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Stakeholders & Grantors in Cross-Cultural Adaptation of a Trauma Assessment Instrument for Syrian Refugees

Engagement of grantors and stakeholders in a research project can be vital to its success. In adapting the International Trauma Questionnaire (ITQ) to include cultural idioms of distress for Syrian refugees, grant funding would need to be secured in order to successfully carry through the development, testing, and initial study. Furthermore, partnerships with stakeholders are also important, as it is through their organizations and networks which participants may be gathered, may be a part of the research team itself, or may be members of the populations who will benefit from the research, such as mental health workers, other psychological researchers, the Syrian refugee community, policy makers, among others.

            Grant funders are more than just sources of money to complete a project. Ideally, they would also be partners, advocates, and endorsers, with an equal interest in seeing the project come to completion (Broussard, 2019). Typically, organizations, foundations, and government programs which award grants do so, at least in part, because they identify a need which aligns with their values and mission which usually helps society in some fashion (Grant Funding Expert, n.d.). For research which makes a substantial contribution to a field of study, this can also increase the reputation and notoriety of the organization providing the funding. In writing a grant proposal, one should pay close attention to the details of how the funds are meant to be used, and also the objectives and values of the grantors. The grant proposal application needs to clearly demonstrate the value of the research to society and to the grantor organization. Furthermore, funding agencies do not want their funds to be wasted, so defining a clear budget and purpose for funds awarded is necessary (Resnik & Elliott, 2013). While a funder who is actively engaged with the funds recipient throughout the research process shows a strong engagement partnership, it can also signal problems for researchers, whose research may then represent a conflict of interest or bias, even if unintentional, to produce results which please the grantor (Resnik & Elliott, 2013). A tip for engagement of grantors in increasing odds of being approved for funding is to make contact with them and learn about their goals, using a variety of modalities such as social media, emailing, calling, or having an in-person or virtual meeting to gain an insight into their perspectives (Wright, 2019). Grantmakers themselves should also seek to be involved with both their grantees and community stakeholders which can improve the success rates of the programs and research that they are funding (Enright & Bourns, 2010). For engagement with both grantors and stakeholders, meeting expectations is key – monthly reviews of the project progress and evaluation on which goals have been met and which are needing additional work or re-strategizing can help keep the project on track and maintain accountability.

            Researchers also need to engage with stakeholders. This includes “those involved in program operations,…those served or affected by the program,…[and] those who are intended users of the evaluation findings” (Centers for Disease Control and Prevention, 2012, par. 3), such as other researchers, community members, local leaders, organizations with interest in the research, thought leaders and experts, and others who may benefit from or be impacted by the research being conducted (Geo Funders, 2014). According to Boost Midwest (2020), stakeholders can be identified as being key stakeholders or secondary stakeholders, and it is recommended to create a stakeholder register and assessment. They state that the major benefits of engaging stakeholders are that they “can help provide an accurate sense of the needs and challenges facing the grantee. The more diverse your team’s list of stakeholders can be, then the easier the buy-in for the project and it’s goals will become and the more successful the implementation will be long term” (Boost Midwest, 2020, par. 12). Engaging with diverse stakeholders early in the research process and throughout its timeline, can increase the usefulness, relevancy, and credibility of the study (Preskill & Jones, 2009).

            There are a variety of strategies for engaging stakeholders throughout the research process, and beyond. Sharing updates and information on the project is essential, and a variety of methods can be used to do so. It will be important to consider each group or individual stakeholder and their ability to access such communications (for example, availability of internet service). The use of targeted experiences can be done through digital engagement, and includes sharing webinars, having Slack channels, podcasts, or informal meetups or chats (Young Entrepreneur Council, 2019). Meeting in person with stakeholders, even if infrequently (such as once a year) is also recommended, although talking on the phone may suffice if travel is not possible. Periodic updates can be sent out to stakeholders, through internet services like email newsletters, private emails, text or WhatsApp, or even through postal mail. Asking questions of stakeholders may bring in higher engagement, and also further collaborative efforts and allow stakeholders to share their expertise which may benefit the project.

In conducting research to develop an adaptation of the ITQ for Syrian refugees, it is expected that a number of stakeholders would need to be involved, in addition to one or more grantors. The development, pilot testing with feedback, and pilot testing for validity and reliability checks would best be done in a location close to potential participants and related stakeholders – Jordan was chosen as an appropriate country with high numbers of Syrian refugees while being a safe location to conduct research. Some permissions would likely need to be granted by governmental or organizational groups overseeing research with human subjects. Forming relationships with these groups could be mutually beneficial. Furthermore, stakeholders would ideally also be leaders within the Syrian refugee community, as well as with local mental health or psychology organizations which could provide input on the development of the assessment and would also benefit from being able to see or use the results in providing more comprehensive support or care for Syrian refugees. A cultural expert would also be needed to help broker local needs, as well as provide insight on cultural specificities in both working with and communicating with regional partners and participants, and also practical needs of conducting research such as assistance in renting an office space. Many secondary stakeholders could also exist from international organizations who hold interest in the research, however, too many could overwhelm the project’s immediate scale. A balance of input and output should be sought, and stakeholders could be assessed for their skills type and level of contribution that will improve but not hinder the research process (Preskill & Jones, 2009).


