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1.
J Contin Educ Nurs ; 54(11): 501-508, 2023 Nov.
Article in English | MEDLINE | ID: mdl-37747140

ABSTRACT

BACKGROUND: The continuing evolution of health care and the nursing profession includes the exponential growth of telehealth platforms. The goal of this study was to describe nurses' experiences with and perspectives on their practice with and future need for telehealth. METHOD: A cross-sectional descriptive mixed methods study was conducted with nursing graduates from a single university. Completed survey questions focused on demographics, current work status, plans for employment participation, and telehealth experience. Descriptive analysis was conducted with statistical software, with directed content analysis for narrative responses. RESULTS: A total of 305 of 5,080 participants completed the survey (6% response rate). Nurses described perceived benefits and barriers to working in a telehealth environment. Nurses identified continuing education needs that could form the basis for a telehealth continuing education program to increase confidence in telehealth delivery. CONCLUSION: The identified telehealth educational needs will positively influence the formation of continuing education opportunities for practicing nurses. [J Contin Educ Nurs. 2023;54(11):501-508.].


Subject(s)
Nurses , Telemedicine , Humans , Working Conditions , Cross-Sectional Studies , Education, Nursing, Continuing
3.
Comput Inform Nurs ; 40(12): 848-855, 2022 Dec 01.
Article in English | MEDLINE | ID: mdl-35363635

ABSTRACT

Quality discharge teaching prepares patients and families to transition safely from hospital to home. Technology can enhance and support quality discharge teaching by promoting patient family engagement during the transition. The purpose of this mixed methods study was to explore clinical nurses' experience with using Engaging Parents in Education for Discharge, an iPad application to guide quality discharge teaching. Twelve nurses at a large Midwestern Children's Hospital participated in small focus groups after use of the Engaging Parents in Education for Discharge application and completed a questionnaire on their perception of the acceptability and feasibility of the app. Findings revealed three themes: (1) development and deployment issues focused on the importance of training and support by the study team during implementation; (2) workflow integration centered on the importance of incorporating use of the app into current workflows and to preserve effective communication strategies with parents to optimize use in the healthcare setting; and (3) nurses perceived value in the use of the Engaging Parents in Education for Discharge app for beneficial scripting, questions on discharge topics often forgotten, and guidance for complex patients. Results of this study offer insight into key components for consideration when implementing and integrating technology to aid nursing practice.


Subject(s)
Nurses , Patient Discharge , Child , Humans , Focus Groups , Parents , Delivery of Health Care
4.
West J Nurs Res ; 44(10): 955-965, 2022 Oct.
Article in English | MEDLINE | ID: mdl-34154460

ABSTRACT

Families of pediatric solid organ transplant recipients need ongoing education and support in the first 30 days following hospital discharge for the transplantation. The purpose of this report is to describe the feasibility, acceptability, and preliminary efficacy of a mHealth family-self management intervention, (myFAMI), designed to improve post-discharge outcomes of coping, family quality of life, self-efficacy, family self-management, and utilization of health care resources. We enrolled 46 primary family members. myFAMI was feasible and acceptable; 81% (n=17/21) of family members completed the app at least 24/30 days (goal 80% completion rate). Family members generated 134 trigger alerts and received a nurse response within the goal timeframe of < 2 h 99% of the time. Although there were no significant differences between groups, primary outcomes were in the expected direction. The intervention was well received and is feasible for future post-discharge interventions for families of children who receive an organ transplant.


