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.

This study aimed to investigate health-related quality of life of palliative care (PC) clients and their caregivers, at baseline and follow-up, following a referral to a community PC service.

Quality of life of clients and their caregivers was respectively measured using the McGill Quality of Life instrument (MQoL) and the Caregiver Quality of Life Cancer Index (CQoLC) instruments. Participants were recruited from June 8 to October 27, 2006. This study was undertaken in one zone of an Area Health Service in New South Wales, which has a diverse socioeconomic population. The zone covers an area of 6237 km2 and is divided into five sectors, each with a PC service, all of which participated in this study.

Data were obtained from 49 clients and 43 caregivers at baseline, and 22 clients and 12 caregivers at 8 week follow-up. Twenty-one participants died and six moved out of the area during the study. At baseline, clients reported a low mean score for physical symptoms (3.3 ± 1.9) and a high score for support (8.7 ± 1.0). Caregivers scored a total CQoLC of 63.9 ± 21.4 and clients had a total QOL of 6.1 ± 1.3. At follow up, matched data for 22 clients and 13 caregivers demonstrated no statistical differences in quality of life.

This study has provided evidence that health-related quality of life questionnaires show lower scores for physical health and higher scores for support, which can directly inform specific interventions targeted at the physical and support domains.

The aim was to to establish core components of spiritual care training for healthcare professionals in Australia.

This study used the Delphi technique to undertake a consensus exercise with spiritual care experts in the field of healthcare. Participant opinion was sought on (i) the most important components of spiritual care training; (ii) preferred teaching methods; (iii) clinical scenarios to address in spiritual care training; and (iv) current spiritual assessment and referral procedures.

Of the 107 participants who responded in the first round, 67 (62.6%) were female, 55 (51.4%) worked in pastoral care, and 84 (78.5%) selected Christian as their religious affiliation. The most highly ranked components of spiritual care training were “relationship between health and spirituality,” followed by “definitions of spirituality and spiritual care.” Consensus was not achieved on the item “comparative religions study/alternative spiritual beliefs.” Preferred teaching methods include case studies, group discussion, role-plays and/or simulated learning, videos of personal stories, and self-directed learning. The most highly ranked clinical scenario to be addressed in spiritual care training was “screening for spiritual concerns for any patient or resident.” When asked who should conduct an initial spiritual review with patients, consensus was achieved regarding all members of the healthcare team, with most nominating a chaplain or “whoever the patient feels comfortable with.” It was considered important for spiritual care training to address one's own spirituality and self-care. Consensus was not achieved on which spiritual care assessment tools to incorporate in training.

This Delphi study revealed that spiritual care training for Australian healthcare professionals should emphasize the understanding of the role of spirituality and spiritual care in healthcare, include a range of delivery methods, and focus upon the incorporation of spiritual screening. Further work is required to identify how spiritual care screening should be conducted within an Australian healthcare setting.

The purpose of this study was to qualitatively examine the content of the psychological responses in interviews with breast cancer outpatients receiving initial medical consultation.

The participants were 180 people who visited the breast cancer outpatient clinic at Kitasato University Hospital between November 2004 and August 2005. The remaining 176 participants (39 breast cancer patients and 137 benign tumor patients; average age ± SD: 50.7 ± 12.4 years) were analyzed. Two clinical psychologists carried out the interview, asking the participants to speak freely about their anxieties, worries, thoughts, and feelings up until the medical examination. This study used a content analysis of interviews to chronologically examine psychological response of cancer patients seeking medical consultation at three points in time.

Patients at the time of their first outpatient breast cancer consultation experience negative feelings before the examination, directly influenced by the suspicion of cancer. These include anxiety and worries, fear, evasion, depression, and impatience. These tendencies do not change at the time of consultation. However, in addition to negative feelings, some people also possess positive feelings, either simultaneously or at a different point in time. Further, many patients tend to talk at length about psychological responses before seeking treatment, understanding the process they went through to come to seek treatment as an important event.

