When kidney transplantation is not an option: Haemodialysis patients' and partners' experiences—A qualitative study

Abstract

Aim To investigate the experiences and perspectives of everyday life among patients on lifelong haemodialysis and their partners. Design A qualitative exploratory study with a phenomenological–hermeneutic approach. Method Data were collected through individual interviews. In total, five patients in haemodialysis and their partners were included in the study. Data were analysed with inspiration from Ricoeur's theory around narratives and interpretation on three levels: naïve reading, structural analysis and critical interpretation and discussion. Data was collected between February 2018–June 2019. Results Limitations caused by the disease and time‐consuming treatment influenced daily life. In particular, the partners needed to have time on their own. Knowledge about the disease and participation in treatment were significant to both patients and partners. There were considerations about illness progression. Relationships to their social networks and healthcare professionals were a significant and important part of daily life for both parties.

Patients' with chronic kidney disease and their relatives' perspectives on advance care planning: A meta‐ethnography

“…To the patients with CKD, it was of considerable value that their family members have involved in the illness and treatment trajectory and knew about their preferences, values, and goals for life. The involvement of relatives during illness and treatment provides a common starting point and helps patients and relatives to feel that they are managing life with CKD as a team (Frandsen et al, 2020). Furthermore, involvement gives both parties sufficient mental resources and a sense of control to manage situations related to everyday life with CKD (Frandsen et al, 2020).…”

“…The involvement of relatives during illness and treatment provides a common starting point and helps patients and relatives to feel that they are managing life with CKD as a team (Frandsen et al, 2020). Furthermore, involvement gives both parties sufficient mental resources and a sense of control to manage situations related to everyday life with CKD (Frandsen et al, 2020). In line with this, the present meta‐ethnography showed how relatives experienced a lack of involvement and a need to be involved so that they could support their sick relative and be a party to shared decision‐making.…”

“…A diagnosis of CKD does not impact the patient alone. Literature has shown that close relatives are also impacted in a number of ways, and that family members constitute a significant part of shared life with the patient (Frandsen et al, 2020; Kang et al, 2011). Relatives feel a sense of commitment to their sick loved ones and experience informal caregiving to be tough and tiring (Kang et al, 2011).…”

“…Relatives feel a sense of commitment to their sick loved ones and experience informal caregiving to be tough and tiring (Kang et al, 2011). They feel emotional pressure and powerlessness in relation to the ill person and are impacted by issues such as lifestyle changes and changes to family situations caused by the illness (Frandsen et al, 2020; Kang et al, 2011). Close relatives often represent the most important source of support for patients and are expected to be involved during periods of disease progression and death by the healthcare system (Kang et al, 2011).…”

Symptom Experiences and Needs of Older Persons Living with Hemodialysis in Relation to Integrating Home Telehealth into Holistic End of Life Care: Phase I

“…There are considerations about illness progression, and an education program based on a theory and concept of self-management and health promotion principles is recommended to improve health-related quality of life for people living with CKD (Fung et al, 2017;Pungchompoo et al, 2019). Relationships with people in their social networks and with healthcare professionals are a significant and important part of daily life for both parties (Frandsen et al, 2020). An adequate patient understanding of CKD has therefore become a central focus of management to prevent CKD progression; there is a clear association between poor health literacy and adverse outcomes, but greater ESRD patient preparedness is associated with an improvement in health outcomes.…”