National guidelines in the United Kingdom recommend training Clinical Nurse Specialists in psychological skills to improve the assessment and intervention with psychological problems experienced by people with a cancer diagnosis (National Institute for Health and Clinical Excellence, 2004). This pilot study evaluated a three-day training program combined with supervision sessions from Clinical Psychologists that focused on developing skills in psychological assessment and intervention for common problems experienced by people with cancer.

Questionnaires were developed to measure participants’ levels of confidence in 15 competencies of psychological skills. Participants completed these prior to the program and on completion of the program. Summative evaluation was undertaken and results were compared. In addition, a focus group interview provided qualitative data of participants’ experiences of the structure, process, and outcomes of the program.

Following the program, participants rated their confidence in psychological assessment and skills associated with providing psychological support as having increased in all areas. This included improved knowledge of psychological theories, skills in assessment and intervention and accessing and using supervision appropriately. The largest increase was in providing psycho-education to support the coping strategies of patients and carers. Thematic analysis of interview data identified two main themes including learning experiences and program enhancements. The significance of the clinical supervision sessions as key learning opportunities, achieved through the development of a community of practice, emerged.

Although this pilot study has limitations, the results suggest that a combined teaching and supervision program is effective in improving Clinical Nurse Specialists’ confidence level in specific psychological skills. Participants’ experiences highlighted suggestions for refinement and development of the program. Opportunities for further research and developments in this area are discussed.

Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.

The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.

One emotional barrier, “negative emotional reactions” (13 items, Cronbach's α = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's α = 0.85), “belief in avoidance” (5 items, Cronbach's α = 0.86), and “outcome expectancy” (4 items, Cronbach's α = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.

Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.

Research and clinical expertise have emphasized the mental health needs of parents and caregivers of medically complex children. Evidence-based interventions are available for adult mental health, including those designed specifically for caregivers caring for children with a variety of health-care needs. This paper describes practical and legal considerations of 3 possible pathways for psychologists to address the needs of caregivers within pediatric hospital settings.

Literature regarding the mental health needs of caregivers of children with medical conditions, evidence-based interventions, and pediatric subspecialty psychosocial guidelines was reviewed. Relevant legal and ethical obligations for psychologists were also summarized.

The mental health needs of caregivers of medically complex children are often high, yet programmatic, institutional, legal, and ethical barriers can limit access to appropriate care.

Integration of screening and treatment of caregivers’ mental health within the pediatric hospital setting is one pathway to addressing caregivers’ needs. The development of programs for caregiver mental health screening and treatment within pediatric hospital settings will enhance the well-being of children and families and reduce legal and ethical risks for pediatric psychologists. Consultation with institutional compliance, legal/risk, and medical records departments and the creation of electronic medical records for the caregiver may be useful and practical opportunities for integration.

This study is part of an overarching research initiative on the development and integration of an electronic Quality of Life and Practice Support System (QPSS) that uses patient-reported outcome and experience measures in clinical practice. The current study focused on palliative nurse consultants trialing the QPSS with older hospitalized adults receiving acute care. The primary aim of the study was to better understand consultants’ and patients’ experiences and perspectives of use.

The project involved two nurse specialists within a larger palliative outreach consult team (POCT) and consenting older adult patients (age 55+) in a large tertiary acute care hospital in western Canada. User-centered design of the QPSS was informed by three focus groups with the entire POCT team, and implementation was evaluated by direct observation as well as interviews with the POCT nurses and three patients. Thematic analysis of interviews and field notes was informed by theoretical perspectives from social sciences.

Over 9 weeks, the POCT nurses used the QPSS at least once with 20 patients, for a total of 47 administrations. The nurses most often assisted patients in using the QPSS. Participants referenced three primary benefits of relational use: enhanced communication, strengthened therapeutic relations, and cocreation of new insights about quality of life and care experiences. The nurses also reported increased visibility of quality of life concerns and positive development as relational care providers.

