Abstract:
:The purpose of this study was to gain a deeper understanding of maternal experiences of caring for their child with a VAD at home as a bridge to transplant. A descriptive, qualitative study was conducted via telephone-recorded guided interviews. Participants were caring for or had a child with a VAD between 4 and 16 years old. Data collection occurred over a 12-month period. Using the snowball sampling technique, a purposeful sample of mothers (n = 6) was consented and completed the interview. The data were analyzed using an iterative process of thematic analysis. Five themes emerged: physical modifications, the loss of independence, the emotional rollercoaster, support from others, and transitions on and off the device. We introduced new evidence about sleep, contraception, and heart transplantation, and how VAD therapy impacts childhood development. The mean duration of VAD support was 263 ± 170 days. Five children had heart transplants by the time of interview. To the best of our knowledge, this is the first qualitative study in the US that explores maternal experiences of caring for a child who is living at home with a VAD. VAD therapy is a novel approach to managing advanced heart failure among children and presents unique challenges when caring for them at home. Results provide insight into the education, physical environment, and support needed by parents.
journal_name
Pediatr Transplantjournal_title
Pediatric transplantationauthors
DiFusco LA,Saylor JL,Schell KAdoi
10.1111/petr.13620subject
Has Abstractpub_date
2020-02-01 00:00:00pages
e13620issue
1eissn
1397-3142issn
1399-3046journal_volume
24pub_type
杂志文章abstract::There is a shortage of pediatric donor hearts for waitlisted children, and yet nearly 50% of organs offered are not transplanted. Donor quality is often cited as a reason for declining organs offered from donors infected with influenza, presumably due to concern about disease transmission at transplant leading to seve...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13585
更新日期:2019-12-01 00:00:00
abstract::A proportion of patients with CF develop cirrhosis and portal hypertension. LT and combined LLT are rarely performed in patients with CF. To determine the outcome of LT and LLT in patients with CF. Patients with CF who had LT or LLT between 10/1987 and 5/2008 were identified from UNOS database. A total of 182 children...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2010.01460.x
更新日期:2011-05-01 00:00:00
abstract::This prospective observational study analyzed the pharmacokinetics of busulfan in Japanese children and evaluated the predicting accuracy of previous pediatric PPK models of busulfan. This study enrolled five patients (aged 2-12 years, BW 14-48 kg) receiving a busulfan-based conditioning regimen for hematopoietic stem...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13696
更新日期:2020-06-01 00:00:00
abstract::Hepatic veno-occlusive disease (VOD) after stem cell transplantation is a toxic manifestation of the conditioning regimen most probably emphasized by the allogeneic reaction. Its overall mortality rate is < 4% in adults as well as in children. Recent progress has been achieved in the diagnosis of this complication. Ho...
journal_title:Pediatric transplantation
pub_type: 杂志文章,评审
doi:10.1034/j.1399-3046.1999.00077.x
更新日期:1999-01-01 00:00:00
abstract::An 18-yr-old Hispanic female with end-stage renal disease secondary to chronic glomerulonephritis of unknown etiology underwent cadaveric renal transplantation. She was placed on a steroid-free protocol with tacrolimus and mycophenolate mofetil (MMF) for maintenance immunosuppression. Approximately 8 months post-trans...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00245.x
更新日期:2005-02-01 00:00:00
abstract::Early graft loss and poor graft function limit the use of kidneys from infant donors. Six en bloc kidney transplantations were performed from infant donors younger than 10 months into pediatric recipients between November 2012 and September 2015 at our center. We retrospectively analyzed recipient and donor demographi...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12845
更新日期:2017-03-01 00:00:00
abstract::Children and adolescents with renal disease experience daily social, emotional, and medical challenges. Renal transplantation can help to improve quality of life but requires a lifelong regimen of immunosuppressant medication to maintain health. Adherence to a daily complex regimen can be difficult, particularly for a...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13346
更新日期:2019-03-01 00:00:00
abstract::HPS is defined as arterial hypoxemia because of pulmonary vasodilation as a result of cirrhotic or non-cirrhotic portal hypertension. This report describes a teenager with HPS because of primary sclerosing cholangitis/autoimmune hepatitis overlap syndrome requiring OLT. HPS resolved completely within three months of O...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2007.00790.x
