Caregivers are critical in advanced care planning (ACP) discussions, which are difficult but necessary to carry out patients’ goals of care. We developed and evaluated the feasibility and acceptability of a communication training to equip caregivers of patients with malignant brain tumors with skills to navigate ACP conversations.

Caregivers completed a 2-h virtual training addressing ACP Discussions with Your Loved One and ACP Discussions with the Medical Team. A pre-training assessment was completed at baseline and a training evaluation was completed one day post-training. A subset of participants completed semi-structured interviews 2 months post-training.

Of 15 caregivers recruited, 9 attended the training and 4 completed qualitative interviews. Post-training, 40% felt confident in discussing ACP with loved ones and 67% felt confident doing so with healthcare professionals; 100% reported feeling confident in using skills learned in the training to facilitate these conversations. Data from qualitative interviews highlighted additional benefits of the training in empathic communication skills and fostering social support.

Our communication skills training shows promise in supporting caregivers’ skills and confidence in engaging in ACP discussions with patients and healthcare providers. A future randomized controlled trial with a larger and more diverse caregiving sample is needed to determine training efficacy.

The current study explored the impact of cancer-related fertility concerns on existential distress and meaning making among female breast cancer (BC) patients of childbearing age and assessed support needs.

The current study was embedded within a larger study. A seven-question online survey was administered to female BC participants to explore meaning and identity in their lives. Applied thematic analysis was used to analyze participants’ written responses.

A total of 98 participants completed the survey, the majority of whom identified as white, married or partnered, and employed full time and with stage I or II BC. More than 50% of the participants expressed a need for support from a counselor or support group during their cancer experience. Three subthemes emerged related to existential distress and cancer-related fertility concerns: (1) loss of womanhood: treatment-related physical changes impact on gender identity; (2) existential distress due to treatment decisions impacting fertility; and (3) shattered vision: cancer-related infertility impact on meaning and purpose. Four subthemes emerged related to meaning making with fertility-related existential concerns: (1) coping with loss of meaning, (2) re-evaluating priorities in life; (3) resilience to loss, and (4) persistent loss of meaning.

Study results offer valuable insights into the experiences of female BC survivors’ cancer-related fertility on existential distress and meaning making. Development of psychological interventions targeted to support this population to cope with existential distress due to cancer-related fertility concerns and meaning making are needed to improve the quality of life of this population.

There is increasing concern regarding the quality of palliative nursing care. However, despite the growing number of studies identifying related variables, there is still a paucity of studies analyzing models of how these variables interrelate.

The study aimed to identify the role played in the quality of palliative care of nursing professionals by the variables meaning and death anxiety and to investigate the mediating role of psychological well-being and engagement.

176 palliative nursing professionals participated, selected by non-probabilistic convenience sampling using the snowball method. A simple mediation analysis and a multiple mediator model were performed in parallel, and data were collected using a paper and online questionnaire between January and May 2018.

Well-being mediated the impact of meaning (indirect effect = 0.096, SE = 0.044, 95% confidence interval (CI): 0.028, 0.213) and death anxiety (indirect effect = −0.032, SE = 0.013, 95% CI: −0.064, −0.010) on the quality of care. Engagement, on the other hand, only mediated the impact of meaning (indirect effect = 0.185, SE = 0.085, 95% CI: 0.035, 0.372), while the indirect effect of death anxiety with the quality of care through engagement was not statistically significant (indirect effect = 0.008, SE = 0.009, 95% CI: −0.004, 0.032).

Death anxiety is not directly related to the quality of care, but rather has an effect through psychological well-being, a variable acting as a mediator between the two. The effect of meaning on the quality of care is explained by the mediation of both engagement and psychological well-being, and its impact on the quality of care is thereby mediated by more variables than death anxiety.

Cervical cancer is known to affect survivors’ intimate relationships, as well as their communication and coping. Yet little is known about the perspectives of these survivors on their intimate relationships in the context of their needs during and after medical treatment. Additionally, only a few studies have focused on survivors’ perceived needs or on existing psychosexual support. Understanding these perceptions can help provide a tailored response and improve dyadic interventions. The aim of this study was to examine cervical cancer survivors’ perspectives on their intimate relationships during and after their treatment.