Participants expressed that QPSS use positively influenced relations of care and enhanced practices consistent with person-centered care. Results also indicate that electronic assessment systems may, in some instances, function as actor-objects enabling new knowledge and relations of care rather than merely as a neutral technological platform. This is the first study to examine hospital palliative consult clinicians’ use of a tablet-based system for routine collection of patient-reported outcome and experience measures.

Our purpose was to rigorously examine the nature of family meetings as conducted in an inpatient hospice care unit in order to generate an inductive theoretical model.

In this two-phase project, we first interviewed eight members of the interdisciplinary care team who participated in multiple family meetings each week. Interview questions explored why and how they conducted family meetings. Using an observation template created from these interview data, we subsequently conducted ethnographic observations during family meetings. Using the methods of grounded theory, our findings were synthesized into a theoretical model depicting the structure and process of formal family meetings within this setting.

The core of the family meeting was characterized by cognitive and affective elements aimed at supporting the family and facilitating quality care by clarifying the past, easing the present, and protecting the future. This inductive model was subsequently found to be highly aligned with a sense of coherence, an important influence on coping, and adaptation to the stress of a life-limiting illness.

Provider communication with family members is particularly critical during advanced illness and end-of-life care. The National Consensus Project clinical practice guidelines for quality palliative care list regular family meetings among the recommended practices for excellent communication during end-of-life care, but do not provide specific guidance on how and when to provide such meetings. Our findings provide a theoretical model that can inform the design of a family meeting to address family members' needs for meaningful and contextualized information, validation of their important contributions to care, and preparation for the patient's death.

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.

Assessment of delirium is performed with a variety of instruments, making comparisons between studies difficult. A conversion rule between commonly used instruments would aid such comparisons. The present study aimed to compare the revised Delirium Rating Scale (DRS–R98) and Memorial Delirium Assessment Scale (MDAS) in a palliative care population and derive conversion rules between the two scales.

Both instruments were employed to assess 77 consecutive patients with DSM–IV delirium, and the measures were repeated at three-day intervals. Conversion rules were derived from the data at initial assessment and tested on subsequent data.

There was substantial overall agreement between the two scales [concordance correlation coefficient (CCC) = 0.70 (CI95 = 0.60–0.78)] and between most common items (weighted κ ranging from 0.63 to 0.86). Although the two scales overlap considerably, there were some subtle differences with only modest agreement between the attention (weighted κ = 0.42) and thought process (weighted κ = 0.61) items. The conversion rule from total MDAS score to DRS–R98 severity scores demonstrated an almost perfect level of agreement (r = 0.86, CCC = 0.86; CI95 = 0.79–0.91), similar to the conversion rule from DRS–R98 to MDAS.

Overall, the derived conversion rules demonstrated promising accuracy in this palliative care population, but further testing in other populations is certainly needed.

Electronic health records (EHRs) may contain infomarkers that identify patients near the end of life for whom it would be appropriate to shift care goals to palliative care. Discovery and use of such infomarkers could be used to conduct effectiveness research that ultimately could help to reduce the monumental cost of caring for the dying. The aim of our study was to identify changes in the plans of care that represent infomarkers, which signal a transition of care goals from nonpalliative care ones to those consistent with palliative care.

Using an existing electronic health record database generated during a two-year longitudinal study of nine diverse medical–surgical units from four Midwest hospitals and a known group approach, we evaluated patient care episodes for 901 patients who died (mean age = 74.5 ± 14.6 years). We used ANOVA and Tukey's post-hoc tests to compare patient groups.

We identified 11 diagnoses, including Death Anxiety and Anticipatory Grieving, whose addition to the care plan, some of which also occurred with removal of nonpalliative care diagnoses, represent infomarkers of transition to palliative care goals. There were four categories of patients, those who had: no infomarkers on plans (n = 507), infomarkers added on the admission plan (n = 194), infomarkers added on a post-admission plan (minor transitions, n = 109), and infomarkers added and nonpalliative care diagnoses removed on a post-admission plan (major transition, n = 91). Age, length of stay, and pain outcomes differed significantly for these four categories of patients.

