Educating Social Workers in Palliative and End-of-Life Care: Development and Implementation of a New National Training Program.

Background: Educating Social Workers in Palliative and End-of-Life Care (ESPEC) is a nationally scalable continuing education program designed to improve the knowledge and skills of frontline health social workers caring for patients with serious illness. Objectives: This article describes ESPEC's rationale, development, and initial implementation. Design: Following the creation of consensus-derived core primary palliative care competencies for health primary care social workers based on the eight domains of palliative care outlined in the National Consensus Project Guidelines for Quality Palliative Care, an evidence-based curriculum was developed. This was used to develop a hybrid training model with a self-study component, synchronous instructor-led skills-based training, leadership training, and mentorship. The interactive curriculum incorporates patient scenarios highlighting the health social work role. Training targets high-impact skills-the biopsychosocial-spiritual assessment, advance care planning, family meetings, and interprofessional communication-and professional development. Settings/Subjects: ESPEC was launched in the United States in collaboration with the National Association of Social Workers (NASW) and the Social Work Hospice and Palliative Care Network (SWHPN). Results: The preliminary launch demonstrated high user acceptability, positive ratings for content and format, and gains in knowledge and competence. Conclusions: Data suggest that ESPEC can increase health social workers' knowledge and confidence as providers of palliative care interventions. National dissemination is ongoing.

Interprofessional communication training to address spiritual aspects of cancer care.

Effective communication is essential for palliative care clinicians to provide quality spiritual care to cancer patients. Despite attention to spiritual needs having the potential to positively impact a patient's quality of life, clinicians continue to report a lack of confidence in addressing a patient's spiritual distress. This article addresses the development of a 3-day train-the-trainer communication cancer education program (ICC: Interprofessional Communication Curriculum) organized by the 8 domains of the National Consensus Project for Quality Palliative Care. The main objectives of ICC are to train adult oncology clinicians (nurses, social workers, and chaplains) in communication skills across all aspects of palliative care and to help prepare them to provide communication skills training to their colleagues at their home institutions. ICC participants attend in dyads consisting of differing disciplines and create 3 goals for implementing institutional change. To date, 126 participants (69 teams) have attended an ICC training. Pre-course survey results identified spiritual care as participants' least effective area of communication. Immediate post-course evaluation data revealed the spiritual care module and its subsequent lab session as the most useful sessions to participant's practice. Data from the 6-and-12-months post-course follow-up revealed participant's quality improvement projects focused heavily on improving spiritual care.

Family Meetings in Palliative Care: Benefits and Barriers.

OPINION STATEMENT: Specialists in palliative care view the family meeting as a means to engage patients and their families in a serious illness discussion that may clarify the values of patients and caregivers, provide information, determine care preferences, and identify sources of illness-related distress and burden. The family meeting is considered the best practice for achieving patient- and family-centered care in palliative care. Although studies of the family meeting are limited, those extant suggest that these interventions may reduce caregiver distress, mitigate the perception of unmet needs, prepare family members for caregiving, and improve bereavement outcomes. The experience of palliative care specialists further suggests that the family meeting may reinforce the therapeutic alliance with families, promote consensus, and reduce the need for ad hoc meetings. Physician satisfaction may be enhanced when the treatment plan includes the opportunity to show empathy and see the family's perspective-core elements of the clinical approach to the family meeting. In the oncology setting, the potential to achieve these positive outcomes supports the integration of the family meeting into practice. Clinical skills for the planning and running of family meetings should be promoted with consideration of a standardized protocol for routine family meetings at critical points during the illness and its treatment using an interdisciplinary team. Further research is needed to refine understanding of the indications for the family meeting and determine the optimal timing, structure, and staffing models. Outcome studies employing validated measures are needed to better characterize the impact of family meetings on patient and family distress and on treatment outcomes. Although better evidence is needed to guide the future integration of the family meeting into oncology practice, current best practices can be recommended based on available data and the extensive observations of palliative care specialists.

Advancing interprofessional education in communication.

