Living-loss: A narrative synthesis review of the grief process in parents of children with autism spectrum disorder.

PROBLEM: Realizing that a child has a lifelong developmental condition like Autism Spectrum Disorder (ASD) can create feelings of sadness and grief for the parents. It remains unclear, however, how parents deal with and understand these emotions. The purpose of this narrative review was to explore the grief process of parents of children with ASD. ELIGIBILITY CRITERIA: An analysis of the literature was conducted using the databases Psychinfo, Scopus, Web of Science, and PubMed. As part of our research, we also searched the grey literature (Google Scholar) and the thesis database (ProQuest) manually. Among the study criteria were (1) targeting direct informants as parents of children with ASD, (2) original and empirical research published in different English-language sources, (3) outcomes pertaining to grief experiences among parents, and/or processes involved in raising children with ASD, and (4) studies with qualitative data collection methods. SAMPLE: Seven articles met the inclusion criteria and were included in this narrative analysis. RESULTS: Our study's deductive content analysis revealed three primary themes: (i) manifestations of ambiguous loss, (ii) dealing with disenfranchised grief, and (iii) oscillation. CONCLUSIONS: The results showed that ASD in children can cause parents to feel ambiguity and uncertainty, experience grief, and may result in the modification of expectations, emergent affective responses, and self-blame attributions. When confronted with difficulties arising from their child's condition, parents of children with ASD may undergo significant life changes and oscillate between various coping strategies. IMPLICATIONS: The findings are expected to provide healthcare professionals, including nurses and front-line clinicians, with valuable information about the burden of grief experienced by parents of children with ASD so they can provide and validate the necessary support for them. Moreover, rigorous qualitative and quantitative studies are also required to support the claims made.

Prolonged Grief Disorder: Addressing Misconceptions With Evidence.

There are many misconceptions about Prolonged Grief Disorder (PGD). We show with data that PGD is a diagnosis that applies to a rare few of mourners who are at risk of significant distress and dysfunction. Those mourners who meet criteria for PGD have been shown to benefit from specialized, targeted treatment for it. The case against PGD is empirically unsubstantiated, and the need for scientific examination of effective treatments is warranted.

Somatic symptom distress and ICD-11 prolonged grief in a large intercultural sample.

Background: Grief is a multi-faceted experience including emotional, social, and physical reactions. Research in ICD-11 prolonged grief disorder (PGD) in different cultural contexts has revealed different or potentially missing grief symptoms that may be relevant.Objective: This study thus aimed to explore the prevalence of somatic symptom distress and its associations with grief and negative affect in a culturally diverse sample of bereaved individuals with symptoms of PGD.Methods: Based on cross-sectional survey data from the Measurement and Assessment of Grief (MAGIC) project, this study included 1337 participants (mean age 23.79 yrs, 76.1% female) from three regions (USA: 62.3%, Turkey/Iran: 24.2%, Cyprus/Greece: 13.5%), who experienced a loss of a significant other. Associations between somatic symptom distress (Somatic Symptom Scale, SSS-8), symptoms of PGD (International Prolonged Grief Disorder Scale, IPGDS-33), anxiety (Generalized Anxiety Disorder Questionnaire, GAD-7), depression (Patient Health Questionnaire, PHQ-9) as well as demographic and loss related characteristics were investigated. Three hundred and thirteen participants (23.4%) scored above the proposed cut-off for clinically severe PGD.Results: 'High' or 'very high' levels of somatic symptom distress were more frequent in a possible PGD group (58.2%), than in a non-PGD group (22.4%), p < .001, as divided per cut-off in the IPGDS. In a multiple regression analysis, PGD symptoms were significantly but weakly associated with somatic symptom distress (ß = 0.08, p < .001) beyond demographics, loss-related variables, and negative affect. Negative affect (anxiety and depression) mediated the relationship of PGD symptoms with somatic symptom distress and the indirect effect explained 58% of the variance.Conclusions: High levels of somatic symptom distress can be observed in a substantial proportion of bereaved across cultures. Our findings suggest that PGD is related to somatic symptom distress partly and indirectly through facets of negative affect.

