Legacy Building: The Experience of Heartbeat Recordings for Bereaved Caregivers in Pediatrics.

The death of a child is a devastating event that can lead to chronic sorrow and great stress among parents and caregivers. Legacy-building and memory-making experiences for anticipatory grief and bereavement have become increasingly popular in pediatric hospitals, including the use of heartbeat recordings. This intervention created by Brian Schreck at Cincinnati Children's Hospital Medical Center involves audio recording the patient's heartbeat or other respiratory sounds with a digital stethoscope to construct and preserve the patient's legacy, as well as to act as a therapeutic tool.

Maintaining Parental Roles During Neonatal End-of-Life Care: A Review of the Literature.

Parents who are experiencing neonatal death need support in promoting and maintaining their parental role. This includes parenting their infant during end-of-life. Bedside nurses should partner with parents to help them maintain the parent-infant relationship by establishing effective communication, building trust, and promoting the parental role. By doing so, parents will utilize these experiences to process their grief through meaning-making.

Prolonged grief disorder in an inpatient psychiatric sample: psychometric properties of a new clinical interview and preliminary prevalence.

BACKGROUND: Prolonged Grief Disorder (PGD) was newly included in the ICD-11 and DSM-5-TR. It is not yet part of the standard assessments in many healthcare systems, including psychiatric wards. Because disordered grief is associated with suicidality, sleep problems and substance use disorders, an investigation into PGD in psychiatric inpatients is warranted. METHOD: We interviewed N = 101 psychiatric inpatients who were admitted to the open psychiatric wards and the day hospital of a German psychiatric hospital and who had lost a person close to them. Assessments comprised clinical interviews and self-report instruments covering PGD and other mental disorders. We specifically developed the International Interview for Prolonged Grief Disorder according to ICD-11 (I-PGD-11) for the study and examined its psychometric properties. RESULTS: The prevalence rate of PGD among bereaved patients according to ICD-11 was 16.83% and according to DSM-5-TR 10.89%. The I-PGD-11 showed good psychometric properties (Mc Donald's ω = 0.89, ICC = 0.985). Being female, having lost a child or spouse, and unnatural or surprising circumstances of the death were associated with higher PGD scores. TRIAL REGISTRATION: Approval was obtained by the ethics committee of the of the Goethe University Frankfurt (2021-62, 2023-17) and the Chamber of Hessian Physicians (2021-2730-evBO). The study was preregistered ( https://doi.org/10.17605/OSF.IO/K98MF ). LIMITATIONS: We only assessed inpatients of one psychiatric clinic in Germany, limiting the generalizability of our findings. CONCLUSION: The present study underlines the importance of exploring loss and grief in psychiatric inpatients and including PGD in the assessments. Given that a significant minority of psychiatric inpatients has prolonged grief symptoms, more research into inpatient treatment programs is needed.

The change of working alliance and the association to treatment outcome in an internet-based therapy after pregnancy loss.

BACKGROUND: Working alliance is a prominent non-specific factor for treatment outcomes in face-to-face and internet-based interventions. The association between working alliance and therapy outcome appears to be time- and disorder-specific, but less is known about the change of working alliance during the intervention and the impact of working alliance in grief-specific interventions. The present study examines the association between the change of working alliance and treatment outcomes in an internet-based intervention for parents who experienced pregnancy loss. METHODS: 228 participants received a grief intervention based on cognitive behavioral therapy with asynchronous text-based therapist feedback. Prolonged grief and related symptoms of traumatic stress, depression, anxiety, and general psychopathology were assessed with validated instruments before and after the intervention. The change of working alliance was assessed using the short version of the Working Alliance Inventory at mid-treatment (session 4) and the end of the treatment (session 10). RESULTS: Data for N = 146 persons was analyzed. Working alliance in total and all subscales increased significantly from sessions 4 to 10. This change in working alliance correlated significantly with a reduction in prolonged grief. Changes in subscales of working alliance also correlated with symptoms of depression and general psychopathology. Regression analysis showed that a change in working alliance predicted a reduction in prolonged grief but did not predict improvements in other grief-related symptoms. CONCLUSION: The results examine the change of working alliance during an internet-based intervention and the association with treatment outcome. A small impact of change in working alliance on treatment outcome of prolonged grief was confirmed, but not on related symptoms. Further research is needed to assess moderators of the alliance-outcome association to improve internet-based interventions. TRIAL REGISTRATION: Not applicable.

Grief-focused cognitive behavioral therapies for prolonged grief symptoms: A systematic review and meta-analysis.