OBJECTIVE: The objective of this training project is to develop and host Interprofessional Communication courses to improve interdisciplinary communication in oncology care. The initial national course was held in a virtual format and included pre- and post-course participant data. The curriculum was developed with support from the National Cancer Institute. METHODS: A virtual two-day course was held to equip nurses, social workers, and chaplains with vital communication skills in oncology practice, so that they could return to their home institutions and teach communication skills to other healthcare professionals, with the intention of making improved communication a quality improvement goal. Fifty-two participants were selected through an application process to attend the virtual course in two-person interprofessional teams (e.g., nurse and chaplain, or social worker and nurse). The Interprofessional Communication Curriculum was based on the National Consensus Project for Quality Palliative Care's eight domains of quality palliative care. The six online modules developed by the investigators were presented in lectures, supplemented by discussion groups, role plays, and other methods of experiential learning. RESULTS: Pre- and post-course results identified areas of communication, which are a priority for improvement by oncology clinicians. Participant goals identified specific strategies to be implemented by participants in their settings. SIGNIFICANCE OF RESULTS: The need for communication training was clearly demonstrated across professions in this national training course. Participants were able to apply course content to their goals for quality improvement in cancer settings.

Exploring the Score Equivalence of the English and Chinese Versions of the Brief Assessment Scale for Caregivers.

BACKGROUND: Multilingual outcome measures are used so that research studies are more generalizable across language contexts. OBJECTIVE: To determine the score equivalence of the English and Chinese versions of Brief Assessment Scale for Caregivers (BASC) in Singapore. METHOD: Caregivers of patients with advanced cancer completed the BASC in either English or Chinese. Multivariable linear regression analysis was used to compare the mean BASC total and factor scores between the 2 language versions, with adjustment for possible confounding variables. Equivalence was declared if the 90% confidence interval of the mean scores fell entirely within an equivalence zone of ±0.5 standard deviation. RESULTS: There were 521 ethnic Chinese participants, of whom 214 answered the English version and 307 answered the Chinese version. The BASC total and factor scores met the criteria for equivalence. Cronbach α coefficients were similar and exploratory factor analysis showed similar 2-factor structures for both language versions. CONCLUSION: The English and Chinese versions of the BASC were found to be equivalent in terms of similar adjusted mean scores, Cronbach α, and factor structures.

Addressing the burden of illness in adults with cystic fibrosis with screening and triage: An early intervention model of palliative care.

BACKGROUND: Novel models that improve generalist-level palliative care for cystic fibrosis (CF) are needed to address the burden of this illness. A screening-and-triage model has the potential to identify clinical problems requiring immediate follow-up by CF professionals. This study describes such a model and its immediate impact on care delivery for CF patients during a two-year period. METHODS: Eligible adults completed monthly online screening for sources of distress. If results revealed one or more "indicators of concern" on two consecutive screenings, this triggered an attempted triage by a social worker. Completed triages led to prompt follow-up by CF professionals for clinical problems, if indicated. Process data were summarized and generalized linear mixed models were used to evaluate baseline patient characteristics (symptom distress, quality of life, and sociodemographics) associated with the need for prompt follow-up. RESULTS: A total of 1,015 monthly surveys were completed by 74 patients; 634 (66 patients) had >1 indicators of concern; and 164 surveys (46 patients) had >1 indicators for two consecutive surveys (e.g., global distress, pain, dyspnea, and psychological symptoms). The 164 attempted triages yielded 84 completed triages (51.2%), of which 39 (46.4%) required prompt follow-up. In multivariable analyses, older patients and those with higher symptom distress at baseline were more likely to require prompt follow-up (p < .05). CONCLUSIONS: Web-based screening that assesses varied domains of distress or burden can identify a subset of CF patients whose clinical problems may benefit from immediate medical or psychological attention. Additional investigations should improve screening efficiency.

Defining Core Competencies for Generalist-Level Palliative Social Work.

