Researchers and clinicians are increasingly confronted with a difficult and exciting question: to what extent does cultural background contribute to the presentation, chronicity, and treatment of mental health disorders? The WHO’s ICD-11 and the DSM-TR 5 now include cultural caveats in their definitions of mental disorders (Boelen et al., 2020; Killikelly & Maercker, 2017; Prigerson et al., 2021). For example, the new diagnostic definition of prolonged grief disorder (PGD) can only be diagnosed if symptoms persist for a longer period of time or are more intense than would be expected in the individuals’ culture and context (Maercker et al., 2013). This novel addition to diagnostics catalyzes important discussions about the role of culture in mental disorder presentation and treatment. However, there are several challenges that have so far been overlooked. It is not clear how to establish the cultural norms of an individual or culture and whether these have been violated by disorder. For example, in the case of grief, cultural norms prescribe a mourning period and if grieving persists beyond the culturally expected mourning period that cultural norm has been violated. Clinicians, researchers, and health care workers on the frontline of mental health assessment are perplexed by the proposition that culture can quickly and easily be assessed in a diagnostic setting (Stelzer et al., 2020). The new disorder definition of PGD provides a unique opportunity to explore the assessment of a mental health disorder with its emphasis on culture and global applicability (First et al., 2015). Core symptoms of PGD include longing for and preoccupation with the deceased, significant emotional distress and significant functional impairment that persist beyond half a year after the death of a loved one (Killikelly & Maercker, 2017). Symptoms can differ in duration and expression according to the culture, religion, social status or gender of the bereaved (Rosenblatt, 2008). Therefore, although six months seem to be a good approximation of a grieving process, this duration is not exclusively limited. Indeed, the main distinction in diagnostic criteria between the newly proposed ICD-11 and DSM 5-TR PGD is the time criteria: the ICD-11 purports that symptoms must persist for more than six months, and the DSM suggests more than 12 months. To date, when questions about the duration of symptoms arise, clinicians are advised to use cultural norms in diagnostic decision making (O’Connor et al., 2015). Currently there is only one PGD assessment questionnaire that includes an item examining the role of culture. The International ICD-11 Prolonged Grief Disorder Scale (IPGDS) was developed based on key ICD-11 items from the Prolonged Grief Disorder-13 (PG-13; (Prigerson & Maciejewski, 2008) and the Structured Clinical Interview for Complicated Grief (SCI-CG; Bui et al., 2015; Killikelly et al., 2020). This questionnaire was developed in two parts. Part one examines the specific diagnostic items of the ICD-11 (13 items) and includes one item related to the cultural caveat (Item 14 My grief would be considered worse [e.g., more intense, severe and/or of longer duration] than for others from my community or culture). Part one of this scale may be used to establish a preliminary diagnosis of PGD according to established diagnostic features. Part two of the scale is a catalogue of possible grief symptoms that may have a stronger cultural fit depending on the individual assessed, (for example Item 4: I had a strong loud emotional outburst after the loss) (Killikelly & Maercker, 2023). Part two provides the patient and clinician a more in-depth assessment tool that may help with treatment planning, therapeutic rapport and further symptom delineation but is not used for diagnostics.

This two-part assessment framework is modeled on the Harvard Trauma Questionnaire (Mollica et al., 1992). The HTQ was developed in several parts and contains a combination of checklist and open-ended questions about traumatic events and emotional symptoms that are unique to a particular place and context. The HTQ is intended to be used in clinician interviews and not as a self-report. We have built on this framework by including a standard scale of well-known PGD symptoms alongside a supplementary assessment of additional symptoms that may be culturally relevant and particularly relevant for treatment planning. In addition, we provide a new simplified framework for how to adapt the IPGDS to different cultural groups. Presently, the IPGDS has been used and adapted to assess PGD and wider symptoms of grief in German-speaking, Chinese, Japanese, Syrian bereaved and a group of Arabic speaking migrants (Killikelly & Maercker, 2023). The standard scale and the adapted cultural supplement have been psychometrically validated in German-speaking and Chinese bereaved and preliminary validated in a group of Swiss and Canadian migrants from a variety of backgrounds (Killikelly et al., 2020). The cultural supplement was found to be valid and reliable for use in each of these groups and in each case items were augmented with specific culturally relevant items. For example, Chinese participants requested and strongly endorsed Item 1 of the cultural supplement ‘I experience strong physical problems since the loss (e.g., headache, problems with appetite)’.