EHRs contain pertinent infomarkers that if confirmed in future studies could be used for timely referral to palliative care for improved focus on comfort outcomes and to identify palliative care subjects from data repositories in order to conduct big-data research, comparative effectiveness studies, and health-services research.

One of the most prevalent life-threatening illnesses is heart disease. The initial trauma of being diagnosed with a life-threatening illness or having a cardiac event can begin a psychosocial chain reaction that results in a transformation of the lives of these patients. The goal of our study was to investigate the lived experiences of psychosocial healing in rehabilitation of cardiac patients using a qualitative written interview.

A purposive sample of 14 cardiac event survivors was recruited. Participants were interviewed after informed consent and screening. We used a qualitative analysis and model-revision approach similar to the procedure outlined by Charmaz (2006).

Participants consistently mentioned that a heightened awareness of mortality was a motivating factor that led to participants focusing more on their family and relationships, having an enhanced outlook on life, and making healthy lifestyle changes.

If clinicians are able to employ a measure to better understand the nature of a patient's progression from cardiac event to successful recovery, interventions such as cardiac rehabilitation can be implemented earlier and more effectively during the course of the illness and recovery phases of treatment. Theoretically, this early detection of a patient's progression could reduce the time spent recovering from a cardiac event, and it would allow treatments for these conditions to better alleviate the psychosocial concerns faced by patients.

Dignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10–18).

Five stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic.

DT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10–18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others.

We developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes — 10–18 anos. This tool can potentially be considered a good addition for pediatric palliative care.

Although patients want to participate in discussions and decisions about their end-of-life care, studies show that providers frequently fail to invite them to explore advanced care preferences or goals for living. The purpose of our demonstration project was to provide education and coaching to individuals, health providers, and organizations across the state of Indiana intended to facilitate these conversations, documenting and honoring individuals' life goals and preferences for care during the final stages of life.

Education and training engaged community members as well as healthcare providers to: (1) improve participant comfort and facility discussing end-of-life issues; (2) improve knowledge of healthcare choices, including palliative and hospice care; and (3) prepare all participants to explore and document personal values, life goals, and priorities as well as goals of care.

Between January of 2013 and June of 2015, the team educated close to 5,000 participants. Participants' ratings of the quality and perceived usefulness of the educational events ranged from 4 to 5 (using a 5-point scale, with 5 = most effective). Participant comments were overwhelmingly favorable and indicated an intention to put the advance care planning resources, communication skills, knowledge of palliative and hospice care, and personal renewal techniques into practice.

Participant motivation to foster advance care planning, discussions of palliative care, and end-of-life conversations was facilitated by the reframing of these conversations as identifying goals of care and priorities for living well during an important stage of life. Successful strategies included helping providers and patients to adopt a broader meaning for “sustaining hope” (not for cure, but for engaging in highly valued activities), developing provider communication skills and comfort in initiating potentially difficult discussions, engaging a new community health workforce who will develop trusting relationships with patients in home-based services, and fostering self-awareness and self-care among palliative care providers.

Although assessment of palliative patients' needs is a key issue in palliative care, a suitable instrument for identification of such needs is not available in Central European countries. Our objectives were to produce an adequate tool for identifying the importance and satisfaction of palliative patients' needs and to verify its psychometric properties.

The patient needs assessment in palliative care (PNAP) instrument was constructed based on a literature review and qualitative research (focus groups, n = 5). The psychometric properties of the questionnaire were verified by a cross-sectional study. The convergent validity of the questionnaire was determined by confirmatory factor analysis. Furthermore, internal consistency, test–retest reliability, and construct validity were also tested. The qualitative research group comprised 30 participants (27 experts in palliative care, 1 patient, and 2 family members). Psychometric properties were evaluated in a group of 349 hospital inpatients terminally ill with chronic disease or cancer and receiving palliative care.

