Recruitment procedure and setting
This study used community-based participatory research principles by partnering with a grassroots non-governmental organization called CORO for Literacy that provided educational, social, and legal programming for under-served slum communities in Mumbai. Participants were recruited through referral sampling, whereby organization members referred participants to the researcher, who is Indian, female, bilingual, and had three years of clinical interviewing experience. All meetings were conducted in private rooms to protect participants’ privacy. Participants were orally administered consent forms so they could make informed decisions about participation. They were also reminded of the confidential and voluntary nature of participation, limits to confidentiality, and the risks and benefits of study participation. Participants between ages 18 to 65 who provided verbal and written informed consent in Hindi and endorsed at least one item on the trauma screen (HTQ-I) were included in the study. All study procedures were approved for ethical research conduct by an institutional review board at an American university and by CORO for Literacy. Data were collected in two waves: June to August 2015 and August to October 2018.
Study procedure and study sample
Data were collected through verbal administration due to low literacy rates in Indian slums (65). Participants were administered a brief demographic form, followed by a PTEs and stressors (HTQ-I) screen. In total, 111 participants completed the HTQ-I and were included for the first aim; of the 111 participants, the 99 who were able to link their PTSD symptoms and idioms of distress to an index trauma were included for analysis of the second and third aims. Administration of HTQ-I was followed by a brief description of their index traumatic event (HTQ-II), any ongoing stressors (HTQ-III), and symptom reports on the PCL-5 (HTQ-IVa) and idioms of distress scale (HTQ-IVb). Lastly, participants were administered validated screeners for depression, anxiety, and somatic problems using the Patient Health Questionnaire (PHQ) series.
Participants were 34.13 (SD = 9.64) years old on average. They completed an average of 6.97 (SD = 3.76) years of education and subsisted on an average monthly per capita income of 57.99 USD (SD = 61.06 USD). The majority of participants were married (78.57%), of Dalit ethnicity (42.86%), and originated from a city (69.39%).
Adapted Harvard Trauma Questionnaire (HTQ)
The HTQ was adapted following the established procedures of the measure developers in a recent study of Iraqi refugees (66). These methods were consistent with recommendations in cultural epidemiology for assessment tool adaptation (66,67). The content adaptation of the HTQ is described below by section, followed by adaptation procedures for translation. For a global view of all adaptations by section, see Figure 1 and Supplementary File 1.
Adaptation of HTQ-I: PTEs, stressors, and perpetrators
The HTQ was adapted to assess PTEs and stressors relevant in India by explicitly querying for PTEs that included GBV and non-GBV stressors. The PTEs and stressors were created from an extensive literature review about Indian women (20). The PTEs and stressors consistent with physical and sexual GBV include domestic violence perpetrated by partners and family members (20), sex trafficking (68), and dowry-related violence (69). Information on the perpetrators of GBV events was also collected by asking participants to select one or more perpetrators for each event from partner, family/in-laws, friend/acquaintance, and/or other. Similarly, as Indian women experience violence during pregnancy (70), pregnancy status was obtained for GBV events.
Adaptation of HTQ-II and HTQ-III: Index trauma and ongoing stressors
Participants were asked to briefly describe their index trauma. All symptom reports in HTQ-IV were linked to this index trauma to keep consistent with the intended administration of the PCL-5. Participants were also asked: “Under your current living situation, what is the worst event that has happened to you, if different from above. Please specify where and when these events occurred.” Responses to this question were recorded as descriptive information and also coded dichotomously as ‘0’ (when participants endorsed no ongoing stress) and ‘1’ (when participants endorsed ongoing stress).
Adaptation of HTQ-IV: Symptom domains of HTQ
The HTQ was adapted to assess three types of trauma-related symptoms after participants endorsed a PTE or stressor. These included 20 PTSD symptoms in the DSM-5 derived from the PCL-5 (14) and 12 idioms of distress specific to India and created for this study.
