Maternal experiences of caring for a child with a ventricular assist device.

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 Transplant

authors

DiFusco LA,Saylor JL,Schell KA

doi

10.1111/petr.13620

subject

Has Abstract

pub_date

2020-02-01 00:00:00

pages

e13620

issue

1

eissn

1397-3142

issn

1399-3046

journal_volume

24

pub_type

杂志文章
  • Pediatric heart transplant from an incompletely treated influenza A-positive donor.

    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

    authors: Smith CJ,McCulloch MD,Shirley DA,L'Ecuyer TJ

    更新日期:2019-12-01 00:00:00

  • Liver and combined lung and liver transplantation for cystic fibrosis: analysis of the UNOS database.

    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

    authors: Arnon R,Annunziato RA,Miloh T,Padilla M,Sogawa H,Batemarco L,Willis A,Suchy F,Kerkar N

    更新日期:2011-05-01 00:00:00

  • Pharmacokinetic analysis for model-supported therapeutic drug monitoring of busulfan in Japanese pediatric hematopoietic stem cell transplantation recipients.

    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

    authors: Kishimoto K,Hasegawa D,Irie K,Okada A,Nakamura S,Tamura A,Yamamoto N,Kozaki A,Saito A,Ishida T,Fukushima S,Kosaka Y

    更新日期:2020-06-01 00:00:00

  • Hepatic veno-occlusive disease.

    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

    authors: Ribaud P,Gluckman E

    更新日期:1999-01-01 00:00:00

  • Gastrointestinal leukocytoclastic vasculitis: an adverse effect of sirolimus.

    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

    authors: Nagarajan S,Friedrich T,Garcia M,Kambham N,Sarwal MM

    更新日期:2005-02-01 00:00:00

  • En bloc kidney transplantation from infant donors younger than 10 months into pediatric recipients.

    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

    authors: Wang HY,Li J,Liu LS,Deng RH,Fu Q,Ko DS,Zhang HX,Deng SX,Wang CX

    更新日期:2017-03-01 00:00:00

  • Medication adherence in pediatric renal transplant patients: The role of family functioning and parent health locus of control.

    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

    authors: Kraenbring MM,Zelikovsky N,Meyers KEC

    更新日期:2019-03-01 00:00:00

  • Successful liver retransplantation for recurrent hepatopulmonary syndrome.

    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

    authors: Rajwal SR,Davison SM,Prasad R,Brownlee K,McClean P

    更新日期:2007-12-01 00:00:00

  • High prevalence of latent tuberculosis in hematopoietic stem cell transplant recipients: A First Report.

    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

    authors: Mahmoudi S,Pourakbari B,Sadeghi RH,Hamidieh AA,Safari Sharari A,Salajegheh P,Aziz-Ahari A,Mamishi S

    更新日期:2020-09-01 00:00:00

  • Efficacy and tolerability of interleukin-2 receptor blockade with basiliximab in pediatric renal transplant recipients.

    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

    authors: Vester U,Kranz B,Testa G,Malagò M,Beelen D,Broelsch CE,Hoyer PF

    更新日期:2001-08-01 00:00:00

  • The significance of a defect on DMSA scan in children with renal transplants.

    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

    authors: Hutchinson C,Beckett M,Kiratli P,Gordon I,Trompeter RS,Rees L

    更新日期:2003-12-01 00:00:00

  • Cyclosporine-induced white and grey matter central nervous system lesions in a pediatric renal transplant patient.

    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:

    authors: Jeruss J,Braun SV,Reese JC,Guillot A

    更新日期:1998-02-01 00:00:00

  • The evaluation of bone metabolism in children with renal transplantation.

    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

    authors: Büyükkaragöz B,Bakkaloglu SA,Kandur Y,Isiyel E,Akcaboy M,Buyan N,Hasanoglu E

    更新日期:2015-06-01 00:00:00

  • National risk factors and estimated costs for redo ureteroneocystostomy after pediatric renal transplant.

    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

    authors: Godebu E,Palazzi K,Bush R,Marietti S,Chiang G

    更新日期:2015-08-01 00:00:00

  • Virologic response with 2 different cidofovir dosing regimens for preemptive treatment of adenovirus DNAemia in pediatric solid organ transplant recipients.

    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

    authors: Guerra Sanchez CH,Lorica CD,Arheart KL,Perez MM,Tekin A,Gonzalez IA

    更新日期:2018-06-03 00:00:00

  • New-onset diabetes mellitus presenting with diabetic ketoacidosis after pediatric liver transplantation.

