Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness.

This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison.

Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence.

A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.

Given the increasing number of patients requiring palliative care and the need for more professionals who are able to provide care for the dying comfortably, assessment of medical attitudes toward end-of-life care is becoming a key aspect of medical education. The present study aimed to establish whether the Frommelt Attitude Toward the Care Of the Dying, Form B (FATCOD–B) meets current psychometric standards of validity for an assessment tool in medical education.

The participants were 200 undergraduate medical students. Since in a previous study the FATCOD–B was found to have a weak structure due to poor item validity, a refined version was proposed and tested in the present study. Confirmatory factor analysis and the Rasch model were employed to assess its dimensionality and psychometric properties.

The construct measured by the FATCOD–B continues to be misspecified. The tool has a two-dimensional structure. The first is well-structured and demonstrates appreciable measurement and discriminant capabilities. The second has low validity because its measurement capabilities are based on weakly correlated items.

Our results suggest that the FATCOD–B measures a two-dimensional construct and that only its first dimension is a robust measurement tool for use in medical education to evaluate undergraduates' attitudes about caring for the dying.

While improvements in healthcare have resulted in children with complex and life-threatening conditions living longer, a proportion of them still die. The death of a child puts parents at increased risk for anxiety, depression, and complicated grief. Increasing our understanding of the coping strategies that parents use under such extreme circumstances will enable us to best provide support to families, before and after a child's death. Our aim herein was to develop a theoretical framework of parental coping.

Evidence from the literature was employed to develop a theoretical framework to describe parental coping in the context of having a child with a life-limiting illness who is declining and facing eventual death.

The reasoning and argument consists of three guiding elements: (1) the importance of approach as well as avoidance (as coping strategies) in the context of managing the extreme emotions; (2) the importance of the social aspect of coping within a family, whereby parents cope for others as well as for themselves; and (3) the importance of a flexible and balanced coping profile, with parents using different coping strategies simultaneously. Central to the proposed framework is that effective coping, in terms of adjustment, is achieved by balancing coping strategies: accessing different coping strategies simultaneously or in parallel with a specific focus on (1) approach and avoidance and (2) coping aimed at self and others.

Understanding of parental coping strategies is essential for health professionals in order to support parents effectively.

The use of palliative care (PC) screening criteria to trigger PC consultations may optimize the utilization of PC services, improve patient comfort, and reduce invasive and futile end-of-life care. The aim of the present study was to assess the criterion validity and inter-rater reliability of a PC screening tool for patients admitted to an emergency department intensive care unit (ED-ICU).

Observational retrospective study evaluating PC screening criteria based on the presence of advanced diagnosis and the use of two “surprise questions” (traditional and modified). Patients were classified at ED-ICU admission in four categories according to the proposed algorithm.

A total of 510 patients were included in the analysis. From these, 337 (66.1%) were category 1, 0 (0.0%) category 2, 63 (12.4%) category 3, and 110 (21.6%) category 4. Severity of illness (Simplified Acute Physiology Score III score and mechanical ventilation), mortality (ED-ICU and intrahospital), and PC-related measures (order for a PC consultation, time between admission and PC consultation, and transfer to a PC bed) were significantly different across groups, more evidently between categories 4 and 1. Category 3 patients presented similar outcomes to patients in category 1 for severity of illness and mortality. However, category 3 patients had a PC consultation ordered more frequently than did category 1 patients. The screening criteria were assessed by two independent raters (n = 100), and a substantial interrater reliability was found, with 80% of agreement and a kappa coefficient of 0.75 (95% confidence interval = 0.62, 0.88).

This study is the first step toward the implementation of a PC screening tool in the ED-ICU. The tool was able to discriminate three groups of patients within a spectrum of increasing severity of illness, risk of death, and PC needs, presenting substantial inter-rater reliability. Future research should investigate the implementation of these screening criteria into routine practice of an ED-ICU.

