Balancing everyday life—Patients’ experiences before, during and four months after kidney transplantation

Nielsen, Charlotte; Clemensen, Jane; Bistrup, Claus; Agerskov, Hanne

doi:10.1002/nop2.225

Cited by 15 publications

(10 citation statements)

References 18 publications

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“…Patients and HCPs collaborated in developing a solution, guided by the needs of the users in clinical practice (Nielsen, Agerskov, Bistrup, & Clemensen, 2019a, 2019bNielsen, Clemensen, Bistrup, & Agerskov, 2019). The telehealth solution took the form of a new workflow for follow-up consultations and an app for kidney transplant patients as listed in Table 1.…”

Section: The Telehealth Solutionmentioning

confidence: 99%

Evaluation of a telehealth solution developed to improve follow‐up after kidney Transplantation

Nielsen

Agerskov

Bistrup

et al. 2020

Journal of Clinical Nursing

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Aim To explore patients’ and healthcare professionals’ experiences of using a telehealth solution developed to improve follow‐up after kidney transplantation. Background Transplantation is the treatment of choice whenever feasible for patients with end‐stage kidney disease. However, it implies lifelong adherence of self‐monitoring, medicine and other restrictions to ensure successful outcomes. Based on user involvement, a telehealth solution was developed to support patients and healthcare professionals post‐transplantation. Design An explorative qualitative study with a phenomenological‐hermeneutic approach. Methods The developed app and workflow for follow‐up were tested by patients and healthcare professionals and evaluated with interviews. In total, 16 patients and 20 healthcare professionals participated. Individual interviews were conducted with the patients, four nurses participated in two sets of interviews, and 16 doctors participated in a focus group. Data were analysed with inspiration from Ricoeur's theory of interpretation, on three levels: Naïve reading, structural analysis and critical interpretation and discussion. The COREQ checklist was applied in reporting the study. Results Three themes emerged: Challenging conditions for training sessions, telehealth improves patient reflection and collaboration, and telehealth gives patients a voice in consultations. In a challenging time, post‐transplantation patients found the app easy to use; it facilitated support and reflection on how to manage. It also supported both patients and healthcare professionals at follow‐up consultations in terms of enhanced preparation, improved dialogue and enabling consultations by phone. Conclusion The study showed that patients and healthcare professionals found the app and workflow valuable and easy to use. The Patient Data feature in the app has potential as a communication tool. However, adjustments and further investigations are needed to develop the solution. Relevance to clinical practice The potential of telehealth brings new opportunities to provide treatment and care to newly transplanted patients. Telehealth can support both patients and health professionals by improving dialogue and collaboration.

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Section: The Telehealth Solutionmentioning

confidence: 99%

Evaluation of a telehealth solution developed to improve follow‐up after kidney Transplantation

Nielsen

Agerskov

Bistrup

et al. 2020

Journal of Clinical Nursing

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“…Consequently, patients’ lived experiences with and perspectives on ESKD treatment have been the subjects of a growing number of qualitative studies to gain insight that may inform person-centered practice, policy, and research ( 8 ). These studies have advanced understanding of patients’ day-to-day experiences, needs, concerns, challenges or difficulties, responsibilities, beliefs, attitudes, values, priorities, and coping strategies related to ESKD treatment ( 9 – 13 ).…”

Section: Introductionmentioning

confidence: 99%

“I Wish Someone Had Told Me That Could Happen”: A Thematic Analysis of Patients’ Unexpected Experiences With End-Stage Kidney Disease Treatment

DePasquale

Cabacungan

Ephraim

et al. 2019

Journal of Patient Experience

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Background: Preparedness regarding prognosis and treatment options enables patients to cope with uncertainties, make value-based treatment decisions, and set treatment goals. Yet, little is known about the expectedness of end-stage kidney disease (ESKD) patients’ treatment experiences beyond their desire for better treatment education. Objective: To describe unexpected adverse treatment experiences among ESKD patients. Method: The authors conducted 7 focus groups with 55 dialysis patients and living-donor kidney transplantation recipients receiving medical care in Baltimore, Maryland. Data were analyzed thematically. Themes present in different treatment groups were highlighted to provide insight into common experiences. Results: The authors identified 5 themes: (1) psychological reactions, (2) constrained freedom of choice, (3) treatment delivery and logistics, (4) morbidity, and (5) finances. Conclusion: Patients were unprepared for nonclinical, logistical, and clinical aspects of ESKD treatment. The need for providers’ use of tailored preparatory techniques and the development of pretreatment interventions to help patients know what to expect from and feel psychologically prepared for treatment, particularly with respect to nonclinical implications, is critical. These efforts have great potential to improve patients’ treatment experiences.

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“…An overview of the ethnographic findings from phase 1, upon which the first workshop was based. 29,30 Ethnographic investigations (phase 1) 150 h of participant observations 11 semi-structured interviews with patients A focus group with healthcare professionals…”

Section: Laboratory Testsmentioning

confidence: 99%

User involvement in the development of a telehealth solution to improve the kidney transplantation process: A participatory design study

Nielsen

Agerskov

Bistrup

et al. 2019

Health Informatics J

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Kidney transplantation is the treatment of choice for patients with end-stage renal disease, and leads to everyday self-management of this chronic condition. This article aims to provide documentation for a participatory design study of a telehealth solution to improve the kidney transplantation process, and to identify the impact from the different participants in the participatory design study. Through a participatory design approach, a smartphone application (app) was developed for the entire kidney transplantation process together with a workflow for post-transplantation follow-up. A core element in participatory design is user involvement. By way of workshops and laboratory tests, the telehealth solution was developed in close cooperation with patients, their families, healthcare professionals, kidney association representatives, and Information Technology designers. The participatory design approach means that the telehealth solution was designed to be functional in a clinical setting, address patients’ needs, and support their self-management.

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Balancing everyday life—Patients’ experiences before, during and four months after kidney transplantation

Cited by 15 publications

References 18 publications

Evaluation of a telehealth solution developed to improve follow‐up after kidney Transplantation

Evaluation of a telehealth solution developed to improve follow‐up after kidney Transplantation

“I Wish Someone Had Told Me That Could Happen”: A Thematic Analysis of Patients’ Unexpected Experiences With End-Stage Kidney Disease Treatment

User involvement in the development of a telehealth solution to improve the kidney transplantation process: A participatory design study

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