更新日期:2007-12-01 00:00:00
abstract::TB is an increasing health problem, and patients undergoing HSCT are more prone to develop tuberculosis. The aim of our study was to evaluate prevalence of latent tuberculosis in HSCT recipients. In this study, 84 patients (2 months to 18 years) who were candidates for HSCT at the referral hospital of Tehran Children'...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13770
更新日期:2020-09-01 00:00:00
abstract::Rejection remains a major threat in pediatric renal transplantation (Tx), causing graft failure and increased exposure to drugs. The new chimeric antibody, basiliximab, directed against the alpha-chain of the interleukin-2 receptor (IL-2R), has been shown to be effective in preventing rejection episodes in adult renal...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1034/j.1399-3046.2001.005004297.x
更新日期:2001-08-01 00:00:00
abstract::Since December 1995, pediatric renal transplant recipients in our unit have received a DMSA scan as soon as possible post-transplant in order to provide a baseline for comparison in the event of subsequent complications. We retrospectively reviewed the case notes and DMSA scans of the 45 patients who underwent a scan ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1046/j.1399-3046.2003.00073.x
更新日期:2003-12-01 00:00:00
abstract::Major neurologic complications secondary to cyclosporine are well documented and are known to include confusion, cortical blindness, seizure, spasticity, paresis, ataxia and coma. Most previous reports attribute these to white matter central nervous system (CNS) lesions or white/grey matter border lesions. Many predis...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:
更新日期:1998-02-01 00:00:00
abstract::This study aims to evaluate BMD and bone biomarkers and to investigate the effects of immunosuppressives on bone disease after RTx. Thirty-three RTR aged 16.7 ± 3.7 yr and healthy controls (n = 32) were enrolled. There was no difference between pre-RTx BMD and BMD at the time of study (45.9 ± 30.9 months after RTx), w...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12469
更新日期:2015-06-01 00:00:00
abstract::Approximately 800 pediatric renal transplants are performed annually in the United States. VUR or obstruction may cause graft failure requiring redo ureteroneocystostomy. We examined possible risk factors and cost using the PHIS national database. We examined the PHIS for 8.5 yr to determine the association between re...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12522
更新日期:2015-08-01 00:00:00
abstract::ADV is frequently seen in our pediatric SOT population. It presents in a variety of clinical presentation and can cause severe disease. In this population, there are very few studies to determine the safety of CDV as a potential therapeutic agent. We present the findings of our retrospective study evaluating the effic...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13231
更新日期:2018-06-03 00:00:00
abstract::The development of NODM is a common metabolic complication after liver transplantation. Presentation of post-liver transplant diabetes mellitus with DKA is rare especially among pediatric patients. We reported three pediatric patients who presented with DKA after liver transplantation. The underlying diseases leading ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2008.01117.x
更新日期:2009-08-01 00:00:00
abstract::Recurrence of hemolytic uremic syndrome (HUS) after kidney transplantation is frequent, occurring almost exclusively in patients with atypical HUS, which is not caused by Escherichia coli gastroenteritis and in which diarrhea is absent. Calcineurin inhibitors are associated with recurrence of HUS. In two children who ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1034/j.1399-3046.2002.t01-1-00002.x
更新日期:2002-08-01 00:00:00
abstract::To analyze the clinical profile and outcome of pediatric patients who had undergone a liver and/or RT at our center over a five yr period, case records of all the patients who had undergone a liver or RT were analyzed retrospectively. One hundred solid organ transplants were performed at our center between January 200...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12324
更新日期:2014-11-01 00:00:00
abstract::Delayed recovery of thrombocytopenia is a well-known complication after allogeneic HSCT. Eltrombopag (ELT), a thrombopoietin receptor agonist (TRAs), induces platelet maturation and release. Mostly conducted in adults, some of the previous studies have shown that ELT seems to enhance platelet recovery for post-allogen...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13962
更新日期:2021-01-16 00:00:00
abstract::BK DNAemia in renal transplant recipients is a significant cause of allograft dysfunction and can lead to graft loss due to BK polyomavirus-associated nephropathy or to graft rejection due to immunosuppression reduction. Currently, the first-line treatment for BK DNAemia is immunosuppression reduction. Second-line tre...