References

Boost Midwest. (September 24, 2020). Grant management: Building stakeholder engagement. https://www.boostmidwest.com/post/grant-management-stakeholder-engagement

Broussard, D. (February 13, 2019). Engage grant funders to be advocates and endorsers. Dickerson Bakker. https://dickersonbakker.com/engage-funders-to-be-advocates-and-endorsers/

Centers for Disease Control and Prevention. (2012). Program evaluation for public health programs: A self-study guide. CDC: Program performance and evaluation office. https://www.cdc.gov/eval/guide/step1/index.htm

Enright, K.P. & Bourns, C. (2010). The case for stakeholder engagement. Stanford social innovation review. https://ssir.org/articles/entry/the_case_for_stakeholder_engagement

Grant Funding Expert. (n.d.). Why does the government give grant money. https://www.grantfundingexpert.org/why-does-the-government-give-grant-money/

Preskill, H. & Jones, N. (2009). A practical guide for engaging stakeholders in developing evaluation questions. Robert Wood Johnson Foundation.

Resnik, D. B., & Elliott, K. C. (2013). Taking financial relationships into account when assessing research. Accountability in research20(3), 184–205. https://doi.org/10.1080/08989621.2013.788383

Wright, J. (September 27, 2019). Grant seeking 101: A step-by-step guide to finding and winning grants. sgENGAGE. https://npengage.com/nonprofit-fundraising/grant-seeking-101/

Young Entrepreneur Council, Expert Panel. (September 19, 2019). Five effective methods for     keeping stakeholders engaged. Forbes.             https://www.forbes.com/sites/theyec/2019/09/19/five-effective-methods-for-keeping-stakeholders-engaged/?sh=3cff4a6635b2

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Adaptation of Adult Trauma Assessment Instruments for Children & Adolescents

Adapting a trauma assessment for children and adolescents can be done based on an existing assessment for adults. Certain considerations need to be made for how children and adolescents understand and experience trauma in ways which are different from adults. Steps which outline how to do this can serve as useful guidelines. Assessment for trauma also can limit the long-term impacts of trauma, such as other psychiatric disorders, impaired functioning, and physical health problems (Berliner et al., 2020).

In some respects, adapting instruments meant for adult assessment to screen for trauma in children is similar to doing cross-cultural adaptations of instruments. Language needs to be understood and relevant for children (Grace et al., 2021), just as terms translated to other languages need to impart the same meanings within differing cultural contexts. Trauma assessments have typically focused on broad age ranges for children and adolescents, such as ages 6 to 17 for the Child Trauma Screen (Lang & Connell, 2018). However, there are dramatic developmental differences between children of different ages, and especially between children and adolescents (Grace et al., 2021). Many prior screens do not account for this, and also “did not report collecting data from children and adolescents on how to better articulate the screening items for them” (Grace et al., 2021, p. 2). Additionally, symptom presentations in children with PTSD are frequently left out of assessments, including somatic symptoms (often stomachaches and headaches), separation anxiety or clinging, regression of developmental skills (such as bedwetting), reckless behaviors, old fears suddenly reemerging, as well as symptoms which overlap with and may be misdiagnosed as attention deficit hyperactivity disorder such as hyperactivity, impulsivity, distractibility, and loss of focus and concentration (Kaminer et al., 2005). In their outline of steps to adapt an assessment cross-culturally, Sousa and Rojjanasrirat (2011) list the crucial fifth step as conducting a pilot study with the intended population, who then give feedback and rate the assessment questions, instructions, and items for their clarity and relevance. This step seems to be largely ignored when adapting assessments to children and adolescents, although it seems to be incredibly important to developing an accurate measure.

Moreover, other suggestions for cross-cultural adaptation would be very useful. Raghavan (2018) describes multiple considerations in this regard. Two of these stand out as particularly important additional considerations when adapting adult assessments for children and adolescents. Firstly, is the understanding of cultural idioms of distress. In this case, understanding how children express themselves and communicate amongst each other is valuable. This would mean that assessments may need to be reviewed every few years to ensure it is matching the current trends of how children and adolescents communicate and the terminology that they use. Another point made by Raghavan (2018) is the impact of interpreters. In this case, it would be the impact of the researcher, clinician, or administrator of the assessment. Considerations on this should be explicitly outlined in the assessment instructions by the development team. For example, a teacher administering an assessment may get a very different response from participants than a stoic but impartial researcher who is a stranger to the child, and also differing from a counselor who specializes in working with children and, even if a stranger, may know how to build safety and rapport with the child in the span of a few minutes.

