The aim of this study was to explore the type of relationship and the process of developing these relationships between nurses and patients in palliative care units in Japan. The special contribution that culture makes was examined to better understand the intensity of nurses’ grief after the death of their patient.

Thirteen Japanese registered nurses currently practicing in palliative care units were interviewed between July 2006 to June 2009. Theoretical sampling was utilised and the data were analysed using grounded theory methodology. Constant comparison was undertaken during coding processes until data saturation was achieved.

Significant cultural influences emerged both in the type of relationship nurses formed with patients and in the way they developed relationships. The type of relationship was termed ‘human-to-human’, meaning truly interpersonal. The cultural values of ‘Uchi (inside) and Soto (outside)’ have particular implications for the relationship. Four actions Being open, Trying to understand, Devoting time and energy, and Applying a primary nurse role, were identified as strategies for nurses to develop such relationships. The quality of this deeply committed encounter with patients caused nurses to grieve following patients’ death.

Culture is a major influence upon the reasons, complexities, and impact that lie behind nurses’ behaviours. Attention is needed to support nurses to sustain a fundamental caring quality in their relationships with patients.

The objective of this study was to develop a clinically relevant tool to assess parental engagement in decision making and planning for seriously ill children during palliative care consultations. Although little is known about the structure and process of planning meetings between parents and providers, less is known about the nature of parental engagement as it relates to decision making ability in pediatric end-of-life care. Using attachment and caregiving as a framework, this study clarified important dimensions of parental engagement.

Using a multi-phase, template-matching technique, both literature and pediatric palliative care consultation data were analyzed, iteratively reviewed, matched, and categorized to create a measure of parental engagement. The attachment paradigm serves as the theoretical framework for the study, which focuses on parental engagement in decision making as a caregiving system function. Attachment and related literatures as well as coping and pediatric palliative care literatures were used in the initial conceptual sampling phase.

The study yielded two groups of findings. The first set of findings centered on the findings of the literature and consultation template-matching phases of the work. These two phases yielded a conceptual model of parental engagement as a psychobehavioral complex consisting of three dimensions: information-centered dialogue, insightful participation, and achievement of a collaboratively agreed-upon plan. The final phases consisted of creation of a 9 point Parental Engagement Scale, scoring of the consultations, and establishment of initial inter- rater reliability at .80. Psychometric testing continues.

Parental engagement in decision making is a critical area for study and intervention. If we can support parents in their caregiving executive functions while understanding the psychological and emotional underpinnings of the caregiving system and parental engagement itself, we can move inquiry forward in understanding parental needs for intervention during this most profoundly challenging time.

The aim of this qualitative study was to gain a deeper understanding about couples' relationship changes over time (the first six months) after one partner is diagnosed with an incurable advanced melanoma (stage III or IV).

In semistructured interviews, eight patients and their partners were asked separately about potential changes in their relationship since diagnosis. The same questions were asked again six months later, but focusing on relationship changes over the preceding six months. Some 32 audiotaped interviews were analyzed applying qualitative content analysis.

At baseline (t1), relationship changes were mostly reported in terms of caring, closeness/distance regulation, and communication patterns. While changes in caregiving and distance/closeness regulation remained main issues at six months follow-up (t2), greater appreciation of the relationship and limitations in terms of planning spare time also emerged as major issues. Unexpectedly, 50% of patients and partners reported actively hiding their negative emotions and sorrows from their counterparts to spare them worry. Furthermore, qualitative content analysis revealed relationship changes even in those patients and partners who primarily reported no changes over the course of the disease.

Our findings revealed a differentiated and complex picture about relationship changes over time, which also might aid in the development of support programs for couples dealing with advanced cancer, focusing on the aspects of caring, closeness/distance regulation, and communication patterns.

This paper is concerned with the phenomenology of death awareness within the context of being diagnosed with terminal cancer. The objective of the research presented here is to provide a deeper insight into terminally ill cancer patients’ engagement with their mortality.

The analysis forms part of a wider project that involved conducting a metasynthesis of 23 phenomenological studies of the experience of living with the awareness of having terminal cancer published between 2011 and 2016.

The metasynthesis identified four master themes that represent distinct experiential dimensions of living with terminal cancer. This paper focuses on one of these themes, liminality, to provide novel insights into the structure of death awareness whilst living with terminal cancer.

The results suggest that liminality describes an experiential space from within which terminal cancer patients encounter a new relationship with their existence. Liminality offers opportunities for both connection (e.g., with the natural world) as well as disconnection (e.g., from loved ones and others who still have a future) and therefore contains the potential for suffering and distress as well as for joy and a sense of fulfillment. This understanding of liminality can help healthcare professionals provide psychological support for this client group.

Family members are often involved in the provision of care to a relative at some point in their life. Their role becomes inherently complex when their care recipient is interested in seeking medical assistance in dying (MAID). As assisted death for “grievous and irremediable conditions” was legalized in Canada in 2016, the perspectives of family caregivers have received little attention. To best support caregivers to individuals seeking assisted dying, healthcare practitioners must first understand the perspectives of family caregivers in this context. The objective of this qualitative study was to explore the experiences and support needs of family caregivers who are or who have provided care to individuals who are seeking or have sought MAID.

