Care of the Patient Nearing the End of Life in the Neurointensive Care Unit.

BACKGROUND: Neurologically critically ill patients present with unique disease trajectories, prognostic uncertainties, and challenges to end-of-life (EOL) care. Acute brain injuries place these patients at risk for underrecognized symptoms and unmet EOL management needs, which can negatively affect their quality of care and lead to complicated grief in surviving loved ones. To care for patients nearing the EOL in the neurointensive care unit, health care clinicians must consider neuroanatomic localization, barriers to symptom assessment and management, unique aspects of the dying process, and EOL management needs. AIM: We aim to define current best practices, barriers, and future directions for EOL care of the neurologically critically ill patient.

Development and Piloting of a Bereaved Care Partner Survey to Inform Quality Improvement in ALS Supportive Care.

OBJECTIVES: Bereaved care partner surveys typically focus on the experience with care in the final days of life. We sought to develop and pilot a novel bereaved care partner survey to understand experiences with ALS supportive care provided throughout the illness and identify opportunities for quality improvement. METHODS: We developed the survey using a multisite, interdisciplinary consensus process involving ALS and palliative care clinicians as well as patient advocates. We then piloted the survey at a single site via video interviews with care partners of patients who died from ALS between three and 15 months prior. Qualitative findings were analyzed using Rapid Qualitative Analysis. RESULTS: The survey includes 17 core questions and nine demographic items. Questions inquire about whether the patient and care partner received adequate help with physical symptoms, emotional and practical needs, education about the illness and how to provide hands-on care, preparing for what was to come, and bereavement. They also query whether care was person-centered and consistent with the patient's values and preferences. During the pilot with 18 bereaved care partners, the tool generated detailed feedback about aspects of care to preserve as well as how to improve ALS supportive care. DISCUSSION: We developed and piloted a bereaved care partner survey to understand and improve the quality of ALS supportive care, which was found to be feasible and acceptable. Next steps include testing it at additional centers in order to generate learnings that can advance ALS supportive care in ways that are meaningful to patients and care partners.

Undergraduate midwifery students' experiential learning of perinatal bereavement care: A qualitative analysis.

BACKGROUND: It is widely acknowledged that midwives are essential in providing care for mothers experiencing perinatal death. However, midwifery students lack the knowledge and skills needed to deal with perinatal death, and. There is limited research on perinatal bereavement care training for midwifery students. AIM: To investigate undergraduate midwifery students' experiential learning of perinatal bereavement care and serve as a reference for future perinatal bereavement care teaching and training. DESIGN: Qualitative descriptive design. SETTING: University in Guangzhou, China. PARTICIPANTS: Undergraduate midwifery students at a university in Guangzhou, China. METHOD: This research was conducted at a university in Guangzhou, China. The participants were recruited using purposeful sampling. Semi-structured, in-depth interviews were conducted with 11 midwifery students who participated in perinatal bereavement care training from May to June 2023. The Colalizzi 7-step data analysis method was used for data analysis. RESULTS: From the data, five themes emerged: 1) immersive experience of perinatal bereavement care, 2) formation of perspectives on perinatal bereavement care, 3) clarification of the service boundaries and internalization of the professional service spirit, 4) emotional impact and coping strategies, and 5)) factors influencing practice optimization. CONCLUSIONS: Experiential learning is an effective teaching strategy. However, participants continued to feel unprepared to provide perinatal bereavement care. Implementing relevant training, disseminating perinatal bereavement care knowledge and skills, and enhancing the ability of midwifery students to manage and cope with the psychological impact of perinatal death are important.

Prevalence and correlates of ICD-11-based prolonged grief disorder in a representative Slovakian sample of recently bereaved adults.

