Hrev_master Healthcare in Low-resource Settings 2025; volume 13(s2):13493 Families’ hopes for strengthening education to bridge thalassemia knowledge gap: a phenomenological study Feriana Ira Handian,1,2 Mohd Nazri Mohd Daud,3 Khalid Mokti,3 Aye Aye Wynn,1 Tin Tin Thein,1 Dewi Rejeki4 1Faculty of Medicine and Health Sciences, Malaysia Sabah University, Malaysia; 2Faculty of Health Sciences, Tribhuwana Tunggadewi University, Indonesia; 3Faculty of Public Health, Malaysia Sabah University, Malaysia; 4RSUP Cipto Mangunkusumo Hospital, Jakarta, Indonesia Abstract The prevention of thalassemia, particularly through early detection, is a significant concern that is currently inadequately addressed in Indonesia, where the condition is not widely compre- hended. To develop effective family- and community-based health promotions and interventions, it is crucial to consider the percep- tions and hopes that patients’ family members have about tha- lassemia education. This qualitative study employed a phe- nomenological approach, involving 24 family members of tha- lassemia patients from the Java and Sumatra Islands, to investigate their perspectives and hopes for strengthening thalassemia preven- tion strategies. Four themes emerged from analyzing the interview transcript data using the Collaizi method: i) the importance of early premarital education; ii) the hope that thalassemia will be included in the school curriculum; iii) the necessity to broaden thalassemia education across various facilities; and iv) the engage- ment of other sectors in thalassemia screening and prevention. This study highlights the necessity for the government to provide adequate support for thalassemia prevention. To enhance the effectiveness of thalassemia prevention, the government and other relevant parties should promptly develop prevention programs at the school level and implement premarital screening regulations in marriage institutions. Introduction Thalassemia is one of the most common hereditary blood dis- orders in Indonesia and can manifest in a wide range of severities throughout the country. Based on the assumption that 5% of the population is affected by this condition, approximately 2,500 new major cases are anticipated annually.1,2 The management of tha- lassemia in Indonesia is centered on supportive measures, such as blood transfusions, iron chelation, monitoring of complications, psychosocial support, and a seamless transition from pediatric to adult clinics.1,3 One of the strategies used to prevent thalassemia is screening,4 with carrier screening being the most extensively used genetic screening test in various nations.5 Several countries, including Thailand, Iran, Singapore, the United Kingdom, and Turkey, have implemented thalassemia screening procedures for the population.6-10 This is considered one of the applicable solutions for preventing thalassemia in Pakistan.11 In contrast, 95.7% of Indonesian adolescents did not participate in thalassemia screening despite knowing that tha- lassemia is an illness associated with an abnormality of red blood cells and that screening for this condition is essential.12 Another study in Indonesia revealed that 75.4% of premarital individuals were unaware of thalassemia.13 A similar situation was observed in Oman.14 Meanwhile, in Bangladesh, 89.3% of adults were aware of premarital carrier screening, whereas 30.5% were reluctant to undergo the test; undergraduate students’ and parents’ knowledge and awareness of premarital screening for β-thalassemia were insufficient in this country.15-17 Despite the importance of early diagnosis and optimal thera- peutic interventions for improving patient outcomes and quality of life,15,18,19 information regarding thalassemia screening and pre- vention remains extremely limited in Indonesia. Previous studies indicate that Indonesian youth generally exhibit poor knowledge and practices regarding thalassemia.20,21 A preliminary study, based on interviews with a principal administrator of the Association of Parents of Thalassemia Patients Indonesia (Persatuan Orang Tua Penderita Thalassemia Indonesia [POPTI]), indicates that family members caring for thalassemia patients may possess the sole understanding of this condition, as they obtain information directly from physicians. However, because they are not health professionals, they are often not trust- ed when sharing information with other family members. One family member claimed that they had never heard of screening and Correspondence: Feriana Ira Handian, Faculty of Medicine and Health Sciences, Malaysia Sabah University, Malaysia; Faculty of Health Science, Tribhuwana Tunggadewi University, Indonesia. E-mail: ferianaazar@gmail.com Key words: education; family; prevention; screening; thalassemia. Contributions: FIH, MNMD, KM, AAW, TTT, manuscript writing and data analysis; FIH, DR, data collection. All the authors have read and approved the final version