The present study adopted a qualitative-phenomenological approach. In-depth, semi-structured interviews were conducted with 15 survivors of cervical cancer between the ages of 38 and 44 who were diagnosed at stages I–II and were treated with radiotherapy or chemo-radiotherapy and surgery. Data collection continued until saturation of concepts was reached. The results underwent thematic analysis.

Analysis of the findings revealed two key themes: (1) Together and apart in the shadow of cervical cancer. This theme focuses on the recovery period as a potential opportunity for changing and improving the couple relationship, such that men no longer withdraw but rather provide their partners with needed support and encouragement. (2) Changes in sexual life and couple intimacy. This theme focuses on changes in sexual relations, which have become a burden, painful, and something to avoid.

The study provides a comprehensive picture of intimate relationships during and after cervical cancer treatment and highlights the women's needs and desires for support from their intimate partners. The discussion notes that oncology providers can better facilitate supportiveness on the part of cervical cancer partners by offering better couple-oriented education and interventions to promote couple communication.

Millions of Americans may face hard decisions when it comes to providing nutrition for their loved ones with advanced dementia. This study aimed to ascertain whether there is a difference in feeding tube placement between White and Black patients with advanced dementia and whether this potential difference varied by patient's other demographic and clinical characteristics.

This is a retrospective, observational study conducted at Novant Health, a 15-hospital system in the southeastern United States. Data were obtained from Epic systems and included all hospital admissions with a diagnosis of advanced dementia, a total of 21,939, between July 1, 2015, and December 31, 2018. Descriptive statistics and logistics analyses were conducted to assess the relationship between receiving percutaneous endoscopic gastrostomy (PEG) and race, controlling for demographic and clinical characteristics.

Among patients admitted with advanced dementia, the multivariable logistic regression, controlled for age, gender, LOS, palliative care, and vascular etiology showed that Blacks had higher odds of having PEG tubes inserted than White patients (OR 1.97; CI 1.51–2.55; P < 0.001). Patients with longer stays had higher odds of PEG tube insertion. Females had lower odds of PEG tube insertion than males. There was no statistical significance in PEG insertion based on age, etiology, and palliative care consult.

The reasons for the observed higher odds of receiving PEG tubes among Black patients than White patients are likely multifactorial and embedded in a different approach to end-of-life care conversations by providers and caregivers of Black and White patients. Providers may need to be more aware of potential unconscious biases when talking to caregivers, especially in race-discordant relationships, have courageous conversations with caregivers, and be more aware of the importance of keeping in mind families’ and caregivers’ culture, including spirituality, when making end-of-life decisions.

To identify early symptoms and changes in QoL among men with primary localized prostate cancer (PC) who later develop metastases.

From an ongoing prospective study of 3.885 men with localized PC, primarily treated with radiotherapy (RT), a subsample of men developing metastatic PC (mPC) following the first year after the start of RT and that had died during the follow-up (mPC group, n = 107) were matched against men who did not develop metastases (non-mPC group, n = 214). Data were collected using the EORTC QLQ-C30 and PCSS instruments. Non-parametric tests were performed for comparisons at baseline, end of RT, 3 months, and 1, 2, 3, and 5 years after RT.

The final sample consists of 317 men (mPC n = 106; non-mPC n = 211) who had completed at least one questionnaire. Initially, symptom levels were generally low and QoL and functioning high in both groups. An increasing difference between the groups was found, where the mPC group gradually deteriorated from the 2-year follow-up. Significant differences were found for several outcomes at 3 and 5 years. In a sensitivity analysis, where metastatic patients were removed from the time-point of verified metastases, most differences did not remain significant. Significant deterioration over time was seen within both groups for some outcomes.

The results indicate that unmet supportive needs occur over time among these men. Worsening QoL or functioning and symptoms may be difficult to recognize when the development is gradual over several years, and with various access to systematic follow-up in late phases. This highlights the need for continuous monitoring of PC patients to detect needs for supportive interventions early and throughout the disease course, also among those with non-metastatic disease who have undergone curatively intended treatment.