Background: Prolonged Grief Disorder (PGD) has recently been included in both the ICD-11 and DSM-5-TR diagnostic manuals. Studying its prevalence and correlates across cultures is vital for more effective identification, treatment, and prevention.Objective: This study aimed to examine prevalence rates of ICD-11-based PGD, in a representative Slovakian sample in response to deaths of loved ones occurring during the previous year. Further aims were to examine the factor structure of PGD symptoms and correlates of summed PGD item scores and PGD 'caseness'.Method: Self-reported data on PGD, depression, anxiety, alcohol use, and descriptive characteristics were gathered from a representative sample of the Slovak population (N = 319).Results: Data were gathered from N = 1853 people; 319 participants (17.2%) reported a loss in the past year. The prevalence of probable PGD among these bereaved participants was 1.99% for recent losses (<6 months, n = 151) and 7.75% for more distant losses (6-12 months, n = 130). The most frequently endorsed symptoms included longing/yearning for the deceased, sadness, denial/unrealness, and difficulty accepting the death. PGD symptoms had a unitary factor structure which was consistent for subsamples bereaved 1-5 and 6-12 months. The severity of PGD varied with kinship. Depression and anxiety, but not alcohol misuse, were associated with PGD severity and PGD caseness.Conclusions: These findings underscore that a significant group of people develop PGD between 6-12 months following a loss. This emphasises the need for targeted psychological interventions.

Prolonged Grief Disorder (PGD) is newly included in ICD-11 and knowledge about its prevalence and correlates in the general population is urgently needed.In a representative Slovakian sample (N = 1853), 319 people (17.2%) reported a loss during the past year; 7.75% of people, bereaved 6­12 months earlier, met criteria for ICD-11-based PGD.PGD severity and caseness were associated with kinship (but less strongly with other sociodemographic and loss characteristics) and with depression and anxiety (but less strongly with problematic alcohol use).At 6­12 months following loss, PGD seems fairly common in the general population and timely identification and mitigation of PGD is an important public health issue.

Parent-Clinician Communication and Prolonged Grief in Parents Whose Child Died from Cancer.

CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death. OBJECTIVES: To examine the association between communication and prolonged grief among parents whose child died from cancer and to explore the mediation effect of preparation for EOL care. METHODS: We analyzed data from a cross-sectional survey of parents of children who died from cancer in the prior 6-24 months. We used multiple linear regression to examine the association between communication variables and prolonged grief symptoms. We also examined how preparation for EOL mediates these associations. RESULTS: Across N=124 parents, the mean age was 46 years, 82% were White, and 64% were mothers. The average PG-13 sum score was 32.7 ± 10.6 (range 11-55, with higher scores indicating greater symptom severity). Most parents reported "very good/excellent" communication with clinicians (80%), adequate prognostic information (64%), and high levels of trust (90%). Nearly 39% of parents reported feeling "not at all prepared" for their child's EOL. Compared to parents who wanted more prognostic information, parents who perceived prognostic information to be adequate had significantly lower PG-13 sum scores (36.4 ± 10.8 vs. 30.5 ± 10.1, F=9.26, p=0.003). Preparation for EOL fully mediated this association. CONCLUSION: Early bereaved parents report severe prolonged grief symptoms. Interventions focused on providing adequate prognostic information and improving preparation for EOL may mitigate parental prolonged grief symptoms in the first two years of their bereavement.

Grief and Sexual Intimacy: Exploring Therapists' Views of Bereaved Clients.

The interaction between sexual intimacy and grief remains unexplored despite its potential to offer valuable insights into how individuals, couples, and society perspectives shape bereaved individuals' sexual intimacy. Through semi-structured interviews with ten clinical psychologists and psychotherapists specialized in grief therapy, this study explores the impact of grief on sexual intimacy, the challenges faced by bereaved individuals, and the role of sexual intimacy in the grieving process. The study also investigates therapists' approaches to addressing sexual intimacy within grief therapy sessions. Findings reveal that grief often disrupts sexual intimacy, affecting individuals' ability to engage emotionally and physically with their partners. Factors such as secondary loss, emotional availability, traumatic experiences, and the nature of the loss contribute to difficulties in resuming sexual intimacy. Nevertheless, the helpful role of sexual intimacy in grief was also highlighted. Therapists note the significance of communication, mutual empathy, and understanding in overcoming these challenges, advocating for therapy to address these issues comprehensively. Moreover, therapist-related, client-related, and shared factors hindering the exploration of sexual intimacy in grief therapy were identified. Strategies for managing these challenges include normalizing discussions around sexual intimacy and death, integrating systemic approaches into therapy, and providing training in sexuality or sexual therapy for grief therapists. Overall, this study underscores the importance of recognizing and addressing the interplay between sexual intimacy and grief to support bereaved individuals effectively. Insights from therapists shed light on potential avenues for enhancing clinical interventions and fostering awareness of the complex dynamics surrounding bereavement and sexuality.