Subject(s)
Self-Management , Telemedicine , Aftercare , Child , Feasibility Studies , Humans , Patient Discharge , Quality of Life
5.
Prog Transplant ; 31(3): 228-235, 2021 09.
Article in English | MEDLINE | ID: mdl-34159866

ABSTRACT

INTRODUCTION: Substantial growth in the field of transplantation in recent years has increased the need for transplant coordinators. The growing need for these highly skilled clinicians warrants a review of characteristics that increase job satisfaction, an important consideration for transplant centers. RESEARCH QUESTION: The study described transplant coordinators' perceptions of job satisfaction in their current positions. DESIGN: This study evaluated transplant coordinator job satisfaction conducted on 3 separate occasions at US geographically diverse sites. Two instruments, the Vermont Nurses: Job Analysis and Retention Survey and an investigator-designed role and demographic survey, were used to capture study participants' attitudes regarding elements of job satisfaction, design, and involvement. RESULTS: Demographic characteristics of study participants (N = 133) reveal a largely female population (n = 113, 85%) employed full time (n = 124, 93%) in a hospital setting (n = 106, 80%). Scores for items related to job satisfaction, design, and involvement were generally positive. Participants reported being less satisfied for characteristics including promotion opportunities, fringe benefits, and attention to career development provided by employers. CONCLUSION: As annual rates of transplants continue to increase across the United States, the need for growing and retaining talented staff in transplant care settings is even more critical. Results of the study suggest that while transplant coordinators remain largely satisfied with the challenges and personal fulfillment associated with their positions, opportunities for professional development may improve retention and recruitment. Specifically, supporting career development and providing formalized evaluation and supervision were identified as areas of improvement within this specialized group of clinicians.


Subject(s)
Job Satisfaction , Transplantation , Female , Humans , Male , Salaries and Fringe Benefits , Surveys and Questionnaires , United States
6.
Pediatr Transplant ; 25(2): e13873, 2021 03.
Article in English | MEDLINE | ID: mdl-33026158

ABSTRACT

BACKGROUND: Variation in IS exists among pediatric liver transplant centers. While individual centers may publish their practice paradigms, current data on practices as a whole are lacking. This study sought to ascertain the IS protocols of pediatric liver transplant centers within the SPLIT to better understand variability and similarities among peer institutions. METHODS: A 27-item questionnaire was developed within the SPLIT Quality Improvement and Clinical Care Committee. The survey collected data regarding center demographics, IS practices, and treatment of acute cellular rejection. RESULTS: Twenty-eight (64%) SPLIT centers responded with 22 (79%) centers performing more than 10 transplants per year and 17 (61%) following more than 100 post-transplant recipients. All centers use a written protocol, and 25 (89%) have a dedicated transplant pharmacist/PharmD. Twenty-five (89%) centers use steroids for induction alone or in combination with thymoglobulin/interleukin-2 antibodies. All centers use tacrolimus for initial maintenance therapy. Most centers have specialized protocols for ABO-incompatible transplants, recipients with renal dysfunction, autoimmune liver diseases, and liver tumors. Treatment of rejection varied but was associated with escalation in IS. CONCLUSION: IS practices among pediatric liver transplant centers are similar including the use of written protocols, pharmacy involvement, steroids for induction, tacrolimus as initial IS, tacrolimus reduction/delay for renal dysfunction, and escalation of IS with rejection severity. However, other IS practices show wide variability including treatment for ABO-incompatible grafts and presumed rejection. This study serves as a foundation to guide prospective research linking IS practice to outcomes to determine best practice.


Subject(s)
Graft Rejection/prevention & control , Healthcare Disparities/statistics & numerical data , Immunosuppression Therapy/methods , Immunosuppressive Agents/therapeutic use , Liver Transplantation , Practice Patterns, Physicians'/statistics & numerical data , Adolescent , Child , Child, Preschool , Cross-Sectional Studies , Drug Therapy, Combination , Graft Rejection/therapy , Health Care Surveys , Humans , Immunosuppression Therapy/standards , Immunosuppression Therapy/statistics & numerical data , Induction Chemotherapy/methods , Induction Chemotherapy/standards , Induction Chemotherapy/statistics & numerical data , Infant , Infant, Newborn , Maintenance Chemotherapy/methods , Maintenance Chemotherapy/standards , Maintenance Chemotherapy/statistics & numerical data , Practice Patterns, Physicians'/standards , Quality Improvement , Societies, Medical , United States
7.
J Pediatr Nurs ; 52: 41-48, 2020.
Article in English | MEDLINE | ID: mdl-32163845