It is important for medical workers to bear in mind the psychological conflicts that patients may undergo before seeking treatment and ensure that sufficient communication takes place.

This study examined changes in health-related quality of life (HRQoL) and quality of care (QoC) as perceived by terminally ill cancer patients and a stratified set of HRQoL or QoC factors that are most likely to influence survival at the end of life (EoL).

We administered questionnaires to 619 consecutive patients immediately after they were diagnosed with terminal cancer by physicians at 11 university hospitals and at the National Cancer Center in Korea. Subjects were followed up over 161.2 person-years until their deaths. We measured HRQoL using the core 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and QoC using the Quality Care Questionnaire–End of Life (QCQ–EoL). We evaluated changes in HRQoL and QoC issues during the first three months after enrollment, performing sensitivity analysis by using data generated via four methods (complete case analysis, available case analysis, the last observation carried forward, and multiple imputation).

Emotional and cognitive functioning decreased significantly over time, while dyspnea, constipation, and pain increased significantly. Dignity-conserving care, care by healthcare professionals, family relationships, and QCQ–EoL total score decreased significantly. Global QoL, appetite loss, and Eastern Cooperative Oncology Group Performance Status (ECOG–PS) scores were significantly associated with survival.

Future standardization of palliative care should be focused on assessment of these deteriorated types of quality. Accurate estimates of the length of life remaining for terminally ill cancer patients by such EoL-enhancing factors as global QoL, appetite loss, and ECOG–PS are needed to help patients experience a dignified and comfortable death.

Several studies supported the usefulness of “the surprise question” in terms of 1-year mortality of patients. “The surprise question” requires a “Yes” or “No” answer to the question “Would I be surprised if this patient died in [specific time frame].” However, the 1-year time frame is often too long for advanced cancer patients seen by palliative care personnel. “The surprise question” with shorter time frames is needed for decision making. We examined the accuracy of “the surprise question” for 7-day, 21-day, and 42-day survival in hospitalized patients admitted to palliative care units (PCUs).

This was a prospective multicenter cohort study of 130 adult patients with advanced cancer admitted to 7 hospital-based PCUs in South Korea. The accuracy of “the surprise question” was compared with that of the temporal question for clinician's prediction of survival.

We analyzed 130 inpatients who died in PCUs during the study period. The median survival was 21.0 days. The sensitivity, specificity, and overall accuracy for the 7-day “the surprise question” were 46.7, 88.7, and 83.9%, respectively. The sensitivity, specificity, and overall accuracy for the 7-day temporal question were 6.7, 98.3, and 87.7%, respectively. The c-indices of the 7-day “the surprise question” and 7-day temporal question were 0.662 (95% CI: 0.539–0.785) and 0.521 (95% CI: 0.464–0.579), respectively. The c-indices of the 42-day “the surprise question” and 42-day temporal question were 0.554 (95% CI: 0.509–0.599) and 0.616 (95% CI: 0.569–0.663), respectively.

Surprisingly, “the surprise questions” and temporal questions had similar accuracies. The high specificities for the 7-day “the surprise question” and 7- and 21-day temporal question suggest they may be useful to rule in death if positive.

Moral distress is associated with adverse outcomes contributing to health-care professionals’ worsened mental and physical well-being. Medical social workers have been frontline care providers throughout the COVID-19 pandemic, and those specializing in palliative and hospice care have been particularly affected by the overwhelming numbers of those seriously ill and dying. The main objectives of this study were (1) to assess palliative and hospice social workers’ experiences of moral distress during COVID-19 and (2) to identify and describe participants’ most morally distressing scenarios.

Using a mixed-methods approach, participants completed an online survey consisting of the Moral Distress Thermometer (MDT) and open-ended text responses.

