Chronic Kidney Disease (CKD) and kidney transplantation present particular challenges and have important repercussion in not only the patients’ personal lives but also in their families’ lives. Pediatric nephrologists and kidney interdisciplinary teams must develop special skills in dealing with these patients and their families.
Currently, there is data on the high risk of kidney disease in Aboriginal population groups in Australia, Canada, and Mexico (1)(2). Population studies in Australia, for instance, have observed how the prevalence of chronic kidney disease and hypertension in aboriginal groups are higher than in non-aborigine groups, but little is known in South America and much less during pediatric age.
Latin America has nearly 400 indigenous communities who represent 37-million people, most of which have high rates of morbidity and mortality indicators. In turn, Colombia – a pluricultural country – with 3.4% indigenous population, has identified 87 ethnic groups that constitute a population of approximately 1,392,623 people. In the Colombian southwest, the department of Cauca is also the center of indigenous community settlements. In this region, the percentage of indigenous population corresponds to 25% of the entire population (351,419/1,400,000) in the department.(3)
When we have a relationship with a family from a community with a singular cultural heritage involved, as indigenous groups in Colombia, special consideration must be considered to get in touch with them.
In this newsletter I illustrate, through two examples, some issues about the difficulty in understanding and treating patients with CKD and planning the kidney transplantation in this unique population. Two cases, one from the Emberá Chamí community in western Colombia with CKD and another one from Paez community located at the southwest of Colombia, are exposed in order to explore the implications of a different worldview in patient management.
Colombia: Distribution of the Emberá-Chamí and Paez communities.
J is the third child of an indigenous couple under the age of 30 living in a rural area. When he was two months old, he was diagnosed with vesicoureteral reflux, dysplastic kidneys, and ESKD. J’s mother had no prenatal care, and the nearest health center was four walking hours away. J was hospitalized and put on peritoneal dialysis. He was accompanied by his mother during the first month of his hospital stay. After that, both parents visited him every other month and stayed for two weeks during each visit.
The father said he would act as a kidney donor in spite of his wife’s objections, but then changed his mind after consulting his mother in law. Although the Emberá Chamí are organized in nuclear family subgroups, the extended family maintains an important control over the whole community.
J would have long ago been treated as an outpatient, if not for the physical restraints in accessing medical help and the fear to whether the community would or would not be able to provide him with peritoneal dialysis. In a community where 35.6% of the population is illiterate and 10.2% has little support for basic sanitation, a toddler on dialysis or post-transplant is a real challenge. Hence, the search for an adequate foster family begun with its own challenges. He became to a KTx at 15 months old.
A, the second patient, is a boy with dysplastic kidneys. He went into ESKD when he was one year old and required KRT. As his parents couldn´t take care of him, so he was put up for adoption. He went to peritoneal dialysis and received a living donor transplant from his biological mom at age four, with a very good outcome. He presently has two guardians: his biological mom and his adoptive family. He lives outside the indigenous community.
When dealing with a patient from a different cultural background, special care must be taken in making sure the family understands the exact nature of their child’s disease and the possible treatments. Having them grow outside their own cultural heritage will pose, with time, an emotional burden on the child and his family as well as a loss for an entire community and country.
J was supported at the beginning of KTx under the care of a medical institution trying to assume a role for which it is not prepared: guardianship. Then, he has remained in a step home, outside of his community.
Patient A has two caregivers and he is growing up in a healthy environment and is still having contact with his family and their culture.
Different worldviews should be considered when discussing treatment options in indigenous children.
We would like to highlight some issues that should be considered in the aboriginal population, in order to harmonize their permanence among their communities or go to live outside their own environments.
Risks associated with the remaining among the aboriginal communities.
- Difficult access to conventional health facilities
- Infections due to sanitary practices
- Physical restraints in providing KRT: peritoneal dialysis
- Communication barriers in assuring the proper community understanding and willingness to manage the ESKD or KTx
- Risk increased of nonadherence of medication treatment
Risks associated to prolonged hospitalization
- Possible abuse, alienation due to different views of health and disease.
- Loss of cultural heritage and identity
- Separation of a family
- Emotional deprivation
- Difficulties in ensuring adequate stimulation and experiences for a normal development
- L Haysom R Williams, E Hodson, LP Roy, D Lyle and JC Craig. Markers of CKD Aboriginal and non-Aboriginal children. Kidney International (2007) 71, 787–794
- Susan M. Samuel MD MSc, Bethany J. Foster MD MSc, Brenda R. Hemmelgarn PhD MD, Alberto Nettel-Aguirre PhD PStat, Lynden Crowshoe MD, R. Todd Alexander MD PhD, Andrea Soo MSc, Marcello A. Tonelli MD SM; for the Pediatric Renal Outcomes Canada Group
Incidence and causes of end-stage renal disease among Aboriginal children and young adults CMAJ, October 2, 2012, 184(14) DOI:10.1503 /cmaj.120427
- Ministro de Salud y Protección Social. Perfil de Salud de la Población Indígena, y medición de desigualdades en salud. Colombia 2016. 2016.