has the potential to improve the quality of end-of-life care that patients receive. Identified challenges and barriers that must be addressed for this function to work Qualitative research, Level 2 group qualitative research with more rigor
Sudore, 2017 [30];
Theory 1; purposive search
To develop a consensus definition of ACP for adults Qualitative Study. Modified Delphi. Convened Delphi panel of multidisciplinary, international ACP experts consisting of 52 clinicians, researchers, and policy leaders from four countries and a patient/surrogate advisory committee Conducted 10 rounds using a modified Delphi method and qualitatively analyzed panelists’ input. Panelists identified several themes lacking consensus and iteratively discussed and developed a final consensus definition of ACP Definition of ACP: “Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.” Qualitative research, Level 2 group qualitative research with more rigor
Thomas, 2010 [57];
Theory 2; initial systematic search
To determine how family/friend caregiver needs are currently assessed and what level of support is available to family/friend caregivers in three home-based palliative care services within Australia, identify areas for improvement of support to family/friend caregivers, and explore the barriers to offering carer support Mixed methods Study. A case study using focus groups and file audit patients who had been discharged within the past 6 months were conducted at two metropolitan and one regional home-based palliative care service in Australia This is a multiple case study that looked at several sites, both metropolitan (M) and regional (R) Each regional centre had a distinct model of care. One used a case management model of care whereas a second provided consultation only and relied on the General Practitioner (GP) and the local district nursing service to provide the majority of ongoing care. Staff from all disciplines were invited to participate in order to ensure that a comprehensive range of perspectives were explored. Files were audited to see how often and in what manner carers’ care planning strategies were mentioned in the patients’ care plans and progress notes by a criteria-based system In general, the findings were the following. These palliative care sites reported substantially different levels of services provided to family/friend caregivers and also reported multiple barriers to providing services for family/friend caregivers. Only one site had a formal structured procedure to assess family/friend caregivers needs and none of the sites used a separate family/friend caregivers care plan or offered a structured intervention to assist family/friend caregivers with their role. Family meetings were offered infrequently by most sites. A number of barriers to supporting family/friend caregivers were highlighted including lack of resources, and areas for improvement were also suggested by health professionals from the sites Descriptive research, Level 2–3 multiple case study; Qualitative research, Level 2 group qualitative research with more rigor
Ventura, 2014 [58];
Theory 1; initial systematic search
To describe, evaluate and summarise the literature on the unmet needs of palliative home care patients and carers Systematic review. Review methodology- using qualitative and quantitative studies Seven databases were searched to find empirical studies on the self-reported unmet needs of palliative home care patients and carers. Nine qualitative studies, three quantitative studies and three mixed-design studies were identified The most frequently reported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the care received by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services were delivering satisfactory care in this domain but lacking in other areas. Some of the needs were respite care, information and advice, financial assistance, assistance with household tasks, emotional support, help with personal care and technical tasks Descriptive research, Level 1 systematic review
Wharton, 2015 [59];
Theory 1; initial systematic search
To describe a pilot home-based primary care program (HBPC), which is a longitudinal home care in which primary care is delivered in the home aimed at maintaining independence and function and preventing read- mission of patients to the acute care setting. The goal was to increase palliative care knowledge and collaboration among providers and to systematically identify chronic multimorbid home care patients who would benefit from focused discussion of potential palliative care needs Mixed Methods Study. Retrospective pre-post format. Solicited feedback on training from nurses. The program aimed to manage complex, chronically ill patients and improve the long- term health outcomes of participants with complex comorbid conditions while helping to contain health care costs The model included—education, relationship-building between teams, and implementation of a validated screening tool to identify patients for targeted discussion. HBPC teams were made up of a physician, several nurses, a clinical psychologist, a physical therapist, a dietician, a social worker, and administrative support staff. Services could include blood draws, regular health checks and nursing care, functional mobility, physical therapy assessments and interventions, dietary consultation and education, psychological services for both client and family caregivers, and resource assistance, among other things. The pilot used the End of Life Nursing Education Curriculum (ELNEC) national PC curriculum. To address patient screening goals the PPS1 assessment tool was used as a template in the electronic medical record. The cut-off score of 40% or less, indicating a low-functional status, nutritional compromise, and possible altered cognition ELNEC training, including both HBPC team members and members of other primary care teams in the hospital system was uniformly well received by the participants, with active learner participation and interaction prompted by relevant case discussions embedded within the ELNEC curriculum. Final course evaluations detected a substantial improvement between the learners’ self-rated knowledge of end-of-life care prior to the course. Findings indicated participants had increased confidence in their ability to use palliative knowledge in the course of their jobs. Nursing staff reported that they did not feel that the PPS was burdensome, although several were opposed to any change in their workload at all. The PPS might not be the best choice of instrument for a chronic, multi- morbid care population. There was some concern by team nurses that the PPS tool was not sensitive enough to conditions such as severe cognitive impairment, traumatic brain injury, or other chronic illnesses or disabilities, including accounting for an amputee status. Although minimal, the implementation of an additional screening tool did add to nursing time and effort. It was a challenge to ensure that the scores were entered in a consistent place in the medical record to enable easy access for review Descriptive research, Level 2 correlational study and Qualitative research, Level 2 group qualitative study with more rigor
Wittenberg-Lyles,2011 [60]; Theory 1; purposive search To determine which communication characteristics influenced early palliative care and how these shaped the patient’s and family’s healthcare experience and highlight issues with communication characteristics to inform the instrumental role of nurses Qualitative study. A grounded theory approach The researcher constantly compared field notes to the interview transcripts. Second, staff and interviewee feedback were collected, and themes were discussed and adjusted according to the feedback. Data was categorized by themes Five communication characteristics were identified in the observations and interviews: (a) curative-only approach and the diagnosis, (b) the structure and communication of medical care, (c) productive experiences (open awareness), (d) embraced opportunities to plan for end of life, and (e) community. Building rapport, and having communication with patients about their conditions, and what may come up prepare patients for the future. These characteristics along with interprofessional communication, provided “a community of professionals” that helped patients move through the illness trajectory with comfort and trust. Findings indicate embedding palliative care into patients care as early as possible Qualitative research, Level 2 group qualitative research with more rigor