Haynaldia villosa, a wild grass species with a proven potential for wheat improvement, confers resistance to multiple diseases. So, genome-wide identification of the NLR gene family in Haynaldia villosa by SMRT-RenSeq can facilitate disease resistance genes exploration.Nucleotide-binding and leucine-rich repeat (NLR) genes have attracted wide attention due to their crucial role in protecting plants from pathogens. SMRT-RenSeq, combining PacBio sequencing after resistance gene enrichment sequencing (RenSeq), is a powerful method for selectively capturing and sequencing full-length NLRs. NLR complement of H. villosa. In total, 1320 NLRs were annotated in 1169 contigs, including 772 complete NLRs. All the complete NLRs were phylogenetically analyzed and 11 main clades with special characteristics were derived. NLRs could be captured with high efficiency when aligned with cloned R genes, and cluster expansion in some specific gene loci was observed. The physical location of NLRs to individual chromosomes in H. villosa showed a perfect homoeologous relationship with group 1, 2, 3, 5 and 6 of other Triticeae species, however, NLRs physically located on 4VL were largely in silico predicted to be located on the homoeologous group 7. Fifteen types of integrated domains (IDs) were integrated in 52 NLRs, and Kelch and B3 NLR-IDs were found to have expanded in H. villosa, while DUF948, NAM-associated and PRT_C were detected as unique integrated domains implying the new emergence of NLR-IDs after H. villosa diverged from other species.In this study, SMRT-RenSeq was performed to identify the genome-wide NLR genes from wild species using the baits of the evolutionary related species with reference sequences. The availability of the NLRs from H. villosa provide a valuable library for R gene mining and transfer of disease resistance into wheat.SMRT-RenSeq is a powerful tool to identify The online version contains supplementary material available at 10.1186/s12864-022-08334-w. Plants have evolved comprehensive mechanisms to protect themselves from attack by pests and pathogens . The firR genes) defined by genetics have been cloned from a wide range of plant species [NLR repertoires in plants. Typically, several hundred NLRs are found in a plant genome. For example, 149 NLRs were identified in Arabidopsis [Vitis vinifera, 330 in Populus trichocarpa [Glycine max [Manihot esculenta [NLR complements have also been studied in five species of Brassicaceae [Gossypium [Leguminosae [Solanaceae [Sorghum bicolor, Zea mays, Brachypodium distachion, cultivated and wild Oryza species, and several Triticeae species [NLRs were identified, the largest number reported thus far in a plant species [Carica papaya  and 54b genome ;). Howevnd apple , 73.Triticeae genomes, including more efficient and complete characterization of their NLR complements. The NLR contents have been identified in T. urartu, Ae. tauschii and T. aestivum by different researchers [R gene enrichment and sequencing (RenSeq) method provides a powerful and attractive tool for the identification of NLRs from plants without finished reference genome assemblies, in particular those plants with large genomes and higher ploidy levels, for example hexaploid wheat and octaploid strawberry [Solanum tuberosum, and it indicated that ~ 80% sequence identity between NLR genes and the corresponding oligonucleotide baits was sufficient for enrichment. This pioneering use of RenSeq increased the number of annotated NLRs in potato from 438 to 772, and facilitated the genetic mapping of NLRs associated with disease resistance to poorly or previously unannotated regions of the genome [Sr22 and Sr45 from hexaploid wheat [Aegilops tauschii), AgRenSeq, facilitated the rapid identification four stem rust resistance genes [Sr22 and Sr33 resulted in two and three contigs, respectively, with missing gaps corresponding largely to the introns. RenSeq combined with long read sequencing, such as PacBio single-molecule real-time (SMRT) or Oxford Nanopore Technology, mitigates these limitations by generating more complete assemblies including NLRs with novel integrated domains [Phytophothora infestans resistance gene Rpi-amr3i from the wild potato relative Solanum americanum [Potato Virus Y resistance genes RySto from the wild potato relative Solanum stoloniferum [Pm21 from the wild wheat relative Haynaldia villosa [Arabidopsis thaliana [With the recent rapid advances in bioinformatics and genomics, huge progress has been made in understanding earchers , 69. Howearchers , or a spearchers . The hige genome . MutRenSid wheat . More re domains , 76. SMRoniferum , the pow villosa , and a sthaliana .Haynaldia villosa  is a wild diploid species of wheat, which has been introduced into hexaploid bread wheat by the development of individual chromosome arm translocation lines between H. villosa and wheat. We previously reported the introgression from H. villosa into wheat of the powdery mildew resistance genes Pm21, Pm55 and Pm62, the yellow virus resistance gene Wss1 and the cereal cyst nematode resistance gene CreV [H. villosa chromatin in wheat have also been reported [Pm21 has been widely used in wheat breeding and more than 40 new varieties have been released and cultivated in regions of China where powdery mildew is prevalent. Pm55 and Wss1 have also been used in breeding programs and new wheat lines are currently under evaluation. Cloning of these resistance genes will accelerate their use by genetic engineering to reduce linkage drag. However, the lack of a reference genome and a high level of outcrossing of H. villosa makes resistance gene cloning in this species challenging.Two sequential polyploidization events followed by domestication and intensive breeding have narrowed the genetic diversity in cultivated wheat , 90. Thiene CreV , 83–85. reported , 52, 59.H. villosa accession 91C43. Then, NLR-Parser [https://github.com/steuernb/NLR-Annotator). The improved software differs from NLR-Parser in that it can distinguish the border between different NLRs located in long contigs [H. villosa, followed by determination of the NLR classes, assignment of NLRs to chromosomes, exploration of NLRs orthologous to cloned R genes, identification of NLR-IDs and comparison of NLRs among different Triticeae species. Our study provides a valuable resource to support R gene cloning in H. villosa and in H. villosa-wheat introgression lines.Previously, we used SMRT-RenSeq to de novo assemble the NLRs of the inbred R-Parser  was usedR-Parser . In 2018 contigs . Since m contigs , we hypoPreviously, 406 Mb of SMRT-RenSeq data consisting of 107,153 reads with an average length of 4.5 kb were generated and de novo assembled with Geneious v9.1.4 Fig. S. The datAe. tauschii using BLASTx. Then, the predicted H. villosa NLR protein sequences were obtained using FGENESH+ based on the homologous proteins. The 776 complete NLR protein candidates were analyzed by Plant_rgene to search for coiled-coil (CC), NB-ARC and integrated domains, then re-analyzed by InterProScan to search for the conserved LRR domains deposited in the SUPERFAMILY database. The results indicated that 772 members carried an NB-ARC, so these 772 candidates were considered to be bona fide NLRs. Then the 772 NLR proteins were further divided into five subclasses based on sub-domain analysis; 618 NLRs were typed as CC-NB-LRR (CNL), 98 as NB-LRR (NL), three as CC-NB (CN), one as NB-ARC (N) and 52 as NLRs with integrated domains (NLR-ID) , followed by the V genome with 772 NLRs  and B. distachyon (350 NLRs), suggesting that Triticeae species have experienced NLR expansion more rapidly after diverging from O. sativa and B. distachyon. An NLR expansion in the A and D genome was also observed after polyploidization of wheat . The conserved motifs from each complete NLR were displayed in the phylogenetic tree to track the evolutionary characteristics of each clade; 11 main clades were thus derived and displayed in different colors. The structure and characteristics of each clade was analyzed according to the motif classification by Jupe [All 772 NLRs of  by Jupe . Clade A by Jupe . In this by Jupe . AnotherH. villosa with PacBio SMRT chemistry. To detect expressed NLRs and to verify the predicted exon/intron boundaries, the 772 NLRs were searched against NLRs annotated in the transcriptome database. This