Our aim was to examine the prevalence, correlates, and association of depressive and anxiety disorders with quality of life (QoL) and such other outcomes as the need for psychosocial services in cancer patients.

A total of 400 patients participated in a multicenter survey involving five cancer centers located throughout Korea. The Short-Form Health Survey, the MD Anderson Symptom Inventory, the Mini-Mental Adjustment to Cancer (MINI-MAC), and Mini-International Neuropsychiatric Interview were administered.

The prevalence rates for depressive and anxiety disorders were 16 and 17.1%, respectively. Younger age and poor Eastern Cooperative Oncology Group performance status, and all physical symptoms, as well as helplessness/hopelessness, anxious preoccupation (AP), and cognitive avoidance (CA) on the MINI-MAC were found to be significantly related to depressive disorder (DD) in a univariate logistic regression analysis. Metastases, the symptoms of disturbed sleep, dry mouth, and numbness or tingling, as well as AP and CA were significantly correlated with anxiety disorder (AD) in the univariate analysis. In the multivariate analyses, only AP was significant for AD (odds ratio = 2.94, p < 0.001), while none reached statistical significance for DD. Psychiatric comorbidity status had a detrimental effect on various dimensions of QoL. Patients with DD or AD reported a significantly higher need for professional psychosocial services.

Given the substantial prevalence and pervasive impact of DD and AD on various aspects of QoL, its assessment and care should be integrated as a regular part of oncological care throughout the cancer continuum.

Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a “toolkit” to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers.

Guided by the RE-AIM (Reach, Effectiveness–Adoption, Implementation, Maintenance) framework, we undertook an instrument-development process based on the literature, expert and site stakeholder review and feedback, and pilot testing during site visits.

We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians' Perceptions of Early Concurrent Oncology Palliative Care survey.

We developed four measures to determine early palliative care implementation. These measures have been pilot-tested, and will be integrated into a comprehensive “toolkit” to assist community cancer centers to measure implementation outcomes. We describe the lessons learned and recommend strategies for promoting long-term program sustainability.

Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility.

The Domus model of SPC for patients with incurable cancer and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate this goal by alleviating distress in patients and caregivers. Psychologists provided needs-based sessions based on existential-phenomenological therapy. Feasibility and acceptability were investigated by examining enrollment, nonparticipation, and completion of psychological sessions.

Enrollment in the RCT and uptake of the psychological intervention indicated that it was feasible and acceptable to patients and caregivers. The strengths of the intervention included its focus on dyads, psychological distress, and existential concerns, as well as interdisciplinary collaboration and psychological interventions offered according to need. Its main limitation was a lack of an intervention for other family members.

Our results show that psychological intervention can be systematically integrated into SPC and that it appears feasible to provide dyadic needs-based sessions with an existential therapeutic approach. The Domus RCT will provide evidence of the efficacy of a novel model of multidisciplinary SPC.

The prevalence of depression as well as adjustment and anxiety disorders is high in advanced cancer patients, and research exploring intraindividual factors leading to high psychological distress is underrepresented. Cancer patients' feelings about security and trust in their healthcare providers have a significant influence on how they deal with their disease. The perception of social support is affected by patients' attachment styles and influences their reactions to feelings of dependency and loss of control. We therefore aimed to explore attachment and its association with psychological distress in patients with advanced cancer.

We obtained data from the baseline measurements of a randomized controlled trial in advanced cancer patients. Patients were sampled from the university medical centers of Hamburg and Leipzig, Germany. The main outcome measures included the Patient Health Questionnaire, the Death and Dying Distress Scale, the Memorial Symptom Assessment Scale, and the Experience in Close Relationships Scale for assessing attachment insecurity.

A total of 162 patients were included. We found that 64% of patients were insecurely attached (fearful-avoidant 31%, dismissing 17%, and preoccupied 16%). A dismissing attachment style was associated with more physical symptoms but did not predict psychological distress. A fearful-avoidant attachment style significantly predicted higher death anxiety and depression, whereas preoccupied attachment predicted higher death anxiety only. Overall, insecure attachment contributed to the prediction of depression (10%) and death anxiety (14%).