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.

To delimit the concept of existential uncertainty in the patient cancer experience from other, related aspects of uncertainty in the context of an existing framework of health-related uncertainty.

In-depth interviews were carried out with six people living with cancer and analyzed using theory-driven, concept-focused thematic analysis.

Our analysis suggests that existential uncertainty is concerned with meaning rather than information; with the person rather than the disease; and with the fundamental nature of our human being-in-the-world rather than the more practical aspects of our relationships with others. Patient expressions of existential uncertainty may involve a nonscientific discourse of metaphor, analogy, and imagination.

It is important for professionals working in supportive oncology to have a conceptual understanding of uncertainty in order to choose how best to respond to patients’ needs, as different interventions may be more or less appropriate to different aspects of patient uncertainty.

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.

Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers.

This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process.

Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want.

Our findings suggest the necessity for greater awareness of patients’ and their relatives’ needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.

Families bereaved following Medical Aid in Dying (MAID)-related death express concerns about public stigma. As access to MAID expands, research examining MAID is needed, including understanding stigma toward family members. This study examines if stigmatization exists toward bereaved individuals whose family member utilized MAID at differing ages and assess if expectations of grief differ between bereaved individuals whose family member utilized MAID compared to bereaved individuals whose family member died of an illness.

This study utilized a randomized, between-groups, vignette-based experiment to test the effects of cause of death (MAID vs. illness-related death) and age (28, 38, 70, and 80 years) of the deceased on indicators of public stigma. Participants (N = 428) were recruited from mTURK (Mage = 42.54; SDage = 16.50).

Analyses showed a statistically significant interaction between age and the mode of death (F(7, 400), p = 0.001, $\eta _{\rm p}^2$ = 0.06) and the main effect for age (F(5, 401), p = 0.004, $\eta _{\rm p}^2$ = 0.04) on expectations of grief, whereas emotional reactions and wanting social distance were not significant (p > 0.05). Participants expected more maladaptive grief among family members of 28- and 70-year-olds who died of illness compared to 28- or 38-year-olds who utilized MAID [28-year-old (M = 44.12, SD = 12.03) or 70-year-old (M = 44.32, SD = 10.29) illness-related death vs. 28-year-old (M = 39.3, SD = 11.56; p = 0.01) or 38-year-old (M = 38.71, SD = 11.56; p = 0.007) MAID-related death].

Findings suggest that direct stigma does not exist toward family members of individuals engaging in MAID. The American public may expect that family members of young individuals who utilize MAID are accepting of the death and expect them to experience fewer maladaptive grief symptoms. Future research should investigate differences in bereavement outcomes based on age of bereaved caregivers of individuals engaging in MAID.

Some observers have proposed that physicians may die differently compared with the average patient. Semi-structured interviews with family members of physicians who died offer an opportunity to better understand how patient preferences and wishes are perceived and acted on by family members at the end of life. The decision-making experiences of these family members for a loved one who was a physician may have implications for the lay person at end of life.

The Johns Hopkins Precursors Study includes individuals who matriculated into the graduating classes of 1948 to 1964 of the Johns Hopkins University School of Medicine. From this cohort, we interviewed 26 family members of physicians who died. Interviews were coded and analyzed using a comparative, iterative process.

We found that family members of physicians who died described the uncertainty at end of life. This overarching theme was organized into the following: (a) the certainty of uncertainty; (b) the preparation for uncertainty; and (c) brokering of decisions in the face of uncertainty. Despite careful end-of-life preparation by well-informed physicians, family members were still left to broker decisions as they navigated the wishes of the physician and what the family and medical care team believed to be in the best interest of the physician.

Our findings suggest that our family members were not immune to uncertainty. The clinical momentum at the end of life may contribute to challenges faced by patients and family members when brokering decisions. Normalizing uncertainty in medical training and for families may aid in addressing the stress of uncertainty at end of life.