CONTEXT: Care provided to seriously ill patients by frontline social workers is a component of generalist-level palliative care. The core competencies for high-quality generalist-level palliative social work are necessary to promote training curricula and best practices but have not yet been defined in the U.S. OBJECTIVE: The objective of this study was to develop consensus-derived core competencies for generalist-level palliative social work. METHODS: Fifty-five proposed social work competencies were categorized by the eight domains of palliative care identified by the National Consensus Project for Quality Palliative Care. The competencies were rated by 41 regionally dispersed, Master's level social workers selected through purposive and snowball sampling using a Delphi method. Each was rated as essential for generalist-level palliative social work, acceptable with modifications, or rejected based on the judgment that it was not essential for generalist-level palliative social work or was outside the scope of practice. Consensus was defined as >70% agreement to accept or reject a competency. Three review rounds were needed to achieve consensus on all competencies. RESULTS: Two competencies were added to the original list. Of the 57 proposed competencies, 41 were accepted (19 after modification) and 16 were rejected. Competencies in the social, spiritual, cultural, and ethical/legal aspects of care domains were relatively more likely to be accepted compared with those in structure and processes of care, physical care, psychological care, and care of patient at the end of life. CONCLUSION: The 41 consensus-derived competencies for generalist-level palliative social work may inform the development of training curricula and standards for high-quality care.

Trajectories of caregiver burden in families of adult cystic fibrosis patients.

ABSTRACTObjectives:Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. METHODS: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. RESULTS: Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. SIGNIFICANCE OF RESULTS: Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Patients' and caregivers' needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries.

BACKGROUND: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited. AIM: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers. DESIGN: Focus group study. SETTING/PARTICIPANTS: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically. RESULTS: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs. CONCLUSION: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.

The Family Meeting in Palliative Care: Role of the Oncology Nurse.

OBJECTIVES: To describe the family meeting in palliative and end-of-life care, highlighting the role of the oncology nurse. Specific strategies will be provided for pre-meeting preparation, communication, and follow-up activities. DATA SOURCES: A conceptual framework drawn from family and communication theory, and best practices from the clinical, research, nursing, and palliative care literature. CONCLUSION: Working with patients and families is complex, but the family meeting is a promising tool and a potential quality indicator in palliative care. IMPLICATIONS FOR NURSING PRACTICE: The nurse is well positioned to participate fully in every aspect of the family meeting.

Web-based symptom screening in cystic fibrosis patients: A feasibility study.

BACKGROUND: Cystic fibrosis (CF) causes high illness burden. Screening may identify patients who could potentially benefit from interventions for symptoms or other sources of distress. We evaluated the feasibility of a web-based system for routine monitoring. METHODS: Adult CF patients enrolled in a study of palliative care service delivery completed web-based assessments every 30 days on global distress, physical and psychological symptom distress, and the perceived benefits of discussing advance care planning (ACP) with CF clinicians. Feasibility was assessed by the rate of survey completion, survey reminders, and missed surveys during a 9-month rolling enrollment period. RESULTS: Of 74 participants (47.3% women, 94.4% white), 36.7% had comorbid diabetes, and 56.9% had an FEV1% predicted score of 40-69. In total, patients completed 456 (80.6%) of 566 surveys every 30 days over the assessment period. Sixty-five (87.8%) completed 405 (79.7%) of 508 surveys online and 9 (12.2%) completed 51 (88.0%) of 58 surveys using a combination of online, telephone, and mail-based methods. Many surveys were completed without reminders (online: 261 [64.4%] of 405; combined methods: 29 [56.9%] of 51), with 166 (36.4%) surveys requiring 1 or more reminders. Further, 23.0% (17) of patients noted elevated global distress; 20.3% (15) endorsed physical symptom distress, 12.2% (9) had psychological distress, and 58.1% (43) reported that discussing ACP would be beneficial. CONCLUSIONS: Repeated web-based screening for symptom distress and ACP preferences is feasible in adult CF patients. Future studies should assess the system's generalizability and staff resources when implementing reminders and non-web methods of completion.

Development and validation of the Brief Assessment Scale for Caregivers in Chinese.