BACKGROUND: Studies suggest that cognitive behavioral therapies (CBTs) may be efficacious in reducing symptoms of prolonged grief disorder (PGD), but no comprehensive overview and pooled estimate of CBTs' effect on PGD in adulthood exist. We conducted a systematic review and meta-analysis of randomized controlled trials. METHOD: Studies were selected independently by two researchers based on a systematic literature search in Pubmed, APA PsycInfo, Web of Science, and Embase. Meta-analyses provided pooled effect sizes for the effects of CBTs on PGD symptoms and secondary outcomes. We explored potential moderators of effect, risk of bias of included studies, and evaluated the quality of the meta-analytical evidence through the Grading of Recommendations, Assessment, Development, and Evaluation system. RESULTS: The meta-analysis included 22 studies of 2,602 bereaved adults (averaged study Mage = 49 years). CBTs had a statistically significant medium effect on PGD symptoms at postintervention (K = 22, g = 0.65, 95% CI [0.49, 0.81]), and a large effect at follow-up (K = 7, g = 0.90, 95% CI [0.37, 1.43]). Statistically significant small-to-medium effects were found at postintervention on posttraumatic stress symptoms (K = 10, g = 0.74, 95% CI [0.49, 0.98]), depression (K = 19, g = 0.53, 95% CI [0.36, 0.71]), and anxiety (K = 9, g = 0.35, 95% CI [0.22, 0.49]). The effects on PGD remained unchanged when adjusted for possible outliers. None of the moderator analyses reached statistical significance. CONCLUSION: This review suggests that CBTs are efficacious in reducing PGD symptoms in adulthood. Generalization of findings should be done with caution due to considerable inconsistency and indirectness of meta-analytic evidence. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Entrenched grievance as a harbour for the unmourned.

This paper hopes to enhance understanding about entrenched grievance in a couple of ways: (a) Initially, the paper reviews how entrenched grievance reflects melancholic states of mind in terms of its avoidance of the pain of loss and change. But the main contribution of the paper is likely to be found in (b), that is, via detailed clinical material, the paper illustrates how earnest efforts on the part of the analyst to bring understanding may lead to cognitive entrapments such as the convictions incumbent in the "knowing" analyst. Further, that this knowing analyst may need to become aggrieved, that is, narrow, impatient and concrete towards her patient's entrenchment, and then to recogize this plight in herself before she can genuinely hear her patient's grievance about her from a wider view, that is as a complaint from the "lively self", deserving recognition. The clinical detail demonstrates that such recognition softened the patient's grievance, allowing both members of the dyad to become more collaborative and open to the pains and growth available from mourning states of mind.

[The subjective experience of contact with the deceased or necrophany: a widespread and little-known phenomenon]. / Le vécu subjectif de contact avec un défunt ou nécrophanie : un phénomène répandu et peu connu.

The subjective experience of contact with the deceased (VSCD), spontaneous and direct, by people most often in mourning, is neither rare nor new. It's even considered a universal and timeless phenomenon. Yet this psychological and sensory manifestation, which can manifest itself through sight, hearing, smell or touch, remains little known to the general public and health professionals alike. This article is an opportunity for many to discover this phenomenon, also known as necrophany.

Individual and systemic variables associated with prolonged grief and other emotional distress in bereaved children.

Most children confronted with the death of a loved one do not experience persisting psychological problems. However, for some, acute grief reactions develop into prolonged grief disorder (PGD) and other mental health problems. Research findings suggest that bereavement outcomes in children are associated with negative cognitions and avoidant coping and with different parenting behaviours. However, knowledge about factors influencing grief in children is still limited and few studies have examined the relative impact of psychological (individual-level) variables and systemic (family-level) variables in affecting their responses to loss. The aim of the current study was to examine the association of different bereavement outcomes in 8-18 year old children (including levels of self-rated PGD, depression, and posttraumatic stress (PTS)) with sociodemographic variables, individual-level variables (including negative cognitions and anxious and depressive avoidance), and family-level variables (including the severity of caregiver's PGD, depression, and anxiety, and indices of parenting behaviours, rated both by children and by their caregivers). Questionnaire data were used from 159 children plus one of their caregivers, gathered as part of the pre-treatment assessment in a randomized controlled trial. Results showed that most of the children's bereavement outcomes, including PGD severity and PTS severity, were associated with indices of negative cognitions and avoidance behaviours. Caregiver's depression and anxiety showed a very small, yet significant, association with two children's outcomes. Caregiver-rated reasoning/induction (one index of parenting behaviours) showed a small association with children's PTS-related functional impairment. Exploratory analyses indicated that the linkage between parenting behaviour and children's outcomes may be moderated by whether the behaviour comes from father or mother. This is one of the first studies examining how individual cognitive behavioural variables plus the mental health of caregivers and indices of parenting may affect PGD and other outcomes in bereaved children. The findings provide tentative indications that individual and family-level variables influence these outcomes, albeit that more research is urgently needed.