ABSTRACT

PURPOSE: The purpose of this study was to evaluate the use of the Engaging Parents in Education for Discharge (ePED) iPad application on parent experiences of hospital discharge teaching and care coordination. Hypotheses were: parents exposed to discharge teaching using ePED will have 1) higher quality of discharge teaching and 2) better care coordination than parents exposed to usual discharge teaching. The secondary purpose examined group differences in the discharge teaching, care coordination, and 30-day readmissions for parents of children with and without a chronic condition. DESIGN/METHODS: Using a quasi-experimental design, ePED was implemented on one inpatient unit (n = 211) and comparison group (n = 184) from a separate unit at a pediatric academic medical center. Patient experience outcome measures collected on day of discharge included Quality of Discharge Teaching Scale-Delivery (QDTS-D) and care coordination measured by Care Transition Measure (CTM). Thirty-day readmission was abstracted from records. RESULTS: Parents taught using ePED reported higher QDTS-D scores than parents without ePED (p = .002). No differences in CTM were found between groups. Correlations between QDTS-D and CTM were small for ePED (r = 0.14, p 0.03) and non-ePED (r = 0.29, p < .001) parent groups. CTM was weakly associated with 30-day readmissions in the ePED group. CONCLUSION: The use of ePED by the discharging nurse enhances parent-reported quality of discharge teaching. PRACTICE IMPLICATIONS: The ePED app is a theory-based structured conversation guide to engage parents in discharge preparation. Nursing implementation of ePED contributes to optimizing the patient/family healthcare experience.


Subject(s)
Parents , Patient Discharge , Child , Communication , Educational Status , Humans , Patient Readmission
8.
Res Nurs Health ; 43(2): 145-154, 2020 04.
Article in English | MEDLINE | ID: mdl-31985067

ABSTRACT

Solid-organ transplantation is the treatment of choice for end-stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child's medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self-Management Theory and focuses on family self-management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family-nurse communication and family self-management behaviors for family members of pediatric transplant recipients.


Subject(s)
Adaptation, Psychological , Aftercare/psychology , Family/psychology , Organ Transplantation/nursing , Self-Management/psychology , Telemedicine/organization & administration , Transplant Recipients/psychology , Adolescent , Adult , Child , Child, Preschool , Female , Humans , Infant , Male , Middle Aged , Nurse-Patient Relations , Pilot Projects , United States
9.
J Pediatr Health Care ; 34(1): 30-37, 2020.
Article in English | MEDLINE | ID: mdl-31575440

ABSTRACT

INTRODUCTION: The purpose of this study is to validate the Readiness for Hospital Discharge Scale (RHDS) for use with parents of hospitalized children. PedRHDS is a structured tool for a discharge readiness assessment before pediatric discharge. METHODS: Using combined data from four studies with 417 parents, psychometric testing and item reduction proceeded with principal component analysis for factor structure delineation, Cronbach's alpha for reliability estimation, and regression analysis for predictive validity. RESULTS: A 23-item PedRHDS retained the a priori factor structure. Reliability ranged from 0.73 to 0.85 for the 23-item and 10- and 8-item short scales. PedRHDS (all forms) was associated with postdischarge coping difficulty (explaining 12%-16% of variance) and readmission (odds ratio = 0.71-0.80). DISCUSSION: The PedRHDS and both short forms (PedRHDS-SF10 and PedRHDS-SF8) are reliable and valid measures of parental discharge readiness that can be used as outcome metrics of hospital care and risk indicators for postdischarge coping difficulty and readmission.


