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Slominska A, Loban K, Kinsella EA, Ho J, Sandal S. Supportive care in transplantation: A patient-centered care model to better support kidney transplant candidates and recipients. World J Transplant 2024; 14:97474. [PMID: 39697448 PMCID: PMC11438939 DOI: 10.5500/wjt.v14.i4.97474] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/31/2024] [Revised: 07/31/2024] [Accepted: 08/06/2024] [Indexed: 09/20/2024] Open
Abstract
Kidney transplantation (KT), although the best treatment option for eligible patients, entails maintaining and adhering to a life-long treatment regimen of medications, lifestyle changes, self-care, and appointments. Many patients experience uncertain outcome trajectories increasing their vulnerability and symptom burden and generating complex care needs. Even when transplants are successful, for some patients the adjustment to life post-transplant can be challenging and psychological difficulties, economic challenges and social isolation have been reported. About 50% of patients lose their transplant within 10 years and must return to dialysis or pursue another transplant or conservative care. This paper documents the complicated journey patients undertake before and after KT and outlines some initiatives aimed at improving patient-centered care in transplantation. A more cohesive approach to care that borrows its philosophical approach from the established field of supportive oncology may improve patient experiences and outcomes. We propose the "supportive care in transplantation" care model to operationalize a patient-centered approach in transplantation. This model can build on other ongoing initiatives of other scholars and researchers and can help advance patient-centered care through the entire care continuum of kidney transplant recipients and candidates. Multi-dimensionality, multi-disciplinarity and evidence-based approaches are proposed as other key tenets of this care model. We conclude by proposing the potential advantages of this approach to patients and healthcare systems.
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Affiliation(s)
- Anita Slominska
- MEDIC Program, Research Institute of the McGill University Health Centre, Montreal H4A3J1, QC, Canada
| | - Katya Loban
- MEDIC Program, Research Institute of the McGill University Health Centre, Montreal H4A3J1, QC, Canada
| | - Elizabeth Anne Kinsella
- Institute of Health Sciences Education, Faculty of Medicine and Health Sciences, McGill University, Montreal H4A3J1, QC, Canada
| | - Julie Ho
- Department of Medicine, University of Manitoba, Winnipeg R3A1R9, MB, Canada
| | - Shaifali Sandal
- Department of Medicine, McGill University Health Centre, Montreal H4A3J1, QC, Canada
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Matsumura N, Mizukawa M, Sato K, Hashino A, Kazawa K, Naka M, Huq KATME, Moriyama M. Factors Influencing Self-Management Behaviors Among Patients with Post-Kidney Transplantation: A Qualitative Study of the Chronic Phase Transition. Healthcare (Basel) 2024; 12:2264. [PMID: 39595462 PMCID: PMC11594251 DOI: 10.3390/healthcare12222264] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/11/2024] [Revised: 11/11/2024] [Accepted: 11/11/2024] [Indexed: 11/28/2024] Open
Abstract
BACKGROUND Kidney transplantation is an effective treatment for patients with kidney failure. Despite the advances in technology, a certain number of patients still deteriorate due to improper management. The purpose of this study was to identify the promoting and inhibitory factors that influence recipients' self-management behaviors after a kidney transplant. METHODS We enrolled participants who had kidney transplants for more than one year, aged ≥20 years from outpatient clinics in Japan. Face-to-face interviews were conducted between April and December 2016. RESULTS Nine participants were included in this study. By qualitative content analysis, 115 codes and 8 categories were extracted for the factors resulting in maintenance and the promotion of self-management behaviors; those were [attentiveness to changes in one's own body], [good partnership with medical care providers], [past painful experiences], [establishment of lifestyle habits], [autonomy to protect one's own body], [support from family and others], [gratitude for kidney donation], and [increased self-efficacy]. We also extracted three categories that inhibited self-management behavior: [fading threat of worsening disease], [shifting priorities], and [decreased motivation to control the disease]. CONCLUSIONS The passage of time after transplant became a barrier to continue self-management. Providing knowledge about the importance of self-management can prevent the deterioration of kidney function over time after a transplant.
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Affiliation(s)
- Naoko Matsumura
- Community Cooperation & Medical Support Office, Tokuyama Central Hospital, Yamaguchi 745-0822, Japan;
| | - Mariko Mizukawa
- Ichikan Nursing Development Center for Diversity, Kobe City College of Nursing, Kobe 651-2103, Japan
| | - Kanae Sato
- Department of Nursing, Yasuda Women’s University, Hiroshima 731-0153, Japan;
| | - Asuka Hashino
- Graduate School of Biomedical and Health Sciences, Hiroshima University, Hiroshima 734-8553, Japan; (A.H.); (K.K.); (K.A.T.M.E.H.); (M.M.)
- Department of Nursing, Faculty of Life Sciences, Kumamoto University, Kumamoto 862-0976, Japan
| | - Kana Kazawa
- Graduate School of Biomedical and Health Sciences, Hiroshima University, Hiroshima 734-8553, Japan; (A.H.); (K.K.); (K.A.T.M.E.H.); (M.M.)
- Faculty of Health Sciences, Okayama University, Okayama 700-8558, Japan
| | - Makiko Naka
- Heart Failure Center, Hiroshima University Hospital, Hiroshima 734-0037, Japan;
| | - K. A. T. M. Ehsanul Huq
- Graduate School of Biomedical and Health Sciences, Hiroshima University, Hiroshima 734-8553, Japan; (A.H.); (K.K.); (K.A.T.M.E.H.); (M.M.)
| | - Michiko Moriyama
- Graduate School of Biomedical and Health Sciences, Hiroshima University, Hiroshima 734-8553, Japan; (A.H.); (K.K.); (K.A.T.M.E.H.); (M.M.)
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Bruschwein H, Chen G, Balliet W, Hart J, Canavan K, Jesse M. Lessons learned: Development of an organ transplant caregiver educational resource. CLINICAL TEACHER 2024; 21:e13691. [PMID: 37904630 DOI: 10.1111/tct.13691] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/15/2023] [Accepted: 10/02/2023] [Indexed: 11/01/2023]
Abstract
BACKGROUND Organ transplant lay caregivers perform an essential and complex role, but there is a paucity of comprehensive, accessible education regarding transplant caregiving. We sought to create a broad, multifaceted educational toolkit for transplant caregivers. Given the complexities of this population, we report on lessons learned by organising diverse stakeholder engagement to develop an educational resource covering the breadth and depth of organ transplantation. APPROACH Following a call from organ transplant patients and caregivers, the American Society of Transplantation (AST) formed an Organ Transplant Caregiver Initiative with the aim to develop a comprehensive educational toolkit for transplant caregivers. The AST Organ Transplant Caregiver Toolkit was created through a shared, multi-step process involving transplant professionals and caregivers, who formed an education subcommittee to develop and refine content domains. The caregiver toolkit was reviewed with relevant external stakeholders and through an internal organisational review process. EVALUATION Lessons learned included seeking guidance from others with experience creating similar resources, flexibility in project development, creativity in engaging stakeholders and routine communication between all entities involved. Insights gained contributed to the caregiver toolkit completion despite project challenges. IMPLICATIONS The AST Organ Transplant Caregiver Toolkit can be utilised by health care professionals to educate and counsel transplant patients and caregivers. Lessons learned from the development of the caregiver toolkit can provide guidance to health care professionals and clinical teachers for the development of future education resources.
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Affiliation(s)
- Heather Bruschwein
- Psychiatry and Neurobehavioral Sciences, University of Virginia School of Medicine, Charlottesville, Virginia, USA
| | - Gloria Chen
- Abdominal Transplant Center, Dell Seton Medical Center at The University of Texas, Austin, Texas, USA
| | - Wendy Balliet
- Psychiatry and Behavioral Science, Medical University of South Carolina, Charleston, South Carolina, USA
| | - Jan Hart
- Transplant Center, Ascension St. Vincent, Indianapolis, Indiana, USA
| | | | - Michelle Jesse
- Transplant Institute, Henry Ford Health System, Detroit, Michigan, USA
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Gad MM, Rasmussen MK, Ladefoged HB, Mathiesen LL, Finderup J. The phenomenon of urinary tract infection experienced by women with a kidney transplant. J Ren Care 2024; 50:159-167. [PMID: 37076761 DOI: 10.1111/jorc.12467] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/22/2022] [Revised: 02/19/2023] [Accepted: 04/02/2023] [Indexed: 04/21/2023]
Abstract
BACKGROUND Urinary tract infection is the most common infection among people with a kidney transplant and increases the risk of graft rejection. Women have a higher risk. A literature search did not identify any description of the phenomenon of urinary tract infection experienced by women with a kidney transplant. OBJECTIVE To examine how women with a kidney transplant experienced the phenomenon of a urinary tract infection. DESIGN A qualitative study with a phenomenological approach. APPROACH Eight individual semistructured interviews based on van Manen's four lifeworld existentials and analysed using systematic text condensation. PARTICIPANTS Women with a kidney transplant and recently been admitted to the hospital due to a urinary tract infection. FINDINGS We identified four themes: (1) Feeling both typical and atypical symptoms; (2) Becoming aware of the body and trying her best to prevent urinary tract infection; (3) Having a urinary tract infection is a dual experience, both good and bad; (4) Support from relatives. CONCLUSION The urinary tract infection symptoms pathway varied between participants but also between individual episodes of incidents among each participant. Participants felt secure when they experienced a common symptom pattern, but a new symptom pattern made them insecure. Together with their relatives, they experienced a urinary tract infection as a disruption of their everyday life and it decreased their experiences of happiness. They experienced to be supported by relatives but also by healthcare professionals, but needed more information on how to prevent, observe and react to a urinary tract infection in the future.
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Affiliation(s)
- Mette Marie Gad
- Department of Anaesthesiology and Intensive Care, Aarhus University Hospital, Aarhus, Denmark
| | | | | | | | - Jeanette Finderup
- Department of Renal Medicine, Aarhus University Hospital, Aarhus, Denmark
- Department of Clinical Medicine, Aarhus University, Aarhus, Denmark
- ResCenPI-Research Centre for Patient Involvement, Aarhus University & The Central Denmark Region, Aarhus, Denmark
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Loor JM, Ford CG, Leyva Y, Swift S, Ng YH, Zhu Y, Dew MA, Peipert JD, Unruh ML, Croswell E, Kendall K, Puttarajappa C, Shapiro R, Myaskovsky L. Do pre-transplant cultural factors predict health-related quality of life after kidney transplantation? Clin Transplant 2024; 38:e15256. [PMID: 38400674 PMCID: PMC11249207 DOI: 10.1111/ctr.15256] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/24/2023] [Revised: 01/16/2024] [Accepted: 01/24/2024] [Indexed: 02/25/2024]
Abstract
BACKGROUND Post-transplant health-related quality of life (HRQOL) is associated with health outcomes for kidney transplant (KT) recipients. However, pretransplant predictors of improvements in post-transplant HRQOL remain incompletely understood. Namely, important pretransplant cultural factors, such as experience of discrimination, perceived racism in healthcare, or mistrust of the healthcare system, have not been examined as potential HRQOL predictors. Also, few have examined predictors of decline in HRQOL post-transplant. METHODS Using data from a prospective cohort study, we examined HRQOL change pre- to post-transplant, and novel cultural predictors of the change. We measured physical, mental, and kidney-specific HRQOL as outcomes, and used cultural factors as predictors, controlling for demographic, clinical, psychosocial, and transplant knowledge covariates. RESULTS Among 166 KT recipients (57% male; mean age 50.6 years; 61.4% > high school graduates; 80% non-Hispanic White), we found mental and physical, but not kidney-specific, HRQOL significantly improved post-transplant. No culturally related factors outside of medical mistrust significantly predicted change in any HRQOL outcome. Instead, demographic, knowledge, and clinical factors significantly predicted decline in each HRQOL domain: physical HRQOL-older age, more post-KT complications, higher pre-KT physical HRQOL; mental HRQOL-having less information pre-KT, greater pre-KT mental HRQOL; and, kidney-specific HRQOL-poorer kidney functioning post-KT, lower expectations for physical condition to improve, and higher pre-KT kidney-specific HRQOL. CONCLUSIONS Instead of cultural factors, predictors of HRQOL decline included demographic, knowledge, and clinical factors. These findings are useful for identifying patient groups that may be at greater risk of poorer post-transplant outcomes, in order to target individualized support to patients.