30.8% of bereaved adults showed 'high' or 'very high' levels of somatic symptom distress.Anxiety and depression partially mediate relationship of PGD symptoms with somatic symptom distress.Findings encourage practitioners to consider somatic symptom distress in psychotherapeutic treatment of PGD.

The relationship between social acknowledgment and prolonged grief symptoms: a multiple mediation effect of beliefs about the goodness and controllability of grief-related emotions.

Background: Social acknowledgment is a protective factor for survivors of trauma. However, the role of social acknowledgment in association with prolonged grief symptoms has not yet been established.Objectives: The current study aims to explore the relationship between social acknowledgment and prolonged grief via two beliefs foundational to how people think about grief-related emotions (1) goodness (i.e. whether emotions are desirable, useful, or unwanted and harmful), and (2) controllability (i.e. whether emotions are regulated according to our will or involuntary, arising of their own accord). These effects were explored in two different cultural samples of bereaved people.Methods: One hundred and fifty-four German-speaking and two hundred and sixty-two Chinese bereaved people who lost their loved ones completed questionnaires assessing social acknowledgment, beliefs about the goodness and controllability of grief-related emotions, and prolonged grief symptoms.Results: Correlation analyses showed that social acknowledgment was positively linked with stronger beliefs about the goodness and controllability of grief-related emotions and negatively related to prolonged grief symptoms. Beliefs about the goodness and controllability of grief-related emotions correlated negatively with prolonged grief symptoms. Multiple mediation analyses suggested that beliefs about the controllability and goodness of grief-related emotions mediated the link between social acknowledgment and prolonged grief symptoms. Cultural groups did not moderate the above model.Conclusion: Social acknowledgment may be related to bereavement adjustment consequences via the roles of beliefs about the goodness and controllability of grief-related emotions. These effects seem to be consistent cross-culturally.

Social acknowledgment correlated positively with stronger beliefs about the goodness and controllability of grief-related emotions and negatively with prolonged grief symptoms.Beliefs about the goodness and controllability of grief-related emotions were negatively linked with prolonged grief symptoms.Beliefs about the controllability and goodness of grief-related emotions mediated the relationship between social acknowledgment and prolonged grief symptoms. The model presented cross-cultural consistency.

How the bereaved behave: a cross-cultural study of emotional display behaviours and rules.

Cultural norms may dictate how grief is displayed. The present study explores the display behaviours and rules in the bereavement context from a cross-cultural perspective. 86 German-speaking Swiss and 99 Chinese bereaved people who lost their first-degree relative completed the adapted bereavement version of the Display Rules Assessment Inventory. Results indicated that the German-speaking Swiss bereaved displayed more emotions than the Chinese bereaved. The Chinese bereaved, but not the German-speaking Swiss bereaved, thought that bereaved people should display more emotions than they actually did when they were with their close others (but not when they were alone). Bereaved people endorsed more emotional expression "when alone" than "when with close others", demonstrating a social disconnection tendency, which was more evident in the Chinese sample. Bereaved people endorsed more expression of positive emotions (e.g. affection/love) and less expression of powerful negative emotions (e.g. blame/guilt, anger) across cultures. Compared to their Chinese counterparts, the German-speaking Swiss sample indicated more actual expressions for most emotion types (i.e. joy/happiness, affection/love, sadness, anger, and denial) but thought bereaved people should express more joy/happiness and less blame/guilt. The results suggest that bereaved people's display behaviours and rules are influenced by culture, situation, and type of emotion.

Investigation into Grief Experiences of the Bereaved During the Covid-19 Pandemic.

The objective of the current study was to investigate the grief experiences of people affected by COVID-19. The study adopted a qualitative design of descriptive phenomenology. Fifteen adults who had lost a family member during the COVID-19 pandemic were selected as the sample through the purposive sampling method until theoretical saturation was achieved. Data was collected using semi-structured interviews and the Colaizzi analysis method. Six main themes (i.e., unexpressed grief, psychosomatic reactions, negative emotions, family problems, and social and occupational problems) were extracted. Data analysis showed that complex disenfranchised grief is the pervasive consequence of the COVID-19 experience. According to the findings, participants experienced disenfranchised grief during the loss of their loved ones due to the COVID-19 disease, which was a complex, painful experience accompanied by negative emotions and family, work, and social tensions. This grief is accompanied by more severe and prolonged symptoms, making it difficult for the bereaved to return to normal life. In unexpressed grieving, there are intense feelings of grief, pain, separation, despair, emptiness, low self-esteem, bitterness, or longing for the presence of the deceased. This grief originated from the conditions of quarantine and physical distance on the one hand, which required the control of the outbreak of the COVID-19 disease, and on the other hand, the cultural-religious context of the Iranian people.