revealed 91 NLRs with a transcript with more than > 95% identity and a query coverage > 90%. Sequence alignment between the transcript and the genomic DNA of these 91 NLRs indicated that the splicing pattern of 85 of the NLRs perfectly matched our predictions. The remaining 6 expressed NLRs, whose splicing patterns didn’t match with the predictions, were used to test whether specific splicing patterns happened in H. villosa by comparing their splicing patterns with those of the corresponding orthologous NLRs. The comparisons indicated that there were no specific splicing patterns happened in 3 NLRs, including Hv_Contig_1470_nlr_1, Hv_Contig_696_nlr_1 and Hv_Contig_1466_nlr_1, while the coding lengths were different between the predicted sequences and the expressed sequences. For Hv_Contig_249_nlr_2, its orthologous NLRs in wheat barley and Ae. tauschii contained A and B types of splicing patterns, and the previously predicted CDS was corresponding to the A type, while the expressed CDS was corresponding to the B type. So, there was no specific splicing pattern in Hv_Contig_249_nlr_2. However, the specific splicing patterns happened in Hv_Contig_670_nlr_1 and Hv_Contig_61_nlr_1. Knowledge of NLR expression can provide additional powerful support for R gene cloning.We sequenced a full-length transcriptome of H. villosa displays good chromosome collinearity with barley, Ae. tauchii, Triticum urartu and wheat. Therefore the nucleotide sequences of the 772 complete NLRs were used as a query for BLASTn analysis against the genome databases of these species for in silico prediction of chromosomal location. This procedure assigned all 772 complete NLRs to homoelogous chromosomes; 139 NLRs to group 1, 85 to group 2, 164 to group 3, 15 to group 4, 60 to group 5, 101 to group 6, and 208 to group 7 -markers based on single copy genes [ villosa , to physpy genes . The higH. villosa and other Triticum species  NLRs could be located to specific chromosome arms Fig. ; Table 2of wheat . Therefoof wheat , suggestMla genes were added manually. To test the efficiency of enrichment, the orthologous H. villosa Mla genes were obtained from our H. villosa NLR assembly. In total, 18 NLRs in H. villosa were predicted to be orthologous to Mla genes because they showed the highest homology to NLRs at the barley Mla locus at 30.2 Mb on chromosome 1H , and those proteins with IDs were then classified to be NLR-IDs . Among tAs shown by phylogenetic analysis based on all the NLRs in Fig. H. villosa was also conducted as shown in Fig. https://itol.embl.de/shared/2018201031). Most of the NLR-IDs with the same IDs could be phylogenetically clustered, especially those NLR-IDs containing DDE, B3 and Kelch clustered into large groups, respectively. The tightly clustered NLR-IDs with similar domain compositions in the tree were usually in silico located on the same chromosomes, indicating that these members likely expanded by tandem duplication after the NLR fused with the ID. There are exceptions, for example, NLR-IDs with Pkinase were clustered into different groups indicating independent cases of fusion. The direct evidence is that the tightly grouped NLR-IDs, Hv-contig-705, Hv-contig-869 and Hv-contig-1233, contained a Pkinase integrated into the CC-terminal, while Hv-contig-316 and Hv-contig-317 contained a Pkinase integrated into the LRR-terminal .The NLR-IDs were extracted from another six es Table . The numva Table . Among tNLR-IDs with physically tightly linked NLRs often form paired protein complexes. In this study, we found that nine NLR-IDs were located tandemly with another NLRs in the same contig, and in two contigs, namely Hv_Contig_48 and Hv_Contig_1157, NLR-IDs and its linked NLRs were arranged in a head-to-head pattern.We found that the homeologues of paired NLRs, such as RPS4/RRS1, Rpg5/RGA1, and RGA4/RGA5, usually displayed a pattern of head-to-head arrangement. Solanum tuberosum, a wild potato, indicated that ~ 80% sequence identity is enough for capturing NLR genes using oligonucleotide baits [H. villosa and barley and found a high degree of identity between these two closely related species [H. villosa. The enrichment efficiency analysis using the sequences of cloned R genes indicated that the homologous genes in H. villosa were successfully enriched. Therefore, the bait library designed based on a species with ample genomic resources could be used to isolate NLRs from an evolutionary closely related species.NLRs display high domain-conservation even across species. Previously, random isolation of NLRs from whole genomes was achieved using homology-based PCR in wide variety of species . In recede baits . Previou species . We therBefore annotation of the NLRs from the assembled contigs, the redundant contigs were removed using the cutoff value of 90 and 95%. Actually, the same 53 contigs were removed by both parameters. To avoid the situation that a recent duplication or residual heterozygosity perhaps could be ruled out as a source for some of the removed contigs, these 53 removed contigs were reanalyzed Table S. It was H. villosa using different reference assemblies and different pipelines, such as 463, 570, 563 or 558 NLRs in T. urartu, 842 or 738 NLRs in A. tauschii, 420, 336 or 462 NLRs in H. vulgare, 422 or 341 NLRs in S. bicolor, and 470 or 438 in S. italica [B. distachyon, 347 from O. sativa, 397 from H. vulgare, 530 from T. urartu, 572 from A. tauschii and 772 from H. villosa by the same pipeline. H. villosa contained relatively more NLRs than what has been reported in most diploid genomes. The study in Solanum tuberosum indicated that more NLRs were revealed by RenSeq than those predicted by the then available annotation software and genome reference suggesting that RenSeq facilitates the recovery of NLRs from the poorly or previously unannotated regions of the genome [H. villosa, might be accounted for by the NLR expansion that occurred at some loci.NLR complements have been identified in several diploid species related to  italica , 63. In Some of the in silico located NLRs were selected for physical location to specific chromosome arms, and good congruency was found for chromosomes 1 V, 2 V, 3 V, 5 V and 6 V suggesting these NLRs could be used as candidates for mining for R genes genetically assigned to these chromosomes. However, some of the NLRs, which were in silico located on 7 VS were physically located on 4VL. Therefore, NLRs in silico located on 7 VS could be used as candidates for mining for R genes which map to 4VL. Chromosomal rearrangements are commonly found in wheat and its wild relatives , and ourAvrPto injected into the host cell by the bacterial pathogen Pseudomonas syringae. The partner of Pto, Prf, an NLR receptor, senses the modification of Pto by AvrPto to trigger immune signaling [A. thaliana, carries a C-terminal WRKY domain which mimics the WRKY protein targeted by the PopP2 effector. Other examples include the NLRs RGA5 and Pik-1 in rice, which carry a heavy metal associated (HMA) domain targeted by AVR-Pia and AVR-Pik, respectively [In host-pathogen interactions, a decoy is used to describe those molecules which mimic a component manipulated during infection . The decignaling . Sometimectively , 53, 82.ectively .H. villosa. While the NLR-ID ratio was smaller in H. villosa compared to T. urartu and Ae. tauschii, the total number of NLR-IDs in H. villosa was the largest among all the seven species studied , among which Kelch and B3-type NLR-IDs experienced expansion, and three type of IDs were unique in H. villosa. This study gave an example to successfully capture the genome-wide NLRs in wild species using the baits from another species in Triticeae. The availability of the NLRs from H. villosa provides a valuable library for mining and transferring of disease resistance into wheat.In this study, the genome-wide Haynaldia villosa , with long hairs on the keel of the glume and apex of the lemma, is an annual diploid species which belonging to Triticinae of Triticeae in Gramineae. It is a vigorous ruderal wild plant growing on the harsh, moisture-stressed soils in the northeastern part of the Mediterranean region and Caucasus area [H. villosa accession 91C43 was obtained from Cambridge University, UK and propagated by artificial bagging and self-pollination for 6–7 successive generations to obtain an inbred line. Tissue