Self-reported Barriers to Pediatric Surgical Care in Guatemala

Access to pediatric surgical care is limited in low- and middle-income countries. Barriers must be identified before improvements can be made. This pilot study aimed to identify self-reported barriers to pediatric surgical care in Guatemala. We surveyed 78 families of Guatemalan children with surgical conditions who were seen at a pediatric surgical clinic in Guatemala City. Spanish translators were used to complete questionnaires regarding perceived barriers to surgical care. Surgical conditions included hernias, rectal prolapse, anorectal malformations, congenital heart defects, cryptorchidism, softtissue masses, and vestibulourethral reflux. Average patient age was 8.2 years (range, 1 month to 17 years) with male predominance (62%). Families reported an average symptom duration of 3.7 years before clinic evaluation. Families traveled a variety of distances to obtain surgical care: 36 per cent were local (less than 10 km), 17 per cent traveled 10 to 50 km, and 47 per cent traveled greater than 50 km. Other barriers to surgery included financial (58.9%), excessive wait time in the national healthcare system (10. 2%), distrust of local surgeons (37.2%), and geographic inaccessibility to surgical care (10.2%). The majority of study patients required outpatient procedures, which could improve their quality of life. Many barriers to pediatric surgical care exist in Guatemala. Interventions to remove these obstacles may enhance access to surgery and benefit children in low- and middle-income countries.

SURGICAL DISEASE IS prevalent in low- and middleincome countries, yet the demands for surgical care continue to be unmet. Similar to other Central American countries, Guatemala has a limited number of pediatric surgeons. Although the exact burden of pediatric surgical disease in Guatemala is unknown, it is generally agreed that there remains a substantial discrepancy between surgical need and surgical access. 1 To better comprehend the reasons for unmet care, it is necessary to understand what factors are perceived as barriers to the surgical care of children. Barriers are generally defined as variables that prove to be an obstacle or hindrance or influence negatively to achieving and attainment of health and well-being.2 The objective of this study was to identify self-perceived barriers within a subset of the Guatemalan population seeking surgical care for their children.

Methods

This study was conducted at the Moore Pediatric Center in Guatemala City, Guatemala, during a 2013 medical mission of a U.S. pediatric general surgery and urology team in collaboration with Guatemalan providers. The study team consisted of three members, one with English as a first language and proficiency in Spanish and two native Spanish speakers with advanced English proficiency. Interviews were conducted orally and in person while at the clinic with assistance available to write down responses. No privileged health information was recorded.

Interviews were conducted in Spanish and translated into English for recording and analysis. Data were coded and integrated for common themes. Demographic information included child age, gender, distance traveled to the Moore Pediatric Center, surgical diagnosis, and duration of symptoms. Participants were asked which barrier(s) prevented them from seeking surgical care sooner. Barriers to care were explained in lay terms to participants.

Financial barriers were defined as direct and indirect costs related to treatment. Direct costs include surgical and inpatient fees, drugs and medications, pre- and postoperative examinations, food, and lodging. Indirect costs include loss of earning during surgery and recovery for both the patient and caregiver; this is also known as opportunity cost.3 Administrative delay was defined as the postponement imposed by the government healthcare system to provide free or affordable care. Geographical barriers were defined as the distance traveled to reach surgical services. Quality-ofcare barriers were explained as deficiencies in capacity or deficiencies in knowledge and skills. Capacity deficiencies include lack of necessary medicine, equipment, supplies, and facilities. Knowledge and skill deficiencies include lack of providers, inadequately trained health professionals, delayed referral, inappropriate treatment, and poor quality of services. Accessibility or availability was defined as the lack of patient knowledge of available resources. Other barriers were any barriers not mentioned previously. Because multiple barriers can coexist, patients were asked to select all barriers applicable to their situation. Participants were ensured of their confidentiality, and verbal consent was obtained. No compensation was offered.

Results

One hundred ten patients were seen in a screening clinic and offered participation in this study. Seventyeight interviews were completed. Patients' ages ranged from 1 month to 17 years; the average age was 8.2 years. Most patients were male (62%). Reported duration of symptoms before evaluation in our clinic ranged from 2.5 weeks to 17 years with an average duration of 3.7 years. Surgical diagnosis varied widely, including hernias (inguinal, umbilical, and epigastric), rectal prolapse, anorectal malformations, pectus malformation, thyroglossal duct cyst, craniofacial deformity, cryptorchidism, softtissue masses, and vestibulourethral reflux.

We were able to identify several self-reported barriers to pediatric surgical care in Guatemala (Fig. 1). Fifty per cent (46 of 78) reported financial cost to be a deterring barrier. Quality of care was the second most frequently cited barrier with 31 per cent (29 of 78) stating this as a reason for not seeking surgical care. Administrative delay or wait on the government healthcare system was reported by 9 per cent (eight of 78) of participants. Accessibility/availability was cited as a barrier by 8 per cent (seven of 78).

Only one family considered geography to be a major barrier. Families traveled varying distances to obtain care for their children: 36 per cent lived within 10 km of the clinic, 17 per cent traveled 10 to 50 km, and 47 per cent traveled greater than 50 km (Fig. 2). One participant cited fear of prognosis as the reason for delay.

