Module 2: Unique Barriers to Health Care for Children and Adolescents

Introduction

A number of financial and non-financial barriers may delay or prevent poor households from seeking health care for their sick infants and children. Such obstacles are common in low- and middle-income countries and include distance, financial barriers, sociocultural norms, language barriers, and lack of knowledge and awareness. These difficulties affect all age groups and can lead to low demand for and use of services, particularly by the poor.

Unique Barriers for Children

Children and adolescents face additional and unique barriers to obtaining adequate health care. Such barriers prevent access to care and create health disparities. Inequalities in child survival are not the result of a lack of technological solutions. Rather, poor children continue to suffer because cost-effective child health interventions fail to reach them. The lack of health care access is compounded with malnutrition, micronutrient deficiencies, and illness in childhood, all of which have been found to impair cognitive development, school attendance, and learning capabilities.(1)(2)(3) It has been estimated that taking existing child health interventions to scale can result in a two-thirds reduction in child mortality.(4)

Infants, children, and adolescents face unique barriers to accessing care for several reasons. First, in many societies, the young fulfill a submissive social role relative to their elders. This power imbalance results in the subjugation of young people to their parents, relatives, and elder siblings. When at the bottom of the social structure in a family with limited resources, this can mean that priority will be given to others when medical care is needed. Similarly, children lack full adult rights which can lead to further reliance on others for appropriate care.

In addition, many health problems that occur in children require specialized health care procedures by specially trained health care personnel. For example, in the United States, pediatricians must specialize and train differently from general practitioners, and pediatric subspecialists exist within all other specialties (surgery, ENT, ophthalmology, etc.). Access to these highly-trained physicians and healthcare workers may be limited or nonexistent in low- and middle-income countries, creating unique barriers for children in need.

Case Study: Adolescent Sexual Health

In global health research, adolescent sexual health has emerged as an area of key concern, particularly in developing nations and regions such as sub-Saharan Africa where HIV and AIDS account for the second highest number of deaths. In 2019, an estimated 1.7 million adolescents age 10-19 were living with HIV worldwide. 88% of these adolescents live in sub-Saharan Africa. In sub-Saharan Africa, four times as many adolescent girls were newly infected with HIV compared to adolescent boys in 2019.(5) The increased focus on adolescent sexual health is due to the recognition that young age can be a risk factor for HIV, in addition to other factors such as gender, poverty, and periods of social-cultural and political transitions.(6) In many sub-Saharan countries, adolescent girls are two to three times more likely to be infected with HIV than boys in the same age group.(7) This high prevalence of HIV infection in young women stems from social and behavioral factors arising from power differentials rather than from any biological predisposition.(8)

The power imbalance in the relationship between adolescents and adults is obvious. First, young people often do not have full political and civil rights until they reach the age of full-fledged adulthood. The lack of full political rights can translate into the absence of social and economic rights, undermining the autonomy of the young. Thus, children’s physical and legal dependence on adults increases their vulnerability to disease.(9)

In fact, many children and youth do not have protection when negotiating their social and sexual lives, and they may get too little authoritative support from parents, the community, or the state. This lack of agency may make them more likely to engage in high risk behaviors and thus more vulnerable to HIV and other sexually transmitted infections. This also contributes to vulnerability with regard to their reproductive health since elders may consider their queries to be “morally inappropriate” worries. They may also be reluctant to voice opinions on issues thought to be within the purview of adults. Orphans are particularly vulnerable because they may not want to jeopardize the little support and security that they have.(10)

The sexualization of children, particularly adolescent girls, exemplifies and reinforces the power differentials that exist between the young and the old, particularly between young women and older men. A study examining the link between relationships with large age gaps and HIV prevalence found that in Sub- Saharan Africa, the high prevalence of HIV in young women and adolescent girls is driven in part by their relationships with older men who have often become infected with HIV from other female partners.(11) One way in which age differentials marginalize women is through the constraints of poverty.(12) Women and girls who are impoverished often have no choice but to turn to behaviors that put them at risk for developing HIV, such as transactional sex and manipulative relationships. Young women and girls living in poverty are also at higher risk for sex trafficking and exploitation.(13) Regardless of whether the relationship between poverty and HIV infection is causal, the social status of being poor is a major cofactor in the spread of HIV. Poverty is a condition characterized by dominance and dependence, and it consequently exacerbates other risk factors. Thus, when combined with age differentials, poverty can further disempower women and increase their dependence on an oftentimes older male partner for resources. This can ultimately result in less control over sexual practices and increased exposure to HIV.