from the 91C43 inbred line was used for DNA extraction. This accession was also used as the donor to develop 14 wheat-H.villosa translocation lines through wide-crosses and chromosome engineering, each involving one of the 14 chromosome arms of H. villosa, respectively [sus area . This spsus area . The H. ectively . This seH. villosa accession 91C43. The design of this NLR bait library has been previously described [Mla, Mlo, Rpg1, etc., were manually added. Repetitive and redundent sequences were removed to yield the final set of 99,421,100-mer RNA baits.The barley NLR bait library TSLMMHV1  was usedescribed , a tool escribed , was useescribed  . SMRT library preparation and NLR capture followed the procedure described by Witek et al. [Genomic DNA for SMRT library preparation was extracted from seedlings of k et al. . The enrwww.geneious.com) with defaults of 1% mismatch, 1% gap (no more than 3 bp) and minimum read length overlap greater than 100 nt with at least 98% identity. Only contigs assembled from at least five sequences and having a minimum coverage of two were considered for further analysis. A total of 1509 contigs fulfilling these criteria were obtained.The raw reads were screened by the SMRT Portal software with parameter settings > 3 full passes and > 90% accuracy to generate the inserted sequence ROI. The long ROI were analyzed and assembled using genetic R8 software (https://github.com/steuernb/NLR-Annotator).To obtain non-redundant NLR-containing contigs, the raw assembled contigs were analysed by the global alignment program Cd-hit (version 4.8.1)  to constftp://ftp.ensemblgenomes.org/pub/plants/release-46/fasta/hordeum_vulgare), Aegilops tauchii (ftp://ftp.ensemblgenomes.org/pub/plants/release-46/fasta/aegilops_tauschii), and common wheat (ftp://ftp.ensemblgenomes.org/pub/plants/release-46/fasta/triticum_aestivum) to find the orthologous genes from the three species. In each species, the proteins with the highest identity and longest coverage were selected as the putative orthologous proteins. The protein sequence from the species with the highest identity and longest coverage compared with H. villosa was used as the reference to predict the coding sequence of the corresponding H. villosa NLR using FGENESH+ (http://www.softberry.com/).The predicted NLR loci were extended backwards by 3000 bp from the left border and forwards by 3000 bp from the right border, respectively. The extended sequences were cut out for BLASTx against the database of barley  and the longest proteins corresponding to the longest transcripts of genes with alternative splicing were used for annotation analysis (Table Shttps://github.com/krasileva/plant_rgenes) and InterProScan (interproscan-version 5.30–69.0) were used to analyze the NLRs annotated as being complete. Plant_rgene program is a pipeline for analyzing the domain composition of putative NLRs, however, sometimes it cannot accurately output LRR domains. The InterProScan software [H. villosa NLRs and the proteomes from the six species listed above, were analyzed by the Plant_rgene software  to search for conserved domains . Then the same set of proteins were analyzed again by InterProScan to search for the conserved LRR domains deposited in the SUPERFAMILY database. The conserved domains output from both programs were integrated. Only those proteins containing an NB-ARC domain were designated as NLRs. If any atypical domain was additionally predicted in the NLRs, these domains were considered to be the integrated-decoys (IDs), and those NLRs containing ID(s) were then designated as NLR-IDs. The diagrams of all the 52 NLR-IDs were displayed by IBS (Version 1.0.3) [The protein sequences of six species, including s Table S. Plant_rn 1.0.3) .H. villosa and all the 315 NLR-IDs from seven Triticeae species were also constructed by the same method using the same parameters.For construction of the phylogenetic tree of all the 772 complete NLRs, the conserved NB-ARC domain was extracted from each NLR and a phylogenetic tree was constructed using MEGA7 by Neighbor-Joining method with 1000 bootstrap replicates . The treR genes, including Mla1 (AY009939.1), Sr50 (KT725812.1), Sr35 (KC573058.1), Pm3b (AY325736.1), RCR1 (KU161103.1), Lr1 (EF439840.1) and Yr7 (MN273771.1) were downloaded from the NCBI database, then the nucleotide sequences were used to perform a sequence alignment with the assembled SMRT RenSeq contigs. The sequences showing > 80% identity and > 60% coverage with the cloned R genes were screened from the annotated NLRs. Then the screened NLRs in silico located to the same homoeologous chromosome loci as the corresponding queries were considered as their putative orthologues respectively.The cloned ftp://ftp.ensemblgenomes.org/pub/plants/release-46/fasta/hordeum_vulgare), Aegilops tauchii (ftp://ftp.ensemblgenomes.org/pub/plants/release-46/fasta/aegilops_tauschii), Triticum urartu (ftp://ftp.ensemblgenomes.org/pub/plants/release-46/fasta/triticum_urartu) and common wheat (ftp://ftp.ensemblgenomes.org/pub/plants/release-46/fasta/triticum_aestivum) to locate NLRs to chromosomes. Then, a subset of the NLRs were selected to determine the physical location by PCR analysis using 14 wheat-H. villosa translocation lines each involving one of the 14 chromosome arms of H. villosa. The PCR primers were designed according to specific deletions or insertions in the H. villosa NLRs when compared to the presumed orthologous genes in Chinese Spring . The mixed tissue sample included seedling leaves, seedling stems, seedling roots, immature spikes, seedling leaves inoculated with Bgt for 6 and 24 h, seedling leaves and roots treated with 200 mM NaCl for 3 days, and seedling leaves and roots treated with 16% PEG4000 for 3 days. The PacBio trasncriptome sequences were screened by NLR-Annotator. Then the annotated NLRs of SMRT RenSeq were used to search against the annotated transcribed NLRs. When an NLR from SMRT RenSeq could find a corresponding transcribed NLR with an identity higher than 95% and coverage longer than 90%, then the enriched NLR was considered to be expressed. The sequences of all the expressed NLRs were compared with their genomic counterparts one by one to analyze the accuracy of the protein prediction based on the genomic sequence.PacBio sequencing of the full-length transcriptome extracted from ten mixed tissues of Additional file 1.Additional file 2.Additional file 3.Additional file 4.Additional file 5.Additional file 6.Additional file 7.Additional file 8.


Infectious complications after endobronchial ultrasound‐guided transbronchial needle aspiration (EBUS‐TBNA) are rare but serious. Here, we report a very rare case of delayed onset of mediastinitis with tracheomediastinal fistula after EBUS‐TBNA. Surgical debridement was performed, antibiotics were administered, and the postoperative course of the patient was good. Careful monitoring is needed to prevent the possible development of infectious complications after EBUS‐TBNA. We report a rare case of delayed onset of mediastinitis with tracheomediastinal fistula after endobronchial ultrasound‐guided transbronchial needle aspiration (EBUS‐TBNA). To our knowledge, tracheomediastinal fistula after EBUS‐TBNA is rarely reported. Surgical debridement was performed, antibiotics were administered, and the postoperative course of the patient was good. Endobronchial ultrasound‐guided transbronchial needle aspiration (EBUS‐TBNA) is a minimally invasive technique for the staging of lung cancer and diagnosing mediastinal lymphadenopathy.A 69‐year‐old non‐smoking woman visited our clinic due to a solitary pulmonary nodule. She had a history of type 2 diabetes mellitus and hypertension. Chest computed tomography (CT) showed a tumor in the right lower lobe with enlargement of the right lower paratracheal lymph nodes (LNs) Figure . CT‐guid3) and C‐reactive protein level . A chest radiograph revealed a newly‐developed right paratracheal opacity. Chest CT revealed enlarged mediastinal LNs and pericardial effusion suggestive of mediastinitis  of mediastinitis with coexisting tracheomediastinal fistula. With the increasing number of EBUS‐TBNA, careful monitoring is needed to prevent possible infectious complications.This study was supported by the Yeungnam University Research Fund for 2020.The authors declare there are no conflicts of interest.