Humanitarian migrants comprise refugees, asylum seekers or displaced people with a population rising to more than 70 million around the world (UNHCR, 2017). This group is affected by several challenges that have a negative impact on mental health including a high rate of traumatic events (Bhugra & Becker, 1999). The most common disorders are posttraumatic stress disorder (PTSD), depression and anxiety disorder (Fazel et al., 2005). Concerning PGD, Killikelly et al. (2018) found that refugees are significantly more affected than the normal population. For example up to 54% of refugees may experience symptoms of PGD while less than 10% of the general population (Lechner-Meichsner et al., 2024; Rosner et al., 2021). Research has shown that ethnic minorities, refugees and immigrants are more likely to be misdiagnosed with mental health disorders than patients from the main culture (Bäärnhielm et al., 2015). Indeed, patients and clinicians’ differences such as culture, gender, language, religion and ages can lead to a misunderstanding of the illness (Lewis-Fernández & Kirmayer, 2019). Currently there is an urgent need for a measure of PGD that is relevant and acceptable for refugees and displaced people. The main aim of this study is to culturally refine and develop a PGD addendum for refugees and displaced people that considers the distinctive experiences of refugees. This addendum may be used to supplement to the standard ICD-11 PGD diagnostic items (IPGDS standard scale) in the effort to improve therapeutic rapport, identify missing symptoms or features and improve treatment and care planning with refugees. As a proof of concept, we have explored symptoms and experiences of grief in a small group of Arabic-speaking refugees.

The results from this study are presented in two formats. The first type of results are the new questionnaire items and the structure for the new measure of grief. The step-by-step questionnaire adaptation and restructuring is presented in Appendix 1 (see Killikelly et al., 2025S). Second, the results from the qualitative/descriptive data analysis of the FG and CI are presented. These results provide an in-depth rationale supporting the amendment and additions to the IPGDS. They are organized into conceptual themes of clinical utility, feasibility, and content validity. The results of the framework analysis for the two FGs (combined) and CIs are presented separately below.

The IPGDS is the only scale that is extended to include culturally specific symptoms of grief alongside items for a prolonged grief diagnosis (Killikelly & Maercker, 2023). So far, there is no questionnaire to assess PGD and grief more generally, taking the refugee experience into account. This formative, proof of concept, research project had two overarching aims 1) to use a step-by-step method of cultural augmentation to develop an IPGDS addendum tailored to Arabic-speaking refugees and displaced persons (IPGDS-ARD) and 2) To provide an in-depth description of the rationale supporting the new content and additional scales in terms of feasibility, clinical utility, and content validity. To this end we conducted two focus groups with experts and six cognitive interviews with bereaved Arabic-speaking refugees. This resulted in a newly culturally relevant IPGDS-ARD questionnaires for bereaved Arabic-speaking refugees. Of note the current study aimed to develop and extend items for bereaved refugees more generally, however the resulting scales have only been piloted in a small group of Arabic speaking refugees. This will be explored in follow up studies.

In the first step of cultural augmentation, FG 1, the original IPGDS standard scale measuring ICD-11 PGD symptoms was preserved however the cultural supplement questions were replaced with a) loss of homeland scale, b) refugee adjustment and impact on grief and c) new culturally specific items. The rationale for the inclusion of these new sub-scales is captured by the themes revealed in the framework analysis: improved clinical utility (systematic assessment, definition of treatment priorities) and feasibility (duration, cultural differences) for use with bereaved refugees. In the second step, FG 2, the sub-scales were adapted again based on clinical utility and feasibility for use in the busy clinic environment. For example, the loss of homeland sub-scale was changed to the ambiguous loss sub-scale to reflect a more clinically useful phenomenon. In the final step of the adaptation the CI revealed few changes to the content of the questionnaires. Small changes to translation and some re-phrasings of the items were made. Overall, the few changes from the six CI support the content validity of the final IPGDS-ARD questions (see Figure 2).