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Affiliation(s)
- Jamie M Loor
- Center for Healthcare Equity in Kidney Disease (CHEK-D), University of New Mexico Health Sciences, Albuquerque, New Mexico, USA
| | - C Graham Ford
- Durham VA Medical Center, Durham, North Carolina, USA
| | - Yuridia Leyva
- Center for Healthcare Equity in Kidney Disease (CHEK-D), University of New Mexico Health Sciences, Albuquerque, New Mexico, USA
| | - Samuel Swift
- College of Population Health, University of New Mexico, Albuquerque, New Mexico, USA
| | - Yue Harn Ng
- Department of Internal Medicine, University of Washington, Seattle, Washington, USA
| | - Yiliang Zhu
- Department of Internal Medicine, University of New Mexico, School of Medicine, Albuquerque, New Mexico, USA
| | - Mary Amanda Dew
- Department of Psychiatry, University of Pittsburgh, School of Medicine, Pittsburgh, Pennsylvania, USA
| | - J Devin Peipert
- Department of Medical Social Sciences and Transplant Outcomes Research Collaboration, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA
| | - Mark L Unruh
- Department of Internal Medicine, University of New Mexico, School of Medicine, Albuquerque, New Mexico, USA
| | - Emilee Croswell
- Department of Psychiatry, University of Pittsburgh, School of Medicine, Pittsburgh, Pennsylvania, USA
| | | | - Chethan Puttarajappa
- Department of Medicine, University of Pittsburgh, School of Medicine, Pittsburgh, Pennsylvania, USA
| | - Ron Shapiro
- Mount Sinai Recanati/Miller Transplantation Institute, Icahn School of Medicine, New York, USA
| | - Larissa Myaskovsky
- Center for Healthcare Equity in Kidney Disease (CHEK-D), University of New Mexico Health Sciences, Albuquerque, New Mexico, USA
- Department of Internal Medicine, University of New Mexico, School of Medicine, Albuquerque, New Mexico, USA
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Fox D, Hall M, Thibodeau C, Coldwell K, Lauder L, Dewell S, Davidson S. Impact of the COVID-19 pandemic on Canadian transplant journeys: a mixed methods study. BMJ Open 2023; 13:e068347. [PMID: 38040429 PMCID: PMC10693860 DOI: 10.1136/bmjopen-2022-068347] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/15/2022] [Accepted: 11/20/2023] [Indexed: 12/03/2023] Open
Abstract
BACKGROUND Navigating the organ donation and transplantation system in Canada can be challenging for individuals on transplant journeys. Although it is likely that the COVID-19 pandemic has further contributed to these challenges, the experiences of individuals during the pandemic in Canada have not been well elicited. OBJECTIVE To illuminate how the COVID-19 pandemic has impacted individuals on transplant journeys in Canada. DESIGN Convergent parallel mixed-methods study. SETTING Canada. PARTICIPANTS Adult patients, caregivers, and donors on transplant journeys across Canada. DATA COLLECTION Eight focus groups and an online survey between May and November 2021. Focus group transcripts were analysed using an inductive conventional content analysis approach. Survey data were analysed using descriptive statistics. The study was guided by individuals with lived experience of organ donation and transplantation. RESULTS A total of 830 participants completed three COVID-19 related survey questions, with 21 participating in the focus groups. Survey results: over 50% of patients and caregivers reported that the pandemic impacted their access to their healthcare team, their mental health (60% and 65%, respectively) and their comfort going out in public (80% and 75%, respectively). Although many donors reported several factors that impacted their transplant journey, the impact appeared to be greater for patients and caregivers. Qualitative results: three themes emerged from the qualitative data that contextualise participant's experiences: compounding isolation, disruption amid uncertainty and unforeseen benefits. CONCLUSION The COVID-19 pandemic has exacerbated many of the challenges that individuals on transplant journeys experience. It will be critical for transplant programmes to consider these factors in future care provision.
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Affiliation(s)
- Danielle Fox
- Community Health Sciences, University of Calgary, Calgary, Alberta, Canada
| | - Marc Hall
- Faculty of Nursing, University of Calgary, Calgary, Alberta, Canada
| | | | - Kristi Coldwell
- Transplant Research Foundation of British Columbia, Vancouver, British Columbia, Canada
| | - Lydia Lauder
- Kidney Foundation of Canada, Montreal, Québec, Canada
| | - Sarah Dewell
- School of Nursing, Thompson Rivers University, Kamloops, British Columbia, Canada
| | - Sandra Davidson
- Faculty of Nursing, University of Calgary, Calgary, Alberta, Canada
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Chong HJ, Kim HK. Adaptation Process After Kidney Transplantation in Older Adult Recipients: Applied Grounded Theory. Res Gerontol Nurs 2023; 16:183-193. [PMID: 37159389 DOI: 10.3928/19404921-20230503-01] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 05/11/2023]
Abstract
Despite the increase in older adults receiving kidney transplantation (KT), little is known about their experience and adaptation process after KT. The current study aimed to explore the process of adaptation after KT in older adult recipients using a qualitative design and grounded theory methodology. Sixteen recipients who had KT at age ≥60 years and received follow-up care were recruited at a university hospital in South Korea. Data were collected from July to December 2017 through in-depth interviews with individual participants. The core theme of the adaptation process after KT in older adult recipients was A Journey of Straining to Save the Last Lifeline. The adaptation process comprised three stages: confusion, depression, and compromise. Tailored interventions based on the in-depth understanding of the adaptation process found in the current study are needed to improve adaptation after KT in older adult recipients. [Research in Gerontological Nursing, 16(4), 183-193.].
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Lin K, Wei C, Li J, Guo X, Gao F, Zhao P, Liu H. Development and validation of the Chinese version of the self-management support scale for kidney transplant recipients. BMC Nurs 2023; 22:128. [PMID: 37072844 PMCID: PMC10111319 DOI: 10.1186/s12912-023-01269-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/26/2022] [Accepted: 03/25/2023] [Indexed: 04/20/2023] Open
Abstract
BACKGROUND Providing self-management support to kidney transplant recipients is essential. However, a scale to identify the self-management support they have received is lacking. The purpose of this study is to develop a Self-management Support Scale for Kidney Transplant Recipients (SMSSKTR) and test its psychometric properties. METHODS This is an instrument development and validation study, which has a three-stage cross-sectional design. In Stage 1, a preliminary item pool was formed using a literature review, semi-structured interviews, and the Delphi method. In Stage 2, six experts were invited to assess content validity. A convenience sample of 313 participants was used to explore the factor structure by using exploratory factor analysis. The test-retest reliability was assessed using the intra-class correlation coefficient (ICC). In Stage 3, two hundred and sixty-five participants were recruited to validate the factor structure by using confirmatory factor analysis. Convergent validity was examined using Spearman's correlation coefficient. Cronbach's alpha coefficient and corrected item-total correlation coefficient were used to test the reliability of the entire scale and its dimensions. The study was reported according to the STARD and GRRAS checklists. RESULTS An initial 40-item scale was developed in Stage 1. In Stage 2, three factors with 22 items emerged from the exploratory factor analysis: instrumental support, psychosocial support, and relational support. The content validity index of the scale was 0.97. The intra-class correlation coefficient for the entire scale and the subscales were 0.915, 0.771, 0.896, and 0.832, respectively. In Stage 3, the confirmatory factor analysis indicated that the three-factor model had a good fit. The score of the scale was positively associated with that of the Self-Management Scale of Renal Transplant Recipients (r = 0.532). Cronbach's alpha was 0.959 for the entire scale and 0.956-0.958 for the three subscales. The corrected item-total correlation coefficient ranged from 0.62 to 0.82. CONCLUSION The 22-item SMSSKTR has sufficient psychometric properties to assess the self-management support they have received, which has not been measured before.
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Affiliation(s)
- Keke Lin
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
| | - Changyun Wei
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
| | - Jiaqi Li
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
| | - Xuejie Guo
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China
| | - Fengli Gao
- Nursing Department, Beijing Chao-Yang Hospital, Capital Medical University, Beijing, China
| | - Peiyu Zhao
- Nursing Department, China-Japan Friendship Hospital, Beijing, China
| | - Hongxia Liu
- School of Nursing, Beijing University of Chinese Medicine, Beijing, China.
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9
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Jobst S, Stadelmaier J, Zöller P, Grummich K, Schmucker C, Wünsch A, Kugler C, Rebafka A. Self-management in adults after solid-organ transplantation: a scoping review protocol. BMJ Open 2023; 13:e064347. [PMID: 36693696 PMCID: PMC9884941 DOI: 10.1136/bmjopen-2022-064347] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/28/2022] [Accepted: 01/10/2023] [Indexed: 01/26/2023] Open
Abstract
INTRODUCTION After solid-organ transplantation (SOTx), recipients must adhere to a lifelong medical regimen, change their lifestyle and cope with physiological and psychosocial challenges. This requires active participation in their care and self-management abilities. The concept of self-management after SOTx has only been described regarding specific organs and focused on adherence to medical treatment. A comprehensive conceptualisation of self-management entailing all solid organs and beyond medical aspects does not exist. This might lead to unmet self-management support needs of SOTx recipients and hinder a more holistic and integrative approach in self-management support. Therefore, a better understanding of the concept of self-management after SOTx is needed to facilitate a comprehensive evidence base for healthcare providers and researchers. The purpose of this scoping review is to explore existing evidence on self-management in adults after SOTx. METHODS AND ANALYSIS To identify relevant evidence, six electronic databases and three study registers will be searched, supplemented by handsearches, reference checking and expert recommendations. Screening and selection of available evidence will be carried out in a two-step process by two independent reviewers. International evidence published in English or German reporting on adults after heart, lung, liver, pancreas, kidney or small bowel transplantation will be considered. To meet inclusion criteria, articles have to focus on either: self-management, self-management support or recipients' or healthcare providers' perspectives of challenges and needs potentially addressable by self-management. Data extraction will be performed by two reviewers independently using a structured form. Data will be analysed descriptively and using content analysis procedures. Findings will be summarised narratively and presented in tabular format. ETHICS AND DISSEMINATION The consultation and approval of an ethics committee is not required for this scoping review. Findings of the scoping review will be published in a peer-reviewed open-access journal and presented at conferences.