Death anxiety (DA), a condition characterized by fear, angst, or panic related to the awareness of one’s own death, is commonly observed in advanced cancer patients. The aim of this study was to examine the psychometric properties of the Italian version of the Death and Dying Distress Scale (DADDS-IT) in a sample of patients with advanced cancer.

The sample included 200 Italian advanced cancer patients meeting eligibility criteria to access palliative care. Patients’ levels of DA were assessed by using the DADDS-IT, while the levels of depression, anxiety, demoralization, spiritual well-being, and symptom burden were assessed using the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7, the Demoralization Scale, the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale, and the Edmonton Symptom Assessment System, respectively; Karnofsky Performance Status was used to measure functional impairment. Confirmatory factor analyses (CFA) of previous structures and exploratory factor analyses (EFA) were conducted.

CFA revealed that none of the previous structures adequately fitted data from our sample. EFA revealed a 4-factor model comprising Finitude (α = 0.91), Regret (α = 0.86), Dying (α = 0.88), and Relational Burden (α = 0.73), accounting for the 77.1% of the variance. Dying subscore was higher in hospice patients than in those recruited in medical wards.

The present study provides further evidence that DA is a condition that deserves attention and that DADDS-IT shows good psychometric properties to support its use in research and clinical settings.

This study aimed at assessing the validity and reliability of the Turkish version of the Spiritual Health Scale-Short Form (SHS-SF).

The methodological research was conducted with Turkish nursing students (n = 310). The sociodemographic question form and the SHS-SF were used as data collection instruments. The Content Validity Index, Exploratory Factor Analysis (EFA), and Confirmatory Factor Analyses (CFA) were used for the validity of the scale, and Internal Consistency and Cronbach's Alpha reliability coefficient for its reliability.

The EFA revealed that five factors accounted for 66.49% of the variance. According to the CFA, the factor loadings for the 24-item scale ranged from 0.40 to 0.91. Goodness-of-fit indices were as follows: χ2/df = 2.39, RMSEA = 0.06, CFI = 0.92, TLI = 0.91, IFI = 0.92. The item-total correlation for the scale items ranged from 0.37 to 0.65. The alpha coefficient for the scale was 0.91.

It is important to identify the level of spiritual health of nurses and nursing students with a valid and reliable scale. The SHS-SF was found to be a reliable and valid scale for use in the Turkish language and culture. The scale can be used for evaluating spiritual health levels among Turkish nurses and nursing students. This will provide an opportunity for planning appropriate interventions to improve the spiritual health level of nurses and nursing students.

A meta-analysis has explored the effect of psychotherapy on the quality of life (QOL) but has not explored the effect on advanced cancer patients’ survival, which is highly debated. Therefore, we consider the survival days and QOL as the primary outcomes in our analysis.

Eligible studies were collected from four databases (PubMed, Embase, Cochrane Library, and Web of Science) until February 20, 2021. The pooled effect sizes were presented as weighted mean difference (WMD) or relative risk (RR) with 95% confidence intervals (CIs). Publication bias was evaluated by Egger's test, and I2 statistics was used to assess the heterogeneity.

Thirty-three studies were finally included, containing 2,159 patients in the psychotherapy group and 2,170 patients in the control group. McGill Quality of Life Questionnaire (MQOL) and European Organization for Research and Treatment of Cancer Quality of Life-C15-Palliative (EORTC-QLQ-C15-Pal) supported that QOL of the psychotherapy group was significantly higher than that of the control group, and WMD value was 0.42 (95% CI: 0.12–0.71) and 17.26 (95% CI: 11.08–23.44), respectively. No significant difference was observed between the two groups regarding to the survival time (WMD: 17.85, 95% CI: −8.79, 44.49, P = 0.189). Moreover, the levels of anxiety, depression, confusion, pain, and suffering were lowered in psychotherapy group (all P < 0.05).

Psychotherapy could improve the QOL of advanced cancer patients but not affect the survival time.

Having a child with cancer is a burdensome experience for parents. Nurses need to better understand beliefs, hopes, and values of parents to holistically support them, which may have an impact on grief and depression. Thus, the aim of this paper was to highlight the social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer.

