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1.
Healthcare (Basel) ; 12(18)2024 Sep 10.
Article in English | MEDLINE | ID: mdl-39337148

ABSTRACT

(1) Background/Objective: California has one of the highest rates of pediatric dental caries in the nation. One way to combat this problem is through non-dental provider training programs that focus on prevention. However, there are limited data on healthcare provider training program integration and evaluation of oral health curricula focused on prevention of early childhood caries. This study will assess the change in healthcare providers' attitudes, knowledge, and skills by implementing an interprofessional educational (IPE) oral health curriculum in medicine and nurse practitioner programs at one university in Southern California. (2) Methods: A mixed method design was employed using a pre- and post-educational survey, and end-of-program focus group interviews. Descriptive statistics and paired t-tests were used to assess group differences and thematic analyses for the focus groups. (3) Results: A total of 81 students (14 pediatric medicine residents, 18 pediatric, and 49 family nurse practitioners) completed the curriculum and surveys. Attitudes related to oral hygiene remained unchanged, with the nurse practitioner group showing improved clinical skills (all questions; p < 0.021). Knowledge scores significantly improved across all groups (paired t-test; p < 0.001). All focus groups expressed the helpfulness of the educational modules, the usefulness of the skills learned, and the benefits of IPE activities. (4) Conclusion: Healthcare providers showed improved oral health knowledge and clinical skills acquired through the oral health program and can serve as a model to educate across disciplines on the prevention of early childhood caries.

2.
J Am Heart Assoc ; 13(19): e036214, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39263820

ABSTRACT

Due to improvements in recognition and management of their multisystem disease, the long-term survival of infants, children, and adolescents with trisomy 21 and congenital heart disease now matches children with congenital heart disease and no genetic condition in many scenarios. Although this improved survival is a triumph, individuals with trisomy 21 and congenital heart disease have unique and complex care needs in the domains of physical, developmental, and psychosocial health, which affect functional status and quality of life. Pulmonary hypertension and single ventricle heart disease are 2 known cardiovascular conditions that reduce life expectancy in individuals with trisomy 21. Multisystem involvement with respiratory, endocrine, gastrointestinal, hematological, neurological, and sensory systems can interact with cardiovascular health concerns to amplify adverse effects. Neurodevelopmental, psychological, and functional challenges can also affect quality of life. A highly coordinated interdisciplinary care team model, or medical home, can help address these complex and interactive conditions from infancy through the transition to adult care settings. The purpose of this Scientific Statement is to identify ongoing cardiovascular and multisystem, developmental, and psychosocial health concerns for children with trisomy 21 and congenital heart disease from birth through adolescence and to provide a framework for monitoring and management to optimize quality of life and functional status.


Subject(s)
Down Syndrome , Heart Defects, Congenital , Quality of Life , Humans , Down Syndrome/psychology , Down Syndrome/therapy , Heart Defects, Congenital/therapy , Heart Defects, Congenital/psychology , Heart Defects, Congenital/physiopathology , Adolescent , Child , United States , Infant, Newborn , American Heart Association , Infant , Child, Preschool , Functional Status , Health Status
3.
J Cardiovasc Dev Dis ; 11(8)2024 Jul 29.
Article in English | MEDLINE | ID: mdl-39195144

ABSTRACT

(1) Introduction: Adolescents with complex congenital heart disease (CCHD) show brain tissue injuries in regions associated with cognitive deficits. Alteration in cerebral arterial perfusion (CAP), as measured by arterial transit time (ATT), may lead to perfusion deficits and potential injury. Our study aims to compare ATT values between CCHD patients and controls and assess the associations between ATT values, MD values, and cognitive scores in adolescents with CCHD. (2) Methods: 37 CCHD subjects, 14-18 years of age, who had undergone surgical palliation and 30 healthy controls completed cognitive testing and brain MRI assessments using a 3.0-Tesla scanner. ATT values and regional brain mean diffusivity [MD] were assessed for the whole brain using diffusion tensor imaging. (3) Results: The mean MoCA values [23.1 ± 4.1 vs. 28.1 ± 2.3; p < 0.001] and General Memory Index, with a subscore of WRAML2 [86.8 ± 15.4 vs. 110.3 ± 14.5; p < 0.001], showed significant cognitive deficits in CCHD patients compared to controls. The mean global ATT was significantly higher in CCHD patients versus controls (mean ± SD, s, 1.26 ± 0.11 vs. 1.19 ± 0.11, p = 0.03), respectively. The partial correlations between ATT values, MD values, and cognitive scores (p < 0.005) showed significant associations in areas including the hippocampus, prefrontal cortices, cerebellum, caudate, anterior and mid cingulate, insula, thalamus, and lingual gyrus. (4) Conclusions: Adolescents with CCHD had prolonged ATTs and showed correlation with clinical measurements of cognitive impairment and MRI measurements of brain tissue integrity. This suggests that altered CAP may play a role in brain tissue injury and cognitive impairment after surgical palliation.

