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.

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.

1. Difficult access to conventional health facilities
2. Infections due to sanitary practices
3. Physical restraints in providing KRT: peritoneal dialysis
4. Communication barriers in assuring the proper community understanding and willingness to manage the ESKD or KTx
5. Risk increased of nonadherence of medication treatment

Risks associated to prolonged hospitalization

1. Possible abuse, alienation due to different views of health and disease.
2. Loss of cultural heritage and identity
3. Separation of a family
4. Emotional deprivation
5. Difficulties in ensuring adequate stimulation and experiences for a normal development

References

1. 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
2. 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
3. Ministro de Salud y Protección Social. Perfil de Salud de la Población Indígena, y medición de desigualdades en salud. Colombia 2016. 2016.

Since it has been rotation time, all the members of the Publication Committee warmly welcome Koji Hashimoto, Cleveland, USA, Jason Vanatta, Memphis, USA, and Adrianna Sikora, Aurora, USA (AHNP representative) to the team. We would also like to thank those whose terms ended last May for their time and effort spent: Cheryl Sanchez-Kasi, California, USA, Andreea Rachisan, Cluj-Napoca, Romania, and Diana Shellmer, Pittsburgh, USA (AHNP Committee).

As a new contribution, the Publication Committee will discuss an outstanding article in each newsletter beginning next December 2022. These articles should have provided new important information and can address a transplant specialty. They will have not yet been published in Pediatric Transplantation or have been published in other journals. The Publication Committee is happy for the contribution of our president Carlos Esquivel and the editor-in-chief Burkhard Tönshoff, who will support the selection of appropriate content for the readership of the IPTA newsletter. The presentation of the article will also contain some explanation on how the article needs to be seen in context of the current literature and knowledge.

The Publication Committee continues to work on providing mentoring to younger colleagues and will actively support the upcoming IPTA meeting. If you are interested in receiving mentoring, please contact Chesney Castleberry (chesney_castleberry@mednax.com). In addition, please stay tuned for a webinar talk that will be aired in the first months of 2023.

Lastly, we would like to ask you to feel free to come up with any suggestions and/or contributions for the IPTA newsletter. After all, the newsletter is meant for you!

Warm regards,
Marta L Monteverde
On behalf of the Publication Committee

The Allied Health and Nursing Professionals (AHNP) Committee of IPTA is committed to improving the health of all children who require transplantation. To advance this mission, the committee developed a survey, open to all allied health and nursing professionals working in paediatric transplant (regardless of IPTA membership), with the following aims:

1. describe the prevalence and diversity of the clinical, research, and teaching practice of AHNP
2. develop a greater understanding of multidisciplinary team composition
3. identify possible barriers and challenges for AHNP practice.

Additionally, the COVID-19 pandemic was declared prior to survey’s circulation, providing the Committee an opportunity to explore practice-based changes associated with the onset of the pandemic. The survey distributed through email by TTS and IPTA and was active between September 18 and December 31, 2020.

119 respondents completed the survey, representing a diverse group of professionals including; Nursing and Advance Practice Nursing (includes Nurse Practitioner, Clinical Nurse Specialist/Clinical Specialist, Physician Assistant, General Nurses, Transplant Coordinator), and Allied health (including Psychologists, Dieticians, Pharmacists, Social Workers, Physical Therapists, Occupational Therapists, Creative Therapists (i.e., Music, Art and Drama) and Other (kinesiologist, researcher) Half of the respondents reported practicing in the field of pediatric transplantation for over 10 years. The majority were from North America with representation also from the United Kingdom, Europe, Australia, New Zealand, South Africa, Central and South America.

The results suggested that in terms of clinical practice, Nurses, including those in advanced practice roles, typically provided care to a single organ group, while Allied Health professionals provided care for multiple organ groups. Furthermore, funding allocation was different across Nursing and Allied Health professions; one third of survey respondents were not provided with formal funding to complete their clinical activities in transplant programs, with the majority of these being allied health professionals. Barriers to practice were described, and typically related to resource constraints (e.g., lack of dedicated time to perform clinical duties, limited funding, high caseload, inadequate staffing, treatment space), the desire to develop culturally sensitive and inclusive practice, increased training and involvement in research and education, and the need for evidence-based practice guidelines.

The shift in practice during COVID-19 was seen in both positive and negative ways. Overall, the shift to telehealth during the pandemic highlighted barriers and disparities that existed in access to health care for many patients and families. Results recognized the clear benefits of remote work and virtual care, while also highlighting limitations and potential risk, particularly overuse as necessitated by the situation. Thus, these results highlight the need for a balanced approach to work and care that involves virtual technologies as a tool for increasing access, efficiency, and quality of care.

Implications for Professional Practice in Nursing and Allied Health

The information obtained through this survey highlights the adaptability of allied health and nursing professionals throughout transplant programs across the world, specifically the eleven countries represented in the survey. Additionally, reflected is the high value of multidisciplinary teamwork. It also highlights the importance of research on the role and scope of AHNP in transplant care and helps to further support and promote direct funding for AHNP within the transplant team globally. The survey results have been compiled as two separate manuscripts and are currently under review with the Journal of Pediatric Transplantation.

The IPTA Allied Health and Nursing Committee is working towards addressing the expressed needs of AHNPs that were elucidated from the survey (e.g., barriers to practice, training in research, education, evidence-based practice guidelines). Specifically, the committee is working towards providing further education and mentorship in the areas of research, practical resources such as business case development, ways to advocate for resources within an institution, and sharing professional knowledge and resources amongst AHNP professionals to enhance international pediatric transplant care.

Conversations during the AHNP business meeting as part of the 2022 IPTA Congress began to further define ways the committee can support allied health and nursing professionals in these areas. Some of these include, but are not limited, to:

• Group research projects such as systematic or scoping reviews
• Educational webinars on a variety of allied health topics
• Resource bank with shared materials and guidelines
• Increasing membership connection via Zoom and/or at IPTA Congress
• Professional development skills (e.g., journal reviews, business cases)
• Mentorship between allied health and nursing professionals

The Allied Health and Nursing Professional Committee leadership and members are excited to be turning the results of this survey into tangible opportunities and resources for AHNPs across transplant centers around the world. If you are interested in learning more, please reach out to committee co-chairs, Gillian Mayersohn (Gillian.Mayersohn@bjc.org) or Ashley Graham (Ashley.Graham@sickkids.ca).