Based on the qualitative data analysis, a questionnaire was constructed that contained 42 items grouped into 5 domains. When testing the psychometric properties of the questionnaire, a new model containing 40 items in 7 domains was produced. Cronbach's α for the entire PNAP questionnaire was 0.89 on the importance scale and 0.80 on the satisfaction scale. Test–retest reliability was higher than 0.7 for all domains in both scales.

The results of tests on the psychometric properties of the PNAP questionnaire showed at least satisfactory validity and reliability, and it can be employed to assess the needs of palliative care patients in Central European countries.

Demoralization is prevalent in patients with life-limiting chronic illnesses, many of whom reside in rural areas. These patients also have an increased risk of disease-related psychosocial burden due to the unique health barriers in this population. However, the factors affecting demoralization in this cohort are currently unknown. This study aimed to examine demoralization amongst the chronically ill in Lithgow, a town in rural New South Wales, Australia, and identify any correlated demographic, physical, and psychosocial factors in this population.

A cross-sectional survey of 73 participants drawn from Lithgow Hospital, the adjoining retirement village and nursing home, assessing correlating demographic, physical, psychiatric, and psychosocial factors.

The total mean score of the DS-II was 7.8 (SD 26.4), and high demoralization scores were associated with the level of education (p = 0.01), comorbid condition (p = 0.04), severity of symptom burden (p = <0.001), depression (p = <0.001), and psychological distress (p = <0.001). Prevalence of serious demoralization in this population was 27.4% according to a cutoff of a DS-II score ≥11. Of those, 11 (15%) met the criteria for clinical depression, leaving 9 (12.3%) of the cohort demoralized but not depressed.

Prevalence of demoralization was high in this population. In line with the existing literature, demoralization was associated with the level of education, symptom burden, and psychological distress, demonstrating that demoralization is a relevant psychometric factor in rural populations. Further stratification of the unique biopsychosocial factors at play in this population would contribute to better understanding the burdens experienced by people with chronic illness in this population and the nature of demoralization.

Previous studies have shown that psychological stress and mental health problems increase the risk for cardiovascular disease (CVD) events, such as heart attack or stroke. Furthermore, after CVD events, the majority of patients report large stress. However, psychological treatments have only modest effects in CVD patients. Therefore, it has been argued that new conceptual models are needed to understand the aetiology of stress and mental health problems in CVD patients. Therefore, this study included a systematic literature review and a conceptual model on the role of meaning in life for psychological stress, mental health, and CVD risks.

A systematic literature review was conducted on relationships between CVD and meaning in life. PRISMA/MOOSE review guidelines were followed. These findings were used to build a conceptual model.

The literature review included 113 studies on meaning and CVD. The included studies described meaning as a predictor of cardiovascular risks and health, meaning-centered needs of patients in conversations with medical staff, meaning-centered changes after CVD events, meaning-centered coping with CVD, meaning as motivator of CVD-related lifestyle changes, and meaning as an element in psychological treatments of CVD patients. In sum, the literature showed that a central clinical concern for patients is their question how to live a meaningful life despite CVD. Meaning-centered concerns seem to lead to lower motivation to make lifestyle changes, more psychological stress, lower quality-of-life, worse physical well-being, and increased CVD risk. The ability to live a meaningful life after CVD events is related with lower stress, better mental health, and several biomarkers.

An evidence-based conceptual framework was developed for the relationship between meaning and CVD. It may be hypothesized CVD patients may benefit from psychological therapies focused on meaning.

The purpose of this study is to examine traits of hospice volunteers that facilitate their success in this informal caregiving role, with the larger goal of alleviating the family caregiver burden and providing additional support to the hospice patient. To achieve this goal, a new scale was developed to tap into how hospice volunteers view their patient advocacy role.

Participants were 136 trained hospice volunteers from the Midwest who had direct contact with hospice patients. Volunteers mailed anonymous surveys that included measures of argumentativeness, locus of control, attitudes toward patient advocacy, and key demographic items. A new scale was developed to measure patient advocacy by hospice volunteers called the Hospice Volunteer as Patient Advocate.