The concept of attachment plays a relevant role in advanced cancer patients' mental health. Healthcare providers can benefit from knowledge of advanced cancer patients' attachment styles and how they relate to specific mental distress. Developing a better understanding of patients' reactions to feelings of dependency and distressing emotions can help us to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.

Our aim was to identify the themes that arise when applying adapted meaning-centered group psychotherapy (MCGP) in Spanish-speaking advanced cancer patients.

A mixed qualitative–quantitative analysis was performed on the transcripts of interviews with 22 advanced cancer patients who had been assigned to three MCGP subgroups.

We found six new emergent themes in addition to the originally constructed themes of MCGP. Threat and uncertainty were the two most frequent emergent issues for our Spanish patients.

The implementation of MCGP in Spanish patients validated the themes proposed by Breitbart and colleagues' foundational work on MCGP and also suggested new issues relevant to patient well-being (classified as “emergent themes”). Taking our findings into account, we propose that these new themes be considered in the Spanish adaptation of MCGP as well as in future adaptations of this form of psychotherapy in treating Latin American patients.

Exposure to the death and dying of others is an anxiety-provoking condition that can contribute to psychological stress. However, the results of empirical studies that evaluated work-related outcomes among physicians and nurses with repeated exposure to dying patients are not consistent.

Our aim was to evaluate whether a high level of exposure to death and dying (LED) can increase the risk for poor professional quality of life (ProQoL) in most healthcare workers, but it can also improve ProQoL in a subset of healthcare workers with specific characteristics.

We employed a cross-sectional survey designed to better understand the role of LED as a predictor of ProQoL among healthcare workers.

Comparison of physicians and nurses with high LED (home-based palliative care units) with a matched group of physicians and nurses with low LED (primary care units) and evaluation of possible interaction effects among LED, death anxiety (DA), and engagement as predictors of ProQoL.

The final sample included 110 questionnaires from the high-LED group (response rate = 39%) and 131 from the low-LED (response rate = 24%) group. Workers with high LED reported an increased level of compassion satisfaction (CS) and low to moderate levels of burnout (BU) and secondary traumatic stress (STS), with no significant differences with respect to other healthcare providers. Although levels of CS, STS, and BU did not differ between groups, a univariate MANOVA revealed that the interaction effect of LED × Engagement reduced levels of CS and that the interaction effect of LED × DA increased STS among workers with high LED.

LED was significantly correlated with ProQoL among healthcare workers with high LED due to the reported interaction effect. These findings imply, for the first time, that there is a possible correlation between engagement and the risk for poor ProQoL among workers with high LED. Further research is essential to gain a better understanding of this issue.

Little is known about the current views and practices of healthcare professionals (HCPs) in Sub-Saharan Africa (SSA) regarding delivery of hospital palliative care. The present qualitative study explored the views of nursing staff and medical professionals on providing palliative and end-of-life care (EoLC) to hospital inpatients in Tanzania.

Focus group discussions were conducted with a purposive sample of HCPs working on the medical and pediatric wards of the Kilimanjaro Christian Medical Centre, a tertiary referral hospital in northern Tanzania. Transcriptions were coded using a thematic approach.

In total, 32 healthcare workers were interviewed via 7 focus group discussions and 1 semistructured interview. Four major themes were identified. First, HCPs held strong views on what factors were important to enable individuals with a life-limiting diagnosis to live and die well. Arriving at a state of “acceptance” was the ultimate goal; however, they acknowledged that they often fell short of achieving this for inpatients. Thus, the second theme involved identifying the “barriers” to delivering palliative care in hospital. Another important factor identified was difficulty with complex communications, particularly “breaking bad news,” the third theme. Fourth, participants were divided about their personal preferences for “place of EoLC,” but all emphasized the benefits of the hospital setting so as to enable better symptom control.