BACKGROUND: Chinese family caregivers in the United States experience high rates of burden. Studies in this population require culturally appropriate and valid instruments. OBJECTIVE: To adapt a Chinese version of the Brief Assessment Scale for Caregivers (BASC), a tool measuring positive and negative effects of caregiving. METHODS: New items for the Chinese adaptation were generated from the literature, an interdisciplinary professional group, and caregiver focus groups. The new items were translated into Chinese, added to the original 14-item BASC, then administered to caregivers in two surveys (n=205); participants also completed Chinese versions of the Caregiver Burden Inventory-Chinese (CBI-C), the Hospital Anxiety and Depression Scale (HADS), and the Katz Index for Activities of Daily Living. Item reduction and exploration of internal consistency, reliability and validity using correlational, exploratory, and confirmatory factor analysis were performed. RESULTS: Factor analysis and item-total correlations supported reduction in the number of new items. The final BASC-Chinese (BASC-C) included 10 new items plus the 14 items from the original tool with an overall α coefficient of 0.79 for the 24-item scale. Three Chinese-specific factors-cultural strain, decision-making strain, and emotional strain-showed α coefficients of 0.69 to 0.79. Significant first order correlations were found between the BASC-C and previously validated measures (total BASC-C with HADS Anxiety [r=0.64, p<0.001], HADS Depression [r=0.60, p<0.001], and CBI-C [r=0.60, p<0.001]). Partial correlations indicated that the new Chinese items provided information supplemental to the original BASC. CONCLUSION: This study suggests that the BASC-C is a valid measure of caregiver burden among Chinese family caregivers.

Developing an Older Adult Volunteer Program in a New York Chinese Community: An Evidence-Based Approach.

This study reports the results of a pilot volunteer project for older Chinese immigrants and documents benefits for both volunteers and caregiver recipients. Using a social marketing approach, the volunteer project was designed as a social model to promote better health among older Chinese immigrants in New York City. The packaging of this health promotion project as a volunteer program was based on a strengths perspective. In the program, 18 older Chinese immigrants were trained to provide support and referral to family caregivers of ill relatives in the Chinese community. At 6 months, outcomes were evaluated for both volunteers and caregivers. The older volunteers perceived benefits associated with volunteering, specifically, a greater sense of well-being and satisfaction with life. In addition, the majority of volunteers felt empowered by training and volunteering (100 %), felt the skills they learned improved communication with their own families (90 %), and reported physical and emotional health benefits (61 %). At the same time, caregivers reported stress reduction following volunteer support. Findings suggest that a volunteer program model may be an effective health promotion intervention for older Chinese immigrants.

Physical well-being of oncology caregivers: an important quality-of-life domain.

OBJECTIVES: To provide an overview of research and practice related to the physical well-being of oncology caregivers. DATA SOURCES: Literature retrieved through the PubMed and CINAHL databases. CONCLUSION: Caregivers play an important role in supporting people with cancer at every stage of the illness trajectory. Because caregiving is inherently stressful, caregivers should be routinely included in the assessment and treatment of patients with cancer. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses are uniquely positioned to play a vital role in recognizing caregiver strain and intervening to break the cycle of unremitting physical and psychosocial burden.

A rapid two-stage screening protocol for palliative care in the emergency department: a quality improvement initiative.

BACKGROUND: A rapid two-stage screening protocol was developed to improve referral for palliative care needs among frail elderly in the emergency department (ED). MEASURES: A new triage tool was administered, with assessment tools for activities of daily living, performance, functional staging, symptom burden, and caregiver distress. INTERVENTION: Stage One identified elderly patients meeting criteria for life-limiting conditions. Stage Two referred patients with crescendo losses in activities of daily living, high symptom burden, and caregiver distress to palliative care or hospice. OUTCOMES: Over eight months, 1587 patients were screened, representing 22% of ED visits made by patients older than 65 years during this time period. Of these, 140 met functional decline criteria, and 51 of these needed palliative care consultation. Five patients were referred to hospice, 20 received palliative care, and 26 received no further service. CONCLUSIONS/LESSONS LEARNED: The project shows unmet needs among elderly ED patients, and the feasibility of rapid screening and referral using a quality improvement approach. At its peak, the project accounted for half the referrals to the palliative care consultation service.