The Cultural Supplement: A New Method for Assessing Culturally Relevant Prolonged Grief Disorder Symptoms.

Background: The new diagnosis of prolonged grief disorder (PGD) is both an opportunity and a challenge for researchers, clinicians, and bereaved individuals. The latest definition of PGD includes a refreshing and novel feature: the cultural caveat, i.e., clinicians must determine that the grief presentation is more severe and of longer duration than would be expected by an individual's culture and context. Currently, there are no guidelines on how to operationalize the cultural caveat in mental health care settings. Method: To respond to this important demand we have developed, piloted, and tested the cultural supplement module of the International Prolonged Grief Disorder scale (IPGDS). The cultural supplement aims to provide clinicians with a catalogue of culturally relevant symptoms of grief that indicate probable PGD alongside a simple framework for cultural adaptation for use in specific clinical settings. Results: In this short report we outline the rationale and aim of the cultural supplement and provide a summary of our latest validation studies of the IPGDS with bereaved German-speaking, Chinese and Swiss migrant individuals. We also provide a step-by-step framework for adaptation of the cultural supplement that clinicians and researchers may use when working with different cultural groups. Conclusion: To date, this is the first PGD questionnaire based on the ICD-11, and the first to include a cultural supplement that can be adapted to different contexts and groups. This cultural supplement will provide clinicians and researchers an easy-to-use assessment tool with the aim to improve the global applicability of the ICD-11 PGD definition.

Existential isolation and prolonged grief in bereaved people: The moderating role of culture.

OBJECTIVE: Existential isolation refers to an individual's awareness of the unbridgeable gulf between oneself, other people and the world. This kind of isolation has been found to be higher in individuals with nonnormative experiences, such as racial or sexual minorities. Bereaved individuals may experience a stronger sense of existential isolation and feel that no one shares their feelings or perceptions. However, research on bereaved people's experiences of existential isolation and its effects on post-loss adaptation is scarce. This study aims to validate the German and Chinese versions of the Existential Isolation Scale, investigate cultural and gender differences in existential isolation and explore the associations between existential isolation and prolonged grief symptoms in German-speaking and Chinese bereaved individuals. METHODS: A cross-sectional study with 267 Chinese and 158 German-speaking bereaved participants was conducted. The participants completed self-report questionnaires assessing existential isolation, prolonged grief symptoms, social networks, loneliness and social acknowledgement. RESULTS: The results indicated that the German and Chinese versions of the Existential Isolation Scale demonstrated adequate validity and reliability. No cultural or gender differences (or their interaction) were found for existential isolation. Higher existential isolation was associated with elevated prolonged grief symptoms, which was further moderated by the cultural group. The relationship between existential isolation and prolonged grief symptoms was significant for the German-speaking bereaved people but not significant for those from China. CONCLUSION: The findings highlight the role of existential isolation in the adaptation to bereavement and how different cultural backgrounds moderate the effect of existential isolation on post-loss reactions. Theoretical and practical implications are discussed.

The Ambiguous Loss Inventory Plus (ALI+): Introduction of a Measure of Psychological Reactions to the Disappearance of a Loved One.