Private sector business interactions with bereaved people: UK Commission on Bereavement secondary analysis.

OBJECTIVES: Evidence suggests that 61% of adults who were bereaved in the past 5 years had difficulties with at least one practical or administrative task following bereavement. We aimed to explore individual's experiences of interacting with private sector businesses following a bereavement. METHODS: Qualitative secondary analysis of data collected via an online survey within the UK Commission on Bereavement. Data from 1133 survey respondents was extracted verbatim, and thematic analysis was carried out. Participants were adults who had experienced a bereavement within the past 5 years and lived in the UK. They were eligible to take part in the survey. RESULTS: Three core themes were developed: (1) needs of bereaved people outside of 'business as usual', (2) admin burden while grieving and (3) the impact and experience of organisational failures. The results of this secondary analysis outline that bereaved individuals often struggle with several points of interaction with private businesses, including facing resistance when making initial contact, insensitive or non-empathetic interactions, facing unrealistic timelines for administrative tasks that are not then returned by the business, and difficulty understanding and completing paperwork. Participants emphasised the difficulty in navigating this while in the initial period following a bereavement. CONCLUSIONS: People experiencing a bereavement experience a high degree of mental load and emotional burden linked with interacting with private businesses following a bereavement. Given that this forms only one element of a person's whole bereavement experience, it is important that changes to policy and practice are made to allow a simple, positive experience for bereaved customers.

Embracing Endings: Unveiling the Connection Between Final Conversations, the Opportunity Model for Presence, and Coping With the Death of Our Parents.

This study examines adult children's loss of a parent through final conversations and communal coping. By looking at survivors' experiences through the lens of the opportunity model for presence (OMP) during the end-of-life (EOL) process, a model that provides a path of engagement leading to a good or bad death and consequent bereavement processes, we quantitatively test the relationships between two communication constructs before and after death of a parent. While final conversations as one construct did not lead to appraisal or action coping, results illustrate that final conversation topics of identity, instrumental, love, and everyday talk, were significantly related to shared appraisal. Instrumental talk and love were significantly related to joint action. Joint action and shared appraisal together led to participants engaging in all three types of coping. Final conversations as a whole, was important for bereavement outcomes, whereas communal coping's role in these relationships was convoluted.

Bereaved Individuals Attempts to Explain Their Unexplainable Experiences Related to the Death of Their Loved one Through Attribution Thinking.

Continuing bond manifesting as unexplainable experiences reflects bereaved´s attempts to restore connection with the deceased. As an experience unaligned with a person's overall schemas of meaning unexplainable experiences are a source of anxiety that individuals aim to alleviate by attribution thinking. This study describes how bereaved aim to explain unexplainable experiences related to the death of their loved ones. The study analysed 408 narratives of 181 bereaved individuals. Bereaved individuals (1) described the meaning of their experience to be receaving information, emotions or support by the experience and communicating about crossing the boundary between life and death. As (2) reflections on the cause of their experiences bereaved individuals described certain and uncertain explanations of the phenomenon, ruling out explanations and the compatibility or incompatibility of the experience with their prior worldviews. The process of attribution thinking must be perceived as meaningful regardless of the outcome of the bereaved person's reflection.

The Absence of Funeral Rites as a Risk Factor for the French Bereaved Population.

During the COVID-19 pandemic, stringent measures were imposed in numerous countries, including France. These measures significantly disrupted societal practices, particularly mourning and funeral rituals. This study, conducted between June and September 2021 as part of the COVIDEUIL-France research, involved 242 participants, predominantly female (84%) with an average age of 49.64 years. The research aimed to investigate the consequences of the absence of funeral rituals and the adoption of personalized, domestic, and digital alternatives. Using online surveys and psychological tools, including the Traumatic Grief Inventory Self Report Version (TGI-SR), General Health Questionnaire-28 (GHQ-28), and Post-traumatic Growth Inventory (PTGI), the study found a significant correlation between the lack of traditional practices and grief complications. Despite 21.81% of participants compensating with personal commemorations, digital commemorations were underutilized, raising questions about their effectiveness. The study provides crucial insights, emphasizing the need to address the psychological effects of disrupted mourning practices in France.

