Chronic kidney disease (CKD) is a progressive condition characterized by persistent abnormalities in kidney structure or function, associated with accelerated cardiovascular disease, severe infections and premature death [1]. The global prevalence of CKD is increasing mainly due to the pandemic of obesity and type 2 diabetes, affecting more than 10% of the global population [2]. Haemodialysis (HD) is the most common form of kidney replacement therapy. Although technology and patient access to HD have advanced significantly, impaired quality of life, morbidity and mortality rates remain high [3]. Kidney transplantation is regarded as the optimal treatment offering enhanced survival and improved quality of life in comparison with HD [4].

CKD and kidney transplantation affect not only the people with kidney failure but also their partners. Partners face significant psychological distress, such as anxiety and depression due to their spouse’s illness and transplantation [5, 6]. Partners of people in dialysis experience considerable physical and psychological burden due to constant responsibility overload. They often struggle with overwhelming demands associated with caregiving, balancing complex practical and emotional-stressing roles, and uncertainty about the patient’s health [7–10].

The impact of kidney transplantation on partners, has been studied primarily quantitatively focusing on post-transplant psychological status and dyadic coping. Dyadic coping is positively associated with mental and physical quality of life of both patient and caregiver [11], emotional functioning, wellbeing and relationship quality and satisfaction [12, 13]. Following kidney transplantation, partners report reduced caregiver burden, anxiety, depression [14–16], and improvements in overall quality of life, sleep quality, social life, sexual relationships, and stress [17]. However, Rodrigue et al. found that most partners still experience high strain after kidney transplantation, likely due to ongoing post-transplant care or comorbidities [18].

Few qualitative studies investigate the experiences of partners of kidney transplant recipients. Hann et al. studied the experiences of partners of simultaneous pancreas-kidney recipients, who reported persistent worry about their spouses health, enhanced responsibilities and neglect of their own health and wellbeing with an immediate effect on their health, wellbeing, relationships and work [19]. Following transplantation, partners felt relief and return to normality, but still experienced stress related to recovery and potential complications. Researchers emphasise that more in-depth qualitative research regarding the impact of kidney transplantation on partners is needed understand the refined complexities of their situation and to address gaps in understanding how they are affected [7, 8, 20]. Furthermore, in-depth data that highlight the nuances among different cultural backgrounds are of importance. The study seeks to provide a deeper understanding of the experience of the—largely overlooked in research—partners of deceased or living kidney transplant recipients, in the specific cultural environment of Greece, with the ultimate aim to highlight the partners’ voices and formulate adequate support interventions.

The research questions were:

How did the partners of people who have undergone kidney transplantation experience their spouse’s illness?

This qualitative study explored the experience and needs of partners of people who have undergone kidney transplantation, an often overlooked group despite their central role incoping, adherence and overall transplant process. The overarching message emerging from the findings is that the transplant recipient and partner function as one psychosocial unit. The illness trajectory is experienced dyadically, indicating that partners are actively involved, suffer in parallel-sometimes silently- and carry the emotional weight on behalf of their partner. Despite this, partners have little space to express their distress, receive support, or be acknowledged within healthcare services, making them the “invisible heroes” of the journey.

This dyadic perspective resonates with the concept of the “we-desease” [23] and the framing of the person with kidney failure and their partner as a psychosocial dyad [24]. Across all themes, partners described sustained involvement in all phases of their spouse’s chronic illness pre-, during and post-transplantation, highlighting that kidney disease is not an individual challenge but a shared experience. Thus, transplantation is framed through a dyadic lens, involving emotional support, empathy, joint problem-solving [25, 26].

Although kidney disease and transplantation were experienced as a shared journey, partners’ own experiences remained largely invisible, as reflected in the theme The secondary presence: Partners in the background. Aligning with previous research, partners often suppress their emotions and significantly downplay their contribution to caregiving [27–32]. This was also reflected with Kim and Lee’s notion of “the fading of caregiver’s own life” [33].

This pattern may reflect the moral and social framing of caregiving as an obligation [34, 35], together with healthcare systems that promote patient-centered focus [36]. Caregivers in a recent study reported feeling excluded and undervalued by healthcare teams, despite their contribution, indicating graft-centered care [37]. The study’s results emphasize how transplant teams should attend to partners’ neglected experiences, encourage self-care and prevent a mental and physical collapse. Within this context, partners’ unmet needs remained largely explicitly voiced, highlighting the need to uncover’ implicit needs during critical phases of the transplant trajectory, such as the dialysis and the waiting list period.