of the manuscript and agreed to be account- able for all aspects of the work. Conflict of interest: the authors declare no potential conflict of interest. Ethics approval and consent to participate: not required. Funding: this study was financially supported by a research team. Acknowledgments: the authors would like to express their deepest grati- tude to all parties, including POPTI Indonesia, for their valuable contri- butions to this study. Received: 17 December 2024 Accepted: 26 March 2025 Early view: 13 June 2025 This work is licensed under a Creative Commons Attribution 4.0 License (by-nc 4.0). ©Copyright: the Author(s), 2025 Licensee PAGEPress, Italy Healthcare in Low-resource Settings 2025; 12(s2):13493 doi:10.4081/hls.2025.13493 Publisher's note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organi- zations, or those of the publisher, the editors and the reviewers. Any prod- uct that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. [Healthcare in Low-resource Settings 2025;13(s2):13493] [page 23] assumed that thalassemia was a condition related to anemia. This indicates a knowledge gap regarding thalassemia among family members. If families, as key players in prevention, continue to hold misconceptions about thalassemia and its screening initia- tives, reaching a broader population will be more challenging. Addressing this knowledge gap requires prioritizing family- and community-based health education. Family members are cru- cial in disseminating health information and supporting prevention efforts; therefore, understanding their perceptions and expectations regarding thalassemia education is essential. If misconceptions persist within families, promoting screening and prevention at the community level will be challenging. This study aimed to explore the hopes and perspectives of thalassemia patients’ family mem- bers in strengthening educational initiatives. By capturing their insights, this study seeks to inform effective strategies and inter- ventions that empower families and communities to bridge the knowledge gap and foster a proactive approach to thalassemia pre- vention in Indonesia. Materials and Methods Study design This study employed a qualitative research design, using a phenomenological approach. The phenomenological method was chosen to explore the perceptions and expectations of family mem- bers of thalassemia patients regarding thalassemia education. This approach allows for an in-depth understanding of how families interpret existing educational initiatives and their hopes to strengthen thalassemia awareness and prevention efforts. Participants This study involved 24 family members of thalassemia patients who were active members of the POPTI from the Java and Sumatra regions, aged over 18 years, and had experience as caregivers of thalassemia patients. The participants were selected using a purpo- sive sampling technique. Following the determination of sample size based on data saturation in qualitative research, interviews were conducted until no new themes emerged from data analysis. Variables and instruments The perspectives and hopes of family members investigated in this study are those directed toward the government, community, and health professionals regarding premarital thalassemia screen- ing and education to bridge the thalassemia information gap using their experiences. The instruments utilized in this study included a sound-recording device for offline interviews and a Zoom meeting application for online interviews. Data collection Considering the researchers’ experience and the vast geograph- ic scope of the studied areas, data were gathered through both offline and online in-depth interviews conducted between September 2023 and February 2024 in Java and the Sumatra Islands, using open-ended questions. Each interview session lasted 45-90 minutes. Interviews were carried out face-to-face with two participants from Java Island and online with 22 other participants via Zoom meetings at predetermined times. All the interview data were recorded and transcribed verbatim. Data analysis The Collaizi technique was used to analyze the interview tran- scripts with Open Code Software 4.03 Umea, which was utilized to generate codes, categories, and themes. The Indonesian themes were translated into English and reviewed by a research team com- prising experts in family medicine and health promotion from the Malaysia Sabah University. Validity and reliability Source triangulation with other family members was used to ensure the validity and reliability of information. Data analysis involved peer debriefing with two thalassemia specialist nurses from Indonesia. During the peer debriefing process, emerging top- ics were thoroughly discussed to acquire a better understanding of participants’ experiences. Ethical clearance The research ethics review was carried out following the WHO CIOMS guidelines and approved with No. E5a/126/KEPUMM/IV/2023 