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Affiliation(s)
- Stefan Jobst
- Institute of Nursing Science, Faculty of Medicine, University of Freiburg, Freiburg, Germany
| | - Julia Stadelmaier
- Institute for Evidence in Medicine, Medical Center - University of Freiburg, Faculty of Medicine, Freiburg, Germany
| | - Petra Zöller
- Dean's Office, University of Freiburg Faculty of Medicine, Freiburg, Germany
| | - Kathrin Grummich
- Institute for Evidence in Medicine, Medical Center - University of Freiburg, Faculty of Medicine, Freiburg, Germany
- Cochrane Germany, Cochrane Germany Foundation, Freiburg, Germany
| | - Christine Schmucker
- Institute for Evidence in Medicine, Medical Center - University of Freiburg, Faculty of Medicine, Freiburg, Germany
| | - Alexander Wünsch
- Freiburg university Medical Center, Department of Psychosomatic Medicine and Psychotherapy, Freiburg, Germany
| | - Christiane Kugler
- Institute of Nursing Science, Faculty of Medicine, University of Freiburg, Freiburg, Germany
| | - Anne Rebafka
- Institute of Nursing Science, Faculty of Medicine, University of Freiburg, Freiburg, Germany
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10
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Chung SY, Bakas T, Rawl SM, Welch J, Jones J, Ellis R, Hacker ED. The Kidney Transplant Self-Management Scale: Instrument Development and Psychometric Testing. West J Nurs Res 2023; 45:34-45. [PMID: 35148648 DOI: 10.1177/01939459211072368] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
This study reports the development and psychometric testing of the Kidney Transplant Self-Management Scale (KT-SMS). The instrument development phase included the following: (a) conceptual definition, item generation, and framework; (b) face validity assessment; and (c) content validity assessment. The psychometric testing phase included the following: (a) construct validity testing; (b) internal consistency reliability testing; (c) convergent validity testing; and (d) predictive power of the KT-SMS using a cross-sectional sample of kidney transplant recipients (N = 153). Factor analysis results supported the 16-item KT-SMS as multidimensional with five domains (medication adherence, cardiovascular risk reduction, protecting kidney, ownership, and skin cancer prevention). Internal consistency reliability for the total scale and five subscales was adequate. Convergent validity was supported as the intercorrelations of the KT-SMS total score with the five subscales were significant. The KT-SMS total score and five subscales were significantly correlated with self-efficacy for managing chronic disease, patient activation, and health-related quality of life.
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Affiliation(s)
- Shu-Yu Chung
- School of Nursing, Indiana University-Purdue University Indianapolis, Indianapolis, IN, USA
| | - Tamilyn Bakas
- College of Nursing, University of Cincinnati, Cincinnati, OH, USA
| | - Susan M Rawl
- School of Nursing, Indiana University-Purdue University Indianapolis, Indianapolis, IN, USA
| | - Janet Welch
- School of Nursing, Indiana University-Purdue University Indianapolis, Indianapolis, IN, USA
| | - Josette Jones
- School of Informatics and Computing, Indiana University-Purdue University Indianapolis, Indianapolis, IN, USA
| | - Rebecca Ellis
- School of Nursing, Indiana University-Purdue University Indianapolis, Indianapolis, IN, USA
| | - Eileen D Hacker
- School of Nursing, Indiana University-Purdue University Indianapolis, Indianapolis, IN, USA
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11
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van Klaveren CW, de Jong PG, Hendriks RA, Luk F, de Vries AP, van der Boog PJ, Rabelink A, Reinders ME. Didactical characteristics of Dutch websites about kidney transplantation targeted for kidney patients and living donors: An exploratory study. PEC INNOVATION 2022; 1:100026. [PMID: 37213764 PMCID: PMC10194093 DOI: 10.1016/j.pecinn.2022.100026] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 11/01/2021] [Revised: 02/25/2022] [Accepted: 03/03/2022] [Indexed: 05/23/2023]
Abstract
Objective The aim was to explore the origin, content topics, teaching modes (instruction, interaction, and assessment), and corresponding social-epistemological dimensions (choices in knowledge transfer vs. knowledge building, and individual vs. group learning) of web-based information on kidney transplantation targeted for patients and living donors. Methods Dutch websites on kidney transplantation were retrieved using the search engine Google.nl. From 24 websites, 250 webpages were examined on origin, content topics, teaching modes, and corresponding social-epistemological dimensions. Results The majority of the websites had a professional organization as origin (20/24). The number and distribution of content topics varied among the websites. Of the 16 different teaching modes found, 11 were instructional, 4 were interactional, and 1 assessment mode was found. The websites offered almost exclusively teaching modes on individual and passive learning, whereas group learning and interactive knowledge building was hardly encountered. Conclusion The diversity in teaching modes and social-epistemological dimensions of Dutch websites on kidney transplantation targeted for patients and living donors is limited. The websites only provided a partial view on kidney transplantation; information regarding contact with others, e.g. support, was limited. A more balanced availability of teaching approaches and content topics is desirable to fit with the didactical goals to make well-considered health decisions.
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Affiliation(s)
- Charlotte W. van Klaveren
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, the Netherlands
- Corresponding author.
| | - Peter G.M. de Jong
- Center for Innovation in Medical Education, Leiden University Medical Center, Leiden, the Netherlands
| | - Renée A. Hendriks
- Center for Innovation in Medical Education, Leiden University Medical Center, Leiden, the Netherlands
| | - Franka Luk
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, the Netherlands
| | - Aiko P.J. de Vries
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, the Netherlands
| | - Paul J.M. van der Boog
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, the Netherlands
| | - A.J. Rabelink
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, the Netherlands
| | - Marlies E.J. Reinders
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, the Netherlands
- Erasmus MC Transplant Institute, Department of Internal Medicine, University Medical Center Rotterdam, Rotterdam, the Netherlands
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12
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Cossart AR, Staatz CE, Isbel NM, Campbell SB, Cottrell WN. Exploring Transplant Medication-Taking Behaviours in Older Adult Kidney Transplant Recipients: A Qualitative Study of Semi-Structured Interviews. Drugs Aging 2022; 39:887-898. [PMID: 36175739 PMCID: PMC9626420 DOI: 10.1007/s40266-022-00975-6] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 08/17/2022] [Indexed: 01/05/2023]
Abstract
Background Today, older adult patients routinely undergo kidney transplantation. To support graft survival, patients must take immunosuppressant medicines for the rest of their lives. The post-transplant medication regimen is complex, and barriers to medication taking are likely confounded by both functional and intrinsic changes associated with advancing age. To develop diverse and innovative approaches to support best health outcomes in this vulnerable age group, it is imperative that the degree to which patients’ needs are currently being met, be identified. Aim The aim of this study was to examine medication-taking behaviours of kidney transplant recipients transplanted at 60 years of age or older. Methods This qualitative study used semi-structured patient interviews to explore how kidney transplant recipients currently manage their immunosuppressant regimen and how they cope after transplantation with the complex routine. Data were themed using the principles of Grounded Theory methodology; with interviews conducted until data saturation was reached. Results Quantitative information was collected from 14 participants who ranged in age from 66 to 77 years (at time of interview), and were prescribed a median of 13 (min: 10, max: 26) medicines. The main themes that emerged from the interview were variability in health literacy toward medicines, the importance of support networks, the need to adjust health expectations, factors that were motivators for self-care, different approaches to medication management, and different approaches to medication taking. Overall, it was found that patients prioritised medication taking above all else, and gratitude to their donor was a powerful motivator to adhere. However, strategies to support medication taking were sometimes ineffective when patients’ routine changed. Conclusions Future interventions should consider approaches to foster adaptable medication taking behaviours that stand up to changes in the day-to-day routine. Medication taking is complicated in transplant recipients, due to the number of medicines that need to be taken and the complex nature of the treatment regimen. Challenges in older transplant recipients may be more pronounced and varied compared with younger adults. There are multiple factors that may impact medication taking in older adults and each requires consideration, including level of dependence, living arrangements, level of mobility and manual dexterity, vision and memory, and social situation. To better identify the gaps in support, patients’ current perspectives around medication taking and how they cope after transplantation must be explored. Therefore, this study aimed to identify how older adult transplant recipients currently manage their anti-rejection medicine regimen. Participants described several strategies around how they manage a complex medication regimen. These included cues such as an alarm and linking the time they should take their medication to already established habits such as eating meals. Most participants discussed at length their relationships, and it seems that these relationships are often crucial to post-transplant positivity. Additionally, extreme gratitude to the donor, relative improvement in their life quality (compared with the rapid deterioration in their health when on dialysis), and fear of consequences (particularly graft failure) were important facilitators of self-care and served as timely reminders to prioritise one’s own health. To foster more robust medication-taking habits, future education needs to be tailored to each individual patient and include details about how to link medication taking to already established routines (coined ‘habit stacking’).
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Affiliation(s)
- Amelia R Cossart
- School of Pharmacy, University of Queensland, Woolloongabba, 20 Cornwall Street, QLD, 4102, Australia.
| | - Christine E Staatz
- School of Pharmacy, University of Queensland, Woolloongabba, 20 Cornwall Street, QLD, 4102, Australia
| | - Nicole M Isbel
- Department of Nephrology, University of Queensland at the Princess Alexandra Hospital, Brisbane, Australia
| | - Scott B Campbell
- Department of Nephrology, University of Queensland at the Princess Alexandra Hospital, Brisbane, Australia
| | - W Neil Cottrell
- School of Pharmacy, University of Queensland, Woolloongabba, 20 Cornwall Street, QLD, 4102, Australia
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13
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Memory KE, Wilkinson TJ, Smith AC, Lightfoot CJ. A qualitative exploration of the facilitators and barriers to self-management in kidney transplant recipients. J Nephrol 2022; 35:1863-1872. [PMID: 35467326 PMCID: PMC9035973 DOI: 10.1007/s40620-022-01325-w] [Citation(s) in RCA: 12] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/23/2022] [Accepted: 03/27/2022] [Indexed: 11/26/2022]
Abstract
Background Understanding the behaviours that facilitate or impede one’s ability to self-manage is important to improve health-related outcomes in kidney transplant recipients (KTRs). Previous studies exploring the self-management experiences of KTRs have focused on specific tasks (e.g., medication adherence), age groups (e.g., adolescent or older recipients), or have been conducted outside of the UK where transferability of findings is unknown. Our study aimed to explore the perceptions and experiences of self-management in UK KTRs to identify facilitators and barriers associated with self-management tasks. Methods Semi-structured interviews were conducted with eleven KTRs. Topics explored included experiences of self-management tasks (diet, exercise, medications, stress management), perceived healthcare role, and future interventional approaches. Thematic analysis was used to identify and report themes. Results Eight themes were identified which were mapped onto the three self-management tasks described by Corbin and Strauss: medical, role and emotional management. Perceived facilitators to self-management were: gathering health-related knowledge, building relationships with healthcare professionals, creating routines within daily life, setting goals and identifying motivators, establishing support networks, and support from family and friends. Complexity of required treatment and adjusting to a new health status were perceived barriers to self-management. Conclusions Participants described the importance of collaborative consultations and continuity of care. Tailored interventions should identify individualised goals and motivators for participating in self-management. Education on effective strategies to manage symptoms and comorbidities could help alleviate KTRs’ perceived treatment burden. Family and peer support could emotionally support KTRs; however, managing the emotional burden of transplantation warrants more attention. Graphic abstract ![]()
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Affiliation(s)
- Katherine E Memory
- Leicester Medical School, University of Leicester, Leicester, UK
- Leicester Kidney Lifestyle Team, Department of Health Sciences, University of Leicester, Leicester, UK
| | - Thomas J Wilkinson
- Leicester Kidney Lifestyle Team, Department of Health Sciences, University of Leicester, Leicester, UK
| | - Alice C Smith
- Leicester Kidney Lifestyle Team, Department of Health Sciences, University of Leicester, Leicester, UK
| | - Courtney J Lightfoot
- Leicester Kidney Lifestyle Team, Department of Health Sciences, University of Leicester, Leicester, UK.
