Barriers in accessing treatments for cleft lip and cleft palate in Bangladesh

Cleft lip and/or palate (CL/P) are the most common orofacial birth defects, occurring in 1 in 600 live births worldwide [1]. In Bangladesh, CL/P affects approximately 1 in 500-600 children, with an estimated 5,000 babies born with these conditions annually [2]. There are approximately 300,000 patients with unrepaired facial clefts, often from underprivileged families, and only a handful of qualified surgeons to treat them. A lot of patients cannot afford or access essential surgeries related to cleft conditions because of financial limitations, a lack of available surgeons, and stigmas. Significant psycho social impacts, such as social isolation, rejection from education and employment, and negative perceptions, are prompted by the stigma related to clefts in poor and middle-income countries (LMICs) [3]. Certain traits that differentiate the affected are culture, gender, race, socioeconomic status, age, sexual orientation, body image, and health [4]. Stigma against individuals with certain diseases impedes access to diagnosis, treatment, and positive health outcomes, leading to feelings of despair and shame that hinder care-seeking [5]. Systematic reviews summarising the psychosocial effects of cleft from high-income countries have previously been published, but there is a relative paucity of cleft treatment data in central and western Asia [6]. Regional and socioeconomic disparities also exist, and those from the Middle East and South Asia face more challenges [7]. Some research conducted in middle- and lower-income areas explained why different cultural ideas developed in each setting. This study examined the barriers to treatment for CL/P among Bangladeshi patients visiting a tertiary-level hospital.

Study design and settings

This cross-sectional study was conducted at Department of Orthodontics at Bangladesh Medical University from September 2019 to June 2023. Data were collected from three tertiary centres in Dhaka, Bangladesh Medical University, National Burn and Plastic Surgery Institute, and Bangladesh Specialised Hospital. These locations were chosen because they offer access to a wide range of patients and have expert cleft care, modern reconstructive facilities, significant patient flow, and extensive urban–peri-urban-rural. World Health Organization's world health Study on global AGEing and adult health (SAGE) survey was used to the socio-demographic data [8]. A questionnaire was used to assess the perceived barriers reported by the patients in accessing health care services. This section included seven questions, employing a 5-point Likert scale from “No” (1) to “Most” (5) [9]. Both an interviewer-administered questionnaire and a semi-structured interview were carried out to assess the socio-cultural, socio-economic barriers and personal factors related to access to healthcare services [10]. Matching and stratification were done during the study design. The questionnaire's viability was tested in a pilot study involving 15 patients. Key informant interviews (KIIs) and in-depth interviews (IDIs) were conducted to obtain qualitative data. The qualitative interview guides were pretested and adjusted as necessary.

Participants

A total of 105 adult patients with CL/P were recruited using purposive sampling based on specific characteristics relevant to the study's objectives. The selection was intentional and strategic. The researcher employed their expertise to identify and select individuals most likely to provide valuable data. Patients with medically handicapped conditions or those unwilling to participate in the study were excluded. IDIs were conducted with 16 adult patients who had undergone treatment and those untreated for cleft lip and palate. KIIs were conducted with 11 key informants involved in cleft care services, including teaching faculty, orthodontists, speech therapists, cleft nurses, and project coordinators.

Key variables ascertainments

Cleft lip and cleft palate

A cleft lip is a gap or division in the upper lip caused by the inability to develop the facial tissues of an unborn baby to completely close. A cleft palate occurs when there is an opening in the roof of the mouth due to the failure of tissue to join during fetal development [11].

Barrier

Our participants experienced various levels of socio-cultural and socio-economic factors, certain personal factors and different self-perceived obstacles and challenges while seeking health care. Barriers to health care access are any physical, financial, social, or structural obstacles that restrict, delay, or prevent individuals from obtaining necessary medical services, evidence-based care, or health information [12].

Stigma

The negative attitudes or false beliefs associated with these specific traits, circumstances, or health symptoms were assessed among the participants. Stigma refers to a negative view, belief, or attitude towards an individual or group because of specific traits or characteristics, leading to discrimination and social disapproval [13].

Social stigma

Social stigmas within the participants were found as they were negatively discriminated against as normal due to their physical unattractiveness. According to the World Health Organization, social stigma involves negative associations between a person and a group sharing specific traits associated with a disease [14].