Subject(s)
Child, Hospitalized , Parents/psychology , Patient Discharge , Adaptation, Psychological , Adult , Child , Factor Analysis, Statistical , Female , Humans , Male , Predictive Value of Tests , Principal Component Analysis , Psychometrics , Reproducibility of Results
10.
Pediatr Transplant ; 23(3): e13389, 2019 05.
Article in English | MEDLINE | ID: mdl-30884130

ABSTRACT

Pediatric solid organ transplant recipients have long-standing malnutrition concerns related to their pretransplant medical status. The targeted nutrition therapy utilized pre-, peri-, and post-transplantation may have the adverse effect of impeding normally developing feeding skills, particularly in very young children. Little is known about the relationship between transplantation and feeding disorders of childhood. The purpose of this study was to describe severity of feeding disorder and parental stress in patients with transplant compared to children followed in a specialty feeding clinic and the general community. Sixty-four children, comprised of 32 children with solid organ transplant ages 2 months to 12 years and 32 matched control patients diagnosed with a feeding disorder without history of solid organ transplant, were reviewed. All children were from the Feeding, Swallowing, and Nutrition Clinic at a single children's hospital. Findings indicate that patients who received a transplant and presented with a feeding problem had worse symptoms of feeding disorder than are typically found in the general community. These feeding problems disrupt mealtime behavior, caregiver and child relationship within a mealtime context, and may result in maladaptive feeding strategies used by families. When transplanted children present with feeding disorders, they are severe and have multiple effects on both the child and the feeding dynamic between the child and the child's caregivers. Further investigation may help us to better understand the relationship between transplantation and symptoms of feeding disorder.


Subject(s)
Feeding and Eating Disorders/complications , Organ Transplantation/methods , Caregivers , Case-Control Studies , Child , Child Behavior , Child, Preschool , Comorbidity , Family , Feeding Behavior , Female , Hospitals, Pediatric , Humans , Infant , Male , Nutritional Status , Parents , Patient Care Team , Risk , Stress, Psychological , Surveys and Questionnaires
12.
Surgery ; 165(2): 323-328, 2019 02.
Article in English | MEDLINE | ID: mdl-30268374

ABSTRACT

INTRODUCTION: Biliary complications after pediatric orthotopic liver transplantation remain causes of significant patient morbidity. Staged operative approach in complex hepatobiliary surgery has improved postoperative outcomes but has not been evaluated in pediatric orthotopic liver transplantation. We sought to analyze the outcomes of staged biliary reconstruction after orthotopic liver transplantation in high acuity patients. METHODS: A retrospective analysis of 43 pediatric orthotopic liver transplantations at our center (January 2013 through December 2017). Median follow-up was 25 months. Variables were compared for group I: 1-stage orthotopic liver transplantation with biliary anastomosis (n = 6) versus group II: staged biliary reconstruction orthotopic liver transplantation (n = 37). RESULTS: Comparing groups I and II, median age (7.3 vs 4.8 years), weight (27 vs 19 kg), proportion of urgent orthotopic liver transplantation (50% vs 65%), partial graft orthotopic liver transplantation (33% vs 35%), and intraoperative red blood cell transfusion volume (11 vs 21 mL/kg) were comparable. Roux-en-Y hepaticojejunostomy was performed in 67% (group I) and 49% (group II). There was no biliary complication in both groups. For groups I and II, 3-year survival rates for graft (100% vs 92%, P = .477) and patient (100% vs 97%, P = .679) were comparable. CONCLUSION: Our study showed excellent outcomes with staged biliary reconstruction orthotopic liver transplantation in high acuity pediatric transplant recipients. This is the first report showing clinical applicability of staged biliary reconstruction orthotopic liver transplantation in children.


Subject(s)
Anastomosis, Roux-en-Y , Bile Ducts/surgery , Choledochostomy , Jejunostomy , Liver Transplantation , Body Temperature , Child , Child, Preschool , Erythrocyte Transfusion , Female , Graft Survival , Humans , Length of Stay/statistics & numerical data , Male , Retrospective Studies , Stents
13.
Oncol Nurs Forum ; 45(3): 327-337, 2018 05 01.
Article in English | MEDLINE | ID: mdl-29683123

