Challenges and Strategies for Recruiting Type 1 Diabetes Families in Kuwait with Strong Beliefs in Familism

Type 1 diabetes (T1D) is one of the most common endocrine and metabolic conditions in children. In fact, this disease in children and adolescents has been increasing exponentially, with Kuwait being ranked second highest in the world regarding the number of T1D incidences. Kuwait is an oil-rich country known for its strong sense of familism, affiliative obedience, and filial obligation. Therefore, a familial study of this disease may disclose certain causative agents responsible for passing the disease on to subsequent generations. To recruit T1D patients and their family members, three different scenarios were developed. First, since Kuwaiti families are generally obedient to their doctors, the authors decided to recruit the patients through their endocrine physicians. Second, home visits were performed for meeting the families’ requirements. In this case, a team consisting of one nurse, two phlebotomists (a male and a female, since some refused to be seen by the opposite gender), and a driver of the institute’s car was arranged. Finally, two diabetes educators were employed to resolve any issues raised during the recruitment process. Utilizing these approaches helped convince the culturally and religiously oriented Kuwaiti families to participate in this study. In this case, the doctors and educators were not only aware of the obstacles in this population but also sensitive to the families’ beliefs. This paper reports on our experience in recruitment and presents a roadmap for any future familial studies on culturally tailored societies i.e. Arab populations.

Diabetes has reached epidemic proportions throughout the world, thus affecting millions of 3 people. In fact, for every adult diagnosed with diabetes, there is another who is undiagnosed, 4 since chronically elevated blood glucose levels do not often result in symptoms [1]. In Kuwait,5 there has been a rapid increase in childhood-onset ofT1D incidences over the last several 6 decades, with the current number reported as 41/100,000/year, which is the second highest in the 7 world after Finland [2] (see Figure 1). Given the prevalence of this disease, special actions for 8 preventing and reducing its impact in Kuwait should be one of the highest priorities for scientific 9 research and healthcare.

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T1D is defined as immune-mediated diabetes [3], which is caused by genes and environmental 11 factors, such as viruses, that trigger the disease [4]. It is usually found in children, adolescents, 12 and young adults, especially those with hyperglycemia and diabetic ketoacidosis [4]. The  Although a significant proportion of patients with T1D lack a family history of the disease, there 19 is considerable familial clustering, with an average prevalence of 6% among siblings, compared 20 to the 0.4% of the U.S. population. Moreover, there is a 3.8% risk of T1D among the Japanese 21 siblings of patients with T1D, compared to the 0.01~0.02% prevalence in the Japanese population [5,6]. In this regard, the sibling ratio (λs) can be calculated as the ratio of the risk to 23 siblings over the disease prevalence in the general population or λs = 6/0.4 = 15 and 24 3.8/0.01~0.02 => 100 for the U.S. and Japan, respectively [5,6]. 25 Familial aggregation refers to the occurrence of a given trait shared by family members (or a 26 community) that cannot be readily accounted for by chance. In this case, a family with a sibling 27 or parent with T1D is much more likely to pass the disease on to other family members [5,7].

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The rising incidences of this disease in Kuwait might be due to rapid lifestyle changes, including 29 "a sedentary lifestyle, changes in breastfeeding practices, and autoimmune deficiency caused by 30 greater hygienic standards and low vitamin D levels, which are highly prevalent in the region in challenging, and re-recruiting former participants can be even more difficult. Since Kuwait is 38 known for its strong sense of familism, affiliative obedience, and filial obligation, a familial 39 study of this disease may disclose certain causative agents responsible for passing the disease on 40 to subsequent generations.

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To the best of our knowledge, this is the first well-structured longitudinal familial study aimed at offering other incentives such as purchasing a laptop, textbooks, journal or professional 59 organization subscriptions, or sponsoring professional health care conference attendance [16] . . Therefore, the main goal is to contextualize the strategies and difficulties and to 70 share our experiences with those interested in culturally oriented populations (e.g., Arabs).

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Making home visits was another approach for meeting the families' requirements. In this case, a 85 team consisting of one nurse, two phlebotomists (a male and a female, since some participants 86 refused to be seen by the opposite gender), and a driver of the institute's car was arranged. After 87 receiving their consent, the list of families was categorized by the RC according to the 88 districts/areas in which they lived. In order to prevent any duplication or multiple coding, the 89 Dasman Diabetes Institute's Biobank was responsible for label preparation and family coding .

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Two laboratory technicians were also available to process the samples as soon as they arrived.

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Home visit approach was mainly proposed to tackle resistance to visit the institute for sample 123 collection, and to avoid transportation of any disabled family members. It was likely that this 124 flexible approach would increase participation rates, as logistical barriers such as inflexible work 125 schedules or lack of transportation of disabled family member. Although a skilled and 126 multidisciplinary team was arranged, this approach was not applied, due to the following reason 127 (see Table 2). least one affected member were successfully recruited (see Table 3).

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In this article, we draw upon our own experience conducting a familial aggregation study. We 136 explain the challenges we faced through our recruitment journey and how the research team 137 overcame the challenges faced with initial recruitment strategies. Additionally, we report on our 138 successful recruitment strategy which can be adopted by researchers in similar culture.

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From our experience, we faced some barriers which could be categorized into: psychosocial 140 barriers and physical barriers.

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The strong relationships and continuous support families received from DEs encouraged them to 169 participate in our study, which was deduced by others as well [16].  Distance was not an issue for most of the participants in our study, as the study recruitment site 177 was located at the diabetes healthcare institute, where the cases were treated/followed up. That 178 increased the participation convenience for the subjects and reduced some of the physical 179 barriers. However, transportation for disabled family member was an issue for some families.

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Thus, the study team proposed the home visit approach for sample collection to reduce the 181 burden on the family. With enough staff and funds this could be a successful approach to tackle 182 this barrier. However, this approach faced several logistic barriers in our study, and was not 183 preceded, resulting in losing some candidates who had disabled family member. The team had to 184 set-up a database to track the contact with the consented families and to convince them to 185 participate and to schedule appointments for samples' collection and to confirm these 186 appointments, while working around the families' schedule and the available staff's schedule.  The purpose of the present study was to characterize Kuwaiti Arab families. However, it 258 disregarded Kuwaiti families with non-Arab mothers. This was simply due to genetic 259 segregation, and it had nothing to do with racism. It narrowed our options in the recruitment 260 process. Finally, it is important to note that there were several families that simply mistrusted 261 diabetes research in general and refused to take part in this study or in any healthcare-related 262 research.