Despite the fact that all the HCPs interviewed were regularly involved in providing palliative and EoLC, they had received limited formal training in its provision, although they identified such training as a universal requirement. This training gap is likely to be present across much of SSA. Palliative care training, particularly in terms of communication skills, should be comprehensively integrated within undergraduate and postgraduate education. Research is needed to develop culturally appropriate curricula to equip HCPs to manage the complex communication challenges that occur in caring for a diverse inpatient group with palliative care needs.

Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.

Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.

Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE–2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.

Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).

While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

The aim of the study is to develop an amyotrophic lateral sclerosis supportive care needs (ALSSCN) instrument based on Fitch's Supportive Care Needs Framework and to test its psychometric properties.

This study consists of three parts: (1) item generation from the literature review and qualitative interview; (2) content validation; and (3) psychometric evaluation of the instrument. Participants who were diagnosed with ALS (n = 139) were recruited from two ALS clinics in Seoul, Korea, and Busan, Korea for the psychometric testing.

The ALSSCN consisted of 37 items with seven domains: physical, psychological, emotional, spiritual, social, informational, and practical needs. The Cronbach's alpha of each domain ranged from 0.61 (social needs) to 0.90 (emotional needs). The intra-class correlation coefficient for test-retest was 0.89, indicating good test-retest reliability. The overall ALSSCN was significantly negatively correlated with the quality of life, which supported convergent validity. Confirmatory factor analysis of the ALSSCN supported a seven-factor model.

The ALSSCN has acceptable internal consistency, stability, and content and construct validity in a Korean ALS population. ALSSCN is a psychometrically sound measure and can be adopted by healthcare professionals, researchers, and administrators to comprehensively assess the perceived supportive care needs of patients with ALS.

The Patient Dignity Inventory (PDI) evaluates sources of distress related to the feeling of loss of dignity and was designed for patients at the end of life. The aim of the present work was to generate a better understanding of the experiences of healthcare staff when using the PDI.

An exploratory qualitative study is presented about the experience of 4 professionals who applied the PDI to 124 advanced-cancer patients. Our study consisted of an analysis of their experiences, taken from information generated in a focus group. A thematic analysis was performed on the information generated at that meeting by two researchers working independently.

The initial experiences with the PDI on the part of the professionals led them to systematically administer the questionnaire as part of an interview instead of having patients fill it out themselves in written form. What started out as an evaluation very often led to a profound conversation on the meaning of life, dignity, and other sensitive, key issues related to the process of the illness.

The PDI has intrinsic therapeutic value and is useful in clinical practice, and it is also a way of examining issues related to dignity and the meaning of life within the context of advanced-stage illness. There is a need for studies that examine patient experiences through a PDI-based interview.

This study aimed at analyzing the validity and reliability of the continuous reaction time (CRT) test, the finger-tapping test (FTT), the Digit Span Test (DST), the Trail Making Test – part B (TMTB), and the Mini-Mental State Examination (MMSE) in patients with metastatic cancer.

Eighty adult patients and 81 healthy controls were assessed between July of 2010 and November of 2015. The neuropsychological tests were analyzed regarding construct/discriminant/criterion validity and reliability.

In terms of construct validity, it was not possible to estimate a model for the MMSE because of a skewed response distribution. For discriminant validity, patients were slower on two measures of the CRT (p = 0.00483, p = 0.00030) and FTT dominant hand (p = 0.00306). Regarding sensitivity and specificity, only the DST and TMTB seemed to predict cognitive deficit; however, the ROC curve areas were ≤ 0.73. In terms of criterion validity, there were few significant correlations between the tests and the sociodemographic and clinical variables, and for the most part were very weak. Reliability was deemed to be adequate for the TMTB, DST, and FTT.

The findings of the full validation analyses were not clear-cut. However, CRT test, DST, FTT, and TMTB demonstrated partial positive results, indicating that these tests have good potential for use in clinical settings and require further study.