A total of 120 social work participants responded to the study, and the majority of participants (81.4%) had experienced moral distress with an average MDT score of 6.16. COVID-19 restrictions emerged as the main source of moral distress, and an overlap between the clinical and system levels was observed. Primary sources of moral distress were grounded in strict visitation policies and system-level standards that impacted best practices and personal obligations in navigating both work responsibilities and safety.

In the first year of the COVID-19 pandemic, palliative and hospice social work participants indicated high levels of moral distress. Qualitative findings from this study promote awareness of the kinds of distressing situations palliative and hospice social workers may experience. This knowledge can have education, practice, and policy implications and supports the need for research to explore this aspect of professional social work.

Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers’ perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers’ perceptions of a good resident death.

This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death.

Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers’ perceptions of a good resident death.

The findings of this study suggest that the critical role staff in LTC play in supporting caregivers’ perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers’ perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers’ perceptions that residents were at peace when they died.

The aim is to understand the experiences and views of oncology nurses about the unmet care needs of older cancer patients receiving chemotherapy. Nurses play the key role in evaluating and determining the needs of this special group.

A phenomenological descriptive qualitative study with convenience sampling was used. Participants were referred by the Turkish Oncology Nursing Society. The study participants were 12 nurses aged 34–53 years, with oncology experience between 5 and 27 years. The data were collected using semi-structured face-to-face interviews. Interviews were transcribed verbatim with concurrent analyses and data collection. Thematic content analysis was used to determine common domains.

The study data were categorized into 3 contexts, 12 themes, and 37 subthemes. The first context, “unmet needs”, includes physical care, psychological care, and social care themes. The second context, “barriers to meeting those needs”, comprises the theme of patient characteristics, attitude of family, attitude of the nurses/healthcare team, health system, and culture. The last context is “suggestions for meeting needs”. Nurses play an important role in identifying and meeting unmet psychosocial needs.

The study indicated that older cancer patients had problems in identifying, expressing, and making demands for their needs and that their culture contributed to this situation. Nurses serving in the outpatient chemotherapy units should conduct a holistic assessment of older cancer patients, be aware that these patients may not be able to express their needs, be more sensitive toward them, and ensure that the voice of the older patients is heard.

The objectives of this study are to describe patients’ experiences of family members’ reactions to diagnosis of breast cancer and investigate the role of family support in the management of breast cancer.

The study used the descriptive qualitative method in data collection and analysis. Fifteen participants, who were undergoing either radiotherapy or chemotherapy treatment at a private hospital, consented and participated in the study. Data were content analyzed under two specific themes on family members’ reactions and family support received.

The findings show that some participants reported negative reactions of some family members, and this affected them negatively. While some participants received support from their families, others did not.

The findings of our study show the critical role of family support in the management of breast cancer; therefore, family members should be encouraged to give breast cancer patient the necessary support to help them manage their sick role behavior since their illness has no cure.

Cancer patients and their caregivers often turn to the internet for information and support following a cancer diagnosis. Research shows a need for improvement in doctors' communication with patients about internet information. The purpose of this formative assessment was to evaluate oncology trainees' skills in talking about internet information with cancer patients.

Thirty-nine oncology trainees were evaluated in a baseline standardized patient assessment as part of their participation in the Comskil Training Program. As part of the assessment, standardized patients were instructed to raise the topic of internet information they had read. Transcriptions of the video-recorded assessments were coded for patient statements and trainee responses.

Fifty-six percent of trainees used a probe to get more information before addressing the content of the internet search, while 18% addressed it immediately. Eighteen percent of trainees warned the patient about using the internet, and 8% warned about and also encouraged internet use. Thirteen percent of trainees praised the patient for seeking out information on the internet.

This formative assessment indicated that the majority of trainees addressed the content of the internet search, while a minority addressed the internet as a tool and praised patients' efforts. Research in this area should examine the effectiveness of educational interventions for trainees to improve discussions about internet information.