Culture is a crucial component for better understanding the expression of illness, that is, cultural differences must be understood and considered for an appropriate diagnosis and treatment (Bhugra, 2005; Bhugra & Becker, 1999). In this study clinicians served as cultural brokers to provide a first window of insight into the clinical utility of a grief measure for refugees. The qualitative analysis on the FGs and CI provided rich data supporting each step of cultural augmentation and restructuring. Clinicians’ recommendations and insights reflected main themes of improving the clinical utility, feasibility, and content validity of the questionnaires. These are touchstones of establishing questionnaire acceptability and validity, particularly for different cultural groups. Previous research has used similar methods including focus groups and CI to develop the content of cultural adapted mental health measures. Our previous work has also demonstrated the value of including a wide range of clinician and patient perspectives to establish cultural relevance and clinical utility of the IPGDS. Swiss and Chinese health care workers examined the content of the ICD-11 PGD guidelines and provided in depth qualitative interview data on their perspectives on the clinical utility and global applicability (Stelzer et al., 2020). Important themes were revealed including the role of stigma in preventing help seeking and treatment and the value of including somatic symptoms in the diagnostic guidelines. Interviews with Japanese health care workers confirmed the overall utility of the ICD-11 PGD guidelines but included important possible barriers to clinical assessment such as the role of emotional control and the strong shame attached to seeking grief support (Killikelly et al., 2023). Health care workers can provide vital insight into their own illness beliefs and beliefs about the usefulness of assessments, as well as insight into their patients experiences and illness models.

The outcome of this cultural adaptation is an addendum to the original standard IPGDS scale with three new subscales: a) ambiguous loss, b) refugee adjustment and impact on grief and c) culturally specific items. The ambiguous loss section will be an extremely valuable measure for refugees and displaced people. Ambiguous loss is increasingly found to be a significant source of mental distress for displaced people (Boss, 2006). It is defined as the loss of a loved one where death is not confirmed (Solheim et al., 2016). Until now there have been no validated scales or systematically developed measures to assess ambiguous loss in refugees. Renner et al. (2021) found that ambiguous loss is associated with higher levels of depression and prolonged grief. We have built on the preliminary findings from the IPGDS-ARD to develop a shorter stand-alone scale, the AL+ (Comtesse et al., 2023).

The section refugee adjustment and impact on grief seeks to examine how post migration experiences may hinder the grieving process as an experience specific to refugees and displaced people. Hwang et al. (2008) recommend that cultural and contextual factors are considered in a timely and consistent manner when treatment planning and that this is re-evaluated systematically. This is especially important because many minorities share similar immigration experiences that could be targeted in prevention and treatment programs. Indeed, in a study about the impact of migration on illness experience and help-seeking strategies of patients from Turkey and Bosnia, Gilgen et al. (2005) examined explanatory models to investigate how those patients understood their illness and found that refugees attributed some of their migration experiences as causes of their illness. Kim et al. (2017) found that traumatic events can impact or diminish the ability to grieve. In their study, participants reported that the psychological sequalae following traumatic events such as torture were more significant and impairing and they saw grief as a less significant problem. The IPGDS-ARD provides clinicians and patients with concrete questions that may help unpick the source of distress and guide further assessment and tailor treatment planning towards grief interventions or towards resource building and support for post migration living stress.

It is important to note that these three new scales should be used in addition to the standard IPGDS scale if a diagnosis is sought. Only the standard IPGDS scale based on the ICD-11 PGD items can be used to confirm a diagnosis. The 3 scales in this new addendum can then be used to guide clinicians to assess and explore other grief related areas of possible concern and distress in refugee groups.