Sleep can affect quality of life (QoL) during cancer survivorship, and symptoms related to poor sleep can be exacerbated. We examined the prevalence, severity, and nature of subjective sleep complaints in women surviving stage I–III breast cancer who were 1–10 years posttreatment. We also examined the demographic, medical, physical, and psychosocial correlates of poor sleep in these women in order to identify the subgroups that may be most in need of intervention.

A total of 200 patients at a comprehensive cancer center who were 1–10 years posttreatment for primary stage I–III breast cancer with no evidence of disease at the time of enrollment completed a battery of questionnaires on demographics, sleep, physical symptoms, mood, cancer-specific fears, and QoL.

The women had a mean age of 57 years (SD = 10.0), with a mean of 63.3 months (SD = 28.8) of post-cancer treatment. Some 38% of these patients were identified as having poor-quality sleep. Women with poor sleep took longer to fall asleep, had more awakenings, and acquired 2 hours less sleep per night than those with good sleep. They also had a lower QoL, greater severity of pain, more concerns about health and recurrence, and increased vasomotor symptoms (p < 0.05). Daytime sleepiness and depression were found to be not significantly correlated with sleep quality.

Many breast cancer survivors had severe subjective insomnia, and several breast cancer survivor subgroups were identified as having members who might be most in need of sleep-improvement interventions. Addressing physical symptoms (e.g., vasomotor symptoms and pain) and providing education about the behavioral, social, environmental, and medical factors that affect sleep could result in substantial improvement in the life course of breast cancer survivors.

Our aim was to gain insight into the perspectives of patients, close relatives, nurses, and physicians on medication management for patients with a life expectancy of less than 3 months.

We conducted an empirical multicenter study with a qualitative approach, including in-depth interviews with patients, relatives, nurses, specialists, and general practitioners (GPs). We used the constant comparative method and ATLAS.ti (v. 7.1) software for our analysis.

Saturation occurred after 18 patient cases (76 interviews). Some 5 themes covering 18 categories were identified: (1) priorities in end-of-life care, such as symptom management and maintaining hope; (2) appropriate medication use, with attention to unnecessary medication and deprescription barriers; (3) roles in decision making, including physicians in the lead, relatives' advocacy, and pharmacists as suppliers; (4) organization and communication (e.g., transparency of tasks and end-of-life conversations); and (5) prerequisites about professional competence, accessibility and quality of medical records, and financial awareness. Patients, relatives, nurses, specialists, and GPs varied in their opinions about these themes.

This study adds to our in-depth understanding of the complex practice of end-of-life medication management. It provides knowledge about the diversity of the perspectives of patients, close relatives, nurses, and physicians regarding beliefs, attitudes, knowledge, skills, behavior, work setting, the health system, and cultural factors related to the matter. Our results might help to draw an interdisciplinary end-of-life medication management guide aimed at stimulating a multidisciplinary and patient-centered pharmacotherapeutic care approach.

Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns.

Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers.

Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice. The informing studies were conducted in two Australian states: Victoria and South Australia.

A series of principles underpinning the model were developed, including that it must be: (1) focused on patient and caregiver; (2) equitable, enabling access to components of palliative care for a group with significant needs; (3) accessible; and (4) less resource-intensive than expansion of usual palliative care service delivery. The recommended conceptual model was to have the following features: (a) entry to palliative care occurs routinely triggered by clinical transitions in care; (b) care is embedded in routine ambulatory respiratory care, ensuring that it is regarded as “usual” care by patients and clinicians alike; (c) the tasks include screening for physical and psychological symptoms, social and community support, provision of information, and discussions around goals and preferences for care; and (d) transition to usual palliative care services is facilitated as the patient nears death.

Our proposed innovative and conceptual model for provision of palliative care requires future formal testing using rigorous mixed-methods approaches to determine if theoretical propositions translate into effectiveness, feasibility, and benefits (including economic benefits). There is reason to consider adaptation of the model for the palliative care of patients with other nonmalignant conditions.

Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings.

A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals.

Factors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers’ involvement in the implementation differed between the units.

The feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.

Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.

Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.

Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).

Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.