Different challenges marked different critical phases, as it emerged from the second theme, From Illness to a New Normal. Dialysis was seen by participants as the most burdensome stage, characterized by anxiety and uncertainty, consistent with previous research [31, 38–40]. For partners, dialysis represented a period of vulnerability and significant restrictions, with transplantation representing both relief and an escape from constraints.

Transplantation was initially experienced as liberation bringing relief and restored normality in daily functioning aligning with earlier findings [15–17]. However, many partners also experienced stress about organ rejection and complications and some experienced emotional strain or decline in wellbeing after the transplantation. This was also reflected in Rodrigue’s et al. study, showing that partners experience considerable caregiving strain both before and after transplantation [18], whereas a recent study reported family members’ anxiety and uncertainty about transplant failure and sudden death of their loved-one [41].

These mixed findings suggest that the post-transplant period may represent a second critical phase for partners. While the immediate caregiving demands decrease, their suppressed emotions and needs surface. This may reflect shifts in their role—from caregiver to spouse [42] —which can bring both relief and emotional collapse as the need to remain strong subsides [32, 43]. These findings underscore the importance of investigating partners’ outcomes over different phases of the process in order to develop tailored interventions targeted at stage-specific challenges.

Adding a unique perspective, findings highlighted that these challenges were experienced relationally through processes of dyadic coping. The fourth theme, Redefining the We, showed that illness often strengthened relationships, fostering communication, emotional closeness, and mutual support. In similar findings, couples report high relationship satisfaction after transplantation [44], while the shared experience of the illness has been reported to lead to new dimensions of intimacy, a stronger bond, and a sense of fulfillment [34, 40, 45]. Participants viewed illness as a shared challenge through dyadic coping, involving emotional support, empathy, joint problem-solving [25, 26].

However, the broader literature presents a more nuanced picture, with several studies reporting relationship strain and sexual relationship dissatisfaction [17, 46, 47]. The lack of negative reports may reflect volunteer bias, as those with a positive relationship were more willing to participate [48] or may have avoided discussing sensitive topics such as sexuality.

Assessing couples’ relationships before transplantation may help design interventions that strengthen dyadic coping and adaptation. Since dyadic coping predicts partner’s wellbeing and adjustment [44], it likely contributed to relationship satisfaction and adaptation observed. Future research should focus on both partners’ perspective using mixed methods to better understand shared adaptation and inform couple focused interventions.Given partners’ central role in the transplantation process as part of a psychosocial dyad, support and information needs emerged. Consistent with previous studies, partners often lacked sufficient knowledge about the illness, dialysis, caregiving, and post-transplant care [37, 43, 49–51]. Unmet information needs can negatively affect partners’ wellbeing and caregiving ability [52, 53], highlighting the importance of tailored guidance. Healthcare professionals should provide individualized information and prepare partners for caregiving, considering each family’s needs and capacities [54]. Educational materials and programs on kidney disease and its treatments could further address these gaps. Future research should assess information needs, and evaluate educational interventions.

Despite significant burden, transplantation was experienced as a Life-Changing Lesson, reflecting personal growth, resilience, and gratitude. Participants emphasized acceptance, optimism, and faith, developing inner strength and appreciation for life, consistent with post-traumatic growth and resilience [55, 56]. With studies highlighting positive aspects of caregiving [7, 57, 58], these insights promote that meaning-making and resilience could enhance psychosocial support for partners.

This study has several limitations. As a qualitative study, findings are based on subjective interpretation and are not generalizable. The small, predominately female and heterogeneous sample limited exploration of subgroup differences (e.g., rural vs. urban). The sample appeared highly motivated, and relationally stable, often reporting good pre-existing relationships and successful transplant outcomes. Partners with fewer coping resources or less supportive relationships may experience significantly greater distress and remain underrepresented.Experiences of individuals in newer relationships or after separation may also differ. Finally, the limited discussion of challenges and unmet needs, may have restricted the full understanding of partners’ experiences.

This study demonstrates that kidney transplantation is not solely an individual medical event but a shared, relational experience that affects both recipients and their partners. Partners take over a central yet often underrecognized role, carrying significant emotional, practical and relational responsibilities while consistently prioritizing the recipient’s needs over their own. These findings highlight the need for a holistic, dyad-oriented, approach that includes partners in care and provides tailored psychosocial support across all stages of the transplant journey. Implementing couple-based interventions may enhance adaptation and wellbeing for both partners and people with CKD.