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14
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Ohashi T, Akazawa C. Content Validity of a Self-Management Behavior Assessment Tool for Adult Post-Renal Transplant Recipients Using a Modified Delphi Method. Health (London) 2022. [DOI: 10.4236/health.2022.141007] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
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15
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Nair D, Cukor D, Taylor WD, Cavanaugh KL. Applying A Biopsychosocial Framework to Achieve Durable Behavior Change in Kidney Disease. Semin Nephrol 2021; 41:487-504. [PMID: 34973694 PMCID: PMC8751979 DOI: 10.1016/j.semnephrol.2021.10.002] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/26/2022]
Abstract
Chronic disease self-management is the establishment and maintenance of behaviors needed to be an active participant in one's health care and experience the best health outcomes. Kidney disease self-management behaviors to slow disease progression include engaging in exercise or physical activity; adhering to a diet low in sodium, potassium, and phosphorus; monitoring laboratory parameters; managing complex medication regimens; coping with disease-related emotional distress; and communicating effectively with providers. Durable behavior change has been difficult to achieve in kidney disease, in part because of an incomplete understanding of the multilevel factors determining chronic disease self-management in this patient group. The biopsychosocial model of chronic illness care posits that an individual's health outcomes result from biological, psychological, social, and environmental factors as part of a multilevel systems hierarchy. Although this theoretical model has been used to comprehensively identify factors driving self-management in other chronic conditions, it has been applied infrequently to behavioral interventions in kidney disease. In this scoping review, we apply the biopsychosocial model of health to identify individual, interpersonal, and systems-level drivers of kidney disease self-management behaviors. We further highlight factors that may serve as novel, impactful targets of theory-based behavioral interventions to understand and sustain behavior change in kidney disease.
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Affiliation(s)
- Devika Nair
- Division of Nephrology and Hypertension, Vanderbilt University Medical Center, Nashville, TN; Vanderbilt O'Brien Center for Kidney Disease, Nashville, TN.
| | - Daniel Cukor
- Behavioral Health Program, The Rogosin Institute, New York, NY
| | - Warren D Taylor
- Division of Geriatric Psychiatry, Vanderbilt University Medical Center, Nashville, TN
| | - Kerri L Cavanaugh
- Division of Nephrology and Hypertension, Vanderbilt University Medical Center, Nashville, TN; Vanderbilt O'Brien Center for Kidney Disease, Nashville, TN; Center for Effective Health Communication, Vanderbilt University Medical Center, Nashville, TN
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16
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Tang J, Kerklaan J, Wong G, Howell M, Scholes-Robertson N, Guha C, Kelly A, Tong A. Perspectives of solid organ transplant recipients on medicine-taking: Systematic review of qualitative studies. Am J Transplant 2021; 21:3369-3387. [PMID: 33866675 DOI: 10.1111/ajt.16613] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/18/2021] [Revised: 03/16/2021] [Accepted: 04/02/2021] [Indexed: 01/25/2023]
Abstract
Medicine-taking among transplant recipients is a complex and ubiquitous task with significant impacts on outcomes. This study aimed to describe the perspectives and experiences of medicine-taking in adult solid organ transplant recipients. Electronic databases were searched to July 2020, and thematic synthesis was used to analyze the data. From 119 studies (n = 2901), we identified six themes: threats to identity and ambitions (impaired self-image, restricting goals and roles, loss of financial independence); navigating through uncertainty and distrust (lacking tangible/perceptible benefits, unprepared for side effects, isolation in decision-making); alleviating treatment burdens (establishing and mastering routines, counteracting side effects, preparing for the unexpected); gaining and seeking confidence (clarity with knowledge, reassurance through collective experiences, focusing on the future outlook); recalibrating to a new normal posttransplant (adjusting to ongoing dependence on medications, in both states of illness and health, unfulfilled expectations); and preserving graft survival (maintaining the ability to participate in life, avoiding rejection, enacting a social responsibility of giving back). Transplant recipients take medications to preserve graft function, but dependence on medications jeopardizes their sense of normality. Interventions supporting the adaptation to medicine-taking and addressing treatment burdens may improve patient satisfaction and capacities to take medications for improved outcomes.
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Affiliation(s)
- James Tang
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Jasmijn Kerklaan
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.,Department of Pediatric Nephrology, Academic Medical Center, Emma Children's Hospital, Amsterdam, the Netherlands
| | - Germaine Wong
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.,Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW, Australia
| | - Martin Howell
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Nicole Scholes-Robertson
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Chandana Guha
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Ayano Kelly
- Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Allison Tong
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.,Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
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17
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Dahl KG, Wahl AK, Urstad KH, Falk RS, Andersen MH. Changes in Health Literacy during the first year following a kidney transplantation: Using the Health Literacy Questionnaire. PATIENT EDUCATION AND COUNSELING 2021; 104:1814-1822. [PMID: 33454146 DOI: 10.1016/j.pec.2020.12.028] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/24/2020] [Revised: 10/29/2020] [Accepted: 12/28/2020] [Indexed: 06/12/2023]
Abstract
OBJECTIVES The study aimed to identify changes in health literacy (HL) and associated variables during the first year following a kidney transplantation. METHODS A total of 196 transplant recipients were included in a prospective follow-up study. The patients answered the Health Literacy Questionnaire (HLQ) at 5 days, 8 weeks, 6 and 12 months following the kidney transplantation. Mixed linear models were used to analyze changes in HL and backward elimination was used to identify variables associated with HL. RESULTS Two main patterns of change were identified: a) HL increased during the first 8 weeks of close follow-up and b) in several domains, the positive increase from 5 days to 8 weeks flattened out from 5 days to 6 and 12 months. Self-efficacy, transplant-related knowledge, and general health were core variables associated with HL. CONCLUSIONS Overall, HL increased during the 8 weeks of close follow-up following the kidney transplantation, while 6 months seem to be a more vulnerable phase. Furthermore, low self-efficacy, less knowledge, and low self-perceived health may represent vulnerable characteristics in patients. PRACTICAL IMPLICATIONS Future kidney transplant care should take into account patients' access to and appraisal of health information and social support, and draw attention to potentially vulnerable groups.
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Affiliation(s)
- Kari Gire Dahl
- The Department of Transplantation Medicine, Oslo University Hospital, Oslo, Norway.
| | - Astrid Klopstad Wahl
- The Department of Transplantation Medicine, Oslo University Hospital, Oslo, Norway; The Department of Interdisciplinary Health Sciences, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway
| | - Kristin Hjorthaug Urstad
- The Faculty of Health Sciences, Department of Quality and Health Technology, University of Stavanger, Stavanger, Norway
| | - Ragnhild S Falk
- Oslo Centre for Biostatistics and Epidemiology, Oslo University Hospital, Oslo, Norway
| | - Marit Helen Andersen
- The Department of Transplantation Medicine, Oslo University Hospital, Oslo, Norway; The Department of Interdisciplinary Health Sciences, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway
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18
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Kastelz A, Fernhall B, Wang E, Tzvetanov I, Spaggiari M, Shetty A, Gallon L, Hachaj G, Kaplan B, Benedetti E. Personalized physical rehabilitation program and employment in kidney transplant recipients: a randomized trial. Transpl Int 2021; 34:1083-1092. [PMID: 33733479 DOI: 10.1111/tri.13868] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/01/2020] [Revised: 02/25/2021] [Accepted: 03/08/2021] [Indexed: 11/29/2022]
Abstract
Kidney transplantation is the preferred treatment for kidney failure; however after transplant, reduced physical function, poor self-perceptions, and unemployment are common concerns that remain. This randomized controlled trial compared the effects of a 12-month exercise rehabilitation program (intervention) to standard care alone (control) in kidney transplant recipients. The exercise intervention consisted of a 2 day/week, 60-minute personalized, one-on-one, resistance-based exercise trainings. Eighty participants completed the study (52 intervention vs. 28 control). For individuals unemployed at baseline, there was a 52.3% increase in employment compared to 13.3 % increase in the control group after 12 months (P = <0.0001). For those already employed at baseline, 100% of individuals maintained employment in both groups after 12 months (P = 0.4742). For all comers, there was a positive trend for Global Physical Health (P = 0.0034), Global Mental Health (P = 0.0064), and Physical Function (P = 0.0075), with the intervention group showing greater improvements. These findings suggest the implementation of an exercise rehabilitation program postkidney transplant can be beneficial to increase employment for individuals previously unemployed, improve self-perceived health, physical function, and mental health, overall contributing to better health outcomes in kidney transplant recipients. (Clinicaltrials.gov number: NCT02409901).
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Affiliation(s)
- Alexandra Kastelz
- Department of Surgery, University of Illinois University at Chicago, Chicago, IL, USA
| | - Bo Fernhall
- College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, USA
| | - Edward Wang
- College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, USA
| | - Ivo Tzvetanov
- Department of Surgery, University of Illinois University at Chicago, Chicago, IL, USA
| | - Mario Spaggiari
- Department of Surgery, University of Illinois University at Chicago, Chicago, IL, USA
| | - Aneesha Shetty
- Internal Medicine Nephrology, Northwestern Medical Group, Chicago, IL, USA
| | - Lorenzo Gallon
- Internal Medicine Nephrology, Northwestern Medical Group, Chicago, IL, USA
| | | | - Bruce Kaplan
- Baylor Scott and White Health System, Corporate office, Dallas, TX, USA
| | - Enrico Benedetti
- Department of Surgery, University of Illinois University at Chicago, Chicago, IL, USA
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19
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Hu S, Li Y, Quan M, Yang S, Wan Z, Yan X, Tan Z, Liang G. A Study on the Correlations of Anxiety and Depression With Self-Management Ability and Endogenous Creatinine Clearance Rate in Renal Transplant Recipients. Front Psychiatry 2021; 12:715509. [PMID: 34650453 PMCID: PMC8505718 DOI: 10.3389/fpsyt.2021.715509] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/27/2021] [Accepted: 08/31/2021] [Indexed: 11/23/2022] Open
Abstract
Objective: To explore the effects of anxiety and depression on the self-management ability and endogenous creatinine clearance rate of renal transplant patients. Method: Eighty-eight renal transplant recipients who were followed up in the outpatient clinic of the Affiliated Hospital of Zunyi Medical University were selected using convenient sampling. The self-made general data sheet, Self-Rating Anxiety Scale, Self-Rating Depression Scale, and Self-Management Scale for Kidney Transplant Recipients were used. Correlation analysis was used to find factors related to endogenous creatinine clearance, while multiple linear regression was used to identify factors influencing endogenous creatinine clearance. Patients with or without anxiety and depression were divided into groups, and the indexes of the groups were compared using the independent samples t test, rank-sum test, or chi-squared test. Results: Anxiety was present in 12.5% of patients, depression in 25%, and a moderate level of self-management in 34.1%. Only 9.1% of renal transplant recipients had endogenous creatinine clearance within the normal range, and 34.1% had a body mass index not in the normal range (25% were overweight, and 9.1% were underweight). The endogenous creatinine clearance rate was negatively correlated with age and degree of depression, and positively correlated with body mass index, treatment management score, and psychosocial management score. The main influencing factors of endogenous creatinine clearance rate were age, sex, depression, body mass index, and treatment management score. The endogenous creatinine clearance rate and psychosocial management ability were significantly higher in patients without anxiety and depression than in patients with anxiety and depression (all P < 0.05). Conclusions: Anxiety and depression showed significant negative effects on the psychosocial self-management ability and endogenous creatinine clearance rate of renal transplant recipients and thus should be given more attention.