Islamic Trauma Healing, targeting trauma-related psychopathology and community reconciliation for trauma survivors (N = 26) in Somaliland, Somalia. Leaders were trained in a brief 2-day training, with supervision provided remotely via WhatsApp. This six-session intervention combines empirically-supported trauma-focused psychotherapy and Islamic principles, focusing on wisdom from the lives of the Prophets and turning to Allah in dua about trauma. There were large, clinically meaningful effects for PTSD (g = 1.91), depression (g = 2.00), somatic symptoms (g = 2.73), and well-being (g = 1.77). Qualitative data from group members highlighted how well the program was aligned with their Islamic faith, built community, and need to expand the program. These results highlight the feasibility of this non-expert, easily up-scalable mental health approach in war-torn Muslim regions and refugee communities. This program has the potential to provide a low-cost, self-sustaining, Islam-based intervention addressing the psychological wounds of war consistent with the IOM's call to develop novel approaches to address unmet clinical needs.Radical new paradigms are needed to equip non-professionals and leverage community faith-based infrastructure to address the individual and communal wounds of war- and conflict-related trauma. Muslims in war-torn regions like Somalia experience high rates of trauma and posttraumatic stress; yet, lack of providers, potential stigma, and lack of integration with one's faith are substantial barriers to care. In this pre-post feasibility clinical trial (NCT03761732), mosque leaders implemented a brief, group- and mosque-based intervention, ClinicalTrials.govIdentifier: NCT03761732. Brock Chisholm, the first Director-General of the World Health Organization, famously stated this more than 60 years ago . DespiteTrauma-related mental health needs in the Islamic world are staggering. Of the six civil wars in the world, five are in Islamic nations, leaving over 68.5 million displaced peoples . MuslimsEffective PTSD interventions exist. Cognitive- and exposure-based psychotherapies have the strongest evidence-base across diverse samples , includiThe development and implementation of evidence-based paradigms aligned with the Qur'an, communal culture, and broadly applicable for war-torn and refugee Muslim communities is critically important. Further, the advent of smartphone and internet infrastructure in LMICs enables new models of “reach” between intervention experts and communities. Islamic Trauma Healing is a brief, six-session group- and mosque-based, lay-led intervention that targets trauma-related psychopathology and community reconciliation. Through an iterative development process, the following factors were identified as crucial for uptake: centrality of Islam in life, reducing mental illness stigma, promoting reconciliation and social connectedness, and empowering the community to facilitate trauma healing . A PTSD-How do you think Yusuf [Joseph] would feel when his brothers betrayed him? Where was Allah in the midst of Yusuf's trials? What did Yusuf do with his betrayal (even when it was done by his family)?”), incorporating cognitive restructuring as a therapeutic technique. Group members spend individual time turning to Allah in dua, focused on approaching rather than avoiding trauma memories. This informal prayer incorporates the exposure-based therapeutic technique of imaginal exposure, where the trauma memory is revisited in detail . This illustrates a fundamental shift and new model for in-depth integration of Islam and evidence-based PTSD treatment, bridging their collective wisdom to provide trauma-related mental health treatment.The lay-led group structure of the program seeks to promote community building, acknowledge trauma's impact in the community, and build infrastructure for wider uptake. The program is not referred to as “therapy” or “treatment” for “mental illness.” Each session includes time for community building rituals , spiritual preparation using a brief supplication written by the local Imam, prophet narratives and group discussion, individual time spent turning to Allah in dua  about trauma memories, and a brief closing supplication . In eachn detail . Clear iTo reduce stigma, Islamic Trauma Healing utilizes local partners embedded within the strong traditional, communal mosque infrastructure. In accordance with cultural norms, men's and women's groups are separate with same-gender leaders. To be sustainable easily scalable, lay leaders do not require extensive expertise or training. The program follows a train-the-trainer model, led by current group leaders, empowering lay leaders to facilitate healing in their communities. Indeed, sustainable interventions must have the capacity to be delivered in the at-risk population utilizing pre-existing resources . Indeed,To test Islamic Trauma Healing's feasibility and preliminary effectiveness, we conducted a pre-post clinical trial in Somalia. We hypothesized that the intervention would reduce PTSD, depressive, and somatic symptoms while enhancing overall well-being.n = 12) and women (n = 14) aged 18–65 participated in the study. Inclusion criteria were exposure to at least one DSM-5 Criterion A trauma , ranging from 18 to 47 years old. The majority reported being single (69.2%), with 19.2% being married, and 11.5% reporting that there were divorced or separated. Approximately half of the sample had a college education (53.8%). There was heterogeneity in terms of self-identified DSM-5 primary target trauma exposure: military combat or living in a war zone (30.8%); natural disaster (19.2%); physical assault (15.4%); sexual assault in adult or childhood (11.5%); accident (11.5%); or other trauma (11.5%).Twenty-eight were recruited, signed consents, and participated in the groups. Two men did not report any re-experiencing or avoidance symptoms and thus were excluded from analysis, resulting in a final sample size of The program contained six sessions. This duration is in line with evidence that brief protocols can substantially reduce PTSD and other trauma-related symptoms . Key comProphet narratives were brief, thematically focused synopses that include Qur'an verses. Group questions mirroring the theme for the session were discussed to facilitate cognitive restructuring. Prophet narrative content and questions shifted across sessions from the presence and purpose of suffering to healing and reconciliation for oneself, others, and the larger community. In each session, narratives of prophets who have undergone trauma  presented Islamic principles, verses from the Qur'an, and facilitated cognitive shifts. Below is a partial example of prophet narrative content.Truly! We found him patient. How excellent a slave! Verily, he was ever oft returning in repentance to Us!” (Qur'an 38:44). Prophet Ayyub was a very rich man with many children. He had a lot of cattle, sheep, and lands of great farms. Suddenly, Ayyub lost all of his children and wealth. Not only that, he was also afflicted with a strange disease with painful sores from head to toe. Only his tongue and heart were saved from this affliction. This lasted for a long time. His people and relatives deserted him…Allah said about Ayyub, “, incorporating elements of cognitive restructuring as a therapeutic technique.Questions for group discussion then promote shifting of thinking about trauma From sessions two through six, participants were asked to spend time in individual dua turning to Allah about their trauma. Of note, the term “prayer” is used as an illustration, having varied meanings within Islamic practice, with the manual using the term “turning to Allah in dua.” In the pilot trial , the conThis individual time turning to Allah in dua focused on approaching rather than avoiding trauma memories. This informal prayer incorporated the exposure-based therapeutic technique of imaginal exposure, where the trauma memory is revisited in detail, with content shifting from recounting the most severe traumatic event, to focusing on personal thoughts and feelings, to the hardest parts of the memory, to ultimately thanking and praising Allah for the lessons learned because of the trauma in the later sessions. Below is a partial example of the rationale for turning to Allah in dua about the trauma.Allah is all knowing. He already knows what has happened to you, knows your suffering, and knows your heart. Nothing you can say to Him will be shocking or surprising.Yet sometimes we try to hide these things from Him or even from ourselves. We stuff painful memories away and don't let ourselves think about them or feel them. If we think of these memories as being “off-limits” or too difficult or hard to think about, we cannot fully experience the healing Allah intends for us.Why might some people be afraid to turn to Allah about what happened to them? What might be some things they could learn about themselves or about Allah while spending time with Him?”). Group members were encouraged to talk in the group about their experience of the revisiting of the trauma memory but not to directly share the content of the traumatic experiences with the group, with the intention to promote cognitive restructuring of negative trauma-related beliefs and foster social connectedness among group members.Clear “how to” instructions were given for the dua at each session, and individuals reconvened as a group to discuss how the time turning to Allah went and lessons learned , where they received the manual and an overview of the program, reviewed and practiced components of group sessions, and identified and problem-solved potential issues. This in-person training was led by the clinical team . Group leaders also received standardized training on confidentiality and common ethical considerations in facilitating a group. The training was provided in English by the research team and translated to Somali by leaders fluent in both English and Somali.In this session, participants turned to Allah in dua about the trauma for the first time. How did it go?”) which structured the supervision and allowed for feedback and trouble shooting.During provision of the groups, lay leader supervision was conducted weekly via WhatsApp, a free cross-platform instant messaging system. After each group, group leaders met with the investigational team via WhatsApp for a discussion of the session, with simultaneous translation for leaders whose English was more limited. In advance, key issues were identified for each session and framed as questions  and headphones. Mental health functioning following trauma assessed in this study was dimensional and multifaceted, examining not only PTSD, but also somatic symptoms, depression, and functional well-being.The primary outcome measure was self-reported PTSD severity as measured by the PTSD Scale Self-Report for DSM-5 (PDS-5) . AdditioWhat do you think about the Islamic Trauma Healing program?; (2) What