ABSTRACT

OBJECTIVES: To examine nurses' experiences of prognosis-related communication (PRC) with parents of children with cancer. SAMPLE & SETTING: Cross-sectional, correlational study in the pediatric oncology setting involving 316 members of the Association of Pediatric Hematology/Oncology Nurses. METHODS & VARIABLES: Online survey regarding individual nurse factors, PRC, interprofessional collaboration, moral distress, and perceived quality of care. RESULTS: Nurses strongly agreed that prognostic disclosure is critical for decision making, but they are challenged in determining their role. Nurses with more years of experience and training in PRC, those working in an outpatient setting, and those with higher levels of nurse-physician collaboration reported more positive experiences with PRC. Positive experiences with PRC and collaboration were significantly associated with higher nurse-perceived quality of care and reduced nurse moral distress. IMPLICATIONS FOR NURSING: Nurses should work to be active participants in the process of PRC by collaborating with physician colleagues. When nurses sense that prognostic discussions have been absent or unclear, they should feel confident in approaching physician colleagues to ensure parent understanding and satisfaction with communication.


Subject(s)
Communication , Neoplasms/nursing , Nurse's Role , Nurses, Pediatric/psychology , Oncology Nursing/methods , Parents/psychology , Prognosis , Adolescent , Adult , Attitude of Health Personnel , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Infant , Male , Middle Aged , Surveys and Questionnaires
14.
Pediatr Transplant ; 22(4): e13193, 2018 06.
Article in English | MEDLINE | ID: mdl-29663585

ABSTRACT

Despite continued advancements in perioperative care for pediatric liver transplant (LT), graft-threatening vascular occlusion events including hepatic artery thrombosis (HAT) and portal vein thrombosis (PVT) remain a source of significant morbidity and mortality. Perioperative anticoagulation is commonly used for the prevention of HAT and PVT, but evidence-based guidelines are lacking. The goals of this survey were to determine the frequency of use of an anticoagulation protocol and to describe variation in anticoagulation practices among pediatric LT centers. The study consisted of an online survey distributed to members of SPLIT. The survey focused on institutional anticoagulation practices employed to reduce the incidence of graft and life-threatening vascular occlusion events. Responses were received from 31 of 39 SPLIT centers. All respondents report using anticoagulation after pediatric LT, and approximately 90% have institutional anticoagulation protocols. Subgroup analysis of high volume pediatric LT centers revealed similar variability in anticoagulation patterns. All participating SPLIT centers reported the use of post-transplant anticoagulation and nearly all use a protocol. However, there is marked variability in the type and dose of anticoagulation as well as the timing of initiation and duration of therapy across centers.


Subject(s)
Anticoagulants/administration & dosage , Liver Transplantation , Perioperative Care/methods , Postoperative Complications/prevention & control , Practice Patterns, Physicians'/statistics & numerical data , Thrombosis/prevention & control , Anticoagulants/therapeutic use , Australia , Canada , Child , Clinical Protocols , Health Care Surveys , Humans , Pediatrics , Quality Improvement , Thrombosis/etiology , United States
15.
J Pediatr Nurs ; 36: 225-231, 2017.
Article in English | MEDLINE | ID: mdl-28888507

ABSTRACT

PURPOSE: To explore inpatient pediatric nurses' current experiences and perspectives on medication teaching. DESIGN AND METHODS: A descriptive qualitative study was conducted at a Midwest pediatric hospital. Using convenience sampling, 26 nurses participated in six focus groups. Data were analyzed in an iterative group coding process. RESULTS: Three themes emerged. 1) Medication teaching is an opportunity. 2) Medication teaching is challenging. Nurses experienced structural and process challenges to deliver medication teaching. Structural challenges included the physical hospital environment, electronic health record, and institutional discharge workflow while process challenges included knowledge, relationships and interactions with caregivers, and available resources. 3) Medication teaching is amenable to improvement. CONCLUSION: Effective medication teaching with caregivers is critical to ensure safe, quality care for children after discharge. Nursing teaching practices have not changed, despite advances in technology and major changes in hospital care. Nurses face many challenges to conduct effective medication teaching. Improving current teaching practices is imperative in order to provide the best and safest care. PRACTICE IMPLICATIONS: This study generated knowledge regarding pediatric nurses' teaching practices, values and beliefs that influence teaching, barriers, and ideas for how to improve medication teaching. Results will guide the development of targeted interventions to promote successful medication teaching practices.