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Affiliation(s)
- ShiMin Hu
- Department of Nephropathy and Rheumatology, Affiliated Hospital of Zunyi Medical University, Zunyi, China
| | - Yu Li
- Department of Nephropathy and Rheumatology, Affiliated Hospital of Zunyi Medical University, Zunyi, China
| | - MingTao Quan
- Nursing Department, Affiliated Hospital of Zunyi Medical University, Zunyi, China
| | - ShuJuan Yang
- Department of Nephropathy and Rheumatology, Affiliated Hospital of Zunyi Medical University, Zunyi, China
| | - ZhaoMei Wan
- Department of Nephropathy and Rheumatology, Affiliated Hospital of Zunyi Medical University, Zunyi, China
| | - XiaoYong Yan
- Department of Nephropathy and Rheumatology, Affiliated Hospital of Zunyi Medical University, Zunyi, China
| | - ZhouKe Tan
- Department of Nephropathy and Rheumatology, Affiliated Hospital of Zunyi Medical University, Zunyi, China
| | - GuoBiao Liang
- Department of Nephropathy and Rheumatology, Affiliated Hospital of Zunyi Medical University, Zunyi, China
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20
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van Klaveren CW, de Jong PGM, Hendriks RA, Luk F, de Vries APJ, van der Boog PJM, Reinders MEJ. Topics, Delivery Modes, and Social-Epistemological Dimensions of Web-Based Information for Patients Undergoing Renal Transplant and Living Donors During the COVID-19 Pandemic: Content Analysis. J Med Internet Res 2020; 22:e22068. [PMID: 32946412 PMCID: PMC7546867 DOI: 10.2196/22068] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/02/2020] [Revised: 07/28/2020] [Accepted: 09/10/2020] [Indexed: 12/23/2022] Open
Abstract
Background The COVID-19 pandemic has markedly affected renal transplant care. During this time of social distancing, limited in-person visits, and uncertainty, patients and donors are relying more than ever on telemedicine and web-based information. Several factors can influence patients’ understanding of web-based information, such as delivery modes (instruction, interaction, and assessment) and social-epistemological dimensions (choices in interactive knowledge building). Objective The aim of this study was to systemically evaluate the content, delivery modes, and social-epistemological dimensions of web-based information on COVID-19 and renal transplantation at time of the pandemic. Methods Multiple keyword combinations were used to retrieve websites on COVID-19 and renal transplantation using the search engines Google.com and Google.nl. From 14 different websites, 30 webpages were examined to determine their organizational sources, topics, delivery modes, and social-epistemological dimensions. Results The variety of topics and delivery modes was limited. A total of 13 different delivery modes were encountered, of which 8 (62%) were instructional and 5 (38%) were interactional; no assessment delivery modes were observed. No website offered all available delivery modes. The majority of delivery modes (8/13, 62%) focused on individual and passive learning, whereas group learning and active construction of knowledge were rarely encountered. Conclusions By taking interactive knowledge transfer into account, the educational quality of eHealth for transplant care could increase, especially in times of crisis when rapid knowledge transfer is needed.
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Affiliation(s)
- Charlotte W van Klaveren
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, Netherlands
| | - Peter G M de Jong
- Center for Innovation in Medical Education, Leiden University Medical Center, Leiden, Netherlands
| | - Renée A Hendriks
- Center for Innovation in Medical Education, Leiden University Medical Center, Leiden, Netherlands
| | - Franka Luk
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, Netherlands
| | - Aiko P J de Vries
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, Netherlands
| | - Paul J M van der Boog
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, Netherlands
| | - Marlies E J Reinders
- Division of Nephrology and Transplant Center, Department of Internal Medicine, Leiden University Medical Center, Leiden, Netherlands.,Division of Nephrology and Transplantation, Department of Internal Medicine, Erasmus University Medical Center, Rotterdam, Netherlands
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21
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Yang FC, Chen HM, Huang CM, Hsieh PL, Wang SS, Chen CM. The Difficulties and Needs of Organ Transplant Recipients during Postoperative Care at Home: A Systematic Review. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2020; 17:ijerph17165798. [PMID: 32796529 PMCID: PMC7459921 DOI: 10.3390/ijerph17165798] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 06/18/2020] [Revised: 07/18/2020] [Accepted: 07/21/2020] [Indexed: 02/06/2023]
Abstract
With recent advances in surgery and immunosuppressive drugs, organ transplantation has become a major treatment for irreversible organ failure. However, organ transplant recipients returning home after operation may face ongoing physiological, psychological, and social difficulties. To increase recipients’ quality of life, postoperative care at home is critical. Thus, the aim of this systematic literature review was to explore recipients’ difficulties and needs during postoperative care at home. Our search conformed to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and returned 23 relevant articles published from 1997–2020 in PubMed, MEDLINE, EBSCO, Cochrane, ProQuest, and CEPS, which were assessed using the Modified Jadad Scale or the 32 Consolidated Criteria for Reporting Qualitative Research (COREQ) appraisal indices and then synthesized through narration. The most common difficulties faced were psychological difficulties, followed by physiological, social, and other difficulties; the most common needs were psychological needs, followed by education and information training, social, and other needs. These results demonstrated that healthcare professionals can do more to provide patients with comprehensive care and promote successful self-management and quality of life at home. They also confirmed that collaboration between transplant teams, caregivers, and patients is necessary to optimize postoperative outcomes. We suggest that customized care may promote postoperative patients’ self-management and quality of life at home.
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Affiliation(s)
- Fu-Chi Yang
- College of General Education, National Chin-Yi University of Technology, Taichung 41170, Taiwan;
- Institute of Allied Health Sciences, College of Medicine, National Cheng Kung University, Tainan 701401, Taiwan
| | - Hsiao-Mei Chen
- Department of Nursing, Chung Shan Medical University, Taichung 40201, Taiwan;
| | - Chiu-Mieh Huang
- Institute of Clinical Nursing, School of Nursing, National Yang-Ming University, Taipei 11221, Taiwan;
| | - Pei-Lun Hsieh
- Department of Nursing, College of Health, National Taichung University of Science and Technology, Taichung 40343, Taiwan;
| | - Shoei-Shen Wang
- Department of Surgery, National Taiwan University Hospital, Taipei 100225, Taiwan;
- College of Medicine, National Taiwan University, Taipei 100233, Taiwan
- Department of Surgery, Fu Jen Catholic University Hospital, New Taipei City 24352, Taiwan
- School of Medicine, Fu Jen Catholic University College of Medicine, New Taipei City 242062, Taiwan
| | - Ching-Min Chen
- Department of Nursing, Institute of Allied Health Sciences, College of Medicine, National Cheng Kung University, Tainan 701401, Taiwan
- Correspondence:
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22
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Ranahan M, Von Visger J, Kayler LK. Describing barriers and facilitators for medication adherence and self-management among kidney transplant recipients using the information-motivation-behavioral skills model. Clin Transplant 2020; 34:e13862. [PMID: 32199030 DOI: 10.1111/ctr.13862] [Citation(s) in RCA: 17] [Impact Index Per Article: 3.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/24/2019] [Revised: 03/05/2020] [Accepted: 03/13/2020] [Indexed: 11/29/2022]
Abstract
BACKGROUND We aimed to develop an adapted information-motivation-behavioral skills (IMB) model to describe barriers and facilitators for adherence and self-management among kidney transplant recipients. METHODS We conducted a review of literature about kidney transplant recipients' knowledge, perceptions, and experiences and organized our results using the IMB framework. We then conducted interviews with transplant recipients and transplant providers to supplement our literature search. RESULTS Our proposed adaption of the IMB model describes informational, motivational, and behavioral skills barriers and facilitators for medication adherence and self-management among kidney transplant recipients. Moderating factors influence not only behavioral skills, but also recipients' understanding of information and motivation to adhere and practice self-management. CONCLUSION By using the IMB model to organize current research and interviews with recipients and providers, we developed an adapted model for medication adherence and self-management. Results are promising to impact future educational and behavioral interventions for kidney transplant recipients.
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Affiliation(s)
- Molly Ranahan
- Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, Buffalo, New York, USA.,Transplant and Kidney Care Regional Center of Excellence, Erie County Medical Center, Buffalo, New York, USA
| | - Jon Von Visger
- Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, Buffalo, New York, USA.,Transplant and Kidney Care Regional Center of Excellence, Erie County Medical Center, Buffalo, New York, USA
| | - Liise K Kayler
- Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, Buffalo, New York, USA.,Transplant and Kidney Care Regional Center of Excellence, Erie County Medical Center, Buffalo, New York, USA
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Nielsen C, Agerskov H, Bistrup C, Clemensen J. 'The hospital and everyday life are two worlds': Patients' and healthcare professionals' experiences and perspectives on collaboration in the kidney transplantation process. Nurs Open 2019; 6:1491-1500. [PMID: 31660177 PMCID: PMC6805260 DOI: 10.1002/nop2.349] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/01/2019] [Revised: 06/09/2019] [Accepted: 07/10/2019] [Indexed: 01/01/2023] Open
Abstract
AIM To explore patients' and healthcare professionals' experiences and perspectives on collaboration in the kidney transplantation process. DESIGN A qualitative study with a phenomenological-hermeneutic approach. METHOD Participant observation and interviews were conducted with 18 patients, together with a focus group with eight healthcare professionals from April 2016-January 2017. The data analysis was inspired by Ricoeur's theory. RESULTS While patients acknowledged that the healthcare professionals were experts, they also requested an everyday life approach to treatment and care, because both professional knowledge and everyday life experiences were needed to manage everyday life. A contrast between patients' experiences and healthcare professionals' knowledge was identified, and the empowerment approach could be a way to combine the different perspectives.
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Affiliation(s)
- Charlotte Nielsen
- Department of NephrologyOdense University HospitalOdenseDenmark
- Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
| | - Hanne Agerskov
- Department of NephrologyOdense University HospitalOdenseDenmark
- Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
| | - Claus Bistrup
- Department of NephrologyOdense University HospitalOdenseDenmark
- Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
| | - Jane Clemensen
- Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
- HCA ResearchOdense University HospitalOdenseDenmark
- Centre for Innovative Medical TechnologyOdense University HospitalOdenseDenmark
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Abstract
Introducción: La insuficiencia Renal Crónica es una enfermedad silenciosa, cuando los síntomas aparecen la persona debe ingresar a una Terapia dialítica y/o iniciar el proceso del trasplante renal. El trasplante produce una mejoría en la calidad de vida de las personas enfermas. Objetivo: Analizar de manera comprensiva la experiencia vivida por personas con Insuficiencia Renal Crónica que han sido trasplantadas y los significados del cuidado de la salud elaborados por los familiares que interactúan con estas personas. Método: Estudio cualitativo, fenomenológico-hermenéutico, empleando el referente teórico de Van Manen, 11 personas enfermas y 5 cuidadores participaron en el estudio, en la ciudad de Neiva; información recolectada a través de entrevistas en profundidad. Resultados: Al realizar el análisis emergió el tema “la esperanza de una segunda oportunidad, aprender a vivir con un órgano trasplantado”, construido alrededor de los siguientes subtemas compartidos entre las personas enfermas y los cuidadores: la donación como un regalo de Dios, la llamada que anuncia el trasplante, reconocer la finitud del órgano y volver a nacer con el trasplante. Conclusiones: La donación es un obsequio, que se espera pacientemente en el tiempo para poner fin a un tratamiento que produce miedo y desesperación. Esta alternativa de tratamiento los lleva a volver a nacer y a recuperar la vida que han perdido por el tratamiento dialítico, aunque reconozcan que este es finito.