BACKGROUND: The disappearance of a significant person is an ambiguous loss due to the persistent uncertainty about the whereabouts of the person. Measures specifically capturing the psychological consequences of ambiguous loss are lacking. Therefore, this study aimed to develop the Ambiguous Loss Inventory Plus (ALI+) and evaluated its suitability for use with relatives of missing persons. METHODS: ALI+ items were generated based on established measures for prolonged grief symptoms and literature on psychological responses to ambiguous loss. Eight relatives of missing persons (three refugees, five non-refugees) and seven international experts on ambiguous loss rated all items in terms of understandability and relevance on a scale from 1 (not at all) to 5 (very well). RESULTS: On average, the comprehensibility of the items was rated as high (all items ≥ 3.7). Likewise, all items were rated as relevant for the assessment of common responses to the disappearance of a loved one. Only minor changes were made to the wording of the items based on the experts' feedback. CONCLUSIONS: These descriptive results indicate that the ALI+ seems to cover the intended concept, thus showing promising face and content validity. However, further psychometric evaluations of the ALI+ are needed.

Grieving Parents' Meaning-Making Narration in Relation to Value Orientations: A Cross-Cultural Study.

This study investigated the association between prolonged grief (PG) severity and meaning-making narration in a cross-cultural context, and specifically aimed to illustrate the role of value orientation in shaping the grieving process. 30 Chinese and 22 Swiss parents who lost their child were asked to narrate and appraise specific memories to reflect their self-evaluation of traditional and modern values. The self-reported Prolonged Grief Disorder Scale (ref ICD-11) assessed PG severity. Compared with the Swiss sample, the Chinese sample provided more elaborated memories, which was not associated with symptom severity. Both Chinese and Swiss bereaved parents with more severe PG provided more narratives of loss-related memories, particularly in response to modern values. They also provided more appraisals of negative meanings for self-defining memories, particularly in relation to their traditional values. These findings indicate that, despite cultural differences in narration tendency, PG severity in bereaved parents was associated with the maladaptive integration of autobiographical memories across different cultures, in relation to value orientations. A clinical implication is the potential value of facilitating narrations of grieving clients that center on value orientations to mitigate the hardship of the personal loss.

The New ICD-11 Prolonged Grief Disorder Guidelines in Japan: Findings and Implications from Key Informant Interviews.

Prolonged grief disorder (PGD) is a new mental health disorder, recently introduced in the International Classification of Diseases (ICD-11), World Health Organization Classification of Diseases (WHO). The new ICD-11 guidelines reflect an emerging wave of interest in the global applicability of mental disorders. However, the selection of diagnostic core features in different cultural contexts has yet to be determined. Currently, there is debate in the field over the global applicability of these guidelines. Using semi-structured interviews with 14 key informants, we explored the acceptability of ICD-11 guidelines for PGD according to Japanese health professionals as key informants. The interviews revealed symptoms of grief possibly missing in the ICD-11 PGD guidelines including somatization and concepts such as hole in the heart. Additionally, sociocultural barriers such as stigma and beliefs about the social desirability of emotions may challenge patients' and clinicians' acceptance of the new ICD-11 criteria.

Examination of the New ICD-11 Prolonged Grief Disorder Guidelines Across Five International Samples.

Background: Prolonged grief disorder (PGD) is a new disorder included in the 11th edition of the International classification of diseases (ICD-11). An important remit of the new ICD-11 is the global applicability of the mental health disorder guidelines or definitions. Although previous definitions and descriptions of disordered grief have been assessed worldwide, this new definition has not yet been systematically validated. Method: Here we assess the validity and applicability of core items of the ICD-11 PGD across five international samples of bereaved persons from Switzerland (N = 214), China (N = 325); Israel (N = 544), Portugal (N = 218) and Ireland (N = 830). Results: The results confirm that variation in the diagnostic algorithm for PGD can greatly impact the rates of disorder within and between international samples. Different predictors of PGD severity may be related to sample differences. Finally, a threshold for diagnosis of clinically relevant PGD symptoms using a new scale, the International Prolonged Grief Disorder Scale (IPGDS), in three samples was confirmed. Conclusions: Although this study was limited by lack of questionnaire data points across all five samples, the findings for the diagnostic threshold and algorithm iterations have implications for clinical use of the new ICD-11 PGD criteria worldwide.

Item Response Model Validation of the German ICD-11 International Trauma Questionnaire for PTSD and CPTSD.