Development of loneliness and social isolation after spousal loss: A systematic review of longitudinal studies on widowhood.

BACKGROUND: Spousal loss is a stressful life event that is associated with loneliness and social isolation, both of which affect mental and physical health. The primary objective of this paper was to synthesize longitudinal studies that investigated loneliness and social isolation in widowhood. METHODS: A systematic search of the literature was conducted using three electronic databases. 26 longitudinal studies published through June 2024 were included for further analysis. Participant characteristics, study design, and key findings were extracted. RESULTS: Most studies were from the United States or Europe, included more widows than widowers, and assessed loneliness in older adults aged >60 years. Loneliness peaked directly following spousal death, but findings were inconsistent regarding the lasting effects of widowhood. Heterogeneity in the longitudinal trajectories of loneliness was noted, with studies showing linear increases, decreases, or curvilinear relationships over time. Several factors modified the relationship between widowhood and loneliness, including volunteerism, military experience, income, and age. Widowers consistently reported greater loneliness and worse social isolation when compared with widows. Few studies investigated social isolation specifically, but those that did found that social isolation may decrease in widowhood. CONCLUSIONS: As the world grapples with a social pandemic of loneliness and social isolation, widowed adults may be uniquely affected. Few studies investigated the longitudinal trajectory of loneliness and especially social isolation in widowhood, and those that did found heterogenous results. Future work is needed to understand why some widowed adults are uniquely affected by feelings of loneliness and social isolation while others are not, and whether potentially modifiable factors that moderate or mediate this relationship could be leveraged by psychosocial interventions.

Self-compassion-based online group psychotherapy for bereavement-related grief: The COMPACT feasibility trial.

OBJECTIVE: This study aimed to examine the feasibility and effectiveness of online group psychotherapy focused on self-compassion for individuals experiencing bereavement-related grief. METHOD: This single-arm feasibility trial involved participants aged 18 years or older who had experienced bereavement at least 6 months prior the five-week intervention. Outcomes were measured at baseline, immediately post-intervention, and 4 and 12 weeks later. The primary endpoint was the percentage of participants who completed four out of five sessions; the pre-defined feasibility criterion was 70%. Secondary endpoints included measures of grief, depression, anxiety, self-compassion, and resilience. RESULTS: The program was conducted in three courses with 18, 26, and 16 participants, respectively. The primary endpoint was met for 83.1% of participants (54/65). Cohen's d effect sizes ([95% CI] 12 weeks vs. baseline) for grief, depression, anxiety, self-compassion, and resilience were - 0.25 [-0.52, 0.03], -0.64 [-0.94, -0.34], -0.48 [-0.77, -0.19], 0.50 [0.21, 0.79], and - 0.07 [-0.34, 0.21], respectively. CONCLUSIONS: Online group psychotherapy focused on self-compassion for individuals with bereavement-related grief is feasible and effective for addressing grief and psychological distress. Randomized controlled trials are warranted to confirm the intervention's efficacy. TRIAL REGISTRATION NUMBER: UMIN000048554, registered 2 August 2022.

Aftercare Provision for Bereaved Relatives Following Euthanasia or Physician-Assisted Suicide: A Cross-Sectional Questionnaire Study Among Physicians.

Objectives: Relatives of patients who died after euthanasia or physician-assisted suicide (EAS) might need (specific) aftercare. We examined if and how physicians provide aftercare to bereaved relatives of patients who died after EAS, and which patient-, physician- and process characteristics are associated with providing aftercare. Methods: A cross-sectional questionnaire study was conducted among 127 physicians (general practitioners, clinical specialists, and elderly care physicians) in the Netherlands. Associations were examined using multivariable logistic regression analyses. Results: Most physicians had had at least one follow-up conversation with bereaved relatives (77.2%). Clinical specialists less often provided aftercare compared to GPs. Also, aftercare was more often provided when the deceased had a cohabiting partner. Topics addressed during aftercare conversations included looking back on practical aspects of the EAS trajectory, the emotional experience of relatives during the EAS trajectory and relatives' current mental wellbeing. A minority of aftercare conversations led to referral to additional care (6.3%). Conclusion: Aftercare conversations with a physician covering a wide-range of topics are likely to be valuable for all bereaved relatives, and not just for "at risk" populations typically targeted by policies and guidelines.