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Massierer D, Sapir-Pichhadze R, Bouchard V, Dasgupta K, Fernandez N, da Costa D, Ahmed S, Fortin MC, Langevin R, Mayo N, Janaudis-Ferreira T. Web-Based Self-Management Guide for Kidney Transplant Recipients (The Getting on With Your Life With a Transplanted Kidney Study): Protocol for Development and Preliminary Testing. JMIR Res Protoc 2019; 8:e13420. [PMID: 31237243 PMCID: PMC6613326 DOI: 10.2196/13420] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/23/2019] [Revised: 03/25/2019] [Accepted: 04/12/2019] [Indexed: 01/19/2023] Open
Abstract
BACKGROUND Although it is well known that compared with dialysis, kidney transplantation improves the quality of life (QoL) of patients with end-stage renal disease, posttransplant recovery of physical health and other aspects of QoL remain well below age- and sex-matched norms. In addition, most transplant recipients are not physically active even years after the transplant and face several barriers to engaging in physical activity (PA). This is of concern as low levels of PA in transplant recipients has been associated with increased risk of mortality and poor graft function. Optimization of QoL needs a team approach involving the patients and the members of the health care team. While members of the health care team are focused on optimizing the biological responses to transplant, patients may have few or no tools at their disposal to engage in behaviors that optimize QoL. To accomplish the need of supporting these patients in the self-management of their condition and to facilitate engagement with PA, new tools tailored to this population are required. OBJECTIVE The aim of this protocol study is to develop a Web-based, patient-centered self-management intervention to promote a healthy lifestyle, increase daily PA, and improve QoL in kidney transplant recipients. METHODS We will use the Obesity-Related Behavioral Intervention Trials model for developing behavioral treatments for chronic diseases to guide the proposed project. We will follow a modified version of the iterative 10-step process that was used to develop educational material for people with multiple sclerosis. The development of the intervention will occur in partnership with patients and a multidisciplinary team of clinicians and researchers. A comprehensive needs assessment including data from our pilot study, literature review, and focus groups will be conducted. The focus groups will be conducted with 6 to 10 participants for each type of stakeholders: patients and professional experts to identify areas of concerns of kidney transplant recipients that are appropriate to address through self-management. The areas of concern identified through the assessment needs will be included in the website. RESULTS This study has received funding from the Kidney Foundation of Canada for 2 years (2018-2020) and was recently granted ethics approval. Investigators have begun conducting the needs assessment described in step 1 of the study. The study is expected to be completed by the end of 2020. CONCLUSIONS This will be the first comprehensive, evidence- and experience-based self-management program for kidney transplant recipients. Once the intervention is developed, we anticipate improvements in patient experience, shared decision making, daily PA, QoL, and, in future studies, improvements in health outcomes and demonstrations of cost savings in posttransplant care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID) PRR1-10.2196/13420.
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Affiliation(s)
- Daniela Massierer
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.,Canadian Donation and Transplantation Research Program, Edmonton, AB, Canada
| | - Ruth Sapir-Pichhadze
- Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.,Division of Nephrology and Multi-Organ Transplant Program, Department of Medicine, McGill University, Montreal, QC, Canada
| | - Vanessa Bouchard
- Hôpital de Chicoutimi, Centre intégré universitaire de santé et services sociaux du Saguenay-Lac-Saint-Jean, Chicoutimi, QC, Canada
| | - Kaberi Dasgupta
- Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.,Division of Endocrinology & Metabolism, McGill University Health Centre, Montreal, QC, Canada.,Division of Internal Medicine, McGill University Health Centre, Montreal, QC, Canada.,Metabolic Disorders and Complications, Research Institute of the McGill University Health Centre, Montreal, QC, Canada
| | - Nicolas Fernandez
- Department of Family Medicine and Emergency Medicine, University of Montreal, Montreal, QC, Canada
| | - Deborah da Costa
- Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.,Division of Internal Medicine, McGill University Health Centre, Montreal, QC, Canada
| | - Sara Ahmed
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada
| | | | - Rosalie Langevin
- Canadian Donation and Transplantation Research Program, Edmonton, AB, Canada
| | - Nancy Mayo
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.,Division of Clinical Epidemiology, McGill University Health Centre, Montreal, QC, Canada.,Division of Geriatrics, McGill University Health Centre, Montreal, QC, Canada
| | - Tania Janaudis-Ferreira
- School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.,Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.,Canadian Donation and Transplantation Research Program, Edmonton, AB, Canada.,Translational Research in Respiratory Diseases Program, Research Institute of the McGill University Health Centre, Montreal, QC, Canada
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26
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Jeong HW, So HS. [Structural Equation Modeling of Self-Care Behaviors in Kidney Transplant Patients Based on Self-Determination Theory]. J Korean Acad Nurs 2019; 48:731-742. [PMID: 30613060 DOI: 10.4040/jkan.2018.48.6.731] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/12/2018] [Revised: 12/10/2018] [Accepted: 12/10/2018] [Indexed: 11/09/2022]
Abstract
PURPOSE The purpose of this study was to test a hypothesis explaining direct and indirect relationships among the factors affecting self-care behaviors of kidney transplant patients, based on self-determination theory. METHODS Data were collected from 222 outpatients with kidney transplantation. The endogenous and exogenous variables of the hypothetical model consisted of healthcare provider's autonomy support, duration after kidney transplantation, basic psychological need satisfaction, autonomous and controlled motivation, depression, and self-care behaviors. Collected data were analyzed using SPSS/WIN 24.0 and AMOS 24.0. RESULTS The hypothetical model demonstrated a good fit: RMSEA=.06, SRMR=.04, TLI=.94, CFI=.97. Statistically significant explanatory variables for the self-care behaviors of kidney transplant patients were duration after transplantation and basic psychological need satisfaction. Healthcare provider's autonomy support was indirectly significant, while autonomous motivation, controlled motivation and depression were not statistically significant for self-care behaviors. The variables accounted for 59.5% of the self-care behaviors of kidney transplant patients. CONCLUSION It is necessary to develop an autonomy support program for healthcare providers to enhance the self-care behaviors of kidney transplant patients. Preventing the deterioration of self-care behaviors will be possible by conducting this program at one year and six years post-transplantation. In addition, the results suggest the need to developing personalized autonomy support programs for healthcare providers that can meet the basic psychological need satisfaction of kidney transplant patients.
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Affiliation(s)
- Hye Won Jeong
- Department of Nursing, Chonnam National University Hospital, Gwangju, Korea
| | - Hyang Sook So
- College of Nursing · Research Institute of Nursing Science, Chonnam National University, Gwangju, Korea.
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Nielsen C, Clemensen J, Bistrup C, Agerskov H. Balancing everyday life-Patients' experiences before, during and four months after kidney transplantation. Nurs Open 2019; 6:443-452. [PMID: 30918695 PMCID: PMC6419113 DOI: 10.1002/nop2.225] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/24/2018] [Revised: 10/11/2018] [Accepted: 11/09/2018] [Indexed: 12/11/2022] Open
Abstract
AIM To explore patients' experiences before, during and four months after kidney transplantation as a coherent process. DESIGN A qualitative explorative study with a phenomenological-hermeneutic approach. METHODS Participant observations and semi-structured interviews were used complementary. In total, 18 kidney recipients were included. Data were analysed in accordance with Ricoeur's theory of interpretation, on three levels: naïve reading, structural analysis and critical interpretation and discussion. RESULTS Three themes emerged: waiting time and hope during everyday life, transformation during the kidney transplantation process and towards a new everyday life with positive prospects. Going through the kidney transplantation process was challenging for the patients. Everyday life was affected through the process, and the patients had to balance the associated challenges like hope, positive prospects and health-related issues.
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Affiliation(s)
- Charlotte Nielsen
- Department of NephrologyOdense University HospitalOdenseDenmark
- Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
- Centre for Innovative Medical TechnologyOdense University HospitalOdenseDenmark
| | - Jane Clemensen
- Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
- Centre for Innovative Medical TechnologyOdense University HospitalOdenseDenmark
- HCA ResearchHans Christian Andersen Children’s Hospital, Odense University HospitalOdenseDenmark
| | - Claus Bistrup
- Department of NephrologyOdense University HospitalOdenseDenmark
- Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
| | - Hanne Agerskov
- Department of NephrologyOdense University HospitalOdenseDenmark
- Department of Clinical ResearchUniversity of Southern DenmarkOdenseDenmark
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Beck D, Been-Dahmen J, Peeters M, Grijpma JW, van der Stege H, Tielen M, van Buren M, Weimar W, Ista E, Massey E, van Staa A. A Nurse-Led Self-Management Support Intervention (ZENN) for Kidney Transplant Recipients Using Intervention Mapping: Protocol for a Mixed-Methods Feasibility Study. JMIR Res Protoc 2019; 8:e11856. [PMID: 30821694 PMCID: PMC6418486 DOI: 10.2196/11856] [Citation(s) in RCA: 13] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/07/2018] [Revised: 11/09/2018] [Accepted: 11/09/2018] [Indexed: 12/25/2022] Open
Abstract
Background Optimal self-management in kidney transplant recipients is essential for patient and graft survival, reducing comorbidity and health care costs while improving the quality of life. However, there are few effective interventions aimed at providing self-management support after kidney transplantation. Objective This study aims to systematically develop a nurse-led, self-management (support) intervention for kidney transplant recipients. Methods The Intervention Mapping protocol was used to develop an intervention that incorporates kidney transplant recipients’ and nurses’ needs, and theories as well as evidence-based methods. The needs of recipients and nurses were assessed by reviewing the literature, conducting focus groups, individual interviews, and observations (step 1). Based on the needs assessment, Self-Regulation Theory, and the “5A’s” model, change objectives were formulated (step 2). Evidence-based methods to achieve these objectives were selected and subsequently translated into practical implementation strategies (step 3). Then, program materials and protocols were developed accordingly (step 4). The implementation to test the feasibility and acceptability was scheduled for 2015-2017 (step 5). The last step of Intervention Mapping, evaluation of the intervention, falls outside the scope of this paper (step 6). Results The intervention was developed to optimize self-management (support) after kidney transplantation and targeted both kidney transplant recipients and nurse practitioners who delivered the intervention. The intervention was clustered into four 15-minute sessions that were combined with regular appointments at the outpatient clinic. Nurses received a training syllabus and were trained in communication techniques based on the principles of Solution-Focused Brief Therapy and Motivational Interviewing; this entailed guiding the patients to generate their own goals and solutions and focus on strengths and successes. Kidney transplant recipients were encouraged to assess self-management challenges using the Self-Management Web and subsequently develop specific goals, action plans, and pursuit skills to solve these challenges. Conclusions The Intervention Mapping protocol provided a rigorous framework to systematically develop a self-management intervention in which nurses and kidney transplant recipients’ needs, evidence-based methods, and theories were integrated. International Registered Report Identifier (IRRID) DERR1-10.2196/11856
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Affiliation(s)
- Denise Beck
- Section of Nephrology & Transplantation, Department of Internal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
| | - Janet Been-Dahmen
- Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, Netherlands
| | - Mariëlle Peeters
- Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, Netherlands
| | - Jan Willem Grijpma
- Section of Nephrology & Transplantation, Department of Internal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
| | - Heleen van der Stege
- Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, Netherlands
| | - Mirjam Tielen
- Section of Nephrology & Transplantation, Department of Internal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
| | - Marleen van Buren
- Section of Nephrology & Transplantation, Department of Internal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
| | - Willem Weimar
- Section of Nephrology & Transplantation, Department of Internal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
| | - Erwin Ista
- Section of Nursing Science, Department of Internal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
| | - Emma Massey
- Section of Nephrology & Transplantation, Department of Internal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
| | - AnneLoes van Staa
- Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, Netherlands.,Erasmus School Health Policy & Management, Erasmus University Rotterdam, Rotterdam, Netherlands
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Pehlivan S, Vatansever N, Arslan İ, Yildiz A, Ersoy A. Level of Daily Life Activities and Learning Needs in Renal Transplant Patients. EXP CLIN TRANSPLANT 2019; 18:498-504. [PMID: 30806203 DOI: 10.6002/ect.2018.0151] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/05/2022]
Abstract
OBJECTIVES Transplantation affects the patient's psychological state and daily life activities. Although there are various studies regarding the quality of life of patients, there are limited studies on the daily life activities and learning needs of patients after renal transplant. Here, we investigated the daily life activities and learning needs of patients after renal transplant. MATERIALS AND METHODS This descriptive and cross-sectional study was conducted on 120 renal transplant recipients. Data were collected using the "Patient Information Form," the "Nottingham Extended Activities of Daily Living Scale," and the "The Patient Learning Needs Scale." Data were evaluated with t test, analysis of variance, and Pearson correlation analyses. RESULTS In our patient group, the mean general health score was 6.8 ± 2.34, and the fatigue score was 4.53 ± 2.88. Although 66.7% of our patients reported that they had information about the drugs that they used, 58.3% could not answer questions regarding the most important adverse effects of their drugs. We found that 20% of the patients had a respiratory problem, 34.2% had sexual problems, and 26.7% had sleep problems. The average Nottingham Extended Activities of Daily Living Scale levels were lower in patients with only primary school education, patients who did not work, and patients with other illnesses. Learning needs of patients were as follows in order: quality of life, feelings related to the conditions, treatment, and complications. CONCLUSIONS Our study patients reported that their overall daily life activities and quality of life, given the holistic approach to treatment and care, were good. However, when we examined each activity separately, our findings showed that patients lacked information regarding how to cope with stress, emotions, and the effects of renal transplant on their life.
