Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable.

This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data.

The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits.

The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

Cancer affects both patients and their caregivers. Caregiver burden may change during different stages of the patients' cancer trajectory. Limited research has focused on the impact of being a caregiver, assessed by the caregiver's mental health and quality of life (QOL) during the curative and the palliative phases of the patient's disease. The aim of this study is to compare caregivers of cancer patients during the curative and a palliative phases with respect to their mental health and health-related QOL.

This descriptive, cross-sectional study combines data from two studies. The first group consists of caregivers of patients with cancer in the late palliative phase and the second group consists of caregivers of outpatients with cancer who suffer from pain and/or use analgesics. Data were collected by means of standardized measures and analyzed with descriptive statistics.

Based on this material, no significant differences in mental health and health- related QOL were revealed for caregivers of cancer patients in the palliative and the curative phases, respectively. Neither education level in the caregivers, nor the patients' functional status influenced caregivers' mental health or QOL. Younger caregivers seem to have better physical QOL.

Being caregivers of cancer patients seems to have a similar pattern of impact on caregivers' mental health and quality of life regardless of the patient's disease stage. We share some reflections about the way in which the cancer stage is divided and the appropriateness of such selection for measuring caregivers' mental health and QOL. Additionally, we discuss the use of generic instruments for measuring specific contexts and particular samples.

Survivors of hematopoietic stem cell transplant (HSCT) have experienced a life threatening and potentially traumatic illness and treatment that make them vulnerable to long lasting negative psychological outcomes, including anxiety and depression. Nevertheless, studies show that overcoming cancer and its treatment can present an opportunity for personal growth and psychological health (reduced symptoms of anxiety and depression and high levels of emotional well-being) through resilience. However, research has not yet clarified what differentiates HSCT survivors who experience psychological growth from those who do not. By analyzing recovery narratives, we examined whether HSCT survivors’ interpretation of their experiences helps explain differences in their post-treatment psychological health.

Guided by narrative psychology theory, we analyzed the narratives of 23 HSCT survivors writing about their experience of cancer treatment. Psychological health was measured by: (1) emotional well-being subscale part of the Functional Assessment of Cancer Therapy Bone Marrow Transplant (FACT-BMT), (2) depression, and (3) anxiety subscales of the Brief Symptom Inventory.

Findings revealed a positive relation between psychological health and a greater number of redemption episodes (going from an emotionally negative life event to an emotionally positive one) as well as fewer negative emotional expressions.

Theoretical and practical implications of these findings are discussed, showing how narratives can inform interventions to assist cancer survivors with their psychological recovery.

Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making.

We employed a self-administered, quantitative survey of patients in a tertiary care center.

Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants.

Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

Effective communication regarding death and dying in pediatrics is a vital component of any quality palliative care service. The goal of the current study is to understand communication among health care professionals regarding death and dying in children. The three hypotheses tested were: (1) hospital staff (physicians of all disciplines, nurses, and psychosocial clinicians) that utilize consultation services are more comfortable communicating about death and dying than those who do not use such services, (2) different disciplines of health care providers demonstrate varying levels of comfort communicating about a range of areas pertaining to death and dying, and (3) health care staff that have had some type of formal training in death and dying are more comfortable communicating about these issues.

A primary analysis of a survey conducted in a tertiary care teaching children's hospital.

Health care professionals who felt comfortable discussing options for end of life care with colleagues also felt more comfortable: initiating a discussion regarding a child's impending death with his/her family (r = 0.42), discussing options for terminal care with a family (r = 0.58), discussing death with families from a variety of ethnic/cultural backgrounds (r = 0.51), guiding parents in developmentally age-appropriate discussions of death with their children (r = 0.43), identifying and seeking advice from a professional role model regarding management concerns (r = 0.40), or interacting with a family following the death of a child (r = 0.51). Among all three disciplines, physicians were more likely to initiate discussions with regards to a child's impending death (F = 13.07; p = 0.007). Health care professionals that received formal grief and bereavement training were more comfortable discussing death.

The results demonstrated that consultation practices are associated with a higher level of comfort in discussing death and dying in pediatrics.

To document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision.

A total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care.

Mostly, needs assessment for women and caregivers was part of current practice but done without validated tools or a checklist. Only 30% of respondents reported having documented referral pathways. Most respondents simply recorded a plan for meeting needs within the patients’ medical record (63% for patients; 46% for caregivers) rather than using a formalized care plan (15% for patients; 6% for caregivers). The interviewees’ comments supported survey results that having sufficient time to discuss issues was both the most important enabling factor and the greatest barrier to successful supportive care provision. The interviewees further discussed variations in needs based on age, cultural background, and phases within the cancer care continuum, and that best practice supportive care should involve a multidisciplinary team and customizable protocols.