Another consideration is that children may have trouble rating items on a Likert scale, as their memory and concepts of time differ from adults, so the use of Yes/No questions is preferable (Grace et al., 2021). Assessments which allow the child to self-report rather than relying solely on caregiver reports are more accurate (Sacher et al., 2017), although the use of caregiver reports or interviews can also provide important observations in a variety of contexts from someone who knows the child well (Berliner et al., 2020). It should be noted, however, that children and adolescents are particularly subject to suggestive statements, so assessment items which use first-person statements may lead them to be more likely to agree with those statements even if they do not accurately reflect the child’s experience (Grace et al., 2021).

 An important ethical consideration is if the assessment is being given within a clinical setting. If it is not, such as within a school, assessments which ask about a child’s traumatic exposure may cause distress or traumatization. However, for most children, assessments do not increase distress, although it has a higher likelihood of doing so in children who are having symptoms related to trauma (Berliner et al., 2020). Still, it must be considered if there is availability and access (including parental consent and financial resources) to initiate immediate treatment for a child who screens positively for trauma, as without such services, a trauma screening has the potential for harm (Grace et al., 2020). One other point is that there may be a tendency of assessments to not consider the child’s cultural context, such as those who live in dangerous communities, for whom what might appear as a high symptomology of hypervigilance is, in reality, a critical survival skill in their current situation (Grace et al., 2020).

Furthermore, it must be considered if the child’s family is the source of interpersonal trauma, in which case, an assessment could create intense fear and ramifications for the child at home (Berliner, 2020). This does not mean that such potential children should not be screened at all – in fact, early assessment and treatment is vital to ending abusive situations and providing healing for the child. Rather, that when doing an assessment, a plan should be in place in how to handle such situations. This includes the administrator’s familiarity with mandated reporting laws and procedures in the location the assessment is taken (Berliner, 2020). The context of the family can both be an exacerbator of trauma symptoms or a vital support network and conducting and development of assessments should take this into account, although its most valuable use is for clinicians who are treating traumatic symptoms in a child in working with the family.

References

Berliner, L., Meiser-Stedman, R., & Danese, A. (2020). Screening, assessment, and diagnosis in children and adolescents. In Effective Treatments for PTSD, 3rd ed. Forbes, D., Bisson, J.I., Monson, C.M., & Berliner, L., eds. The Guilford Press.

Foa, E.B., Asnaani, A., Zang, Y., Capaldi, S., & Yeh, R. (2018). Psychometrics of the Child   PTSD Symptom Scale for DSM-5 for trauma-exposed children and adolescents. Journal of Clinical Child & Adolescent Psychology, 47(1), 38–46.

Grace, E., Sotilleo, S., Rogers, R., Doe, R., & Olff, M. (2021). Semantic adaptation of the Global Psychotrauma Screen for children and adolescents in the United States. European journal of psychotraumatology12(1), 1911080.         https://doi.org/10.1080/20008198.2021.1911080

Kaminer, D., Seedat, S., & Stein, D. J. (2005). Post-traumatic stress disorder in children. World psychiatry : official journal of the World Psychiatric Association (WPA)4(2), 121–125.

Lang, J., & Connell, C. (2018). The Child Trauma Screen: A follow-up validation. Journal of Traumatic Stress, 31(4), 540-548.

Sachser, C., Berliner, L., Holt, T., Jensen, T.K., Jungbluth, N.J., Risch, E.C., Rosner, R., & Goldbeck, L. (2017). International development and psychometric properties of the Child and Adolescent Trauma Screen (CATS). Journal of affective disorders, 210, 189-195 .

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Cross-Cultural Adaptation of Trauma Instruments

The seven steps provided by Sousa and Rojjanasrirat (2011) for the cultural adaptation of health care assessment instruments primarily focuses on translation. This does include some cultural considerations as well, and they suggest it best to use translators who are not only fluent in both languages, but also from the culture in question, in order to capture meanings accurately rather than a direct word-for-word translation.