For the IDIs and KIIs, interview sessions were scheduled and conducted with each participant. The sessions continued until theoretical saturation was reached and sufficient data were collected. Empathetic neutrality was maintained throughout the procedures. Member checks were performed to verify the accuracy and credibility of the findings. Interviews were audio-recorded. Immediately after recording, transcription was done.

Ethical clearance to carry out the study was obtained from the IRB of Bangladesh Medical University. Informed written consent was obtained from each participant, explaining the purposes of the study, goals, minimal risks, and benefits. A separate identification number was given to each patient to maintain confidentiality. Participation in the study was voluntary, and participants had the right to withdraw at any time without affecting their regular treatment procedures.

Statistical analysis

Quantitative data were analysed using SPSS for Windows, Version 20.0. Characteristics of treated and untreated patients were expressed as percentages. The patient-perceived barriers related to treatments and healthcare providers were expressed in numbers and percentages. The distribution of patient-perceived barriers across age categories, sex, cultural and socioeconomic factors, and personal factors affecting access to care and services was illustrated using bar diagrams. The perceived barriers from moderate to most were considered meaningful barriers. The transcribed data were coded, and themes were developed. Finally, data interpretation and concept development were carried out using thematic analysis. The emerging themes and subthemes were presented in tables with example quotes.

Discussion

Barriers related to CL/P profoundly affect individuals and their families, leading to social rejection and difficulties accessing healthcare and education. Our quantitative study found that almost all the participants faced more than one barrier related to their treatments and healthcare providers. Fear of undergoing unnecessary tests advised by physicians, the costs of these tests, and the inability to visit a doctor regularly were found to be major barriers. Scheduling difficulties in receiving treatment from the same doctors, as well as prolonged waiting room time, were also found. A study conducted at the eleven different governmental health care centres across Saudi Arabia reported that sometimes/often, not receiving the required medical care was due to scheduling difficulties, prolonged waiting room time, and transportation difficulties [15]. A study found that a lack of hospitals providing the surgery in their areas was perceived by patients barrier [16]. Although one of the main obstacles among our study participants was the fear of having unwanted tests recommended by the doctor, this kind of patient perception might also apply to other medical conditions also which needs further exploration.

Cultural factors are inherently involved in shaping maternal reactions to childbirth, and our analysis of barriers on socio-cultural, socio-economic factors found stigmatisations from family members and blaming mothers for illness as major barriers. Social stigma varies according to context and is influenced by cultural views on the cleft. In developing countries where prenatal care is less advanced, a CL/P is usually unpredictable, and families have more faith in religion and folklore than in medical explanations to explain the deformity. Such faiths include the causation of clefts as sins from a past life, witchcraft, God’s will, and engaging in behaviour associated with causal power. Responses to physical deformities are influenced significantly by beliefs and attitudes and have a profound impact on the affected individual and his/her family [17] and myths that CL/P occurred when mothers observed the eclipse during pregnancy [18].

While assessing personal factors, our quantitative study found transportation problems and work responsibilities as major barriers. A represented the diverse regions of the Arab Gulf, North Africa, and South Asia, who found traveled long distances for care and missed appointments due to work commitments were major barriers [19]. Similar findings were also found from our qualitative IDIs and KIIs, where cultural norms, beliefs, stigmas, especially blaming mothers for these problems, lack of financial support, and limited caregivers’ awareness and knowledge were reported as barriers. Reaching care was also impeded by prolonged treatment duration, long distances and inadequate transportation options. A qualitative study conducted across six operation smile-supported hospitals in low- and middle-income countries found barriers such as limited caregiver awareness, cultural beliefs, long distances, poor road infrastructure, and inadequate transportation options [20]. While others named mothers for several potential causes of the defect or abnormal conditions [21].

Certain barriers encountered at various levels and the treatment-related challenges faced by adult CL/P patients have not been the focus of any previous research in Bangladesh. The selection of study participants through purposive sampling enabled the inclusion of cleft patients based on specific characteristics or criteria relevant to the study's objectives. As it was a cross-sectional study, causal relationships cannot be established, but this research may help address the multifactorial challenges that cause delays in timely treatments, which can lead to lifelong consequences for patients in low- and middle-income countries. This approach also allows researchers to identify, analyse, and mitigate these obstacles—ranging from lack of awareness to economic constraints—thus improving access to care and supporting comprehensive treatment planning.

Conclusion

The barriers related to CL/P pose significant challenges for affected individuals and their families, requiring public health care providers to intervene by educating society about the natural causes and straightforward management of these conditions, thereby substantially increasing opportunities for patients.