In southern Africa, It is common for poor young women to pursue older partners who can provide them with money and gifts that are unavailable from partners of their own age. In a discussion group from a study on the relationship between older men and younger women, one woman relates, “With a young man, it depends on his ability. If he can give you money, fine, but most of them usually don't have money. So you're forced to look for someone who has the ability to give you what you want.” (Female, Mombasa, aged 15-19) In fact, most participants in this study remarked that young women use money from older partners to obtain essential items for themselves or for their families.(14) Young women may engage in cross-generational relationships in order to secure funds to cover education-related expenses that parents cannot pay, such as school uniforms, fees, and books. Some said that young women often tell their families that they have taken a "casual" job to make ends meet. Thus, generational power imbalances are exacerbated by poverty and constitute a social and economic challenge for young women. This results in increased exposure to HIV and other sexually transmitted diseases when women trade sexual favors with older men in exchange for resources.

Case Study: Children With Disabilities

According to a recent report by UNICEF, there are 150 million children with disabilities worldwide.(15) 6.4% of children under fourteen in Africa are moderately or severely disabled.(16) Children with disabilities who are born in low resource settings often do not survive early childhood, and those who do often experience worsened symptoms and conditions due to lack of access to health care services early in life.(17) The World Health Organization has declared that the support of people with disabilities is a human right, and the organization has committed to prioritizing the mainstreaming of disability as a development issue.(18)

Childhood disability in sub-Saharan Africa is closely linked to poverty, as many of these children develop lifelong disabilities as a result of a lack of treatment for common illnesses and injuries. The challenges these children and their families face are exacerbated by the widespread stigma surrounding disability. A study looking at stigma towards disability in Ethiopia found that the stigma and negative attitudes towards people with disabilities led families with children with disabilities to feel a lack of support from their community and health extension workers. This negative attitude can prevent parents from seeking care for children with disabilities. For example, a study looking at the experiences of caregivers for children with disabilities noted that a family in Malawi believed that “nothing could be done” for their child, as a result of the stigma and misconceptions, and therefore did not seek medical care.(19)

Stigma surrounding disability can also impact parents, who may be told by others to give up on their child, or that spending time and money on healthcare services is wasteful. This is harmful because health services, therapies, and support groups are often beneficial for both the child and the caregiver who is able to find support and share experiences with professionals and peers. These negative attitudes can also lead to misconceptions such as in Uganda where a nurse failed to provide an HIV blood test to an adolescent girl with a physical disability since she believed the misconception that adolescents with physical disabilities are never sexually active.(20)

Religious beliefs and cultural norms can also present a barrier to access. If caregivers believe that their child's disability is caused by God or by a supernatural power they may be more likely to seek out traditional or spiritual care instead of medical care, delaying treatments and therapies that could benefit the child. A lack of education or open discussions about disability can also lead to barriers to care since caregivers might be unaware of potential treatments or therapies that can improve a child’s health and wellbeing. If caregivers aren’t educated about the nuances of the child’s condition they might view it as permanent or untreatable, even when beneficial therapies or treatments are available. Studies have found that when caregivers were educated about their child’s disability they were less likely to neglect the child and more likely to seek medical care.(21)

Unfortunately, in many sub-Saharan countries, access to specialized health care facilities and resources for CwDs is limited to urban areas. This leaves the vast number of families without adequate support. Traveling long distances with CwDs can be challenging for caregivers, making health clinics even more inaccessible. This creates major barriers when a child needs to see a specialist to receive a diagnosis or to receive complicated care. For example, in Ethiopia, a child can only receive an official Autism diagnosis from a government or private health clinic, all of which are located in Addis Ababa.(22) Government clinics also require a referral in order to get an appointment, which can be very difficult for individuals living in rural areas.(23)

Implications

The barriers that inhibit children and adolescents from accessing care can lead to increased risk and higher rates of morbidity and mortality. In families where children are ill, malnourished, or disabled, family members may miss work or other opportunities to generate income as they care for the child, which may reduce household income, pushing families further into poverty. In addition, illness, malnutrition, or disability in childhood are increasingly associated with lower economic productivity in the longer term.(24) For these reasons, an important challenge in global health today is to increase the availability of child and adolescent health resources and lower the barriers that inhibit access to care and that put youth at risk.