There is much room for improvement in the assessment of needs and provision of supportive care to women with gynecological cancer and their caregivers. Approaches to optimize use of consultation time (e.g., needs assessment tools and referral protocols) are necessary. Flexibility in the form and mode of delivery of support may be required to meet diverse personal preferences and incorporate caregivers.

This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness.

Our methods included: (1) a literature search for published English-language research articles from 2005–2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings.

Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value—most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them.

This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.

The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment.

An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families.

The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at life's end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices.

Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.

In the biopsychosocial approach, perceived social support has served as a protective factor for psychological adjustment to cancer. This study aimed to determine the influence of different coping responses and health-related quality of life (HRQoL) domains on perceived social support during cancer treatment.

A cross-sectional analysis was carried out in a sample of 757 cancer outpatients. The Medical Outcomes Study Social Support Survey (MOS–SSS) was employed to assess perceived social support. The Mental Adjustment to Cancer (MAC) Scale measured coping response, and HRQoL was tested with the Medical Outcomes Study Short Form–36 (SF–36). Multivariate analyses were carried out to examine the extent to which coping and HRQoL were associated with perceived social support.

Coping response explained only 2% of the variance in perceived social support, but Hopelessness had a significant influence on perceived social support (p ≤ 0.01). HRQoL, physical, and mental domains made a significant contribution toward perceived social support, accounting for around 10% of total variance. More than coping response, HRQoL's physical and mental domains had an important influence on perceived social support during cancer treatment.

The findings of the current study report the importance of HRQoL domains in predicting perceived social support during cancer treatment, emphasizing the holistic and multidisciplinary approach to facilitate adjustment to cancer.

The Demoralization Scale (DS) is the most widely used measure for assessing demoralization. Following the recent clamor for brief assessment tools, and taking into account that demoralization has proved to be a symptom that needs to be controlled and treated in the palliative care setting, a shorter scale is needed. The aim of the present research is to introduce and evaluate the Short Demoralization Scale (SDS).

We employed a cross-sectional design that included a survey of 226 Spanish palliative care patients from the Hospital General Universitario de Valencia. We employed the SDS, the DS, and the Hospital Anxiety and Depression Scale (HADS).

The confirmatory factor analysis supported the one-factor structure of the SDS (χ2(5) = 12.915; p = 0.024; CFI = 0.999; RMSEA = 0.084; CI95% = [0.028, 0.141]). The reliability was found to be appropriate, with a value of Cronbach's alpha (α) equal to 0.920. A cutoff criterion of 10 was established, which favored the interpretability of the instrument.

The SDS corrects previous limitations, has a simple scoring system, is cost-effective, and is widely and fully available. In addition, our findings demonstrate that the SDS can be employed effectively in the clinical context.

Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care.

Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis.

Thematic and cross-comparative analyses found three general kinds of learning that were described—knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about “learning” appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase “I have had to learn.”

Findings can inform the development of individualized educational programs and interventions for family caregivers.

Palliative care services are becoming more commonplace in hospitals and have the potential to reduce hospital costs through length of stay reduction and remediation of symptoms. However, there has been little systematic attempt to identify when a palliative care consultation should be triggered in a hospital, and there is some evidence that these services are under-utilized and not fully understood.

In an initial attempt to address when a consultation might be appropriate, we attempted to pilot test a novel palliative care screening tool to help guide clinician judgment in this regard. A one-page, face-valid instrument was developed using expert opinion.

The sample comprised 33 men (44.6%) and 41 women (55.4%) with an average age of 63.4 years (SD = 13.8) and an average length of stay of 22.7 days (SD = 10.1). The most significant symptom was pain, indicated as moderate-to-severe in 23 patients (31%). This was followed by fatigue (n = 10, 13.5%) and nausea (n = 6, 8.1%). At unit entry, 20 patients (33%) had moderate or severe pain. Upon discharge, this number had been reduced to 12/60 (20%). Chi-Square analysis showed a significant decrease in pain rankings overall (χ2 = 36.3, p < 0.0001). The average total tool score was 7.5 (SD = 3.1). Using an initial threshold of 12 to trigger a palliative care referral, 64 patients (86.5%) would not have received a referral and 10 (13.5%) would have. Of these 10 patients, 2 (20%) did not receive a palliative care consultation while they were hospitalized.

The tool we developed increased consultations over the time period in which it was used, compared with the same time period 1 year prior. Although the threshold developed for triggering referrals seemed artificially high, the implementation of the screening tool did increase referrals.