    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

    authors: Dehghani SM,Nikeghbalian S,Eshraghian A,Haghighat M,Imanieh MH,Bahador A,Kazemi K,Malek-Hosseini SA

    更新日期:2009-08-01 00:00:00

  • Fulminant recurrence of atypical hemolytic uremic syndrome during a calcineurin inhibitor-free immunosuppression regimen.

    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

    authors: Florman S,Benchimol C,Lieberman K,Burrows L,Bromberg JS

    更新日期:2002-08-01 00:00:00

  • Experience of 100 solid organ transplants over a five-yr period from the first successful pediatric multi-organ transplant program in India.

    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

    authors: Sibal A,Malhotra S,Guru FR,Bhatia V,Kapoor A,Seth S,Jerath N,Jasuja S,Rajkumari V,Wadhawan M,Aggarwal DK,Guleria S,Shrivastava RN,Gupta S

    更新日期:2014-11-01 00:00:00

  • Eltrombopag for treatment of thrombocytopenia after allogeneic hematopoietic cell transplantation in children: Single-centre experience.

    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

    authors: Yaman Y,Elli M,Şahin Ş,Özdilli K,Bilgen H,Bayram N,Nepesov S,Anak S

    更新日期:2021-01-16 00:00:00

  • Use of intravenous immunoglobulin in a highly sensitized pediatric renal transplant recipient with severe BK DNAemia and rising DSA.

    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

    authors: Piburn KH,Al-Akash S

    更新日期:2020-02-01 00:00:00

  • Use of genetic risks in pediatric organ transplantation listing decisions: A national survey.

    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

    authors: Graf M,Char D,Hanson-Kahn A,Magnus D

    更新日期:2019-06-01 00:00:00

  • Serial signal-averaged electrocardiography in children after cardiac transplantation.

    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

    authors: Bennhagen RG,Sörnmo L,Pahlm O,Pesonen E

    更新日期:2005-12-01 00:00:00

  • The SPLIT research agenda 2013.

    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

    authors: Alonso EM,Ng VL,Anand R,Anderson CD,Ekong UD,Fredericks EM,Furuya KN,Gupta NA,Lerret SM,Sundaram S,Tiao G,Studies of Pediatric Liver Transplantation (SPLIT) Research Group.

    更新日期:2013-08-01 00:00:00

  • Monozygotic twins diagnosed simultaneously with RAM immunophenotype acute myeloid leukemia.

    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

    authors: Abu-Arja RF,Dargart JL,Bajwa RPS,Kahwash SB,Auletta JJ,Rangarajan HG

    更新日期:2018-12-01 00:00:00

  • Antithrombotic management and thrombosis rates in children post-liver transplantation: A case series and literature review.

    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

    authors: Flynn E,Huang JY,Hardikar W,Herd L,Hodgson A,Monagle P

    更新日期:2019-06-01 00:00:00

  • Hematopoietic stem cell transplantation in CD40 ligand deficiency: A single-center experience.

    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

    authors: Uygun DFK,Uygun V,Karasu GT,Daloğlu H,Öztürkmen SI,Çelmeli F,Törün SH,Özen A,Barış S,Aydıner EK,Yalçın K,Kılıç SÇ,Hazar V,Bingöl A,Yeşilipek A

    更新日期:2020-09-01 00:00:00

  • Micronutrient deficiencies in pediatric and young adult intestinal transplant patients.

    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

    authors: Ubesie AC,Cole CR,Nathan JD,Tiao GM,Alonso MH,Mezoff AG,Henderson CJ,Kocoshis SA

    更新日期:2013-11-01 00:00:00

  • Impaired graft survival in pediatric renal transplant recipients with donor-specific antibodies detected by solid-phase assays.

    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

    authors: Verghese PS,Smith JM,McDonald RA,Schwartz SM,Nelson KA,Warner PR

    更新日期:2010-09-01 00:00:00

  • Use of tissue expansion to facilitate liver and small bowel transplant in young children with contracted abdominal cavities.

    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

    authors: Vidyadharan R,van Bommel AC,Kuti K,Gupte GL,Sharif K,Richard BM

    更新日期:2013-11-01 00:00:00

  • Pediatric renal transplantation in Turkey: a review of 56 cases from a single center.

    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

    authors: Haberal M,Bereket G,Karakayali H,Arslan G,Moray G,Bilgin N

    更新日期:2000-11-01 00:00:00