This study investigates an approach based on Kaplan's Attention Restorative Theory (ART) to develop a non-pharmacological intervention to help individuals manage the distressing effects of illness related fatigue. The study aims to: identify activities perceived as being enjoyable by individuals who have moderate to severe fatigue related to advanced illness; determine the core attributes of potentially beneficially interventions; analyse reported ‘enjoyable’ experiences within the ART framework by mapping emergent themes to attributes of attention restoration; and develop the prototype for a self-management intervention tool.

A purposive sample of 25 individuals who experienced moderate to severe fatigue was selected from the local hospice and community. Focused semi-structured interviews probed the questions: What do you enjoying doing? What is it about the activity that you particularly enjoy? Framework analysis was used to manage responses.

Seventy-five ‘enjoyable experiences’ were identified, including artistic pursuits, voluntary work, socialising and learning. These activities were organised into four conceptual themes: Belonging, Expansive, Nurturing and Purposeful. When mapped against attributes of restorative activities specified in ART, there was some congruence and variation. It was clear that the participants expressed a great need to be safe and in a nurturing environment. Some participants placed a high value in and received great joy from contributing to the community; this was not noted in previous ART literature.

This study has extended Kaplan's insightful work on restorative behaviours by revealing the value that purposeful, engaging and safe activities hold for people who live with fatigue. ART has inspired the research team to develop a self-management intervention tool to guide health care practitioners in promoting a non-pharmacological approach to manage fatigue through exploring, discovering and promoting experiences which engage, excite, nurture and challenge the person. Further research is needed to integrate this approach into clinical practice.

The COVID-19 pandemic is a care crisis of unknown duration which has seemingly not yet reached its peak in many countries. A significant number of elderly and frail people and those with underlying serious illness will continue to develop severe forms of the COVID-19 infection. Most of them are not eligible for intensive care treatment but can still expect palliative care — in many cases provided by a Hospital Palliative Care Team (HPCT). Several teams have already gained experience in caring for these patients and their families, others are preparing for it.

We report on a COVID-19 patient with pre-existing acute myeloid leukemia who was looked after by a HPCT until death. We discuss the challenges and difficulties while caring for COVID-19-positive palliative patients in a non-ICU setting.

Hospitalization of the patient in an isolation ward caused an enormous burden for the dying patient and his family. Symptom control was particularly difficult because of rapid deteriorating dyspnea and the scarce presence of medical staff in the patient's room.

COVID-19 patients who are not eligible for ICU treatment may have a particularly high need for palliative care. Since beds in specialist palliative care units are limited, the HPCT should be prepared to care for these patients. They may offer support in decision-making, optimize symptom control, and provide psychosocial care for patients and their families. Visiting restrictions aimed to protect the general public must be weighted against the patient's and family's suffering.

To develop and validate Professional Bereavement Scale (PBS), a specific measurement tool for professional bereavement experiences.

An online cross-sectional survey collected data from 563 physicians and nurses from urban hospitals in Mainland China. Item consistency analysis, component factor analysis, exploratory factor analysis, and confirmatory factor analysis were run to develop and validate the scale. Correlational analysis was conducted to evaluate the psychometric property of the scale.

Two subscales of the PBS were developed: the 17-item Short-term Bereavement Reactions Subscale (PBS–SBR) and the 15-item Accumulated Global Changes Subscale (PBS–AGC). Four factors, namely, frustration and trauma, guilt, grief, and being moved, are involved in PBS–SBR. Five factors are involved in PBS–AGC, which are new insights, more acceptance of limitations, more death-related anxiety, less influenced by patient deaths, and better coping with patient deaths. Both subscales have good content validity, construct validity, and criterion validity, as well as satisfactory internal consistency and split-half reliability.

PBS is a specific assessment tool for professional bereavement which is clearly defined, comprehensive, rigorously tested, and generalizable to different professional caregivers from various departments. Unveiled constructs illustrate that professional bereavement experiences contain a professional dimension in addition to a personal dimension both in an event-specific and a global perspective, which distinguishes them from familial bereavement experiences.