did you most like about the program?; (3) Where does the program need improvement?; (4) What would keep men or women from being involved in the program? What are barriers to participating?; and (5) What lessons have you learned from the program? All interviews were audio recorded and translated to English by a research team member in Somaliland. Two independent raters, not involved in study procedures or with the qualitative analyses conducted as part of the pilot trial in the United States  d States , coded pMale and female volunteer group leaders were selected by the last author based on being a community leader, someone respected or in leadership within their Islamic center, with a “heart for healing and reconciliation”  in the Somali community, and willingness to later train additional group leaders. Once trained, the same leaders ran the groups from the first to last session. All lay leaders signed contracts to be individual investigators affiliated with the respective university, and all procedures were approved by the respective Institutional Review Board. Permission for the study was obtained from the Somaliland Ministry of National Planning and National Development and the Somaliland Ministry of Endowment and Religion Affairs.n = 7, each) were conducted in total, with one men's and one women's group run in each city led by two group leaders of matching gender. Participants completed and signed informed consent forms in Somali. Questionnaires were completed at the beginning and end of the six sessions. Groups met weekly for 2 h, with length varying depending on breaks for the call to prayer. Data collection occurred from October 15, 2018, to February 6, 2019.Groups were at two mosques in Borama and Hargeisa, Somaliland, Somalia. Four groups (t(p < 0.001), depression (t(p < 0.001), somatic symptoms (t(p < 0.001), and well-being (t(p < 0.001). There was no participant dropout or adverse events. At pre-, 80.8% met symptom criteria for a DSM-5 PTSD diagnosis, and at post-intervention 15.4% met criteria.Means, standard deviations, and effects sizes for the main outcome measures using Hedges' g, corrected for use with small samples, are presented in t = 9.30, ession , arguing that the program conferred the strongest benefit for those with more severe symptoms; particularly important for a brief, lay-led intervention. Post-hoc analyses showing lack of age and gender effects on post-intervention PTSD severity are available in Notably, higher pre-treatment severity was associated with larger change from pre- to post-intervention across outcomes . Regarding specific questions, responses again were in the excellent range: “How well do you think the Islamic Trauma Healing program has helped with your trauma-related healing?” ; “How well do you think the Islamic Trauma Healing program will help with community reconciliation?” ; “To what extent did the Islamic Trauma Healing program match with your religious beliefs and cultural practices?” ; “If a friend wanted trauma-related healing and reconciliation, would you recommend this program to him/her?” ; and “Overall, how satisfied are you with the Islamic Trauma Healing program?” .Overall, participants reported being highly satisfied with the program . These made me happy.” Participants also expressed general appreciation for how Islamic Trauma Healing reduced their distress, as one member commented “I think this program is the best to heal the hurt people.”The third central theme was Increasing Accessibility to Help the Community; participants expressed strong desires to grow the program and further disseminate it to the broader Somali community. One participant observed, “It needs more awareness raising and establishing centers for mobilizations.” Another noted, “It is good work because most of our community [has] trauma and we can help them from this program.” In general, the qualitative feedback reinforced the match between Islamic Trauma Healing and the participants' faith, the perceived helpfulness of the program, and the desire to grow the program to help others.The need for community based, culturally resonant, easily-upscalable, and sustainable models of mental health delivery is high, especially in war-torn, low resource regions such as Somalia. Innovative new models are needed as the reach of our current evidence-based PTSD treatment psychotherapies simply will not permeate areas where they are most needed in the war-torn regions of the Muslim world. Mental health interventions must effectively engage individually and collectively culturally relevant meaning-making mechanisms e.g., . For theAny mental health intervention that is going to have reach, particularly where there is little or no infrastructure, must be easily scalable. Islamic Trauma Healing content was carefully vetted to focus on central tenants of Islam, reducing any future sectarian issues and allowing for easy adaptation for other Muslim groups. By task shifting, where existing group leaders train and supervise new group leaders, expert involvement is reduced, costs are lowered, local knowledge is increased, and the program can become self-sustaining . LeadersAny intervention targeting the mental wounds of war also needs to address reconciliation and social community rebuilding, as evidenced by clan violence in Somalia . Lack ofThis small open trial of Islamic Trauma Healing in Somalia provides additional preliminary evidence, with effect sizes consistent with a previous U.S.-based refugee pilot trial , for a rThe raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving human participants were reviewed and approved by University of Washington. The patients/participants provided their written informed consent to participate in this study.LZ, JB, NF, DA, and ME designed the study. DA and ME were responsible for study logistics in Somaliland, Somalia, including overseeing coordination of lay leaders, and group implementation (ME). LZ, JB, NF, ME, MD, and AK were responsible for training and supervision. ME, MD, AK, and LZ were responsible for data collection and management. LZ, MD, and AK analyzed the data. LZ, JB, NF, AK, and MD contributed to writing the manuscript. All authors contributed to the article and approved the submitted version.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


A major advance in family caregiving has been the development, testing, and community delivery of research-proven, evidence-based support programs for family or friend caregivers of persons living with dementia. This presentation showcases and demos Best Practice Caregiving (BPC), a new online resource with comprehensive profiles for 44 of the top evidence-based dementia caregiving programs that are ready for scaling in communities. For these 44 programs, BPC is a database that presents key research findings with links to all its published articles, comprehensive program descriptions including all implementation features, and survey data on program delivery experiences from 324 healthcare and community organizations that offered the program as a regular part of their service portfolio 2019. BPC enables professionals to make side-by-side comparisons of the 44 programs, with the goal of increasing implementations of these evidence-based programs by healthcare and community service organizations.


Persons living with dementia face a reduction of their life space outside home and disengagement from participation, linked to places visited.This study explored stability and change in perceived participation in places visited outside home and its relationship with occupational gaps among older adults.n = 35) or without (n = 35) dementia were interviewed using the Participation in ACTivities and Places OUTside Home (ACT-OUT) questionnaire and the Occupational Gaps Questionnaire (OGQ). Data analysis used descriptive and inferential statistics.Older adults living with (p < .001) visited than the comparison group and having abandoned more places visited (p < .001) than the comparison group. The number of occupational gaps was significantly different between groups (p < .001).The group of people living with dementia reported significantly fewer places (Participation outside home is not influenced in a uniform and straightforward way for persons living with dementia; the shrinking world effect appears differently in relation to types of places. Outside home participation is an important part of everyday life, as well as a challenge, for community-dwelling older adults living with early-to-moderate-stage dementia. Although an age-related reduction in activities outside home is well documented , there iNotwithstanding, persons living with dementia strive to maintain their preferred patterns of engagement in participation outside home . In ordeIn addition, the decline in participation among persons living with dementia is complex and nuanced: many places show commonalities in participation rather than significant differences between groups of persons living with and without dementia . Yet, toPersons living with dementia and their families report various explanations for reduction in participation. First, they report challenges in finding one’s way and getting to intended places without taking too much time, energy, or worry, and ultimately without getting lost . A decrePersons living with dementia might not want this disengagement and are not satisfied with it . AccordiThis study aims to explore the differences between persons living with dementia and persons without known cognitive impairments in relation to the perception of places visited outside home, maintenance and abandonment of places, and perceived occupational gaps. Research questions were elaborated as follows: (a) Are there differences between persons living with dementia and persons without known cognitive impairments in relation to reported places visited outside home? (b) Are there differences between persons living with dementia and persons without known cognitive impairments in relation to reported maintenance and abandonment of places outside home? (c) Is there a relationship between perceived occupational gaps and reported places outside home visited among persons living with dementia and persons without known cognitive impairments?This observational exploratory survey-based interview study relies on a case-control cross-sectional design , based on = 7); B/places-for-medical-care (n = 5); C/social-cultural-spiritual-places (n = 6); and D/places-for-recreational-and-physical-activities (n = 7). One non-determined place at the end of domain D allows the participants to tell of additional places important for them. Participants were asked three questions for each of the 25 places in Part I: (a) if they visit the place now, (b) if they earlier had visited the place, and (c) if they could see themselves visiting the place in the future. For a place like hairdresser, the interviewers would ask: “Do you go to a hairdresser?” “Did you go to a hairdresser in the