HTQ-IVa: Hindi PCL-5 within the HTQ
A 20-item checklist, the PCL-5 assesses PTSD symptoms from the DSM-5 (14). Each symptom is rated for severity on a 5-point Likert scale ranging from 0 to 4, so total scores could range from 0 to 80. All participants were asked to anchor their symptoms to their most stressful event in the past 30 days. The Hindi PCL-5 was scored continuously. Any PCL-5 symptoms endorsed at or above moderate (‘2’) levels (i.e., rating of ‘2’, ‘3’, or ‘4’) were considered clinically elevated symptoms (14).
HTQ-IVb: Idioms of distress within the HTQ
A 12-item checklist, the idioms of distress scale contains idioms of distress gleaned from literature review and during discussions with two Indian key informants who were bilingual and familiar with trauma-related reactions. Examples of idioms included somatic complaints, such as orthostatic dizziness and pain in the nerves; culturally-laden cognitions, such as believing that the trauma was written in one’s destiny; and affective reactions, such as tension. Each symptom is rated for severity on a 4-point Likert scale ranging from 1 to 4, so total scores could range from 12 to 48. As this study did not validate the idioms of distress scale against a clinician-administered measure, the level at which symptoms were clinically elevated could not be determined.
Patient Health Questionnaire-9 (PHQ-9)
A 9-item screening instrument, the PHQ-9 (71) assesses the presence and severity of current depression and has been validated for use in India (72). This questionnaire queries all depression symptoms with response options ranging from 0 (‘not at all’) to 3 (‘nearly every day’) in the past two weeks, with total scores ranging from 0 to 27. The PHQ-9 demonstrated adequate internal consistency reliability in this study (Cronbach’s α = .78).
Generalized Anxiety Disorder Screen (GAD-7)
A 7-item screening instrument, the GAD-7 (73), assesses the presence and severity of anxiety (including generalized anxiety, panic, and social anxiety) and has been validated in India (72). The GAD-7 has response options ranging from 0 (‘not at all’) to 3 (‘nearly every day’) in the past two weeks and total scores range from 0 to 21 (Spitzer et al., 2006). The GAD-7 demonstrated good internal consistency reliability in this study (Cronbach’s α =.84).
Patient Health Questionnaire – 15 (PHQ-15)
A 15-item screening instrument, the PHQ-15, assesses the presence and severity of somatic complaints such as headaches, menstrual cramps, indigestion, and pain during sex. It has been validated in India. The GAD-7 has response options ranging from 0 (‘not at all’) to 3 (‘nearly every day’) in the past two weeks and total scores range from 0 to 21 (Spitzer et al., 2006). The GAD-7 demonstrated good internal consistency reliability in this study (Cronbach’s α =.84).
Adaptation procedure: Translation process and comprehension check
Consistent with other cross-cultural assessment tool adaptation, steps to translate and back-translate the instrument to ensure technical, semantic, and conceptual equivalence were undertaken (67). The assessment tool was first translated into Hindi, then back-translated into English by two independent bilingual individuals. For the PCL-5 measure embedded into HTQ-IV, two English-speaking PTSD experts rated the original and back-translated versions for conceptual equivalence on a 5-point Likert scale (ranging from ‘0’ denoting it was not at all the same meaning to ‘5’ denoting it was exactly the same meaning). Items rated at or below 3 were then semantically adjusted iteratively so the final back-translated version reflected the original meaning before being re-instated into the final Hindi HTQ.
As the wording of PTSD symptoms may not have been comprehensible to participants who may not be familiar with PTSD in this cultural context, the Hindi PCL-5 was also subjected to a comprehension check. A subsample (12%) were administered the comprehension check. For items the subsample endorsed (rated ‘1’, ‘2’, ‘3’, ‘4’), they were asked to provide examples of the symptoms. For the items the subsample did not endorse (rated ‘0’), participants were asked to explain the meaning of the prompt to ensure conceptual clarity. Answers were recoded verbatim and later coded by both authors against the prompts on the CAPS-5, a gold-standard clinician-administered PTSD assessment. Results of the coding process and disagreements were resolved through discussion and consensus.