Cross-cultural adaptation and validation of the 2021 Louisiana Needs Assessment Questionnaire for Arabic-speaking people living with HIV

In the MENA region, Arabic language is the official language in the majority of its countries. So having an Arabic questionnaire is a crucial step in facilitating data collection from their populations. There are a few available translated Arabic questionnaires for PLWH including Health health-related quality of life questionnaire [11], HIV-stigma scale [12], HIV-18 KQ, and social support [13]. There is no valid Arabic questionnaire to assess the unmet health needs of PLWH and related support service needs. The current study followed the published guidelines for the process of cross-cultural adaptation of self-report measures [6] to develop an Arabic culturally-adapted version of the 2021 Louisiana Needs Assessment Questionnaire [9] which was available only in the English language. During the cross-cultural adaptation process modifications were carried out based on suggestions of the expert committee and PLWH who participated in the cognitive interview.

Regarding the questionnaire section's order, the general information was reported towards the end of the original questionnaire survey report. Nevertheless, to build rapport with the participants and ensure adequate participation, sections were reordered based on the expert committee review results. In the adapted questionnaire version, the general information section (age, sex, education, etc.) was ordered first. Also, questions related to HIV-related information were found more suitable to be placed as a separate section after the HIV medication section. Moreover, the re-ordering of response items to questions was done based on the commonality as stated by experts rather than being alphabetically ordered as in the original questionnaire. Rephrasing some questions or response items based on participants’ suggestions as stated in the results was carried out to make it more comfortable, non-offensive, clear, and understandable.

In order to provide critical information for planning and implementing targeted HIV prevention, care, and treatment programs for PLWH and populations at risk [14], a question about “the risk factors behind catching HIV infection” was added to the general information part.

The original questionnaire included questions related to the COVID-19 epidemic as it was generated in the year 2021 during the COVID-19 pandemic. On the other hand, the Arabic translation was carried out in 2023 after the pandemic ended and these questions were no longer relevant. Hence, these questions were omitted from the translated questionnaire. Moreover, questions related to race were omitted as there are no racial differences in Egypt or in the Arab countries, which are the main target countries for the use of the adapted questionnaire.

Many adaptations were carried out to questions related to healthcare services directed to PLWH in order to keep up with the situation in Egypt and Arab countries. Regarding titles of places providing healthcare services for PLWH, they were modified by the expert committee to fit the structure of the healthcare system, and nominations were given to these places in the targeted communities; where “Community health center” and “Community clinic” were replaced by “Governmental health unit”, “Governmental clinics for PLWH care”, “Governmental hospitals” and “Private hospitals”. Also, “TB Clinic” and “Premarital examination services” were added to the place of diagnosis response items. On the other hand, “Being offered a virtual visit” was omitted; and the question related to contacting a physician by phone was rephrased as these services are not available on an ordinary basis. Transgender-related services are also omitted as this is not applicable in Egypt.

For a more comprehensive view of the needed medical services and based on experts’ work experience with PLWH, TB clinic; dermatological and STDs services; obstetrics and gynecology services; and inpatient healthcare services were added to “Needed Medical services” in the adapted questionnaire version. Regarding supportive services, food banks; home-delivered meals; and translation services were omitted because they are not applicable or not commonly provided in Egypt and the Arab countries. On the other hand, legal services were added to the list of services needed by PLWH as suggested by study participants. This may be attributed to that many PLWHs might not find supportive and qualified legal assistance when they face HIV-related discrimination practices in housing, employment, and healthcare services [15, 16].

Moreover, modification of response items related to barriers to receiving different services either medical, social, or psychological support was necessary. “Language barrier” was omitted as the Arabic language is the official language in the Arab countries and is used by the vast majority of the Arab people. “Community conditions and customs preventing me from seeking service” was added to the response items based on participants’ suggestions. This addition reflects self-stigma which may be explained by the results of a previous study conducted to evaluate barriers to adherence to antiretroviral therapy in Egypt where participants experienced stigmatizing practices at treatment facilities and they showed high sensitivity to the behaviors of some healthcare workers [17]. Also, participants suggest adding “the inability to afford viral load testing” as a response item to “the current viral load”. This suggestion could be justified by what was reported by previous studies which found that high prices continue to represent a major barrier to affordable access to both new HIV medicines and viral load testing [18]. In Egypt, although there is an active national AIDS program that provides free access to voluntary testing, counseling, and antiretroviral treatment, it does not provide regular free viral load testing [19].

Regarding medical services funding and health insurance systems, mandatory modifications were carried out to related questions due to the complete difference found between the healthcare system structure and funding in the questionnaire’s place of origin and the situation in Egypt. Egypt's healthcare system is quite diverse and health services in Egypt are provided by three sectors namely government, parastatal, and private sectors. The government sector is funded by the Ministry of Finance. The parastatal sector represents quasi-governmental organizations including the Health Insurance Organization (HIO), the Curative Care Organization (CCO), and the Teaching Hospitals and Institutes Organization (THO). The private sector includes for-profit and non-for-profit organizations [20, 21]. On the other hand, in the place of origin of the original questionnaire, healthcare services are provided and funded through eight health insurance systems as stated in the original questionnaire. Similarly, the response items to “paying costs of HIV medications and HIV related illnesses” were adapted to the situation in Egypt where costs are either covered by the national AIDS program, support from non-governmental organizations, or self-paid.

4.1 Strengths and limitations

Strengths of the current study include providing an Arabic-translated and culturally adapted needs assessment questionnaire for PLWH. The culturally-adapted questionnaire will ease the way to assess the needs of PLWH in Egypt as well as other Arab countries in the MENA region which will facilitate the planning of services and evaluate the impact of the planned services on PLWH to control the growing epidemic in the region. Moreover, the Arabic version could be used in non-Arabic-speaking countries when targeting Arabic-speaking immigrants. Also, the developed questionnaire originated from a regularly used questionnaire for surveying the needs of PLWH in Louisiana by the Department of Health’s Office of Public Health aiming to “provide an estimate of the extent of PLWH’s unmet primary care and HIV-related support service needs, experiences in accessing those services, perceived barriers to those services, and insight into their reported knowledge of those services.” This adds to the questionnaire’s validity. The methodology and the involved sample size are considered adequate according to cross-cultural adaptation guidelines [6].

In the current work, the content validity of the translated version was adequately assessed as well as the face validity using the cognitive interview approach. However, it does not include an assessment of the psychometric properties of the questionnaire that should be covered in future work.

留言 (0)

沒有登入
gif