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

Overview

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.

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.