Self‐management challenges and support needs among kidney transplant recipients: A qualitative study

• Published in: Journal of advanced nursing 2018-10, Vol.74 (10), p.2393-2405
• Main Authors: Been‐Dahmen, Janet M. J., Grijpma, Jan Willem, Ista, Erwin, Dwarswaard, Jolanda, Maasdam, Louise, Weimar, Willem, Van Staa, AnneLoes, Massey, Emma K.
• Format: Article
• Language: English
• Subjects: Activities of daily living; Adaptation, Psychological; Adequacy; Adult; Aged; Challenges; Content analysis; Coping; Efficacy; Emotions; end‐stage renal disease; Feedback; Female; Humans; intervention development; Kidney diseases; Kidney Transplantation - psychology; Kidney transplants; Male; Middle Aged; Nurse led services; Nurse's Role; Nurses; organ transplantation; Patient Education as Topic; Personal experiences; Professional training; Qualitative Research; Self-Management; self‐care; Social issues; Social Support; the Netherlands; Transplant Recipients - psychology; Transplants & implants
• ISSN: 0309-2402; 1365-2648
• DOI: 10.1111/jan.13730

Aims This study investigated self‐management challenges and support needs experienced by kidney transplant recipients. Background After kidney transplantation, recipients are expected to take an active role in self‐management. However, evidence suggests that nurses experience difficulties operationalizing self‐management support. Greater insight into the recipients’ perspective could help to improve the adequacy and efficacy of nurse‐led self‐management support. Design A cross‐sectional qualitative study. Methods Focus groups and individual interviews were carried out with kidney transplant recipients treated in a Dutch university hospital. Directed content analysis (DCA) was used. Results Forty‐one kidney transplant recipients participated. Challenges after transplantation included becoming an expert patient, adjusting daily life activities, dealing with medical regimen, forming relationships with nurses, dealing with social consequences, dealing with emotions related to transplantation and the donor and improving self‐image. To be able to deal with these challenges, participants wished to receive disease specific knowledge and instruction, share personal experiences with fellow patients, share and discuss not only medical but also emotional and social issues with nurses and wanted to be encouraged through positive feedback. “One‐size fits all” education was considered insufficient in meeting their needs. Conclusions After kidney transplantation, recipients experienced various challenges in dealing with the medical, emotional and social tasks. Current support from nurses overlooked recipients’ emotional and social support needs. Nurses need adequate tools and training to be able to meet recipients’ self‐management support needs. 摘要 目的 本研究调查了肾移植受者的自我管理挑战和支持需求。 背景 接受肾移植后,受者应在自我管理方面发挥积极作用。然而,有证据表明,护士在实施自我管理支持方面遇到困难。更深入地了解肾移植受者的观点有助于提高护士主导的自我管理支持工作的充分性和有效性。 设计 横断面定性研究。 方法 对在荷兰大学医院接受肾移植手术的受者,进行了小组讨论与个别谈话。采用了定向内容分析(DCA)法。 结果 41名肾移植受者参与了本次研究。移植后的挑战包括积累经验,调整日常生活,应对治疗规程,与护士建立关系,应对社会影响,处理与移植和捐赠者相关的情绪以及改善自我形象。为了能够应对这些挑战,参与者希望获得与疾病相关的专业知识和指导,与同类患者分享个人经验,不仅与护士分享和讨论与医疗方面的问题,还分享和讨论情感问题和社会问题,并希望通过积极的反馈来获得鼓励。 人们认为“通用型”的教育不足以满足他们的需求。 结论 在肾移植后,受者在处理医疗问题、情感问题和社会问题时遇到了各种挑战。目前护士给予的支持忽视了肾移植受者希望获得情感支持和社会支持的需求。护士需要拥有适当的工具并经过适当的培训足才能满足肾移植受者获得自我管理支持方面的需求。