Submitting this scale to exploratory factor analysis, two factors emerged: duty as patient advocate and support of patient rights. After performing a multiple regression analysis, results showed that female volunteers who were high in internal locus of control were more likely to perceive that volunteers have a duty as patient advocates. Younger volunteers with more years of volunteer experience, higher levels of internal locus of control, and lower external locus of control were more likely to support patient rights.

The findings of this study could be used to formalize hospice volunteers' role as patient advocates, thus better utilizing them as committed, caring communicators and improving patient-centered care at end-of-life.

Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.

Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.

A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the “color” of death, social and professional support, the moment of death, and grief and loss.

The analysis showed that caregiving may positively or negatively influence the bereavement process.

Spirituality is what gives people meaning and purpose in life, and it has been recognized as a critical factor in patients’ well-being, particularly at the ends of their lives. Studies have demonstrated relationships between spirituality and patient-reported outcomes such as quality of life and mental health. Although a number of studies have suggested that spiritual belief can be associated with mortality, the results are inconsistent. We aimed to determine whether spirituality was related to survival in advanced cancer inpatients in Korea.

For this multicenter study, we recruited adult advanced cancer inpatients who had been admitted to seven palliative care units with estimated survival of <3 months. We measured spirituality at admission using the Korean version of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-sp), which comprises two subscales: meaning/peace and faith. We calculated a Kaplan-Meier curve for spirituality, dichotomized at the predefined cutoffs and medians for the total scale and each of the two subscales, and performed univariate regression with a Cox proportional hazard model.

We enrolled a total of 204 adults (mean age: 64.5 ± 13.0; 48.5% female) in the study. The most common primary cancer diagnoses were lung (21.6%), colorectal (18.6%), and liver/biliary tract (13.0%). Median survival was 19.5 days (95% confidence interval [CI95%]: 23.5, 30.6). Total FACIT-sp score was not related to survival time (hazard ratio [HR] = 0.981, CI95% = 0.957, 1.007), and neither were the scores for its two subscales, meaning/peace (HR = 0.969, CI95% = 0.932, 1.008) and faith (HR = 0.981, CI95% = 0.938, 1.026).

Spirituality was not related to survival in advanced cancer inpatients in Korea. Plausible mechanisms merit further investigation.

Some 25% of women and 8% of men in the United States have experienced childhood sexual abuse (CSA) before the age of 18. For these individuals, healthcare visits and interactions can be retraumatizing due to perceived similarities to past abuse (e.g., pain, undressing, lack of control). However, no prior studies have provided formal qualitative analyses regarding CSA survivors' reactions to cancer treatment. Therefore, our study's objective was to identify key themes pertaining to CSA survivors' cancer treatment experiences.

Male and female members of the Amazon Mechanical Turk (N = 159, mean age = 44.27 years, SD = 10.02) participated in an anonymous online survey study. The inclusion criteria included reporting: history of CSA; a diagnosis of colorectal, gynecological, breast, or skin cancer; and experience of triggers and/or difficulties during cancer treatment. Participants' responses to open-ended questions were analyzed using inductive thematic analysis.

We identified two primary themes describing CSA survivors' experiences: Theme 1: treatment-related triggers (key subthemes: procedure-related, provider-related, and emotional triggers); and Theme 2: questioning the meaning of cumulative trauma (e.g., “Why me again?”).

For CSA survivors, cancer and its treatment can trigger thoughts and emotions associated with the original abuse as well as negative evaluations of themselves, the world, and their future. Our findings are consistent with past research on CSA survivors' experiences in non-cancer healthcare settings and add to the literature by highlighting their struggles during cancer treatment. The present results can inform further research on trauma survivors' reactions to cancer treatment and give cancer care providers the context they need to understand and sensitively serve a substantial yet often overlooked patient group.