past?” “Do you see yourself going to a hairdresser in the future?” Answers are given as yes/no. Part II entails detailed questions with a set of fixed response alternatives about factors potentially influencing participation in places, like activities performed, transportation means, accompanying persons, risk perception, and familiarity. Part III consists of general questions about perceived participation, life satisfaction, and attitudes toward risk-taking and stress factors. In this study, we used data from Part I of the ACT-OUT. An interview using ACT-OUT takes between 40 and 80 minutes to be completed. As of now, there are no psychometric publications for ACT-OUT.The Participation in ACTivities and Places OUTside Home (ACT-OUT) Questionnaire was used to collect data on spaces and/or places and activities in combination that individuals participate in, including changes that have occurred in the past or may occur in the future. We refer to places here, although we are aware that not all items in ACT-OUT would be considered as places by all participants. The ACT-OUT Questionnaire was developed in three languages  through a cross-cultural study and consists of three parts (I−III) . In the The Occupational Gaps Questionnaire (OGQ) was used to collect data on perceived occupational gaps. It was initially developed for people with Acquired Brain Injury (ABI) to measure participation in everyday occupations . The OGQThe Montreal Cognitive Assessment (MoCA)  was usedFinally, a socio-demographic questionnaire was used to describe the sample, covering age, gender, rural/urban location, educational level, type of household, driving, type of retirement pension, and health condition, because these are elements potentially influencing out of home participation.Participant sampling occurred in five French-speaking cantons of Switzerland between December 2015 and May 2017. Participants were required to be able to communicate in French and were excluded if they had any mobility disability that significantly impacted their ability to be mobile in the community, like a wheelchair. All were informed that their participation in the study was voluntary and that they were free to leave if need be.n = 35) were recruited through memory clinics, day hospitals, and the Swiss Alzheimer’s association. Diagnosis of dementia was established by medical professionals from memory clinics in the area covered by the study. For the purposes of optimal recruitment, we did not discriminate between the various types of dementia. The competence of persons living with dementia to provide informed consent is a central ethical consideration in research, as the condition of dementia can impair an individual’s capacity to make decisions (Persons living with dementia (ecisions . Potentiecisions  throughoecisions . It enabecisions . When siecisions .n = 35) were recruited through senior associations and ads in grocery stores. The comparison group was aimed to match the group of persons living with dementia, but not individually paired, regarding age, gender, living areas and settings, and education level; thus, recruitment strategies for the comparison group targeted specific regions, age groups, or living areas, for example, to bring the means of the comparison group closer to the other group on those variables.Participants ), and Fisher’s exact test for the ordinal outcomes , calculated with IBM SPSS, version 25, to calculate the tests. To reflect the geography of Switzerland, the living areas were categorized into rural , peri-urban , and urban   . To catebitants) , adaptedapplicable when the participant reports going there either in the present, past, or future. An applicable place can be currently visited, meaning that the participant goes there in the present; and it can be affected by change, meaning, for example, that the participant does not go there in the present, but has gone in the past or will go in the future. A place is not applicable if the participant reports neither going there in the present, past, or future.According to ACT-OUT, a place is t-tests were used for the comparison of the overall participation between the two groups in applicable, currently visited, and affected by change places (ACT-OUT), and one t-test was used on the total number of occupational gaps (OGQ)  see . Second,mean see . Third, mean see . A line mean see . Fourth,Finally, the relationship was explored between the total number of currently visited places (ACT-OUT) and the total number of gaps (OGQ), among both groups, using Spearman’s rank correlation coefficient (two-tailed) . The cutp < .05.All analyses were undertaken with a significance threshold set at n = 70) were living in the community in their own dwellings. The group of persons living with dementia ranged between 65 and 94 years of age, while the comparison group ranged between 67 and 92 years (g-plwd mean (SD) = 77.66 (8.35), g-comp mean (SD) = 77.86 (7.72)). Majority of them were women (g-plwd = 19 (54%), g-comp = 23 (65%)). Most of the participants had an apprenticeship or a diploma degree , or completed primary or secondary school , while a minority graduated from higher education . Minority of them lived alone  and very few lived in urban settings . Health limitations were reported by half of the participants in both groups. The groups are generally well matched , except for the expected significant difference in the cognitive level, reported through the MoCA score (g-plwd mean (SD) = 17.74 (5.56), g-comp mean (SD) = 26.09 (2.07), p = < .001).The participants (p < .001) between persons living with dementia and persons without known cognitive impairments. In contrast, the total number of applicable places were relatively similar and the difference was non-significant (p = .380), out of the 25 pre-listed types of places. The number of places that were affected by change (past or future) was significantly higher among the group of persons living with dementia (p < .001). The number of occupational gaps reported was also significantly higher (p < .001)  see .p < .001, specifically A1, A4, A6, and A7); C: social, cultural, and spiritual places ; and D: recreational and physical places . In contrast, places in domain B: places for medical care were significantly more visited  by the group of persons living with dementia.More specifically, when looking at the results by places and domains see , the grop < .001).p = .013), and item 6: Doing heavy-duty maintenance of home, garden, car (p = .023).Although there was a significant difference between the groups for the total number of occupational gaps see , only sers = −.37 n = 70, p < .01) were found, which overall indicates that the more places visited, the lower the number of occupational gaps. There was however a difference between the correlation coefficients for the group of persons living with dementia , and the comparison group . So, the overall assumption that the more places visited, the lower perceived occupational gap was only empirically supported for the comparison group, but not for the group of persons living with dementia.Negative relationships between perceived occupational gaps and the total number of currently visited places  and outside home (ACT-OUT) for the group of persons living with dementia. Significant differences between groups could be seen, but they only apply to a limited number of items. While a shrinking of the outside world seems likely , the wayThere are commonalities in places abandoned or retained with a similar group comparison study in Sweden . In bothIn considering the total number of places currently visited as an essential component of participation, there is an implicit assumption. Going to many and various spaces—that could be places for some individuals—would indicate an association between the number of places visited and the quality of perceived participation. It is important to distinguish between what the ACT-OUT is measuring  and how this measure is interpreted; and that not all items can be considered places for all participants. It might not be the quantity or diversity of items/places visited that indicates adequate, sufficient and satisfactory perceived participation for the individual, but rather the meaning given to the places by the occupations performed. It would have been interesting also to investigate whether places visited were experienced as valued, especially in regard to the pattern of abandonment and retention of specific places . PerceptThe chosen design of a cross-sectional study might be understood as a limit, as differences were determined through reported change between past, present, and future in ACT-OUT. Only differences between groups could be identified. Longitudinal designs would be needed in future studies to capture change—rather than differences—between past and present in participation outside home .Out-of-home participation being a complex, contextualized, and multifaceted concept, ACT-OUT only offers partial indicators, through identifying the places visited, and as recalled by participants. That said, it offers an insight into the patterns of spaces and/or places that constitute the outside world of individuals at present, compared to the past, and as envisioned in the future. It is a limitation to ask persons with memory problems to recall going to specific locations, so we supported it via using simple phrasing of questions and flexibility in approach in a face-to-face interview and allowing for any timeframe in the answers given. Also, using places visited as an indicator of perceived participation outside home might lead the reader to an understanding of participation as subjective and opposing it to objective components in a dichotomous vision. Perceived participation, using a transactional perspective , would nThis study suggests that older adults living with dementia report fewer visited out-of-home places than older adults living without dementia, although not in a clear, uniform, and straightforward way. There seems to be more of a shift from participation in places and activities for social, recreational, and commercial activities, toward places for health and medical care among persons living with dementia. However, it may not be only the number of places visited that indicates consequential participation, but there would be a need to also scrutinize occupations performed in those places.Persons living with dementia face a shrinking world with a shift from visiting recreational and cultural places toward more medically oriented places.It is important for occupational therapists to attend to their clients’ occupational gaps and participation in places outside home, in recognition of participation as a fundamental human right for persons living with dementia.Occupational therapists may support participation outside home not only in places that persons living with dementia seem to maintain , but also in places they might have abandoned, for example, nature places (parks and forests).