There is no standardized and universally accepted pain classification system for the assessment and management of cancer pain in both clinical practice and research studies. The Edmonton Classification System for Cancer Pain (ECS–CP) is an assessment tool that has demonstrated value in assessing pain characteristics and response. The purpose of our study was to determine the relationship between negative ECS–CP features and some pain-related variables like pain intensity and opioid use. We also explored whether the number of negative ECS–CP features was associated with higher pain intensity.

The electronic charts of 100 patients at an outpatient supportive care clinic in a comprehensive cancer center were reviewed for variables like patient characteristics, initial ECS–CP assessment, morphine equivalent daily dose (MEDD), opioid rotation, Edmonton Symptom Assessment Score (ESAS), and use of adjuvant analgesics.

Some 91 of the 100 charts were eligible for analysis. The most common primary cancer type was gastrointestinal (22.1%). The median pain intensity was 6, and the median MEDD was 45 mg. Neuropathic pain was associated with higher median pain intensity (7 vs. 5, p = 0.007) and median MEDD requirement (83 vs. 30, p = 0.013). Psychological distress was associated with higher median pain intensity (7 vs. 5, p = 0.042). Incident pain was also associated with a trend toward higher pain intensity (6 vs. 5, p = 0.06). A higher number of negative ECS–CP features was associated with higher pain intensity (p = 0.01).

The ECS–CP was successfully completed in the majority of patients, demonstrating its utility in routine clinical practice. Neuropathic pain and psychological distress were associated with higher pain intensity. Also, neuropathic pain was associated with a higher MEDD. A higher sum of negative ECS–CP features was associated with higher pain intensity. Further studies will be needed to verify and explore these observations.

Employing a cross-sectional design, the current study examined the relationships between various agents and types of support and posttraumatic growth (PTG) among women with breast cancer.

Eighty married women who were coping with breast cancer completed social support and PTG questionnaires.

All agents of social support (family, friends, belief-based), excluding spousal support, and all types of social support were found to be related to the various PTG dimensions and its total score. Regression analyses revealed that, among the agents of support, only support provided from friends and belief-based support uniquely contribute to prediction of total PTG score. While examining the contribution of various types of support, only cognitive support had a unique contribution to prediction of total PTG score.

Various agents and types of support play different roles in the PTG process following breast cancer. Accordingly, friends as an agent of support and information as a type of support seem to be most important in enhancing PTG among women with breast cancer.

Mindfulness is a concept of growing impact on psychotherapy and has been shown to be effective for stress reduction and to improve psychological well-being. Existential Behavioural Therapy (EBT) was developed to support relatives of palliative care (PC) patients to cope with their situation during caregiving and bereavement. Mindfulness training was a core element of the intervention.

We investigated the relationship between mindfulness, mental distress, and psychological well-being in informal caregivers, and evaluated if the effects of the intervention were mediated by mindfulness.

Relatives of PC inpatients took part in a randomized-controlled EBT trial and completed the Cognitive and Affective Mindfulness Scale-Revised, items from the Five Facets of Mindfulness as well as the Brief Symptom Inventory, the Satisfaction with Life Scale, the WHOQOL-BREF, a numerical rating scale on quality of life (range 0–10), and the Schedule for Meaning in Life Evaluation at pre- and post-intervention, and a 3- and 12-months follow-up.

One-hundred-and-thirty carers were included, most of them (71.6%) recently being bereaved at the beginning of the intervention. High correlations between mindfulness and mental distress (r = −0.51, p < 0.001) as well as life satisfaction (r = 0.52, p < 0.001) were found. Mindfulness was a significant predictor of improvement in psychological distress, meaning in life and quality of life three months after the intervention. The EBT effects were partly mediated by mindfulness.

Mindfulness seems to be a promising concept in supporting informal caregivers of PC patients. Further research is needed to identify the required format and intensity of mindfulness practice necessary for improvement.

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.

Although support programs for children whose parents have cancer have been described and evaluated, formal research has not been conducted to document outcomes. We adapted a group intervention called CLIMB®, originally developed in the United States, and implemented it in Tokyo, Japan, for school-aged children and their parents with cancer. The purpose of this exploratory pilot study was to examine the feasibility, acceptability, and impact of the Japanese version of the CLIMB® Program on children's stress and parents' quality of life and psychosocial distress.

We enrolled children and parents in six waves of replicate sets for the six-week group intervention. A total of 24 parents (23 mothers and 1 father) diagnosed with cancer and 38 school-aged children (27 girls and 11 boys) participated in our study. Intervention fidelity, including parent and child satisfaction with the program, was examined. The impact of the program was analyzed using a quasiexperimental within-subject design comparing pre- and posttest assessments of children and parents in separate analyses.

