Adolescents' perception of living with end stage renal disease

BACKGROUND: End stage renal disease (ESRD) is a serious chronic condition, requiring life-long treatment and management to survive. It is unclear how the unique developmental needs of adolescents influence their ability to maintain the complex medical treatment regimen associated with ESRD. PURPOSE: The purpose of this study was to explore the perception of adolescents living with ESRD. Ascertaining the subjective perspectives of the adolescent provides insight into the effects of the chronic condition on their development and well-being. METHOD: Q-methodology was used to assess the adolescent's perception of living with ESRD. Thirty-five adolescents, 13 to 18 years, who were on renal dialysis or had received a renal transplant served as participants. FINDINGS: The results of the analysis identified four significant factors. The factors represented four distinct perspectives held by these adolescents living with ESRD: (a) normalization, (b) illness intrusion: barrier to normalcy; (c) illness management: parent-focused; and (d) illness management: self-focused. CONCLUSION: Overall, the majority of the adolescents in this study held a more positive perspective of living with ESRD than what has been described previously in the literature. The findings of this exploratory study provide direction for future research and nurses in practice.

Duke Scholars

Author Marion English Broome School of Nursing