by the Ethics Committee of Muhammadiyah Malang University. Results Characteristics of participants The results showed that the participants were predominantly women (70.83%) who received secondary education (58.33%) and primarily worked in the informal sector (37.50%). Most of them earned ≤3,842,000 rupiahs per month (79.17%) and lived in Java regions (79.17%) with a distance to health facilities of 1-25 km (50%). The majority of participants were members of the patients’ nuclear family (95.83%) and already had health insurance (83.33%). However, despite having relatively easy access to health facilities, only 29.17% had undergone a thalassemia screening test, indicating low participation in screening. Thematic findings Based on the results of the in-depth interviews with partici- pants, the findings of this study can be classified into four themes: i) the importance of premarital education at an early age; ii) the hope that thalassemia will be included in the school curriculum; iii) the need to expand thalassemia education across numerous facilities; and iv) the involvement of other sectors in thalassemia screening and prevention. Theme 1. The importance of premarital education at an early age Premarital education at school age The participants emphasized the need for premarital education. To prevent the late diagnosis of thalassemia, they hope that tha- lassemia screening education before marriage is implemented as early as possible, preferably during school age, such as in junior or senior high school, vocational school, or university/college years. “As for premarital education, yes, that’s when children reach prepubescent age, and it must start at prepubescent age, right, when they begin to understand how they like others.” (P10) This is supported by P12, who stated, “From vocational school, I think. The first year of vocational school, in my opinion, is [the right time for thalassemia] education.” Pathways of Change, Part II [page 24] [Healthcare in Low-resource Settings 2025;13(s2):13493] Thalassemia education as an early parenting topic In reference to other families with thalassemia, participants hope that parents will educate their children about thalassemia before marriage, so that they can recognize the symptoms as early as possible. “So, [the same incident as] my little brother or child [or] my older brother [will not happen again]. Yes, XXX said earlier, to look for a partner in the future. I gave him early notice, Ma’am. Because he is already in the third year of vocational school, he can understand [easily].” (P16) Theme 2. The hope that thalassemia will be included in the school curriculum Limited resources and materials on thalassemia at school Currently, there is a lack of educational materials available in schools on thalassemia and other teen-related health topics, such as anemia and drugs. Participants hope that this limited knowledge of thalassemia will be addressed soon so that greater awareness about this condition can be raised among the extended family, and the symptoms can be detected when they occur in other family mem- bers. This is stated by participants with school-age children and/or siblings. “If, for example, it is stated in the school textbook what tha- lassemia is, they can find out.” (P15) Hope for extensive literature on thalassemia This involves providing information about thalassemia in edu- cational subjects for students. “At school, we have the habit of reading literature. So, usually, we are also asked to look for information. (Maybe) we can also look up thalassemia online every Thursday.” (P11) Theme 3. The need to expand thalassemia educa- tion across numerous facilities Hope for better thalassemia education from community health centers and media outlets Various institutions in Indonesia can contribute significantly to the provision of thalassemia education, including the Integrated Health Post (Pos Pelayanan Terpadu/Posyandu), Community Health Centers (Pusat Kesehatan Masyarakat/Puskesmas), gov- ernment agencies at the village or sub-district level, Family Welfare and Empowerment organizations (Pemberdayaan dan Kesejahteraan Keluarga [PKK]), and social forums such as com- munity gatherings. The participants highlighted the poor function- ing of these institutions in thalassemia education. “So, what, they [the health workers] are the only ones present in Puskesmas. So, the only chance is to give what it is… patient referral (just like that). There is nothing more. No [proper educa- tion]. So, what should I do? How… I am also [very] confused.” (P16) Hope for thalassemia education through social media platforms In addition to the various institutions, participants also hope that thalassemia education will utilize attractive methods, such as social media platforms, media production, banners at health cen- ters, and educational models in the form of videos. The use of var- ious types of information media, including