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 be accompanied by concerns regarding the transmission of hereditary nephropathy and can 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 not requiring renal replacement therapy. Lived experience is understood as the set of experiences related to CKD, including perceptions of the disease, its impact on daily life, and on 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 inherited 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 under-researched population and may ultimately improve their clinical care.

This study is a qualitative study using Interpretative Phenomenological Analysis (IPA) based on semi-structured interviews. IPA is particularly well suited to exploring the meaning individuals attribute to their lived experiences. The choice of this methodology is justified by the nature of the research question. Exploring the lived experience of patients with a chronic illness requires consideration of a wide range of issues, including identity-related, relational, and emotional dimensions, which go beyond the strictly biomedical aspects usually addressed. Compared with more descriptive qualitative approaches such as thematic analysis, IPA allows access to the complexity of subjective experience, namely the personal meaning given to illness and the way it is integrated into daily life and future life projects. It is therefore particularly appropriate for highlighting the lived experience of a condition often described as "invisible".

This psychological approach is grounded in a phenomenological perspective, as it explores how participants perceive and experience illness, rather than providing an objective description of symptoms or medical trajectories. It is also based on the principle of double hermeneutics: the researcher seeks to make sense of the participant's account, while the participant is making sense of their own experience. Finally, IPA is idiographic, as it prioritises an in-depth analysis of individual cases before any attempt at generalisation or comparison. The analysis will be conducted on small samples to allow for a detailed and in-depth examination of each case. The sample will therefore consist of 12 participants (two groups of six participants). Participants will be at least 18 years old (for legal reasons) and not menopausal (which would correspond to the cessation of ovarian function).

Data will be collected through semi-structured interviews based on a tailored interview guide. The first part of the interview will be dedicated to a free narrative. The discussion will therefore evolve according to the participant's responses, allowing the researcher to explore the themes that emerge as priorities for the participant. The second part will consist of a more guided exploration, in which topics identified in the literature as relevant will be introduced to allow further discussion. The interview guide will be developed in collaboration with a psychologist. Prior to data collection, it will be tested with a patient expert who is a member of a patient association for individuals with kidney disease, in order to assess the relevance of the questions and adjust them if necessary. This patient will not be included in the study sample. In line with the IPA approach, the interview guide may be modified and refined throughout the study to accommodate emerging themes.

In addition to the interviews, participants will complete the KDQOL-36 questionnaire (Kidney Disease Quality of Life-36). This is a widely used standardized instrument for assessing quality of life in patients with chronic kidney disease. Responses are collected using Likert-type scales, allowing the calculation of domain-specific scores and an overall quality-of-life score. The questionnaire will be administered after the interview in order to avoid influencing participants' narratives and the IPA analysis. The resulting scores will be descriptive and will help situate each participant's overall experience of the disease, thereby enriching the contextual understanding of each interview.

Finally, a comparison between themes emerging from the interviews and the dimensions assessed by the KDQOL-36 will make it possible to identify aspects of lived experience that are potentially not covered or insufficiently addressed by the instrument, but which are nevertheless meaningful for participants.

Inclusion Criteria:

• 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

Exclusion Criteria:

• 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)
• Patients with comorbid conditions other than chronic kidney disease that may interfere with the study objectives (e.g. conditions affecting fertility)

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.

Individual participant data will not be shared due to the sensitive and potentially identifiable nature of qualitative interview data. Participants' confidentiality will be ensured in accordance with ethical and regulatory requirements.