This study employed a qualitative descriptive design. Family caregivers supporting individuals living with grievous and irremediable conditions were recruited through social media outlets and support organizations. Data were collected through semi-structured telephone interviews and online surveys. Data were transcribed and analyzed using thematic analysis.

The study included 11 participants, comprising spouses, parents, and adult children. The research identified three prevalent themes: the caregiver experience including roles and responsibilities and the impact of their role; the MAID experience including the process and their thoughts and feelings about MAID; and caregiver insight into supports and services viewed as valuable or needed for the MAID process.

Study findings may assist in the provision and development of best practice resources and guidelines to support healthcare professionals involved in the delivery of MAID. Specifically, caregivers need to be supported in the context of their caregiving responsibilities to minimize the impact on their own lives and optimize their MAID experience.

Implementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals’ experiences of the use of IPOS in acute care settings.

Data were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed.

A total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals’ participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: “IPOS acting as a facilitator” and “barriers to the use of IPOS.” The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals’ feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS.

We found an association between healthcare professionals’ participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.

The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors.

A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015–2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients’ records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors.

About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin.

The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

The aim of this study was to determine the factors associated with a feeling of well-being using the Edmonton Symptom Assessment Scale (ESAS)–Feeling of Well-Being item (ESAS–FWB; where 0 = best and 10 = worst) among advanced lung or non-colonic gastrointestinal cancer patients who were referred to an outpatient palliative care clinic (OPCC). We also examined the association of performance on the ESAS–FWB with overall survival (OS).

We reviewed the records of consecutive patients with incurable advanced lung cancer and non-colonic gastrointestinal cancer presenting to an OPCC from 1 January 2008 through to 31 December 2013. Descriptive statistics were employed to summarize patient characteristics. Multivariate regression analysis was used to determine the factors associated with ESAS–FWB severity. We also examined the association of ESAS–FWB scores and survival using Kaplan–Meier survival analysis.

A total of 826 evaluable patients were analyzed (median age = 62 years, 57% male). Median ESAS–FWB scores were five times the interquartile range (5 × IQR; 3–7). ESAS–FWB score was found to be significantly associated with ESAS fatigue (OR = 2.31, p < 0.001); anxiety (OR = 1.98, p < 0.001); anorexia (OR = 2.31, p < 0.001); cut down, annoyed, guilty, eye opener (CAGE) score (hazard ratio [HR] = 1.80, p = 0.008); and family caregiver distress (HR = 1.93, p = 0.002). A worse ESAS–FWB score was significantly associated with decreased OS (r = –0.18, p < 0.001). However, ESAS–FWB score was not independently associated with OS in the final multivariate model (p = 0.35), which included known major clinical prognostic factors.

Worse ESAS–FWB scores were significantly associated with high scores on ESAS fatigue, anorexia, anxiety, CAGE, and family caregiver distress. More research is necessary to understand how palliative care interventions are capable of improving the contributory factors related to ESAS–FWB score.

To compare the experiences of women with metastatic breast cancer (MBC) in computer-mediated and face-to-face support groups.

Interviews from 18 women with MBC, who were currently in computer-mediated support groups (CMSGs), were examined using interpretative phenomenological analysis. The CMSGs were in an asynchronous mailing list format; women communicated exclusively via email. All the women were also, or had previously been, in a face-to-face support group (FTFG).

CMSGs had both advantages and drawbacks, relative to face-to-face groups (FTFGs), for this population. Themes examined included convenience, level of support, intimacy, ease of expression, range of information, and dealing with debilitation and dying. CMSGs may provide a sense of control and a greater level of support. Intimacy may take longer to develop in a CMSG, but women may have more opportunities to get to know each other. CMSGs may be helpful while adjusting to a diagnosis of MBC, because women can receive support without being overwhelmed by physical evidence of disability in others or exposure to discussions about dying before they are ready. However, the absence of nonverbal cues in CMSGs also led to avoidance of topics related to death and dying when women were ready to face them. Agendas for discussion, the presence of a facilitator or more time in CMSGs may attenuate this problem.

The findings were discussed in light of prevailing research and theories about computer-mediated communication. They have implications for designing CMSGs for this population.

This study explores the views of healthcare professionals regarding care and treatment goals in irreversible terminal delirium and their effect on patients and caregivers.

We conducted a qualitative interview study of healthcare professionals (palliative care physician, oncologist, psycho-oncologist, and clinical psychologist) engaged in the treatment of terminally ill cancer patients. We assessed the views of healthcare workers regarding treatment goals in terminal delirium and their effect on patients and their families.