journal_title:Pediatric transplantation
pub_type:
doi:10.1111/petr.13600
更新日期:2020-02-01 00:00:00
abstract::There is a limited supply of organs for all those who need them for survival. Thus, careful decisions must be made about who is listed for transplant. Studies show that manifesting genetic disease can impact listing eligibility. What has not yet been studied is the impact genetic risks for future disease have on a pat...
journal_title:Pediatric transplantation
pub_type: 杂志文章,多中心研究
doi:10.1111/petr.13402
更新日期:2019-06-01 00:00:00
abstract::In patients with myocytolysis detected in endomyocardial biopsy, there is a tendency towards a shift of ventricular electrical axes from normal to strain pattern on surface ECG. Their 12-lead signal-averaged electrocardiogram (SAECG) show a significant increase in filtered QRS duration (QRSD) compared with those with ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2005.00384.x
更新日期:2005-12-01 00:00:00
abstract::This review focuses on active clinical research in pediatric liver transplantation with special emphasis on areas that could benefit from studies utilizing the SPLIT infrastructure and data repository. Ideas were solicited by members of the SPLIT Research Committee and sections were drafted by members of the committee...
journal_title:Pediatric transplantation
pub_type: 杂志文章,评审
doi:10.1111/petr.12090
更新日期:2013-08-01 00:00:00
abstract::AML with the RAM immunophenotype is associated with extremely poor prognosis. We report a rare case of monozygotic twins presenting simultaneously at the age of 2 years with RAM AML. Each twin underwent a myeloablative 7/10 unrelated umbilical cord blood transplant. Pretransplant Twin A's bone marrow was negative for ...
journal_title:Pediatric transplantation
pub_type:
doi:10.1111/petr.13291
更新日期:2018-12-01 00:00:00
abstract::Thrombosis is a major postoperative complication in pediatric liver transplantation. There is marked heterogeneity in prophylactic antithrombotic therapies used, without established guidelines. This review summarizes current worldwide incidence of thrombotic events and compares antithrombotic therapies in children pos...
journal_title:Pediatric transplantation
pub_type: 杂志文章,评审
doi:10.1111/petr.13420
更新日期:2019-06-01 00:00:00
abstract::Deficiency of the CD40L, expressed on the surface of T lymphocytes, is caused by mutations in the glycoprotein CD40L (CD154) gene. Resulting defective humoral and cellular responses cause a clinical presentation that includes recurrent sinopulmonary bacterial infections, opportunistic infections, sclerosing cholangiti...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.13768
更新日期:2020-09-01 00:00:00
abstract::Intestinal transplant recipients are at risk of micronutrient deficiency due to the slow process of post-transplant adaptation. Another contributing factor is calcineurin inhibitor-induced renal tubular dysfunction. Patients are typically supplemented with micronutrients during PN; however, the risk of deficiency may ...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12132
更新日期:2013-11-01 00:00:00
abstract::SAB assays have increased the sensitivity and specificity to detect HLA alloantibodies, but there is uncertainty about the clinical relevance of SAB-positive alloantibodies when the FCXM is negative. We performed a retrospective study to evaluate the clinical significance of SAB-detected DSA in 82 pediatric recipients...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/j.1399-3046.2009.01281.x
更新日期:2010-09-01 00:00:00
abstract::Liver and small bowel transplant is an established treatment for infants with IFALD. Despite organ reduction techniques, mortality on the waiting list remains high due to shortage of size-matched pediatric donors. Small abdominal cavity volume due to previous intestinal resection poses a significant challenge to achie...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1111/petr.12138
更新日期:2013-11-01 00:00:00
abstract::In order to assess certain aspects of pediatric kidney transplantation (Tx) in Turkey, we retrospectively analyzed the results of 56 of these pediatric procedures performed at our center. From January 1986 to January 1998, 56 pediatric renal Tx (29 males, 27 females; 0-17 yr of age) were carried out at Başkent Univers...
journal_title:Pediatric transplantation
pub_type: 杂志文章
doi:10.1034/j.1399-3046.2000.00130.x
更新日期:2000-11-01 00:00:00