Both children and parents experienced high levels of satisfaction with the program. Children's posttraumatic stress symptoms related to a parent's illness decreased after the intervention as measured by the Posttraumatic Stress Disorder–Reaction Index. No difference was found in children's psychosocial stress. The Functional Assessment of Chronic Illness Therapy scores indicated that parents' quality of life improved after the intervention in all domains except for physical well-being. However, no differences were found in parents' psychological distress and posttraumatic stress symptoms.

Our results suggest that the group intervention using the CLIMB® Program relieved children's posttraumatic stress symptoms and improved parents' quality of life. The intervention proved the feasibility of delivering the program using manuals and training. Further research is needed to provide more substantiation for the benefits of the program.

Spiritual care is an essential component of quality palliative care. Recognizing the importance, the Department of Veterans Affairs (VA) mandates the inclusion of chaplains in a palliative care consult team (PCCT). The purpose of this study is to explain the process and content of spiritual care provided in a VA Medical Center from chaplains' perspectives.

Five Christian chaplains who provide care to patients at end of life were interviewed. Each interview was recorded and transcribed. Analysis based on the grounded theory was used to identify themes from each interview question.

The PCCT in this study appeared to have a strong referral and communication system in which every palliative care patient was seen by a chaplain and the care plan was discussed with an interdisciplinary team. Chaplains reported providing a range of services, which addressed religious, spiritual, emotional, family, and illness concerns. Chaplains were aware of the unique spiritual needs of veterans, including working through guilt for killing in war and requiring forgiveness. Chaplains' ideas for improvement of spiritual care services included increasing time to provide care, providing bereavement care and support to families, and adding chaplains with different religious backgrounds. Chaplains reported how their own spirituality influenced the care they provided.

Spiritual care in the VA can include a range of services and should consider the unique needs of the veteran population. Future studies can build upon our findings from chaplains to learn about the perspectives of patients, family, and other healthcare providers of spiritual care. This information would allow identification of strengths of current spiritual care practices and areas for care improvement, and ultimately could improve the well-being of patients at the end of life.

Expectant parents who live through perinatal loss experience intense grief, which is not always acknowledged or accepted. A screening tool to detect bereaved parents’ grief reactions can guide professionals, including perinatal palliative care teams, to provide follow-up for those in need. This review's goal is to identify and synthesize the international published literature on existent instruments specifically measuring the grieving process after any perinatal loss and to identify factors that could moderate grief reactions.

Systematic review (PROSPERO # CRD42018092555) with critical synthesis. PUBMED, Cochrane, and PsycINFO databases were searched in English language articles using the keywords “perinatal” AND (“grief” OR “bereavement” OR mourning) AND (“scale” OR “questionnaire” OR “measure” OR “assessment”) up to May 2018. Eligibility criteria included every study using a measure to assess perinatal grief after all kinds of perinatal losses, including validations and translations to other languages and interventions designed to alleviate grief symptoms.

A total of 67 papers met inclusion criteria. Seven instruments measuring perinatal grief published between 1984 and 2002 are described. The Perinatal Grief Scale (PGS) was used in 53 of the selected studies. Of those, 39 analyzed factors associated with grief reactions. Six articles used PGS scores to evaluate pre- and post-bereavement interventions. Studies in English language only might have limited the number of articles.

The PGS is the most used standardized measures to assess grief after perinatal loss. All parents living through any kind of perinatal loss should be screened.

This study aims to assess the knowledge and attitude of nurses toward pediatric palliative care (PPC) and examine the impact of an educational program on pediatric nurses’ knowledge and attitude regarding PPC for children facing life-threatening illnesses or chronic diseases in Jordan.

A quasi-experimental design was used. Exactly 120 pediatric nurses participated in the study, of which 60 were in the intervention group and 60 in the control group.

The results of the study showed that nurses had a low score in knowledge and attitude toward PPC. The mean knowledge score of PPC for the control group is 6.88 (SD = 2.26), while that of the intervention group was 7.92 (SD = 1.99; p = 0.052). The mean attitude for PPC score for the control group was 95.88 (SD = 7.90), while that of the intervention group was 100 (SD = 10.95; p = 0.009). Also, the educational intervention had a significant positive effect on the knowledge and attitude toward PPC among nurses.

Based on the result of this study, the authors found strong evidence of the effectiveness of the PPC educational program when it came to improving the nurses’ knowledge and attitude toward PPC services and offer us an effective educational program.