Discussion

Inability to access timely, quality surgical care for children is a major global health concern. Identifying specific barriers to pediatric surgical care is a necessary first step to improving healthcare delivery. Targeting these barriers will allow for program development that enhances surgical access and will require input from both the native governments and international groups.

The Guatemalan healthcare system is comprised of three sectors: the private sector, the Guatemalan Social Security Institute (IGSS), and the public sector.4 The private, for-profit sector is comprised of private insurance, hospitals, clinics, pharmacies, and laboratories. According to the Pan American Health Organization's (PAHO) 2007 report, less than 5 per cent of the Guatemalan population owned private health insurance. The IGSS is the health services of the Ministries of Defense and Government and mandates that contributions from workers and employers be based on wages. Unfortunately, nearly 67 per cent of workers are not employed by a company officially registered in the IGSS, making IGSS services unattainable to most Guatemalans. Lastly, the public sector is governed by the Ministry of Public Health and Social Welfare (MSPAS) and includes 1304 health facilities. As of 2001, approximately 54 per cent of the population was covered by the MSPAS network (PAHO: Health Systems Profile-Guatemala, 2007). Despite these multiple sources of medical care, health care in Guatemala is unavailable to a substantial portion of the Guatemalan population.

Access to surgical care in Guatemala, similar to other low- to middle-income countries, is primarily limited by financial constraints, both by individuals as well as government health systems. For pediatric surgical care in Guatemala, there is a lack of adequate government-supported care, and the financial burden incurred by individual families for self-pay care can be tremendous. Our single-center study confirms that for many families, costs remain a major barrier to care, suggesting that increased subsidization of surgical care by nongovernment organizations and other groups may be able to alleviate the patients' financial burden.

In addition to financial barriers, cultural barriers may preclude access to surgical care in low- and middle-income countries. These barriers include issues such as language, religious, or cultural differences between health providers and clients as well as concerns such as potential mistrust health systems and apprehension of the quality of care. These barriers are less well defined in the literature, but may indeed be an important area that affects decisionmaking for these families. Further study of these issues, potentially with expanded data sets from national and international surveys or in-depth anthropologic survey methods, may help better delineate these complex topics.

One option to overcome limited access to surgery for children may be expanded collaborations between international surgical teams and local care providers. International cooperation involves donation of equipment, establishment of teaching programs, sharing of journals and textbooks, assistance in research, provision of fellowships for young surgeons, and encouragement of local capacity building.5 Visiting teams can have profound and lasting effects on the community. By training local staffon surgical procedures and patient care, local healthcare systems can ultimately be able to provide trustful surgical care year round, independent of visiting teams.

Although not captured in our survey, one common conception among Guatemalan families is that the Guatemalan government's health system is disjointed and sluggish.4 The private medical system is perceived to be high quality, yet prohibitively expensive, making it inaccessible to the majority of the Guatemalan people. Reforms to health services and reorganization of service delivery may improve access to surgical care. Additionally, an expansion of outreach services and screening programs so that more people are aware of the availability of surgical care would enhance education.

Lastly, geography was considered an inconvenience, not a major barrier, for many of our survey participants Despite this perception, 47 per cent of families reported traveling greater than 50 km to reach our facility. This highlights the need to strengthen the ability of regional facilities to deliver surgical care. Building surgical centers in rural areas and training community healthcare providers to perform common procedures will significantly reduce the burden of surgical diseases. Providing transportation services to rural communities may also be helpful.

Conclusion

Surgical care is an essential component of pediatric health systems. Unfortunately, it has often been ignored in the policymaking and resource allocation stages in low- and middle-income countries. Contrary to this belief, several recent studies in low-income countries have documented the cost-effectiveness of surgical care in small hospitals.6 The majority of pediatric surgical needs identified in our study are outpatient procedures, which once corrected can substantially improve quality of life.

We found that there are substantial barriers to obtaining surgical care for Guatemalan children, including limited financial resources, mistrust of local healthcare providers, inefficiencies in the national healthcare system, and geography. Further study of these barriers and targeted interventions may improve the surgical care of children.

Acknowledgments

This study was made possible through Mending Kids International (MKI), a nonprofit organization based in Burbank, California. Through surgical mission trips and sustainable teaching programs, MKI has provided care to thousands of children and training to local physicians and nurses in developing countries. More information can be found at www.mendingkids.org.

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KARISSA NGUYEN, M.S.,* SYAMAL D. BHATTACHARYA, M.D.,[dagger] MEGAN J. MALONEY, C.P.N.P.-A.C.,[dagger] LIGIA FIGUEROA, M.D.,k BRAD M. TAICHER, D.O.,[double dagger] SHERRY ROSS, M.D.,§ HENRY E. RICE, M.D.[dagger]

From *Mending Kids International, Burbank, California and Keck School of Medicine, University of Southern California, Los Angeles, California; the Departments of [dagger]Surgery, [double dagger]Anesthesiology, and §Urology, Duke University Medical Center, Durham, North Carolina; and kMoore Pediatric Surgical Center, Guatemala City, Guatemala

Presented at the Southeastern Pediatric Surgical Congress at the Southeastern Surgical Congress Annual Meeting, Jacksonville, FL, February 9-12, 2013.

Address correspondence and reprint requests to Henry E. Rice, M.D., Duke UniversityMedical Center, DUMC Box 3815, Durham, NC 27707. E-mail: [email protected].