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Affiliation(s)
- Seda Pehlivan
- From the Department of Internal Medicine Nursing, Faculty of Health Sciences, Uludag University, Bursa, Turkey
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30
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Carswell C, Noble H. Review: The meaning of coping for kidney transplant recipients: a phenomenological study. J Res Nurs 2018; 23:596-597. [DOI: 10.1177/1744987118786096] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022] Open
Affiliation(s)
- Claire Carswell
- PhD student, School of Nursing and Midwifery, Queen’s University Belfast, Northern Ireland
| | - Helen Noble
- Lecturer, School of Nursing and Midwifery, Queen’s University Belfast, Northern Ireland
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Roberti J, Cummings A, Myall M, Harvey J, Lippiett K, Hunt K, Cicora F, Alonso JP, May CR. Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies. BMJ Open 2018; 8:e023507. [PMID: 30181188 PMCID: PMC6129107 DOI: 10.1136/bmjopen-2018-023507] [Citation(s) in RCA: 72] [Impact Index Per Article: 10.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/09/2018] [Revised: 06/28/2018] [Accepted: 08/08/2018] [Indexed: 12/23/2022] Open
Abstract
INTRODUCTION Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). METHODS Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories. RESULTS Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its advanced stages when renal replacement treatment is necessary. Unfunded healthcare was fragmented and of indeterminate duration, with patients often depending on emergency care. Treatment could lead to unemployment, and in turn, to uninsurance or underinsurance. Patients feared catastrophic events because of diminished financial capacity and made strenuous efforts to prevent them. Transportation to and from haemodialysis centre, with variable availability and cost, was a common problem, aggravated for patients in non-urban areas, or with young children, and low resources. Additional work for those uninsured or underinsured included fund-raising. Transplanted patients needed to manage finances and responsibilities in an uncertain context. Information on the disease, treatment options and immunosuppressants side effects was a widespread problem. CONCLUSIONS Being a person with end-stage kidney disease always implied high burden, time-consuming, invasive and exhausting tasks, impacting on all aspects of patients' and caregivers' lives. Further research on BoT could inform healthcare professionals and policy makers about factors that shape patients' trajectories and contribute towards a better illness experience for those living with CKD. PROSPERO REGISTRATION NUMBER CRD42014014547.
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Affiliation(s)
- Javier Roberti
- FINAER, Foundation for Research and Assistance of Kidney Disease, Buenos Aires, Argentina
| | - Amanda Cummings
- Faculty of Health Sciences, University of Southampton, Southampton, UK
- NIHR CLAHRC Wessex, University of Southampton, Southampton, UK
| | - Michelle Myall
- Faculty of Health Sciences, University of Southampton, Southampton, UK
- NIHR CLAHRC Wessex, University of Southampton, Southampton, UK
| | - Jonathan Harvey
- Faculty of Health Sciences, University of Southampton, Southampton, UK
| | - Kate Lippiett
- Faculty of Health Sciences, University of Southampton, Southampton, UK
| | - Katherine Hunt
- Faculty of Health Sciences, University of Southampton, Southampton, UK
| | - Federico Cicora
- FINAER, Foundation for Research and Assistance of Kidney Disease, Buenos Aires, Argentina
| | - Juan Pedro Alonso
- Faculty of Social Sciences, Universidad de Buenos Aires, Buenos Aires, Argentina
| | - Carl R May
- London School of Hygiene and Tropical Medicine, Faculty of Epidemiology and Population Health, London, UK
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Ndemera H, Bhengu B. Perceptions of healthcare professionals regarding self-management by kidney transplant recipients in South Africa: A qualitative study. INTERNATIONAL JOURNAL OF AFRICA NURSING SCIENCES 2018. [DOI: 10.1016/j.ijans.2018.10.003] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/14/2022] Open
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Moayed MS, Ebadi A, Khodaveisi M, Nassiri Toosi M, Soltanian AR, Khatiban M. Factors influencing health self-management in adherence to care and treatment among the recipients of liver transplantation. Patient Prefer Adherence 2018; 12:2425-2436. [PMID: 30510406 PMCID: PMC6248226 DOI: 10.2147/ppa.s180341] [Citation(s) in RCA: 26] [Impact Index Per Article: 3.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/04/2023] Open
Abstract
INTRODUCTION Liver transplantation is the global treatment of end-stage liver diseases. Since the patients' survival rate has been improved, the patient may experience reductions in physical, cognitive, and psychosocial functions after liver transplantation influencing their adherence to care and treatment. The transplant survival is complex and patients' adherence to care and treatment should be considered when health care providers make decisions regarding treatment. This qualitative study aimed to explore factors influencing health self-management in adherence to care and treatment among the recipients of care and treatment. METHODS In this study, 23 interview sessions were carried out with a total 18 patients, 2 family members and 3 transplantation team members from May to November 2017. The patients were selected using the purposive method from both genders, with a various age range and initial diseases leading to liver transplantation, and time passed from liver transplantation. A semi-structured interview guide was developed based on literature review and pilot interviews. The participants were asked to describe their experiences of self-management behaviors in adherence to treatment and care. The data were analyzed using a conventional content analysis method and managing via the MAXQDA-10 software. RESULTS Two themes were developed during data analysis as "self-regulation" and "self-care". "Self-regulation" consisted of "intentionally changing", "positively thinking", "information seeking", "problem-solving", "past knowledge transferring", and "self-controlling". "Self-care" had three sub-themes "shift to independence", "vigilance", and "self-care support". CONCLUSION The participants perceived the health self-management in adherence to care as a set of factors related to "self-regulation" and "self-care" behaviors. "Self-regulation" is required to create a balance in life. Also, "self-care" efforts can help with maintaining and improving patients' health.
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Affiliation(s)
- Malihe Sadat Moayed
- Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Hamadan University of Medical Sciences, Hamadan, Iran
| | - Abbas Ebadi
- Nursing Education, Behavioral Sciences Research Center, Life Style Institute, Faculty of Nursing, Baqiyatallah University of Medical Sciences, Tehran, Iran
| | - Masoud Khodaveisi
- Chronic Diseases (Home Care) Research Center, Community Health Nursing Department, Hamadan University of Medical Sciences, Hamadan, Iran
| | - Mohssen Nassiri Toosi
- Internal Medicine, Hepatologist, Liver Transplantation Research Center, Tehran University of Medical Sciences, Tehran, Iran
| | - Ali Reza Soltanian
- Modeling of Noncommunicable Diseases Research Center, School of Public Health, Hamadan University of Medical Sciences, Hamadan, Iran
| | - Mahnaz Khatiban
- Mother and Child Care Research Center, Medical-Surgical Nursing Department, School of Nursing and Midwifery, Hamadan University of Medical Sciences, Hamadan, Iran,
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Low JK, Crawford K, Manias E, Williams A. Stressors and coping resources of Australian kidney transplant recipients related to medication taking: a qualitative study. J Clin Nurs 2017; 26:1495-1507. [PMID: 27323293 DOI: 10.1111/jocn.13435] [Citation(s) in RCA: 17] [Impact Index Per Article: 2.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/17/2016] [Indexed: 11/29/2022]
Abstract
AIM AND OBJECTIVE To understand the stressors related to life post kidney transplantation, with a focus on medication adherence, and the coping resources people use to deal with these stressors. BACKGROUND Although kidney transplantation offers enhanced quality and years of life for patients, the management of a kidney transplant post surgery is a complex process. DESIGN A descriptive exploratory study. METHOD Participants were recruited from five kidney transplant units in Victoria, Australia. From March-May 2014, patients who had either maintained their kidney transplant for ≥8 months or had experienced a kidney graft loss due to medication nonadherence were interviewed. All audio-recordings of interviews were transcribed verbatim and underwent Ritchie and Spencer's framework analysis. RESULTS Participants consisted of 15 men and 10 women aged 26-72 years old. All identified themes were categorised into: (1) Causes of distress and (2) Coping resources. Post kidney transplantation, causes of distress included the regimented routine necessary for graft maintenance, and the everlasting fear of potential graft rejection, contracting infections and developing cancer. Coping resources used to manage the stressors were first, a shift in perspective about how easy it was to manage a kidney transplant than to be dialysis-dependent and second, receiving external help from fellow patients, family members and health care professionals in addition to using electronic reminders. CONCLUSION An individual well-equipped with coping resources is able to deal with stressors better. It is recommended that changes, such as providing regular reminders about the lifestyle benefits of kidney transplantation, creating opportunities for patients to share their experiences and promoting the usage of a reminder alarm to take medications, will reduce the stress of managing a kidney transplant. RELEVANCE TO CLINICAL PRACTICE Using these findings to make informed changes to the usual care of a kidney transplant recipient is likely to result in better patient outcomes.
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Affiliation(s)
- Jac Kee Low
- Faculty of Medicine, Nursing & Health Sciences, School of Nursing & Midwifery, Monash University, Clayton, Vic., Australia
| | - Kimberley Crawford
- Faculty of Medicine, Nursing & Health Sciences, School of Nursing & Midwifery, Monash University, Clayton, Vic., Australia
| | - Elizabeth Manias
- Royal Melbourne Hospital, The University of Melbourne, Parkville, Vic., Australia.,Melbourne School of Health Sciences, The University of Melbourne, Parkville, Vic., Australia.,School of Nursing and Midwifery, Deakin University, Burwood, Vic., Australia
| | - Allison Williams
- Faculty of Medicine, Nursing & Health Sciences, School of Nursing & Midwifery, Monash University, Clayton, Vic., Australia
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Ralph AF, Butow P, Hanson CS, Chadban SJ, Chapman JR, Craig JC, Kanellis J, Luxton G, Tong A. Donor and Recipient Views on Their Relationship in Living Kidney Donation: Thematic Synthesis of Qualitative Studies. Am J Kidney Dis 2016; 69:602-616. [PMID: 27889296 DOI: 10.1053/j.ajkd.2016.09.017] [Citation(s) in RCA: 23] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Key Words] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/24/2016] [Accepted: 09/25/2016] [Indexed: 11/11/2022]
Abstract
BACKGROUND Many donors and recipients report an improved relationship after transplantation; however, tension, neglect, guilt, and proprietorial concern over the recipient can impede donor and recipient well-being and outcomes. We aimed to describe donor and recipient expectations and experiences of their relationship in the context of living kidney donation. STUDY DESIGN Thematic synthesis of qualitative studies. SETTING & POPULATION Living kidney donors and recipients. SEARCH STRATEGY & SOURCES Electronic databases were searched to October 2015. ANALYTICAL APPROACH Thematic synthesis. RESULTS From 40 studies involving 1,440 participants (889 donors and 551 recipients) from 13 countries, we identified 6 themes. "Burden of obligation" described the recipient's perpetual sense of duty to demonstrate gratitude to the donor. "Earning acceptance" was the expectation that donation would restore relationships. "Developing a unique connection" reflected the inexplicable bond that donor-recipient dyads developed postdonation. "Desiring attention" was expressed by donors who wanted recognition for the act of donation and were envious and resentful of the attention the recipient received. "Retaining kidney ownership" reflected the donor's inclination to ensure that the recipient protected "their" kidney. "Enhancing social participation" encompassed relieving both the caregiver from the constraints of dialysis and the recipient from increased involvement and contribution in family life. LIMITATIONS Non-English articles were excluded. CONCLUSIONS Living kidney donation can strengthen donor-recipient relationships but may trigger or exacerbate unresolved angst, tension, jealousy, and resentment. Facilitating access to pre- and posttransplantation psychological support that addresses potential relationship changes may help donors and recipients better adjust to changes in the relationship dynamics, which in turn may contribute to improved psychosocial and transplantation outcomes following living kidney donation.