Background: In the 11th revision of the International Classification of Diseases (ICD-11) posttraumatic stress disorder (PTSD) and the complex variant (CPTSD) were newly conceptualised. The International Trauma Questionnaire (ITQ) was developed as a brief self-report measure to screen for both disorders. The English original version has been rigorously tested and presents convincing psychometric properties. The aim of the current study was to validate the German version by means of item response theory (IRT). Method: This is a secondary analysis of a representative, trauma-exposed adult sample from the German general population (N = 500). 1- and 2-parameter logistic IRT models (i.e. examination on an item level), diagnostic rates and confirmatory factor analyses were calculated. Results: All items showed good model fit and acceptable to good performance aligning with the items of the English original except for item C1 (Long time to calm down) which had a high endorsement rate and a low discriminatory power yielding low information gain. CPTSD diagnostic rate of 3.2% was lower than in comparable literature. Confirmatory factor analysis deemed the six first-order, two second-order factors model superior. Conclusion: Measurement and factorial validity of the German version of the ITQ was confirmed. The German translation matches the English original in most psychometric properties and can thus be used for research and clinical practice.

Cross-cultural generalizability of the ICD-11 PGD symptom network: Identification of central symptoms and culturally specific items across German-speaking and Chinese bereaved.

BACKGROUND: Prolonged grief disorder (PGD) is a newcomer to psychopathology and the new ICD-11 diagnostic criteria are conceptualized with an eye towards global applicability. Yet, previous network studies have not used official ICD-11 criteria nor tested whether network structures generalize across cultural groups even though much current research relies on ICD-11 PGD criteria. METHODS: To overcome these limitations, the present study used data from 539 German-speaking (n = 214) and Chinese (n = 325) bereaved individuals to investigate similarities and differences in network structures of ICD-11 PGD criteria. In addition, network structures were investigated for an expanded supplementary questionnaire of culturally-bound grief symptoms hypothesized to be of relevance in each cultural context. RESULTS: Results suggested both similarities and differences in network structures between the two samples. Across cultural groups, intense feelings of sorrow and inability to experience joy or satisfaction since the death emerged as most central symptoms. Compared to the standard PGD network, the expanded network showed a better average predictability for Chinese participants, but no improvement for the German-speaking context. Unhealthy behavior change was the most central symptom for Chinese bereaved when additional grief symptoms were included. CONCLUSIONS: Results of the present study suggest there are culturally-bound symptoms of grief which are not included in the current ICD-11 PGD criteria. These findings provide areas of special clinical attention concerning screening and treatment and present a first step towards a more cultural-sensitive understanding of grief. CLINICAL TRIALS: NCT03568955.

Development of the international prolonged grief disorder scale for the ICD-11: Measurement of core symptoms and culture items adapted for chinese and german-speaking samples.

BACKGROUND: Prolonged grief disorder (PGD) is a new mental health disorder included in the WHO ICD-11 however, the operationalization of the guidelines still needs to be empirically validated, particularly in different cultural contexts. Here we provide a preliminary validation study of the new International Prolonged Grief Disorder Scale (IPGDS) that serves to be the first self-report questionnaire directly based on the ICD-11 PGD and contains culturally adapted items. METHODS: In addition to core symptom items new culturally specific items were developed in two phases. Phase 1: key informant interviews with 10 German-speaking and 14 Chinese experts in grief and mental health, followed by a focus group with four bereaved German-speaking participants. Phase 2: 214 German-speaking and 325 Chinese bereaved participants completed self-report questionnaires. RESULTS: Phase 1 resulted in 19 potential culturally relevant items (e.g. feeling stuck in grief). Phase 2 exploratory factor analysis confirmed the one-dimensional nature of the IPGDS, additionally the 32-item scale revealed two factors (core grief and culturally specific symptoms). Psychometric analysis revealed strong internal consistency, concurrent validity and criterion validity. LIMITATIONS: The German-speaking and Chinese samples significantly differed in terms of several demographic variables including age, gender and type of loss. CONCLUSIONS: This preliminary validity study confirms that the IPGDS is a valid and reliable measure of the new ICD-11 PGD guidelines. This is the first scale of disordered grief to contain both core items and culturally specific supplementary items and aims to improve the clinical utility of the ICD-11 narrative approach.

Prolonged Grief Disorder and Positive Affect Improved by Chinese Brush Painting Group in Bereaved Parents: A Pilot Study.

Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.