social media, must be developed. “Posyandu, Puskesmas, I don’t think many people still under- stand, Instagram, TikTok… those are needed too, you know.” (P2) This statement is emphasized by P12, who stated, “Yes, I hope so, Ma’am. [I hope] the community or the government pays more attention to children with thalassemia.” Theme 4. The involvement of other sectors in tha- lassemia screening and prevention Hope for enhancing the role of marriage institutions in premarital thalassemia screening programs The Office of Religious Affairs (Kantor Urusan Agama [KUA]) is a marital institution in Indonesia that provides premari- tal education to all married citizens. Participants hope that KUA will be the first institution to screen couples for thalassemia prior to their marriage. “The best thing (for thalassemia screening education) is to go to KUA. Go to KUA first.” (P3) Hope for the development of a premarital screening poli- cy by the government According to participants, state-owned marriage institutions should make premarital thalassemia screening mandatory, prohibit marriage for groups at risk of having thalassemia, or guide prospective brides and grooms about planning for children after marriage, particularly if they or their partners are at risk of having thalassemia. “Next, inputs from community health centers were used to establish the database at the health office. Other inputs are provid- ed by regional hospitals that have the necessary equipment or labs. [All of these inputs] will reach all related offices. Where is the out- put? It goes to the KUA, churches, or temples that handle wedding ceremonies. There, you can access it using a certain password. Click on XXX’s name and enter the National Identity Number (Nomor Induk Kependudukan/NIK). Simply click there. Have you yet been screened? If not, sorry, you’re not allowed… pause [the process]. You [need to undergo] screening first. If you have been screened and it turns out that you are a carrier, stop [the process]. You must first consult the marriage counselor. Okay, that’s it. Therefore, this is not reckless. [The government] should prepare marriage counselors.” (P1) Discussion Improving early access to premarital thalassemia education This study highlights the importance of providing thalassemia education as early as possible to enhance the understanding of the disease and increase awareness of its signs, thereby encouraging early screening and prevention. This aligns with previous studies indicating that education for adolescents improves knowledge, attitudes, and awareness regarding thalassemia and its preven- tion.22-24 According to data from the 2019 to 2022 National Socio- Economic Survey, the average age at first marriage in Indonesia was 21.23 years in 2023. Individuals in this early adulthood often focus on various life events such as completing their education, getting married, having children, and building a career. However, the utilization of premarital screening in Indonesia remains low.25 In Turkey, mandatory premarital screening has led to the cancella- tion of 53% of at-risk marriages and an 80% reduction in at-risk Pathways of Change, Part II [Healthcare in Low-resource Settings 2025;13(s2):13493] [page 25] births. Similar programs have significantly reduced the prevalence of thalassemia in Arab countries, including Bahrain.26 Parents of children with thalassemia recommend that premarital screening be conducted during junior or senior high school (ages 13-20 years), as this period marks the transition from adolescence to early adult- hood. In Malaysia, screening is considered suitable for students aged 16-17.27 Therefore, thalassemia education should be provided to adolescents, and the government should consider implementing policies to integrate thalassemia education into the school curricu- lum. Raising awareness among adolescents will facilitate early detection of thalassemia and contribute to its prevention. Enhancing school-based thalassemia education and prevention programs The findings suggest that education about thalassemia should be incorporated into the school curriculum. Adolescence is a cru- cial period for acquiring knowledge about thalassemia, as it can foster awareness and encourage preventive measures. Studies have shown that adolescent brain development involves cognitive changes that enable the processing of new and complex informa- tion, as well as improvements in social functioning.28 This makes adolescence an optimal stage for understanding important health- related topics, including thalassemia. In Indonesia, school-based education on thalassemia information and prevention has not been widely explored. The School Health Unit (Usaha Kesehatan Sekolah [UKS]) provides essential health education.29-31 However, it does not specifically address thalassemia. In contrast, school- based education programs in other countries have been shown to positively impact various health