Nurse practitioner-based models of specialist palliative care at home: sustainability and evaluation of feasibility.

CONTEXT: Patients with serious medical problems who live at home may not be able to access specialist-level palliative care when the need develops. Nurse practitioner (NP)-based models may be able to increase the availability of specialist care in the community. OBJECTIVES: The aim of this study was to evaluate the financial sustainability and feasibility of two NP-based models in an urban setting. METHODS: In one model, an NP was linked with a social worker (SW) to create a new palliative home care team (PHCT-NP-SW), which would provide consultation and direct care to referred homebound elderly patients with advanced illnesses. In a second model, an NP was assigned to a hospice program (Hospice-NP) for the purpose of enhancing the reach and impact of a home care team. The revenue generated by each model was compared with direct costs; the PHCT-NP-SW model also was evaluated for its feasibility and impact on patient-level outcomes. RESULTS: Over a two-year period, the NP in the PHCT-NP-SW model made 350 visits and followed 114 patients at home. Annualized revenue through reimbursement from patient billing offset less than 50% of the NP's salary costs. In contrast, the Hospice-NP model led to a 360% increment in hospice referrals, yielding sufficient new revenue to support this position indefinitely after only seven months. The PHCT-NP-SW model provided numerous interventions that yielded a significant decline in symptom distress during the initial two weeks after referral (P=0.003), 100% compliance with advance care planning, 21% admission rate to hospice, access to other community services, and crisis management. Nonetheless, lack of funding led to closure of this model after the two years. CONCLUSION: This experience suggests that a PHCT-NP-SW model is not sustainable in this urban environment through reimbursement-based revenue, whereas a Hospice-NP model for hospice can be sustainable based on the growth of hospice census. The PHCT-NP-SW model appears to offer benefits, and additional efforts are needed to establish the funding mechanisms to sustain such programs, create mixed models of hospice and nonhospice funding, or provide a basis for sustainability through cost reduction.

Development of a brief assessment scale for caregivers of the medically ill.

Studies have documented high degrees of burden and negative outcomes for caregivers. The present study sought to develop a brief instrument for caregiver burden. An item pool was administered to 102 caregivers of patients with chronic illnesses (cancer, 55%; neurological, 15%; psychiatric 12%), along with measures of caregiver burden and quality of life. Item reduction was accomplished through content review and factor analysis. This yielded a 14-item Brief Assessment Scale for Caregivers (BASC) and an eight-item subscale measuring negative personal impact (NPI). Cronbach's alpha was 0.70 for the BASC and 0.80 for the NPI. Construct validity was confirmed by appropriate patterns of intercorrelation with other measures of caregiver burden. Higher burden was found for caregivers expected to have higher levels of distress (adult children caring for parents, P<0.005; female caregivers, P=0.035). These results support the validity of the BASC as a brief instrument for caregiver burden.

The emerging role and needs of family caregivers in cancer care.

Involvement of family caregivers is essential for optimal treatment of cancer patients in ensuring treatment compliance, continuity of care, and social support, particularly at the end of life. The diagnosis of cancer presents a major crisis not only to the patient but also to the patient's primary caregiver. Caregivers often assume this role under sudden and extreme circumstances, with minimal preparation and uneven guidance and support from the healthcare system. The primary setting for the delivery of care to patients with cancer has shifted from the hospital to the home as a result of increased use of outpatient services for cancer treatment, shortened hospital visits, longer survival,and the trend for caregivers to accommodate patients' desire to be cared for at home for as long as possible. Caring for a family member with cancer poses significant challenges, with considerable psychological and physical consequences for the caregiver. Family caregiving has gained attention in the past decade with growing realization that support for family caregivers benefits the caregiver, the patient, and the healthcare team. This article will attempt to provide an understanding of the multifaceted role of caregivers in cancer care, describe the impact of this role on the caregiver's quality of life, impart an understanding of the caregiver's burden and unmet needs, highlight adaptational requirements of caregivers along the disease trajectory, and describe interventions for providing support to nonmedical persons caring for patients with cancer.