Prolonged Grief Disorder in ICD-11 and DSM-5-TR: Factor structure, and psychosocial and loss-related correlates in a sample of widowed persons. / Zespól zaloby przedluzonej w ICD-11 i DSM-5-TR: struktura czynnikowa oraz korelaty socjodemograficzne i zwiazane ze strata w próbie osób owdowialych.

OBJECTIVES: This study sought to determine whether the symptoms of prolonged grief disorder (PGD) according to ICD-11 and DSM-5-TR have a unifactorial structure. Second, we sought to determine the sociodemographic and loss-related correlates of PGD symptom severity according to ICD-11 and DSM-5-TR. METHODS: People who had lost a spouse (N = 144) in the past six months were examined using the Polish versions of the Prolonged Grief Disorder-13 scale (PG-13) and Inventory of Complicated Grief (ICG). Selected PG-13 and ICG items were included in the analyses to cover the PGD criteria according to ICD-11 and DSM-5-TR. RESULTS: Confirmatory factor analyses supported the one-dimensional structure of both sets of symptoms of the disorder. Briefer time since loss and loss due to an accident were associated with PGD symptom severity according to both ICD-11 and DSM-5-TR. CONCLUSIONS: PGD is a one-dimensional and internally consistent psychopathological syndrome. Widows and widowers who have recently lost their spouse due to an accident may be at especially heightened risk of developing severe levels of PGD symptoms.

Development of a self-management mobile app for bereaved adolescents: evaluating patient and public involvement.

Background: Losing a family member during childhood is a potentially traumatic event and increases the risk of mental health difficulties. Adolescents have the right to express their views in research of relevance to them, but few studies have involved bereaved adolescents as collaborators (i.e. Patient and Public Involvement (PPI)). Furthermore, to ensure meaningful and non-tokenistic involvement, bereaved adolescents' levels of participation and experiences of taking part in research need to be evaluated.Objectives: The aim was to describe and evaluate a PPI process working with bereaved adolescents to develop a self-management mobile app for adolescents in grief.Methods: The PPI process consisted of four workshops during which the app's logo, colours, name, content, and layout were discussed with six parentally bereaved adolescents aged 13-18 years. The adolescents were recruited through a non-profit organisation providing support for adolescents in grief. The PPI process was documented and evaluated using participant observations and an online survey completed by the adolescents, covering the themes of social context, participation, and influence.Results: The adolescents perceived the social context as comfortable and inclusive, where their knowledge was valued. Their participation was characterised by ownership and motivated by a desire to help others with similar experiences. The adolescents' ability to participate in PPI activities was assisted by the researchers' flexibility, although challenging assignments may have made participation harder. Throughout PPI activities, adolescents contributed with relevant input and reported feeling influential. The study reached the intended levels of participation and appeared to adequately fulfil the adolescents' right to participation.Conclusions: Engaging adolescents who have undergone a potentially traumatic event, such as the loss of a family member, in research can enhance the overall relevance of the study. Moreover, it can entail a meaningful and positive experience for the participating adolescents, while also fulfilling their fundamental right to participation.

A collaborative process with parentally bereaved adolescents to develop a psychosocial self-management mobile app for adolescents in grief was described and evaluated.Adolescents made significant contributions, took ownership, and experienced having influence over the decisions made, which increased the relevance of the intervention.The collaborative process reached the intended level of participation and created a positive and meaningful experience for the adolescents.

Disenfranchised Grief: Which Grieving Rules Do German Mid-adolescents Hold?

