Suffering: A Counterpoint of Adherence to Treatment in Child and Adolescent Chronic Renal Disease

  • Cristina Célia de Almeida Pereira Santana
  • Alessandra Vitorino Naghettini
  • Ana Tereza Vaz de Souza Freitas
  • Gilson Oliveira Barreto
  • Igor Sousa de Avelar
  • Renata Mazaro-Costa
Keywords: Chronic Renal Disease; Suffering; Health education; Adherence to treatment.


Objectives:  Reflect on the suffering caused by the routine imposed by the Chronic Renal Disease and its correlation with the adherence to the treatment by children and adolescents in hemodialysis treatment. Method: A descriptive and exploratory field research, with a qualitative approach focused on the educational processes in health teaching. The population was constituted by patients between 4 and 14 years old, their relatives and professionals. The data were obtained by means of documentary analysis and interviews, between March and June 2017, in two dialysis units in the city of Goiânia, Goiás. For the analysis of the data we opted for Content Analysis in the modality of Thematic analysis. The steps guided by Bardin (2016) using the Software Analysis of Qualitative Data 7.5.1 were used for the manual treatment. The study obeyed the ethical precepts and was approved by the Research Ethics Committee. Results: The final sample consisted of seven patients between 10 and 14 years old, 89% of the total enrolled in the municipality, seven family members and 15 professionals. In the categorization of the data emerged the categories: socioeconomic conditioners, support network, educational exclusion and the impact of the suffering in the adhesion. It was found that four families had incomes of less than two minimum wages, as well as the absence of their own housing, certifying that poor conditions culminate in social determinants of health and are related to the development of diseases (Ingelfinger, Kalantar-Zadeh, & Schaefer, 2016). It has been shown that resources outside the therapeutic unit are scarce with greater complexity, requiring organization towards the major centers. In the study, only two participants were residents of the municipality, and the mean displacement to attend the hemodialysis sessions was three hours, demonstrating disruption of continuity in health care (Schulman-Green, Jaser, Park, & Whittemore, 2016; Cherchiglia et al., 2018). The routine imposed by the treatment indicated to collaborate for the educational exclusion, since all the participants presented damages related to school attendance. Five demonstrated partial knowledge about their pathology and treatment, as well as fragile adherence to therapeutics for the prevention of complications. Understanding the educational process as a fundamental tool to provide individuals with the necessary learning to guarantee self-care, this data becomes relevant (Li, Jiang, & Lin, 2014; Ghadam et al., 2016).Feelings such as anxiety and fear, related to the occurrence of complications and painful procedures, as well as, the social isolation determined by the restrictions or stereotypes about the disease were also reported. In the child and adolescent population, changes usually have a greater impact, mainly on quality of life (Abreu, Nascimento, De Lima, & Dos Santos, 2015; Nerbass et al., 2017).

In contrast, it was observed a dynamics that seems to favor the construction of a network of interpersonal relations. This, coupled with a receptive care team, can provide adaptation and coping, increasing the chances of adherence to therapy (Li, Jiang, & Lin, 2014; Campos, Mantovani, Nascimento, & Cassi, 2015). Conclusion: The study allowed us to consider that the context is permeated by experiences that cause suffering, negatively influencing the process of health promotion and contributing to the low adherence to therapy.