Footnotes

(1) Balasz et al 1986 and Pollitt 1997 and 2001. In: Alleyne G, Cohen D. Chairs, Health, economic growth, and poverty reduction.

(2) Mendez M, Adair L. Severity and timing of stunting in the first two years of life affects performance on cognitive tests in late childhood. Journal of Nutrition, 1999 129: 1555-1562.

(3) World Bank. Filipino report card on pro-poor services: summary. World Bank, Environment and SocialDevelopment Unit, East Asia and Pacific Region, 2001.

(4) Wagstaff A., Claeson M. The Millennium Development Goals for health: rising to the challenges. Washington D.C., World Bank, 2004.

(5) Naswa, Smriti, and Y S Marfatia. “Adolescent HIV/AIDS: Issues and challenges.” Indian journal of sexually transmitted diseases and AIDS vol. 31,1 (2010): 1-10. doi:10.4103/0253-7184.68993.

(6) Barnett, B. with J. Schueller. Meeting the Needs of Young Clients: A Guide to Providing Reproductive Health Services to Adolescents. Research Triangle Park, NC: Family Health International, 2000.

(7) Naswa, Smriti, and Y S Marfatia. “Adolescent HIV/AIDS: Issues and challenges.” Indian journal of sexually transmitted diseases and AIDS vol. 31,1 (2010): 1-10. doi:10.4103/0253-7184.68993.

(8) Daily, Joanna et al., "Women and HIV Infection." In Farmer, Paul, Margaret Connors and Janie Simmons. Women, Poverty and AIDS: Sex, Drugs and Structural Violence. Monroe: Common Courage Press, 1996.

(9) Croghan, et al., “Routes to Better Health for Children in Four Developing Countries,” The Milbank Quarterly 84 (2), 2006: 333-358.

(10) Barnett, B. with J. Schueller. Meeting the Needs of Young Clients: A Guide to Providing Reproductive Health Services to Adolescents. Research Triangle Park, NC: Family Health International, 2000.

(11) “Women and Girls, HIV and AIDS.”Avert, 23 Apr. 2020, www.avert.org/professionals/hiv social-issues/key-affected-populations/women.

(12) Simmons, Janie, Paul Farmer and Brooke Schoepf. "A Global Perspective." In Farmer, Paul, Margaret Connors and Janie Simmons. Women, Poverty and AIDS: Sex, Drugs and Structural Violence. Monroe: Common Courage.

(13) “Women and Girls, HIV and AIDS.”Avert, 23 Apr. 2020, www.avert.org/professionals/hiv-social-issues/key-affected-populations/women.

(14) Longfield, Kim. Glick, Anne. “Relationships between Older Men and Younger Women: Implications for STIs/HIV in Kenya” Studies in Family Planning, Vol. 35, No. 2 (Jun., 2004), pp. 125-134  Published by: Population Council.

(15) UNICEF. Promoting the rights of children with disabilities; 2007.

(16) ACPF (2014). The African Report on Children with Disabilities: Promising starts and persisting challenges. Addis Ababa. The African Child Policy Forum (ACPF).

(17) UNICEF. Promoting the rights of children with disabilities; 2007. 

(18) World Health Organization. World report on disability 2011. Geneva: World Health Organization; 2011.

(19) Paget A, Mallewa M, Chinguo D, Mahebere-Chirambo C, Gladstone M. “It means you are grounded”–caregivers’ perspectives on the rehabilitation of children with neurodisability in Malawi. Disabil Rehabil. 2016;38(3):223–34.

(20) Adugna, M.B., Nabbouh, F., Shehata, S. et al. Barriers and facilitators to healthcare access for children with disabilities in low and middle income sub-Saharan African countries: a scoping review. BMC Health Serv Res 20, 15 (2020). https://doi.org/10.1186/s12913-019-4822-6.

(21) Ibid.

(22) Tilahun D, Hanlon C, Fekadu A, Tekola B, Baheretibeb Y, Hoekstra RA. Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey. BMC Health Serv Res. 2016;16(1):152.

(23) Adugna, M.B., Nabbouh, F., Shehata, S. et al. Barriers and facilitators to healthcare access for children with disabilities in low and middle income sub-Saharan African countries: a scoping review. BMC Health Serv Res 20, 15 (2020). https://doi.org/10.1186/s12913-019-4822-6.

(24) Macroeconomics and health: investing in health for economic development. Report of the Commission on Macroeconomics and Health. Geneva, World Health Organization, 2001.