Unaddressed, this can result in poor long-term bereavement outcomes. This paper describes the development and evaluation of Good Grief M = 16.63) participated in the evaluation. Grief intensity (Texas Revised Inventory of Grief), meaning-making (Grief and Meaning Reconstruction Inventory), trauma coping  and unmet needs (Bereaved Cancer Needs Instrument) measures were administered pre-program and 3-months post-program. Acceptability was measured after each session and at the program’s conclusion. Appropriateness was measured at 3-month follow-up. Thirteen participants were interviewed three months post-program on their perceptions of the program.One hundred and nine Australian AYAs (68% female; age: 12–25 years, Participants reported high program satisfaction, engagement with psychosocial sessions, and enjoyment of recreational activities. Significant improvements were observed in trauma coping abilities and reductions in unmet needs for managing emotions, social support, respite, future planning, and accessing information and support domains. No change was evident in grief intensity or meaning-making as measured quantitatively. Interviews supported these quantitative findings but also identified evidence of personal growth, a component of meaning-making.Good Grief is a highly acceptable and beneficial intervention that addresses the unique needs of AYAs bereaved by familial cancer. The death of a parent or sibling can be a distressing and traumatic event at any life stage. However, during adolescence and young adulthood  – a time characterised by emotional, psychological and physical development and identity formation – such a loss can be particularly stressful and impactful, having short- and long-term effects on wellbeing –7. BereaRegarding cancer bereavement specifically, a systematic review of the child and AYA sibling and offspring literature in this area was recently conducted by Hoffmann, Kaiser, and Kersting . They foPatterson and Rangganadhan  identifiAlthough there is a clear need for psychosocial support for bereaved AYAs (both those bereaved by cancer or due to other causes) to assist them effectively cope with and adjust to loss, there is a dearth of bereavement interventions for AYAs. Those that do exist are mostly targeted at children and younger AYAs  –21 ratheDesign and measurement issues also exist in the literature. As highlighted in several systematic reviews of the current literature –24, many. The GG program was designed to provide a safe and supportive environment for AYAs to achieve the following outcomes: increased coping abilities to better manage grief; reduced unmet information, respite, social support, psychological support, and practical support needs; and increased post-loss meaning-making . The name ‘Good Grief’ was chosen for the program in consultation with some of Canteen’s clients, encapsulating the idea that the grief process is a natural, normal and healthy  outcome following the loss of a loved one.To minimise the likelihood of negative short- and long-term consequences, it is essential that evidence-based and age-appropriate support is available to AYAs who have experienced the death of a parent or sibling due to cancer. To address this, we developed Good Grief (GG) – a 3-day, 2-night psychosocial programThe following theoretical and therapeutic frameworks were used in developing the GG program and informing its outcomes.The DPM posits that within the context of daily life, bereaved individuals engage in coping processes in relation to two kinds of stressor – loss and restoration , 29. LosStroebe and Schut  postulatThe constructivist approach theorises that an individual’s understanding of their identity is formed through “the stories that we construct about ourselves and share with others” . In the Research pioneered by Neff  defines In the bereavement literature, a continuing bond is defined as “the presence of an ongoing inner relationship with the deceased person by the bereaved individual” , and is This paper describes the development and evaluation of the Good Grief (GG) program – a manualised camp-based program based on the DPM and aimed at meeting the social support, coping and respite needs of AYAs who have had a parent or sibling die from cancer.An advisory group comprising of clinicians with expertise in working with cancer bereaved AYAs, AYA psycho-oncology researchers, and bereaved young people, guided the program design and development. The dual process model of coping with bereavement (DPM) was selected as the primary guide for the development of the program. With this model in mind, GG was designed to encourage active oscillation between the loss and restoration orientations during the camp; moving between therapeutic grief work and recreation/respite activities throughout the camp. This model was also explicitly discussed over the course of the program to assist participants to understand the grief process in greater depth and normalise their experience. In the development of this program we were particularly considerate of the developmental stage of those attending the camp. Therapeutic activities adopted for this program were based on approaches that attend to the formation of identity and values, and normalise rather than pathologise grief responses. Such approaches include acceptance and commitment therapy (ACT), constructivist therapies such as narrative therapy and Kristen Neff’s concept of self-compassion . We alsoDuring the program, participants were given the opportunity to share stories about their deceased loved one. A modified version of the Life Imprint  .GG is a two-night three-day camp-based program to support AYAs following the death of a parent or sibling from cancer. GG aims to provide a space for young people to: increase their coping abilities in order to better manage their grief, address unmet needs  that often arise following the death of a loved one due to cancer, and make meaning from their loss. Moreover, GG provides a place for young people to share about the life and legacy of their loved one with their peers – to acknowledge the impact their deceased family member has had on their lives, and to honour, grieve and remember them with peers who are going through a similar experience. GG has six psychosocial sessions  impacted by cancer (themselves or in their family), were recruited to the program via multiple methods, including flyers, emails, phone calls and face-to-face conversations. The program was provided at no cost to attendees. Information sheets were sent to participants, informing them of the purpose of the program’s evaluation, and that participation was voluntary and would not affect their ability to attend the program or their relationship with Canteen. Consent/assent was received from all participants and a parent/guardian if the participant was under age 18. Data were collected via paper surveys and interviews. AYAs completed demographics questions and baseline outcome measures at the beginning of the program (T0). Missing demographic data was obtained from Canteen’s client management system. They completed a program satisfaction survey at the conclusion of the program (T1). In the T2 survey, completed three months post-program, participants responded to a measure assessing usefulness, relevance and practicability and outcome measures. AYAs also completed session engagement surveys at the immediate conclusion of each program session. Participants were assigned an ID number which was used to match their surveys at each timepoint . AYAs who consented to be contacted for an interview were contacted after T2, at which point an interview was scheduled if they agreed to take part.To understand the impact of this program we used aspects of a framework for implementation outcomes  to assesSee Table AYAs who consented to be interviewed participated in a 20-min semi-structured phone interview with a researcher which was recorded and transcribed for accuracy. Interview questions explored AYAs’ personal experience of the program in greater depth than surveys, with a focus on expectations of the program, skills and knowledge acquired, and areas for program improvement.Where more than 20% of a participant’s data was missing for a scale or score calculation, their data was excluded from that analysis. Where up to 20% of a participant’s data was missing for a scale or score, a prorated scale or score was calculated using the average of valid items.AYAs’ session engagement scores represent the average of their helpfulness, meaningfulness and interestingness scores for that session. It should be noted that attendees at some programs did not complete ratings for the Honouring Ceremony due to those sessions finishing late, or facilitators not wanting to disrupt the emotional flow of the session.Helpful and Very helpful responses, divided by the total number of responses. The same was done for overall program satisfaction .For AYAs’ ratings of overall program helpfulness and topic usefulness/relevance/practicability, the percentage endorsing the program/topic as helpful represents the combined number of AYAs’ responses to the open-ended satisfaction questions  were categorised into key topics.Measure totals were calculated. For the TRIG, responses are summed to produce an overall score , with higher scores representing greater grief intensity . For theTo determine the effect of time on participants’ outcome scores, a one-way repeated measures multivariate analysis of variance (MANOVA) was conducted with time  as the independent variable and grief intensity , meaning-making , trauma coping abilities , and unmet needs  as dependent variables. For measures that had subscales and were found to be significant, further exploratory analysis was completed.A summary of participant interview responses was prepared under the key interview topics of program acceptability, meeting expectations, program benefits, personal growth, and improved coping strategies. Semantic coding of each response was completed and then codes were organised into categories . The most common categories are presented under the key topic headings, with selected quotes as illustrative examples. One person conducted detailed coding of interviews, which was examined by another reviewer for accuracy.Mage = 16.63, range 12 to 25 years; out of 151 total attendees (72%) who attended a GG program participated in the program evaluation. The majority of AYA participants were female (68%), born in Australia (97%), and currently studying (82%). Seven percent of AYA participants identify as Aboriginal or Torres Strait Islander, and 6% reported they spoke a language other than English at home. Most AYA participants had experienced the death of a parent . See Table One hundred and nine bereaved AYAs , followed by Honouring Ceremony , Coping and Resources , Sharing Memories , and Introduction of Loved One . Understanding Grief was the lowest scoring session .AYAs reported high levels of session engagement. Life Imprint was the highest scoring session . All but one AYA (99%) stated they would recommend the program to another young person whose parent or sibling has died from cancer. AYA ratings of satisfaction with facilitators ranged from 86 to 98% for all items, with high internal consistency (α > 0.8).Reflecting on the overall program at its completion, 99% of participants agreed that GG was helpful or very helpful, and 99% reported they were mostly or very satisfied with the program. High enjoyment of recreational activities was also reported  mentioned the psychosocial sessions, with 14 specifically discussing the Honouring Ceremony session. This was followed by making new friends and meeting people (n = 29), recreation activities (n = 21), and the supportive and social