Of the 21 eligible healthcare professionals, 20 agreed to participate in this study. Three of the professionals had experience with treating terminal delirium as family caregivers. We identified five important aspects of treatment goals in terminal delirium based on the views of healthcare professionals: (1) adequate management of symptoms/distress, (2) ability to communicate, (3) continuity of self, (4) provision of care and support to families, and (5) considering a balance (between symptom alleviation and maintaining communication; between symptom alleviation and family preparations for the death of patients; balance between specific treatment goals for delirium and general treatment goals).

According to the views of healthcare workers questioned in this study, goals of care and treatment in terminal delirium are multidimensional and extend beyond simply controlling patient symptoms.

Sleep is one of the important measurements of the quality of life for children especially suffering from a chronic illness such as cancer. Our aim was to determine the changes in sleep quality and to investigate the effect of virtual reality-based exercise (VRBE) approaches on sleep in patients with acute lymphoblastic leukemia (ALL) off treatment.

The participants (ALL and healthy siblings) were evaluated for sleep quality with polysomnography and “Children's Sleep Habit Questionnaire” before and after 12 weeks. The study randomized into two groups: an exercise group who received VRBE in two days in a week, 45 min of each session for 12 weeks and an control group who were managed with supportive measures. The VRBE comprised of aerobic exercise in four different games by Nintendo Wii Fit Plus®.

This randomized controlled trial was carried out on 38 participants. Before intervention, ALL patients (n = 24) and healthy siblings (n = 14) had similar sleep quality in terms of polysomnography and Children's Sleep Habit Questionnaire findings. After intervention, total time asleep (p = 0.023), respiratory disturbance index of hypopnea (p = 0.005), apnea/hypopnea index (p = 0.008), and number of apnea (p = 0.028) statistically significant improved.

Patients with ALL off treatment had similar values of sleep quality with healthy siblings. Novel types of exercises like VRBE have positive effects on sleep disorders in children with ALL and also healthy siblings. Future studies are needed comparing the different types of interventions.

The importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs.

The electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period 2000–2015.

Finding revealed that working with children with palliative care needs is an emotionally struggling job for nurses, especially when they try to manage the transition of pediatric patients from curative to palliative care. Staffing level and time constraints comprise a major obstacle in pediatric palliative care. Focusing on invasive treatment and technology in spite of the feelings that it will not improve patients' health status intensifies the feeling of guilt and helplessness for nurses. Finally, nurses asserted the importance of receiving pediatric palliative care education, especially how to communicate with children with palliative care needs and their families.

Further research is recommended with regard to nurses' experience in communication with children with palliative care needs. Nursing education in pediatric palliative care is significantly important, especially how to communicate with children with palliative care needs and their families.

This study describes the cross-cultural validation and psychometric evaluation of the Spiritual Care Competence Scale – Brazilian Portuguese version. This reliable and valid instrument is recommended in the literature to measure the outcomes of the education process in the development of spiritual care competences.

This is a cross-sectional validation study following the stages proposed by Beaton et al.: translation into Portuguese, back translation into English, expert committee review for semantic equivalence, assessment of the clarity of the pre-final version, and evaluation of the psychometric properties of the final version in Portuguese. Health professionals working at a public hospital in South Brazil participated in the different stages of this study.

Regarding internal consistency, total Cronbach's alpha was 0.92 and the mean inter-item correlation was 0.29. The test-retest procedure showed no statistically significant differences in the six subscales. The intraclass correlation coefficient ranged from 0.67 to 0.84, demonstrating the stability of the scale.

The results support the psychometric quality of the scale and indicate that the adapted instrument is a valid and reliable scale with good internal consistency for measuring spiritual care competencies of health professionals in Brazilian healthcare settings.

The provision of psychological support to caregivers is an important part of the role of the clinical staff working in palliative care. Staff knowledge and attitudes may determine their openness to referring caregivers to a psychological intervention. We recently developed a self-help intervention for grief and psychological distress among caregivers and were interested in exploring the extent to which staff knowledge and attitudes might affect future implementation. The aims of our study were to: (1) examine the acceptability of self-help psychological intervention for caregivers among palliative care clinical staff; (2) examine potential attitudinal barriers toward prolonged grief disorder (PGD) as a diagnosis and interventions for grief; and (3) bolster staff confidence in skills and knowledge in identifying and managing caregiver psychological distress.

An anonymous survey was distributed among clinical staff at two inpatient units and two community health services that assessed the acceptability of self-help interventions for caregivers, attitudes about PGD diagnosis and grief intervention, and staff confidence in skills and knowledge in assessing caregiver psychological distress.

Overall, clinical staff were positively oriented toward self-help for caregivers and intervention for grief. They were also basically confident in their skills and knowledge. While it was positive PGD attitudes that were associated with acceptability of self-help for caregivers, it was both positive and negative PGD attitudes that were associated more specifically with a willingness to refer caregivers to such an intervention.

Our findings are useful in highlighting the issues to be considered in the implementation of a self-help intervention within the healthcare service. Clinical staff seemed positively oriented toward engaging with a psychological intervention for caregivers and likely to act as key allies in implementation.