Subject(s)
Caregivers/education , Medication Errors/prevention & control , Patient Education as Topic/methods , Pediatric Nursing/methods , Pharmaceutical Preparations/administration & dosage , Attitude of Health Personnel , Child , Female , Hospitals, Pediatric , Humans , Male , Nurse's Role , Patient Safety , Quality Control , United States
16.
J Spec Pediatr Nurs ; 22(3)2017 07.
Article in English | MEDLINE | ID: mdl-28371009

ABSTRACT

PURPOSE: To explore parents' experiences of the transition from hospital to home and complex chronic illness management following their children's solid organ transplant (SOT). DESIGN AND METHODS: Qualitative component of a larger mixed methods longitudinal study. Parents of SOT recipients were interviewed three times following hospital discharge from five major pediatric transplant hospitals in the United States. RESULTS: Analysis of parent interviews (N = 48) resulted in three themes that characterized the phases of transition to home and complex chronic illness care. Three themes, corresponding to the three time periods of data collection, included "getting back to normal" at 3 weeks, "becoming routine" at 3 months, and "facing a future" at 6 months. Challenges families experienced over the course of their transition are also described. PRACTICE IMPLICATIONS: The transition from hospital to home and complex chronic condition care is challenging and changes over time. Nurses are called upon to prepare parents to become knowledgeable and confident to care for the child after hospital discharge. Nurses can best support families in transition after SOT by anticipating and understanding their dynamic challenging complex care needs.


Subject(s)
Adaptation, Psychological , Caregivers/psychology , Chronic Disease/psychology , Chronic Disease/rehabilitation , Organ Transplantation/psychology , Organ Transplantation/rehabilitation , Parents/psychology , Adult , Female , Humans , Longitudinal Studies , Male , Middle Aged , United States
17.
Gastroenterol Nurs ; 40(2): 109-116, 2017.
Article in English | MEDLINE | ID: mdl-28362660

ABSTRACT

This article reviews the essential role of nutrition in optimizing care for pediatric patients with liver disease awaiting liver transplant. A review of growth and overall principles of feeding for pediatric patients, from infancy through childhood and into adolescence, is provided including the role of macro- and micronutrients, nutrient distribution, and nutrition supplementation. The importance of a thorough nutrition assessment is reviewed, including focus areas the nurse can address with patients and families such as diet histories, growth, and dietary modifications. Suggestions for monitoring and implementing nutrition strategies are provided.


Subject(s)
Dietary Supplements , End Stage Liver Disease/diet therapy , End Stage Liver Disease/diagnosis , Nutritional Requirements , Nutritional Status , Age Factors , Child , Child, Preschool , Chronic Disease , End Stage Liver Disease/surgery , Female , Follow-Up Studies , Humans , Infant , Liver Transplantation/methods , Male , Micronutrients/therapeutic use , Pediatrics , Preoperative Care/methods , Risk Assessment , Time Factors , Waiting Lists
18.
J Nurs Scholarsh ; 49(2): 202-213, 2017 03.
Article in English | MEDLINE | ID: mdl-28253444

ABSTRACT

BACKGROUND: Parents of hospitalized children, especially parents of children with complex and chronic health conditions, report not being adequately prepared for self-management of their child's care at home after discharge. PROBLEM: No theory-based discharge intervention exists to guide pediatric nurses' preparation of parents for discharge. PURPOSE: To develop a theory-based conversation guide to optimize nurses' preparation of parents for discharge and self-management of their child at home following hospitalization. METHODS: Two frameworks and one method influenced the development of the intervention: the Individual and Family Self-Management Theory, Tanner's Model of Clinical Judgment, and the Teach-Back method. A team of nurse scientists, nursing leaders, nurse administrators, and clinical nurses developed and field tested the electronic version of a nine-domain conversation guide for use in acute care pediatric hospitals. CONCLUSIONS: The theory-based intervention operationalized self-management concepts, added components of nursing clinical judgment, and integrated the Teach-Back method. CLINICAL RELEVANCE: Development of a theory-based intervention, the translation of theoretical knowledge to clinical innovation, is an important step toward testing the effectiveness of the theory in guiding clinical practice. Clinical nurses will establish the practice relevance through future use and refinement of the intervention.