The seven steps are:

  1. Initial translation from the original language of the instrument into the language sought for adaptation by two translators. One of translators should also possess fluency in the scientific terminology of the discipline being used, while the other should not be, but still familiar with common expressions related to the discipline.
  2. Initial synthesis – comparing both the original and translated instruments by a separate translator for accuracy of meanings. Any discrepancies would be handled by a meeting between all translators to decide on the best meaning to use.
  3. The newly updated translated instrument from the previous step is then back-translated to the original language by two other translators who have never seen the original instrument. These translators should possess similar qualities to the initial two translators.
  4. Secondary synthesis – The two back-translated instruments are compared, and any discrepancies are similarly resolved as the initial synthesis by consensus, and all versions of both the translated versions and back-translated versions are compared.
  5. Pilot test the first draft of the instrument with individuals who speak the target language only and are not bi-lingual. The participants rate the questions, instructions, and items on the assessment itself for being clear or unclear. The use of an expert panel who are within the discipline or have knowledge of it is also recommended for this step to evaluate the clarity.
  6. Preliminary stage testing with participants who are bilingual. This often is skipped over in testing instruments, but it can be a valuable step if it is incorporated.
  7. Complete full testing with the final draft of the translated instrument using a sample from the target population. This test can help to iron out any final inconsistencies or issues, and can be used to determine the general validity and reliability of the instrument.

Raghavan (2018) shares recommendations when conducting assessments for survivors of torture, but, these suggestions are also highly useful to consider for any cross-cultural adaptation of assessments and instruments. These recommendations are based in the premise that cultural contextual factors are critically important to understanding, assessing, and treating how individuals from differing backgrounds express, conceptualize, and experience mental illness. Some researchers believe that inconsistencies in assessments and instruments cross-culturally are not due to actual differences in the rates and underlying symptomology of a mental illness, but rather that the measurement tool does not accurately portray definitions or options which reflect the cultural viewpoint of those being assessed.

These strategies include:

  1. Cultural idioms of distress. How mental illness manifests within a culture, how it is commonly understood and described, and experienced. Many collectivistic cultures use somatic symptoms to express mental distress, for example.
  2. Impact of Interpreters. When clients or participants must use an interpreter to communicate with a provider or researcher, the true meaning of what they try to convey may be misconstrued or lost. Furthermore, the skills and bias of the interpreter may alter both the meaning of the client/participant and the clinician/researcher, and the interpreter may suffer from secondary trauma. It would be best to use a researcher/clinician who is already fluent in the client’s language, but, if this is not possible, using an interpreter is still a better option than not using one.
  3. Cross-cultural equivalence of measures. Five criteria are proposed to determine if measures are equivalent in differing cultures, such as being contextually relevant, differences in the cultural understanding of constructs, or if the method of data collection itself creates a response bias, or is inaccessible to some.
  4. Adaptation and Translation of Measures. Here Raghavan (2018) seems to agree with the steps of translation proposed by Sousa and Rojjanasrirat (2011).
  5. Use of culture-specific normative data. This consists of the baseline sample to which the assessment would be comparing. For example, the normative data would be the general rate of PTSD among community members in Guatemala, but the assessment would be measuring rates of PTSD of Guatemalan refugees. Rather than comparing to PTSD rates among worldwide populations, this ensures that there is accuracy within a cultural framework.

In reviewing a study by Oe et al. (2020), the researchers did make use of the above steps by Sousa and Rojjanasrirat (2011) and recommendations by Raghavan (2018). They used a Japanese-developed trauma screen, the TEC-J, and compared this with the Global Psychotrauma Screen (GPS) which was developed elsewhere and then modified/translated for use in Japan using the guidelines by Sousa and Rojjanasrirat (2011). The use of the TEC-J is important because it was developed internal to the culture in question, and therefore included culturally relevant considerations in its design (Oe et al., 2020). However, this may be outdated, as the TEC-J was developed in the 1990s and therefore avoided asking about highly taboo topics in Japan such as childhood sexual abuse. It is unclear whether this would still be such a taboo today to the point that it would be avoided on an instrument all together. In their analysis, Oe et al. (2020) consider cultural factors which may have impacted the scores particularly on the GPS, including response bias as mentioned by Raghavan (2018). One limitation, which is mentioned by the authors (Oe et al., 2020), is that the sample was skewed to those with severe trauma and who were seeking help; in other words, no normative data for comparison (Raghavan, 2018).

References

Raghavan, S. S. (2019). Cultural Considerations in the Assessment of Survivors of Torture. Journal of Immigrant and Minority Health, 21(3), 586-595. http://dx.doi.org/10.1007/s10903-018-0787-5

Sousa, V.D. & Rojjanasrirat, W. (2011). Translation, adaptation and validation of instruments or scales for use in cross-cultural health care research: A clear and user-friendly guideline. Journal of Evaluation in Clinical Practice, 17, 268–274. 

Oe, M., Kobayashi, Y., Ishida, T., Chiba, H., Matsuoka, M., Kakuma, T., Frewen, P. & Olff, M. (2020). Screening for psychotrauma related symptoms: Japanese translation and pilot testing of the Global Psychotrauma Screen. European Journal of Psychotraumatology, 11(1).