A narrative literature review was conducted by systematically searching databases (CINAHL Complete, Academic Search Elite, MEDLINE) for relevant literature. The contents of included studies were critically appraised regarding their methodological quality.

Eleven studies were included. In terms of the social dimension, three categories emerged that are important for parents: Being a Parent, Being in Relationship with the Child, and Being in Relationship with Health Professionals. Parents tried to maintain normality and joy for their child, but also kept control over the situation. They wanted to protect their child from suffering but also felt the need to talk to them about dying. Parents had ambivalent experiences with helpful but also burdensome staff. The spiritual dimension comprised two main categories, Hope and Faith and a Unique Bond. Hope was found to be an important source of strength, while Faith was only mentioned by some parents. For parents the emotional connection with their child constituted a source of meaning as well as a foundation, on which they based their decisions on.

A therapeutic relationship and a supportive environment can be established by healthcare professionals by noticing, encouraging the unique bond between parents and their children, as well as by reflecting and addressing the parents’ challenging situation.

This systematic review considers interventions designed to improve the psychological well-being (PWB) of carers of people with motor neuron disease (MND) using quantitative, qualitative, or mixed-methods studies, and aimed to (1) summarize current research, (2) assess the quality of evidence, and (3) evaluate the effectiveness of interventions.

Mixed-methods systematic review (MMSR) was conducted based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Thirteen papers met the inclusion criteria, including 12 studies (six mixed-methods, four quantitative, and two qualitative). Four studies described randomized controlled trials, seven detailed uncontrolled longitudinal studies with a single treatment group and a pre-post design, and one was an observational survey. Critical appraisal of the studies revealed a wide range of weaknesses in the quantitative and/or qualitative methodologies. Due to the heterogeneity of interventions, outcomes, and measurements, a narrative and convergent approach to data synthesis was employed. While a minority of studies demonstrated some benefits to hedonic and eudaimonic aspects of PWB, the interpretability of these data was limited by methodological problems.

This MMSR highlighted a paucity of quality research regarding interventions for the PWB of MND carers. Although some benefits to PWB were demonstrated, most studies suffered from substantial methodological problems, rendering the overall evidence base low. High-quality and carefully designed studies are a priority to enable effective development and testing of much-needed interventions targeting the PWB for MND carers.

End-of-life dreams and visions (ELDVs) have been reported throughout history. We aimed to synthesize the research literature on ELDVs to determine the proportions of patients, bereaved families, healthcare professionals, and volunteers reporting ELDVs; ELDV content, timing, and interpretation; and any evidence-based approaches to ELDV-related care.

A systematic review protocol was registered with PROSPERO (CRD4021282929). CINAHL, Medline, Embase, Emcare, and APA PsycInfo were searched for peer-reviewed English language articles reporting qualitative, quantitative, or mixed methods studies that explored reports of ELDVs by patients, bereaved families, healthcare professionals, or volunteers. Synthesis used both meta-analysis and a narrative approach.

Of 2,045 papers identified by searches, 22 were included, describing 18 studies in a variety of settings. Meta-analyses indicated that 77% (95% confidence intervals [CIs] 69–84%) of patients (n = 119) reported an ELDV compared with 32% (95% CIs 21–44%) of bereaved relatives (n = 2,444) and that 80% (95% CIs 59–94%) of healthcare professionals (n = 171) reported either witnessing or being told of an ELDV in the preceding 5 years. Studies of volunteers reported 34% (95% CIs 20–48%) (n = 45) either witnessing or being told of an ELDV over their entire period of service, with 49% of volunteers (95% CIs 33–64%) (n = 39) reporting events occurring in the preceding year. ELDVs reported by patients, bereaved families, healthcare professionals, and volunteers were perceived as being a source of comfort. Healthcare professionals and volunteers expressed a need for further education on how to support patients experiencing ELDVs and their families.

ELDVs are experienced by the majority of dying patients and need consideration in delivering holistic end-of-life care. Little if any research has been conducted in acute care facilities.

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.