Chronic kidney disease (CKD) affects approximately 13% of the global population. This condition is often associated with comorbidities such as diabetes and hypertension. Although its prevalence increases with age, CKD can also affect younger individuals, particularly women of childbearing age. From the early stages, CKD may lead to female-specific clinical manifestations, such as reduced fertility, occurring at a key period of life. These clinical aspects may also be accompanied by concerns about the transmission of hereditary nephropathy and may generate a significant psychological burden. However, current knowledge regarding the lived experience of young women of childbearing age with CKD remains limited, particularly in France.
The main objective of this study is to explore the lived experience of young women with CKD who are not receiving kidney replacement therapy. In this study, lived experience refers to how participants perceive, make sense of, and integrate CKD into their daily lives and future life plans. Twelve participants with CKD, not transplanted and not on dialysis, will be recruited and divided into two groups: six women with genetically determined CKD and six women with non-genetic CKD. This grouping is justified by the fact that the etiology of the disease may profoundly influence lived experience. Genetic CKD is often associated with concerns regarding familial transmission and early medical follow-up, whereas non-genetic CKD may be perceived as an acquired condition occurring later in life. Data will be collected through semi-structured interviews based on a tailored interview guide. Transcripts will be analysed using Interpretative Phenomenological Analysis (IPA), which allows exploration of the meaning that each participant attributes to her experience.
This is an exploratory pilot study aiming to document, for the first time in France, the lived experience of young women with CKD, with a secondary focus on the potential impact of genetic versus non-genetic etiology. Particular attention will be given to themes related to sexual and reproductive health. The findings will contribute to a better understanding of this understudied population and may ultimately improve their clinical care.
Women aged ≥ 18 years, cisgender, and not menopausal
Patients under follow-up at Caen University Hospital for chronic kidney disease
Patients not receiving renal replacement therapy (i.e., not on dialysis or kidney transplantation)
Patients who have been informed about the study and provided consent to participate
Patients not covered by a national health insurance system
Patients under legal protection (guardianship, curatorship, or legal safeguard)
Patients with insufficient proficiency in French (spoken and written) to understand study information, participate in the interview, and complete the quality-of-life questionnaire
Patients unable to attend in-person visits at the Centre Universitaire des Maladies Rénales (CUMR)
Women of childbearing age with chronic kidney disease (CKD) not receiving renal replacement therapy (i.e., not on dialysis or kidney transplantation), followed at Caen University Hospital (CHU de Caen). Participants will be divided into two groups according to CKD etiology: genetic and non-genetic.
Other
Cross-sectional
Not listed
Lived experience of chronic kidney disease in women of childbearing age (without renal replacement therapy)
Exploration of participants' lived experience of CKD, including perceptions of the disease, impact on daily life, and influence on future life plans, collected through semi-structured interviews and analysed using Interpretative Phenomenological Analysis (IPA).
Impact of chronic kidney disease etiology (genetic vs non-genetic) on lived experience
Exploratory comparison of lived experiences between participants with chronic kidney disease of genetic and non-genetic etiology.
Emergent themes related to sexual and reproductive health
Identification of emerging themes related to sexual and reproductive health during semi-structured interviews.
Health-related quality of life (KDQOL-36)
Assessment of health-related quality of life using the KDQOL-36 questionnaire, providing domain-specific and overall quality-of-life scores.
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