Experiencing cancer can give rise to existential concerns causing great distress, and consequently drive individuals to make sense of what cancer may mean to their lives. To date, meaning-based research in the context of cancer has largely focused on one possible outcome of this process, the emergence of positive meanings (e.g. post-traumatic growth). However, negative meanings may also be ascribed to cancer, simultaneously with positive meanings. This study focused on the nature of the co-existence of positive and negative meanings in a sample of individuals diagnosed with colorectal cancer to find out whether negative meaning had an impact on quality of life and psychosocial adjustment above and beyond positive meaning.

Participants were given questionnaires measuring meaning-made, quality of life, and psychological distress. Semi structured interviews were conducted with a subgroup from the original sample.

Hierarchical multiple regression analyses revealed that negative meaning-made (i.e. helplessness) was a significant predictor of poor quality of life and increased levels of depression/anxiety above and beyond positive meaning-made (i.e. life meaningfulness, acceptance, and perceived benefits). Correlational analyses and interview data revealed that negative meaning-made was mainly associated with physical and functional disability, while positive meaning-made was mostly related to emotional and psychological well-being.

Meanings of varying valence may simultaneously be ascribed to cancer as it impacts different life dimensions, and they may independently influence quality of life and psychosocial adjustment. The presence of positive meaning was not enough to prevent the detrimental effects of negative meaning on psychosocial adjustment and quality of life among individuals taking part in this study. Future attention to negative meaning is warranted, as it may be at least as important as positive meaning in predicting psychosocial adjustment and quality of life following a cancer diagnosis.

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.

The purpose of this study was to describe the value of a formal room blessing ritual held within a long-term care facility, from the perspectives of staff, residents, and family members.

A qualitative research study involving interviews with staff, residents, and family members was conducted to examine the perceived value of a room blessing ritual.

Twenty-four room blessing attendees participated in the study (nine staff, eight residents, and seven family members). Attendees felt that the room blessing provided an opportunity to formally acknowledge the death of the resident and their grief; the majority felt that this was a positive experience and that it provided an element of closure. Staff members and residents expressed their appreciation for the opportunity to connect with family members of the deceased to express their condolences during the ritual. Participants also identified the inclusivity of the ritual (i.e., an open invitation to all staff, residents, and family members) as a positive aspect that served as a reminder that others shared in their grief. Staff members felt that blessing the room for the new resident was an important component of the ritual, helping to bridge the gap between mourning and welcoming a new person. Staff, residents, and family members felt that the room blessing positively reflected the mission and values of the facility. The most highly valued aspect of the ritual for all attendees was the sharing of stories about the deceased to celebrate that person's life.

Long-term care facilities need to recognize that formal supports to manage the bereavement needs of staff and residents, such as a room blessing ritual, should be incorporated into their model for managing end-of-life care, given the relationship between the emotional health of staff and the quality of care provided for residents.

The aim was to investigate the effects of an intervention that applies a palliative care approach in residential care upon nurse assistants' level of strain, job satisfaction, and view of leadership.

A quasi-experimental, pretest and posttest design was used. Study circles with workshops involving nurse assistants (n = 75) and their superiors (n = 9) focusing on emotional and existential issues in palliative care were evaluated using a questionnaire answered by the nurse assistants at baseline (November 2009), post-intervention (May 2010), and six-month follow-up (November 2010) in comparison with controls (n = 110).

Directly after the intervention, the job satisfaction of the nurse assistants decreased and they perceived the leadership more negatively than before the intervention. Six months later, strain as a result of criticism from residents and their superiors and having difficulty in balancing emotional involvement had decreased.

The intervention initially seemed to decrease the well-being of the nurse assistants, which could be the result of their increased awareness of the residents' and relatives' needs, in combination with limited support. More emphasis should be placed on the role of leadership when implementing changes in practice.