domains, including oral health, nutrition, asthma management, and cancer awareness (breast and lung cancer).32-35 The findings reveal that thalassemia-related mate- rials should be incorporated into the school curriculum. However, the number of participants screened was low. This suggests that the presence of thalassemia cases among family members does not significantly influence willingness to screen, highlighting a chal- lenge in prevention. Data on premarital screening, especially among extended families, remains insufficient and requires further investigation. This study underscores the importance of integrating thalassemia education into school curricula to enhance adolescent awareness and prevention efforts. Low screening uptake remains a significant challenge, necessitating stronger premarital screening initiatives and further research on family participation in preven- tive strategies. Expanding thalassemia education through various social media platforms These findings highlight that long distances can limit access to instructional materials from hospitals. Therefore, online resources may serve as ideal alternatives, as they are not constrained by time or location. Diverse media, including social media, should support education about thalassemia. Indonesia has one of the highest numbers of social media users, and in recent years, social media has become a powerful marketing tool for Indonesian businesses.36 Given this trend, both public and healthcare workers can effective- ly use social media to raise awareness about thalassemia. Indonesia’s vast geography has resulted in numerous administra- tive and political entities, including those in the health sector. Puskesmas operates at the sub-district level, while Posyandu func- tions at the village level, enabling direct outreach to residents based on proximity. Furthermore, the PKK may serve as an effec- tive platform for delivering thalassemia education at the grassroots level. This approach aligns with previous studies showing the pos- itive impact of community-based infant nutrition programs on health education among rural women and supports recommenda- tions on community empowerment,37 which suggest that adaptive health interventions should be tailored to local contexts. Prior research has emphasized the crucial role of community develop- ment in fostering sustainable organizations.38 Online resources and social media enhance thalassemia education by overcoming geo- graphical barriers. Community-based health structures, such as Puskesmas, Posyandu, and PKK, provide localized education opportunities, aligning with empowerment strategies for sustain- able health awareness and intervention. Enhancing the role of marriage institutions for thalassemia screening The findings strongly support the integration of premarital tha- lassemia screening into Indonesia’s marriage institutions, particu- larly through the KUA. Participants advocated mandatory screen- ing policies to identify at-risk couples, prevent transmission, pro- vide informed reproductive counseling, and prevent them from having children with thalassemia. Premarital screening is an essen- tial solution to prevent the occurrence of thalassemia. This corre- sponds with other research indicating that premarital screening is mandatory in Turkey, Palestine, and Iran, whereas Italy, the Maldives, Greece, and Canada have voluntary screening programs.5 This has contributed to a reduction in thalassemia by identifying carriers and at-risk couples, thereby informing repro- ductive choices.39 However, thalassemia education and training for educators and marriage counselors should be prepared in advance. To design the flow, guidelines, and technical implementation of thalassemia screening, as well as screening for other disorders before marriage, cross-sector coordination between the govern- ment and marriage institutions is necessary. Continuous efforts in education and counseling are crucial to further reduce the burden of thalassemia. Conclusions This study identified four key themes regarding thalassemia patients’ family members’ hopes for education and prevention: i) premarital education at an early age; ii) inclusion in the school cur- riculum; iii) expanding education across numerous facilities; and iv) involving other sectors in screening and prevention. This chal- lenges hospitals and health professionals to improve community health promotion programs. The expectations pose a challenge to initiating cross-sector collaboration aimed at preventing tha- lassemia from spreading in Indonesia and achieving the country’s vision of zero-born thalassemia. The Ministry of Education, edu- cational institutions, and local governments should integrate tha- lassemia education into the school curriculum. Furthermore, the Indonesian government is expected to develop guidelines and tools for screening in marriage institutions. 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