Living With Chronic Kidney Disease Without Renal Replacement Therapy: Experience of Women of Childbearing Age

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 provides deeper 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 seeks to make sense of her 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 of age and premenopausal.

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 an expert patient 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 used for descriptive purposes only 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 captured 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)