Every society adheres to grieving rules that govern how people experience loss and grief. These are rarely communicated explicitly, which can lead to insecurities in dealing with one's own grief and the grief of others. This is particularly true for adolescents. Based on Doka's concept of disenfranchised grief, this study explores the grieving rules of mid-adolescents. Cross-sectional data collection took place in November and December 2022 at six secondary schools in Germany. A total of 226 adolescents predominantly aged between 14 and 16 years completed the questionnaire. The analysis of the data shows that in some respects, mid-adolescents have similar grieving rules as adults. However, they are more inclusive when it comes to losses of ex-partners, pets and people with intellectual disabilities. Possible sources of (self-)disenfranchisement are parasocial relationships and the duration of grief. Open communication about grieving rules is suggested to prevent possible disenfranchisement.

Memory-making interventions for children and their families receiving pediatric palliative or bereavement care: A systematic review protocol.

Background: In paediatric palliative and bereavement care, providing comprehensive support that extends beyond medical treatment to address the emotional and psychosocial needs of children and their families is essential. Memory-making interventions play a critical role in capturing cherished moments and fostering emotional resilience. However, widespread consensus on the foundation and scope of memory-making interventions for children and young people remains sparse. This review aims to identify, appraise, and synthesise the evidence on memory-making interventions for children and young people with life-limiting or life-threatening conditions and their family members receiving palliative or bereavement care. Methods: This systematic review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). A systematic search will be undertaken from January 1, 1985, to February 27, 2024, across the following databases: PubMed, EMBASE, CINAHL (EBSCO), PsycINFO (EBSCO), Web of Science, the Cochrane Library, and Scopus. Studies across diverse research designs that examine children (0-19 years) with life-limiting or life-threatening conditions undergoing memory-making interventions with psychosocial or other outcomes will be included. Screening, data extraction, and quality appraisal will be performed by two independent reviewers, with a third reviewer resolving discrepancies. Joanna Briggs Institute guidelines for conducting mixed methods systematic reviews will be used to inform the data analysis and synthesis process. Conclusions: This review will provide critical insights into the existing evidence base on memory-making interventions in paediatric palliative and bereavement care, highlighting psychosocial and other impacts, implementation factors, and evidence quality. By identifying best practices and gaps in knowledge, this evidence review may inform future research and intervention design, or adaptation, and contribute to the enhancement of healthcare for children and young people with life-limiting and life-threatening conditions and their families as well as families in bereavement. Registration: This review was registered in PROSPERO, the International Prospective Register of Systematic Reviews (CRD42024521388; 18/03/2024).

Exploring Resilience and Post-traumatic Growth Among Bereaved Adults in Kosovo.

The study explores resilience and posttraumatic growth in adults in Kosovo who have experienced grief, using the Resilience Portfolio Model as a guiding framework. Twelve participants shared their experiences through semi-structured interviews, aiming to capture detailed personal narratives and insights into coping with loss. Thematic analysis of the data revealed three main themes: "Reaction to Loss," "Navigating through Loss and Embracing Adaptations," and "Resilience and Posttraumatic Growth." The findings highlight the transformative experiences contributing to personal development and resilience, emphasizing the significant role of cultural dimensions in shaping resilience and posttraumatic growth. The study underscores the importance of considering cultural context in therapeutic approaches to better support individuals in their recovery and growth from experiences of loss.

Pathways to Resilience: Exploring Post-Traumatic Growth in the Wake of Drug-Related Deaths.

This review examines Post-Traumatic Growth (PTG) in the aftermath of Drug-Related Deaths (DRDs) amid a public health crisis underscored by an increase in overdose fatalities. It examines grief and unique challenges confronting those bereaved by DRDs, such as stigmatization, and synthesizes existing literature to elucidate pathways toward resilience and growth. Fundamental mechanisms facilitating PTG, including reframing loss, engaging in open dialogues with support, and cultivating self-compassion and hope, are highlighted, demonstrating the transformative potential of navigating bereavement with supportive communication and personal development. The review also addresses limitations within current research, such as focusing on specific bereaved populations, which may impact the generalizability of findings. Recommendations for future research include longitudinal studies and broader demographic inclusion to understand and support individuals grieving a DRD. Advocating for holistic, growth-oriented bereavement care models, this review underscores the necessity of comprehensive approaches to facilitate healing and growth in the wake of DRDs.