Subject(s)
Parents/education , Patient Discharge , Patient Education as Topic/methods , Pediatric Nursing , Self Care , Child , Child, Hospitalized , Communication , Humans , Nurse-Patient Relations , Parents/psychology , Psychological Theory
19.
J Pediatr Health Care ; 30(4): 374-80, 2016.
Article in English | MEDLINE | ID: mdl-26547482

ABSTRACT

INTRODUCTION: The Institute of Medicine prioritizes active family and clinician participation in treatment decisions, known as shared decision making (SDM). In this article we report the decision-making experiences for parents of children who had a solid organ transplant. METHOD: We performed a prospective longitudinal mixed methods study at five major U.S. children's medical centers. Qualitative interview data were obtained at 3 weeks, 3 months, and 6 months after hospital discharge following the child's transplant. RESULTS: Forty-eight parents participated in the study. Three themes were identified: (a) Parents expect to participate in SDM; (b) parents seek information to support their participation in SDM; and (c) attributes of providers' professional practice facilitates SDM. SDM was facilitated when providers were knowledgeable, transparent, approachable, accessible, dependable, and supportive. CONCLUSIONS: Parents expect to participate in SDM with their transplant team. Health care providers can intentionally use the six key attributes to engage parents in SDM. The results provide a framework to consider enhancing SDM in other chronic illness populations.


Subject(s)
Decision Making , Organ Transplantation/psychology , Parents/psychology , Adolescent , Adult , Child , Child, Preschool , Decision Support Techniques , Female , Humans , Infant , Infant, Newborn , Longitudinal Studies , Male , Middle Aged , Physician-Patient Relations , Prospective Studies , Qualitative Research , United States
20.
Prog Transplant ; 25(2): 139-46, 2015 Jun.
Article in English | MEDLINE | ID: mdl-26107274

ABSTRACT

CONTEXT: Solid-organ transplant is the treatment of choice for end-stage organ failure and requires a transition from management of a life-threatening condition to a chronic illness. Despite research focusing on quality of life after transplant, there is a gap addressing the role of managing a chronic illness focusing on vulnerability and impact on family. OBJECTIVE: Identify patient and family patterns of adaptation among kidney and liver transplant recipients in regard to (1) vulnerability, (2) impact of illness on the family, (3) family functioning, and (4) quality of life (parent and child report). DESIGN: Cross-sectional study enrolling children 5 to 18 years old and their parent at a single time point after kidney or liver transplant. Validated self-report tools were completed. RESULTS: In all, 47 participants (24 kidney and 23 liver) were recruited. Mean age at transplant was 4.0 (kidney) and 2.1 (liver) years. Mean age at report was 12.1 (kidney) and 7.1 (liver) years. Child vulnerability correlated negatively with (1) family impact in the kidney (P < .05) and liver (P < .05) transplant groups, (2) PedsQL subscales including Parent Emotional (P< .05), Parent Social (P< .01), Parent Psychosocial (P < .01), Parent Physical (P < .05), Parent School (P < .05), and Child Social (P < .01) in the kidney transplant group, (3) PedsQL Parent Emotional subscale (P< .01) in the liver transplant group, and (4) Functional status (P < .01) in the liver transplant group. CONCLUSIONS: Child vulnerability provides insight into quality of life and the impact of illness on the family and family functioning.


Subject(s)
Chronic Disease/psychology , Family/psychology , Kidney Transplantation/psychology , Liver Transplantation/psychology , Parents/psychology , Quality of Life , Transplant Recipients/psychology , Adaptation, Psychological , Adolescent , Adult , Child , Child, Preschool , Chronic Disease/nursing , Cross-Sectional Studies , Female , Humans , Kidney Transplantation/nursing , Liver Transplantation/nursing , Male , Middle Aged , Stress, Psychological , Wisconsin
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