environment of the program (n = 10).Of the 108 AYAs who completed the measures immediately post-program (T1), in the open-ended questions section when asked what they most useful aspects of the program, the psychosocial sessions were mentioned most (n = 80). Of these, one-third discussed the Honouring Ceremony session, 12 specifically discussed the Coping and Resources session, and 11 mentioned the Life Imprint session. Following this, 11 AYAs mentioned being able to talk to and share their experiences with others.When AYAs were asked about the why they would recommend the program, the most common responses were because it was helpful (n = 33), it provided an opportunity to meet other young people going through a similar experience (n = 26), they gained useful knowledge/skills (n = 22), and it was an enjoyable/positive experience (n = 13).When detailing improving the program, the greatest number of respondents (n = 50) mentioned making changes to the program structure. Of these AYAs, 20 reported wanting the program to be longer in duration and 19 reported wanting changes to be made to sessions . This was followed by young people suggesting having more or different recreational activities (n = 16). Eighteen AYAs stated that they did not believe any changes should be made to the program.When asked about suggestions they have for Reflecting on the usefulness, relevance and practicability of the program topics for their day-to-day lives when asked as part of the three-month post-program survey, all program topics were perceived to be helpful by most young people  = 6.73, p < .001, partial η2 = .31. Analysis of the individual dependent variables was conducted. To account for multiple comparisons, a Bonferroni correction was applied. Analysis revealed no difference in total TRIG from T0 to T2  = 3.14, p = .08, partial η2 = .05). However, the GMRI Personal Growth subscale  = 6.73, p = .01, partial η2 = .10), PACT Coping Flexibility Scale  = 10.26, p = .002, partial η2 = .14) and total BCNI  = 16.64, p < .001, partial η2 = .21) were all significant at an adjusted alpha of 0.0125. Compared with T0, participants at T2 reported significantly greater personal growth-related meaning-making , trauma coping abilities , and lower unmet needs . These analyses were repeated with outliers removed. All significant results were retained with the exception of the GMRI Personal Growth subscale, which became non-significant (p = .04) at the Bonferroni adjusted alpha. To see whether our non-significant results could have occurred due to a lack of statistical power, we conducted power analyses using G*Power .”“It’s an experience that will change your life, and will go through the sections of acknowledging, of reflecting, and honouring in a really thoughtful way. And you'll meet wonderful people who will be some of your greatest friends, and that you’ll have with you for, hopefully, the rest of your life.”The high satisfaction reported in surveys was also reflected in interviews, with the majority  reported that GG had met their expectations. Common expectations discussed were learning skills to express grief, meeting others with similar experiences, and fun and respite. The remaining two interviewees reported their expectations were only partially met, with reasons including being unable to make friends, feeling that there was not equal opportunity given for group members to share in the group space, or learning fewer coping skills than expected.Most interviewees  identified making friends as a key benefit lasting well beyond the program, and nearly two-thirds reported having met others with similar experiences to their own who could understand what they were going through, with one AYA stating “that’s something really huge that I gained from that camp, was the friends I made” and “everyone in there could relate to what I was going through” and another explaining:“if you're trying to talk to your friends or someone [else] about it they don't understand how to explain and talk to you about things. They'll find it awkward and avoid it, but all these people [at the GG program] know where you're coming from”.Developing skills in expressing grief openly to others was also identified as a key benefit by just over half of the young people: “if I’m struggling with something, I will tell the friends that I met [on GG] or I’ll let my dad know… I’m more accepting of the fact that I need to ask for help”. Finally, two of thirteen interviewees mentioned feeling closer to their loved one as a result of the program, with one young person describing “I wanted to feel closer to Mum and also, sort of understand how I was feeling…I think that’s the biggest thing that I took from the camp, is that I can still have a connection with Mum”.Interviews also reflected several program benefits that young people experienced during the program and in the months afterwards. Ten out of the thirteen AYAs interviewed (77%) talked about feeling less alone as a result of the program and identifying with other participants, with one AYA stating:I think it's definitely made me a lot more stronger and a lot more aware of other people around me… it's just changed a lot of aspects of my life, really. How I treat other people. And how I expect to be treated by other people”.“Another young person said:I think there's a process of maturation that occurs, and I think that it makes you a more…- it makes you a wiser person than you necessarily would be for your age, and I think it makes you a more compassionate person. I think that it's… fast tracked the whole maturation process.”“Interviews additionally reflected AYA participants’ awareness of personal growth following their loss, with eleven of thirteen interviewees (85%) citing that they felt different since their loved one’s death. AYAs reported this personal growth occurring in a number of areas, including maturation, gaining of new perspective and assuming more responsibility, with one AYA stating:I’ve learnt to be able to cry and it’s okay to show your emotions”, and others said:“I kind of used things that I have done with dad previously [to cope]. Whenever I contribute to an activity I kind of remember, it helps me get over it a little bit. Like whenever I go fishing or camping, like even the scent of the tents kind of remind me of him a little bit”.“I think sometimes we can get a little bit lost through life and through just day to day things, but the camp really gave us a chance to sort of sit down with our feelings, and sort of go, ‘This is what's going on. This is how I feel. It's okay to feel this way’”.Improvement of coping skills and abilities was also supported by interview data, with all interviewees mentioning various coping strategies they had learned from the program. These included talking about their emotions with others, accepting their grief and acknowledging the uniqueness of the individual grief experience, openness to facing grief rather than avoiding it, writing letters to their loved one and keeping their loved one’s memory alive. Illustrating this, one AYA stated that “This paper provides evidence that GG was well received by young people bereaved due to cancer and that it significantly improved their psychosocial wellbeing. In particular, significant improvements were found in the core program outcomes, which had been identified as critical for preventing poor bereavement outcomes in this cohort. Our findings show that young people who attend the program experience the benefits that it was designed to deliver. It is expected that these benefits will provide AYAs with greater resilience and internal and external resources to walk through their grief experience and adjust to life following the death of their loved one.Young people were highly satisfied with the program, with strong convergence of survey and interview results. Almost all young people found the program helpful, satisfying and would recommend it to others. They also reported high enjoyment of recreational activities and satisfaction with facilitators. AYAs reported high engagement with all psychosocial sessions and for seven of the nine program topics at least 80% of young people reported them as helpful for their day-to-day lives. Regarding the helpfulness of the GG program’s topics, the examination of strengths and values shared with the deceased loved one, and the exploration of the shared grief experience between participants was the most highly endorsed topic. Supporting this finding, McDonald et al.  reporteda very good opportunity to learn coping skills. And to learn more about why you feel the way you feel and grief as a whole”. The PACT’s conceptualisation of coping as the flexible use of strategies relating to both facing the trauma experienced  and moving forward with one’s life  aligns with the DPM’s hypothesis of optimal adjustment to bereavement  back and I needed a set time or a set thing telling me what to do… I think, for me, it was just that I actually did get to spend that time reflecting… Which I, in all honesty, I hadn’t really done”.“Another possibility is that perhaps no change in these symptoms should be expected. On reflection, as this is a measure of grief symptoms that for the most part constitute a normal and even healthy response to loss [No change was observed in grief intensity, with post-hoc power analysis suggesting that this finding is unlikely to be due to insufficient power. Whilst we do not know with certainty why there was no change, it may have been that some young people had avoided engaging with grief prior to the program, and so the program may have provided a space for them to engage with their grief, potentially increasing or sustaining their grief intensity scores in the months following GG. Illustrating this possibility, in an interview, one AYA reported, to loss , then peWithout a control group, we were unable to account for potential changes in outcomes over time due to natural growth and recovery processes unrelated to the intervention, or due to participants potentially receiving other forms of support from Canteen. Additionally, whilst McDonald et al.  found thGG is a sustainable community-based program to which healthcare providers can refer young people who have experienced the death of a family member to cancer. This is especially important given these young people’s unmet needs and that the provision of such services is generally out of scope for primary, secondary and tertiary healthcare. Reflecting GG’s long-term sustainability, since its initial piloting, GG has been run 10 times, and has informed the development of an online grief program alternative for AYAs who cannot attend GG in person. This has been especially important during travel and social distancing restrictions associated with COVID-19. Furthermore, GG offers AYAs therapeutic opportunities beyond those that can be provided through typical one-to-one counselling services – namely peer support and the lived experience of the DPM.Healthcare services and hospitals may be unaware that their patients have adolescent or young adult children, so when providing end-of-life care to cancer patients, they should implement systems to assist with the identification of AYA family members who may benefit from referral to community-based support programs like GG  either Given the indelible impact that a parent or sibling’s death to cancer can have on young people, it is critical that theoretically driven and evidence-based programs addressing this impact are available and accessible to bereaved young people. The current study provides strong evidence for the acceptability, appropriateness and effectiveness of the GG program in meeting this need and demonstrates the vital role community organizations have in the provision of such support.