Facing the unthinkable: Life-threatening illness in the analyst and its impact on the analytic couple.

This article explores the impact of the analyst's life-threatening illness on the analytic couple; it is informed through two theoretical lenses - Freud's ideas about the vicissitudes of mourning, which have been elaborated on by Melanie Klein and John Steiner, and Christopher Bollas's ideas about destiny and idiom. Clinical material will focus on my on-going work with a middle-aged man who has a history of early abandonment and loss and who struggles with being able to remain separate from his objects while being in relationship with them.

Relationship between Depressive Symptoms, Caregiver Strain, and Social Support with Dementia Grief in Family Caregivers.

Background and Objectives: Dementia grief in family caregivers of people with dementia refers to grieving prior to the death of the care recipient. It is related to psychosocial risk factors that may have a negative impact on the health of these family caregivers. This study aimed to describe the relationship between depressive symptoms, caregiver strain, and social support with dementia grief in family caregivers of people with dementia. Materials and Methods: A descriptive correlational cross-sectional study was conducted. A total of 250 family caregivers of people with dementia participated. Dementia grief was the main variable, and depressive symptoms, caregiver strain, and social support were assessed. Additionally, socio-demographic data were collected. Descriptive statistics were calculated, and a bivariate correlation analysis and a multiple linear regression analysis were performed for dementia grief. Results: Higher scores for dementia grief were found in women, in family caregivers of patients at advanced stages of dementia, and in family caregivers with a low level of education. High levels of depressive symptoms and caregiver strain and low levels of social support indicated greater intensity of dementia grief. Depressive symptomatology was the variable with the greatest influence on dementia grief. Caregiver strain and social support also related to dementia grief, but to a lesser extent. Conclusions: In family caregivers, depressive symptoms, caregiver strain, and social support are related to the intensity of dementia grief, with a greater influence of depressive symptoms. Moreover, being female, having a low level of education, and caring for a care recipient at an advanced stage of dementia are factors associated with increased dementia grief. Concerning study limitations, the sample was restricted, belonging to a specific region of Spain and to a Provincial Federation of associations. It is necessary to exercise caution in generalizing results due to the sociodemographic and geographical characteristics of the sample.

Resisting the (re-)medicalisation of dying and grief in the post-digital age: Natural language processing and qualitative analysis of data from internet support forums.

In the mid-twentieth century, the social movement of death revivalism sought to resist the medicalisation of dying and grief through promotion of the dying person retaining autonomy, and societal openness toward death and bereavement. Despite this advocacy, present-day dying in high income countries is largely institutionalised, with value placed on control over the body and emotions. These phenomena are at odds with the ambitions of death revivalism, and demonstrate the re-medicalisation of dying and grief. Furthermore, contemporary society is continually advancing into the post-digital age, reflected in digital technologies being a tacit part of human existence. Within this framework, this study aims to investigate how people living with life-limiting illness and their loved ones experience, negotiate, and resist medicalisation of dying and grief through online internet forums. We collected posts through web-scraping and utilised Natural Language Processing techniques to select 7048 forum posts from 2003 to 2020, and initially categorise data, before utilising Inductive Thematic Analysis, which generated two major themes. The theme of 'Comfort' describes online forums facilitating psychosocial support which was often used to compensate for systemic deficiencies, especially during the Covid-19 pandemic. Common sources of comfort included animal companions and spirituality, in stark contrast with the medicalised model. The theme of 'Capability' describes online forums acting as solutions for people facing disempowering care systems, including providing information on legal rights and benefits which may not be otherwise easily available, and facilitating collective advocacy. Our findings indicate that community-led online forums can play an effective and sustainable role in democratising care and retaining agency when facing life-limiting illness and grief. Future palliative and bereavement care research must focus on how online forums can be integrated into existing systems, made transparent and accessible, be adequately funded and structured, and be optimised, including compensating for service disruption encountered during future pandemics.

Developing text-messaging support for fathers after perinatal loss.