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Affiliation(s)
- Angelique F Ralph
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia; School of Psychology, The University of Sydney, Sydney, NSW, Australia.
| | - Phyllis Butow
- School of Psychology, The University of Sydney, Sydney, NSW, Australia; Psycho-oncology Co-operative Research Group, The University of Sydney, Sydney, NSW, Australia; Centre for Medical Psychology & Evidence-based Decision-making, The University of Sydney, Sydney, NSW, Australia
| | - Camilla S Hanson
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - Steve J Chadban
- Central Clinical School, The University of Sydney, Sydney, NSW, Australia; Transplantation Services, Royal Prince Alfred Hospital, Camperdown, NSW, Australia
| | - Jeremy R Chapman
- Centre for Transplant and Renal Research, The University of Sydney, Westmead Hospital, Westmead, NSW, Australia
| | - Jonathan C Craig
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
| | - John Kanellis
- Department of Nephrology, Monash Health and Centre for Inflammatory Diseases, Monash University, Clayton, VIC, Australia; Department of Medicine, Monash University, Clayton, VIC, Australia
| | - Grant Luxton
- Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia
| | - Allison Tong
- Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia
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Jesse MT, Rubinstein E, Eshelman A, Wee C, Tankasala M, Li J, Abouljoud M. Lifestyle and Self-Management by Those Who Live It: Patients Engaging Patients in a Chronic Disease Model. Perm J 2016; 20:15-207. [PMID: 27455056 DOI: 10.7812/tpp/15-207] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
Abstract
BACKGROUND Patients pursuing organ transplantation have complex medical needs, undergo comprehensive evaluation for possible listing, and require extensive education. However, transplant patients and their supports frequently report the need for more lifestyle and self-management strategies for living with organ transplantation. OBJECTIVES First, to explore feasibility of a successful, patient-run transplant lifestyle educational group (Transplant Living Community), designed to complement medical care and integrated into the clinical setting; and second, to report the major themes of patients' and supports' qualitative and quantitative feedback regarding the group. METHODS Informal programmatic review and patient satisfaction surveys. RESULTS A total of 1862 patient satisfaction surveys were disseminated and 823 were returned (response rate, 44.2%). Patients and their supports reported positive feedback regarding the group, including appreciation that the volunteer was a transplant recipient and gratitude for the lifestyle information. Five areas were associated with the success of Transplant Living Community: 1) a "champion" dedicated to the program and its successful integration into a multidisciplinary team; 2) a health care environment receptive to integration of a patient-led group with ongoing community development; 3) a high level of visibility to physicians and staff, patients, and supports; 4) a clearly presented and manageable lifestyle plan ("Play Your ACES"(a) [Attitude, Compliance, Exercise, and Support]), and 5) a strong volunteer structure with thoughtful training with the ultimate objective of volunteers taking ownership of the program. CONCLUSION It is feasible to integrate a sustainable patient-led lifestyle and self-management educational group into a busy tertiary care clinic for patients with complex chronic illnesses.
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Affiliation(s)
- Michelle T Jesse
- Bioscientist for the Transplant Institute and Senior Staff Psychologist in the Behavioral Health Department at the Henry Ford Health System in Detroit, MI.
| | - Elizabeth Rubinstein
- Patient Advocate for the Transplant Institute at the Henry Ford Health System in Detroit, MI.
| | - Anne Eshelman
- Senior Staff Psychologist for the Transplant Institute at the Henry Ford Health System in Detroit, MI.
| | - Corinne Wee
- Research Assistant for the Transplant Institute at the Henry Ford Health System in Detroit, MI.
| | - Mrunalini Tankasala
- Research Assistant for the Transplant Institute at the Henry Ford Health System in Detroit, MI.
| | - Jia Li
- Assistant Scientist in Public Health Sciences at the Henry Ford Health System in Detroit, MI.
| | - Marwan Abouljoud
- Director of the Transplant Institute and Hepatobiliary Surgery for the Henry Ford Health System in Detroit, MI.
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Beckmann S, Künzler-Heule P, Biotti B, Spirig R. Mastering Together the Highs and Lows. Prog Transplant 2016; 26:215-23. [DOI: 10.1177/1526924816654769] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/01/2023]
Abstract
Context: Self-management in chronic illness involves complex medical, role-related, and emotional tasks. Still, while self-management support of patients and their families has become a cornerstone of chronic illness care, information is limited as to how liver transplant (LTx) patients and close caregivers perceive self-management before and after transplantation. Objective: To explore self-management tasks in view of medical, role-related, and emotional tasks in LTx candidates and recipients and their respective close caregivers. Design and Participants: For this qualitative study, focus group interviews were conducted and analyzed using knowledge mapping according to the 3 above-noted self-management categories. German-speaking adults who were wait-listed for or had received LTx and who were being treated in University Hospital Zurich or who were close caregivers to such patients were eligible for participation. As patients’ data were closely related to those of the caregivers, the 2 groups’ data sets were merged during the final development of themes. Results: Thirty participants comprised 7 focus groups. The main theme was “The current state of health determines the daily rhythm.” The essence of how patients and caregivers described their self-management tasks is compiled in “Mastering together the highs and lows” which comprises 3 core themes: mastering medical management, managing roles together, and managing the highs and lows of emotion. Conclusion: Patients and close caregivers prioritized self-management tasks as follows: first medical, then role-related, and finally emotional management. Over the course of LTx, health-care professionals should acknowledge this ranking while providing individualized support to both patients and caregivers.
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Affiliation(s)
- Sonja Beckmann
- Department of Abdomen and Metabolism, University Hospital Zurich, Zurich, Switzerland
- Institute of Nursing Science, University of Basel, Basel, Switzerland
| | - Patrizia Künzler-Heule
- Department of Gastroenterology and Hepatology, Cantonal Hospital St Gallen, St Gallen, Switzerland
| | - Beatrice Biotti
- Department of Abdomen and Metabolism, University Hospital Zurich, Zurich, Switzerland
| | - Rebecca Spirig
- Institute of Nursing Science, University of Basel, Basel, Switzerland
- Department of Nursing and MTTB, University Hospital Zurich, Zurich, Switzerland
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Grijpma JW, Tielen M, van Staa AL, Maasdam L, van Gelder T, Berger SP, Busschbach JJ, Betjes MGH, Weimar W, Massey EK. Kidney transplant patients' attitudes towards self-management support: A Q-methodological study. PATIENT EDUCATION AND COUNSELING 2016; 99:836-843. [PMID: 26682972 DOI: 10.1016/j.pec.2015.11.018] [Citation(s) in RCA: 18] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 07/29/2015] [Revised: 11/11/2015] [Accepted: 11/20/2015] [Indexed: 06/05/2023]
Abstract
OBJECTIVE Kidney transplant recipients face many self-management challenges. We aimed to identify profiles of attitudes towards self-management support (SMS) shortly after kidney transplantation. METHODS Profiles were generated using Q-methodology: In face-to-face interviews participants rank-ordered opinion statements on aspects of SMS according to agreement. Socio-demographic and medical characteristics were assessed using a questionnaire. By-person factor analysis was used to analyze the rankings and qualitative data was used to support choice of profiles. The resulting factors represent clusters of patients with similar attitudes towards SMS. RESULTS Forty-three patients (mean age=56; 77% male) participated. Four profiles were identified: (A) transplant-focused and obedient; (B) holistic and collaborative; (C) life-focused and self-determined; and (D) was bipolar. The positive pole (D+) minimalizing and disengaged and the negative pole (D-) coping-focused and needy represent opposing viewpoints within the same profile. Socio-demographic and medical characteristics were not related to profile membership. DISCUSSION Each profile represents a specific attitude on post-transplant life, responsibility for health and decision-making, SMS needs, and preferences for SMS. PRACTICAL IMPLICATIONS Patients vary in their attitude, needs and preferences for SMS indicating the necessity of providing personalized support after kidney transplantation. Health professionals should explore patients' SMS needs and adapt support accordingly.
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Affiliation(s)
- J W Grijpma
- Erasmus MC, Department of Internal Medicine, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
| | - M Tielen
- Erasmus MC, Department of Internal Medicine, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
| | - A L van Staa
- Rotterdam University of Applied Sciences, Research Centre Innovations in Care, P.O. Box 25035, 3001 HA Rotterdam, The Netherlands; Erasmus University Rotterdam, Institute of Health Policy & Management (iBMG), Rotterdam, The Netherlands.
| | - L Maasdam
- Erasmus MC, Department of Internal Medicine, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
| | - T van Gelder
- Erasmus MC, Department of Internal Medicine, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
| | - S P Berger
- Erasmus MC, Department of Internal Medicine, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
| | - J J Busschbach
- Erasmus MC, Department of Psychiatry, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
| | - M G H Betjes
- Erasmus MC, Department of Internal Medicine, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
| | - W Weimar
- Erasmus MC, Department of Internal Medicine, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
| | - E K Massey
- Erasmus MC, Department of Internal Medicine, P.O. Box 2040, 3000 CA Rotterdam, the Netherlands.
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Jamieson NJ, Hanson CS, Josephson MA, Gordon EJ, Craig JC, Halleck F, Budde K, Tong A. Motivations, Challenges, and Attitudes to Self-management in Kidney Transplant Recipients: A Systematic Review of Qualitative Studies. Am J Kidney Dis 2016; 67:461-78. [DOI: 10.1053/j.ajkd.2015.07.030] [Citation(s) in RCA: 84] [Impact Index Per Article: 9.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/03/2015] [Accepted: 07/19/2015] [Indexed: 12/20/2022]
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Carrillo Algarra AJ, Mesa Melgarejo L, Moreno Rubio F. El cuidado en un programa de trasplante renal: un acompañamiento de vida. AQUICHAN 2015. [DOI: 10.5294/aqui.2015.15.2.10] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/23/2022] Open
Abstract
Objetivo: comprender las experiencias de cuidado de enfermeras integrantes de grupos de trasplante de la ciudad de Bogotá. Materiales y métodos: investigación cualitativa, utilizó la estrategia de grupos focales; la organización y el análisis de datos siguieron la propuesta de codificación de Janice M. Morse; participaron, previo consentimiento informado, 10 de 20 enfermeras de unidades de trasplante. Se realizó triangulación entre las integrantes del equipo investigador y la literatura relevante. Resultados: emergieron 6 categorías: 1) los múltiples significados del trasplante: cambio, pasión, satisfacción, esperanza, libertad, mayor cercanía, responsabilidad, compromiso, complejidad; 2) las redes de apoyo: familia, asociación de enfermeras, grupo de trabajo interdisciplinario, empresas promotoras de salud, industria farmacéutica; 3) implicaciones del día a día: relación cercana con el paciente y la familia, fortalecimiento de la autoestima profesional, estatus dentro del grupo de trasplante, manejo de las cargas; 4) trayectorias del cuidado profesional: acompañamiento de la enfermera a través del ciclo vital del paciente y posibilidad de identificar necesidades por la estrecha relación con él; 5) el perfil de la enfermera: carácter, conocimiento, compromiso, disponibilidad permanente y capacidad de gestión; 6) contradicciones del trasplante: rechazo al injerto, sufrimiento, desesperanza, sistema de salud; para enfermería, las agotadoras jornadas de trabajo.
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