BACKGROUND: Perinatal loss is a devastating occurrence for expecting parents. Although both parents are affected, research on fathers' grief has not resulted in effective support services for fathers. AIM: To describe a multi-stage co-design process for developing text messaging support for fathers experiencing perinatal loss. METHODS: Co-designed text messages were developed in collaboration with a perinatal bereavement organisation, mothers and fathers with lived experience of perinatal loss, and clinicians working with bereaved parents. Bereaved parents responded to a survey about bereaved fathers' information needs (stage 1). A qualitative descriptive data analysis created topics for the generation of text messages (stage 2). Parents with lived experience and clinicians evaluated the messages on importance and clinical fit (stage 3). Messages were revised (stage 4), followed by parent and clinician evaluation and final message revision (stage 5). FINDINGS: There were 959 survey respondents; the majority agreed that support for fathers would have been useful; 539 provided comments. Qualitative analysis created twelve topics within three themes, leading to the generation of 64 text messages. Messages were evaluated by 27 lived experience parents and 19 clinicians as important (91.6%) and understandable (91.3%), and 92.5% of clinicians agreed the messages fitted clinical guidelines. Message revision resulted in 59 messages across three themes. The final evaluation by 12 parents and 14 clinicians led to a final revised set of 52 messages. CONCLUSION: Text-based support for bereaved fathers can be developed in a co-design process to accord with clinical practice, from topics suggested parents with lived experience.

Open communication between patients and relatives about illness & death in advanced cancer-results of the eQuiPe Study.

OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.

Translation and validation of prolonged grief disorder (PG-13) scale in Urdu among bereaved adolescents with intellectual disability.

BACKGROUND: The study aimed to translate and validate the Prolonged Grief Disorder (PG-13) scale from English into Urdu language. This involved examining its psychometric properties, evaluating its factor structure and assessing both convergent and discriminant validity. The study was conducted within the cultural context of Pakistan and focused on the assessment of manifestations of grief, including symptoms of prolonged grief, in adolescents with mild-to-moderate intellectual disability (ID). The PG-13 scale was selected for this study due to its demonstrated accuracy in measuring prolonged grieving symptoms in bereaved population. METHOD: A total of 140 adolescents, aged 10-19 years according to the World Health Organization (WHO) 2018 criteria, were selected from 14 cities in Pakistan. These participants had lost loved ones within the time span of the last 4 years. The WHO (2018) guidelines for translation, adaptation, and validation were followed. RESULTS: The findings suggest that the translated and validated PG-13 scale has adequate psychometric properties, with Cronbach alpha coefficient of .97. Confirmatory factor analysis supports a single-factor structure for the scale, with factor loadings ranging from .80 to .95. CONCLUSION: The PG-13 Urdu version is a reliable and validated scale available for assessing grieving symptoms in the Pakistani context.

A unique combination of horror and longing: Traumatic grief in post-October 7, 2023, Israel.

On October 7, 2023 (10/7), Hamas militants brutally attacked Israeli towns and villages surrounding the Gaza Strip, resulting in the killing of more than 1100 people, most of whom were civilians slaughtered in their own homes. The killings occurred under highly traumatic circumstances, including shooting, the burning of homes, hunting down people who attempted to escape, and severe sexual assault. Thus, many Israelis today experience a unique mix of both posttraumatic and severe grief reactions. Traumatic grief (TG) is often defined as a condition that results from the death of a significant other and includes symptoms similar to posttraumatic stress disorder (PTSD) that are specifically related to the deceased, such as intrusive thoughts and memories about the deceased and hypervigilance expressed by constantly looking for them or cues associated with them. However, whereas definitions, phenomenological descriptions, and clinical illustrations of PTSD are abundant and widely validated, TG has yet to receive formal diagnostic status. In this paper, we aim to reexamine TG in the context of post-10/7 Israel. We argue that TG is a critical concept for clinicians working in Israel and other conflict-exposed areas of the world today, as it accurately captures the painful mix of grief- and trauma-related symptoms. We also suggest potential explanations for the lack of acknowledgment of TG as a formal diagnosis and discuss the possible role of historical events in the formation of new, relevant psychiatric diagnoses.

Prevalence and correlates of ICD-11 prolonged grief disorder among adults living in Ukraine during the war with Russia.

BACKGROUND: Although high rates of bereavement are evident in war-affected populations, no study has investigated the prevalence and correlates of probable ICD-11 prolonged grief disorder (PGD) under these circumstances. METHODS: Participants were 2050 adults who participated in a nationwide survey exploring the effects of the Ukraine-Russia war on the daily lives and mental health of Ukrainian people. RESULTS: Of the total sample, 87.7% (n = 1797) of people indicated a lifetime bereavement. In the full sample, 11.4% met the diagnostic requirements for probable ICD-11 PGD, and amongst those with a lifetime bereavement, the conditional rate of probable ICD-11 PGD was 13.0%. Significant risk factors of ICD-11 PGD included the recent loss of a loved one (6 months to a year ago), being most affected by a partner or spouse's death, loved one dying in the war, no recent contact with the deceased prior to their death, and meeting depression and anxiety diagnostic requirements. CONCLUSION: The study reveals that a significant percentage of Ukrainian bereaved individuals have probable ICD-11 PGD, and identifying risk factors, particularly war-related losses, will aid in the development of intervention and prevention programs for bereaved adults.