4.
J Am Assoc Nurse Pract ; 36(9): 491-500, 2024 Sep 01.
Article in English | MEDLINE | ID: mdl-38832876

ABSTRACT

BACKGROUND: The One-Minute Preceptor (OMP) model to teach diagnostic reasoning and Reporter, Interpreter, Manager, and Educator (RIME) framework to measure progress are used in physician training. Little is known about the use of these tools in nurse practitioner (NP) training. LOCAL PROBLEM: Precepting NP trainees at the Veterans Affairs (VA) is not standardized. A standardized approach to precepting NP residency trainees using the OMP model and RIME scoring was evaluated for improvement and helpfulness. METHODS: A quality-improvement project with two Plan-Do-Study-Act (PDSA) cycles were conducted over a 12-week period. Mean RIME scores, preceptor self-efficacy, and use of teaching skills were measured preintervention and postintervention. Data were analyzed using a paired sample t -test and descriptive statistics. INTERVENTIONS: A convenience sample of preceptors and trainees was recruited from a large VA medical center. A 1-hour workshop educated preceptors with role playing and return demonstrations on OMP techniques and RIME scoring. The teachings were applied to standardize precepting and assess diagnostic reasoning. Trainee self-scoring and results triggered conversations to fulfil the identified gaps. RESULTS: Mean RIME scores improved (1.62 [0.17] vs. 2.23 [0.38], p < .001) post 12-week intervention. Mean RIME scores improved between PDSA cycle 1 and cycle 2 (2.07 [0.25] vs. 2.48 [0.39], p < .001). Preceptors (91%) and trainees (100%) found the OMP model and RIME framework helpful. CONCLUSION: Use of the OMP improved diagnostic reasoning in NP trainees. The OMP and RIME framework provided standardization of precepting and trainee discussions on improvements.


Subject(s)
Nurse Practitioners , Preceptorship , Primary Health Care , Humans , Nurse Practitioners/education , Preceptorship/methods , Preceptorship/standards , Quality Improvement , Clinical Competence/standards , Clinical Competence/statistics & numerical data , Internship and Residency/methods , Education, Nursing, Graduate/methods
5.
Matern Child Health J ; 28(9): 1539-1550, 2024 Sep.
Article in English | MEDLINE | ID: mdl-38904903

ABSTRACT

OBJECTIVE: Child neglect is a public health concern with negative consequences that impact children, families, and society. While neglect is involved with many pediatric hospitalizations, few studies explore characteristics associated with neglect types, social needs, and post-discharge care. METHODS: Data on neglect type, sociodemographics, social needs, inpatient consultations, and post-discharge care were collected from the electronic medical record for children aged 0-5 years who were hospitalized with concern for neglect during 2016-2020. Frequencies and percentages were calculated to determine sample characteristics. The Chi-square Test for Independence was used to evaluate associations between neglect type and other variables. RESULTS: The most common neglect types were inadequate nutrition (40%), inability to provide basic care (37%), intrauterine substance exposure (25%), combined types (23%), and inadequate medical care (10%). Common characteristics among neglect types included age less than 1 year, male sex, Hispanic ethnicity, public insurance, past involvement with Child Protective Services, and inpatient consultation services (social work, physical therapy, and occupational therapy), and post-discharge recommendations (primary care, physical therapy, and regional center). Neglect type groups varied by child medical history, social needs, and discharge recommendations. Statistically significant associations supported differences per neglect type. CONCLUSIONS: Our findings highlight five specific types of neglect seen in an impoverished and ethnically diverse geographic region. Post-discharge care needs should focus on removing social barriers and optimizing resources, in particular mental health, to mitigate the risk of continued neglect. Future studies should focus on prevention strategies, tailored interventions, and improved resource allocations per neglect type and discharge location.


Subject(s)
Child Abuse , Hospitalization , Humans , Female , Male , Child, Preschool , Infant , Child Abuse/statistics & numerical data , Risk Factors , Hospitalization/statistics & numerical data , Hospitals, Pediatric/statistics & numerical data , Infant, Newborn
6.
Heart Lung ; 64: 62-73, 2024.
Article in English | MEDLINE | ID: mdl-38043432

ABSTRACT

BACKGROUND: Congenital heart disease (CHD) is the most common birth defect worldwide. Neurocognitive deficits and psychiatric disorders, which can impact daily life, have been reported in over 50% of adolescents and young adults with moderate to complex CHD. OBJECTIVE: Conduct a systematic review of sex, clinical, psychological and social determinants of health (SDoH) factors affecting neurocognition in adults with CHD post-cardiac surgery. METHODS: PubMed, Cumulated Index to Nursing and Allied Health Literature, and Embase were searched for relevant studies over the past 5 years. Thirteen articles met inclusion criteria of: 1) CHD post-cardiac surgery, 2) age ≥ 18 years, and 3) used a validated measure of neurocognition. RESULTS: A total of 507 articles were identified. After screening, 30 articles underwent full text review yielding 13 eligible articles. Twelve articles reported deficits in multiple domains including executive function, intellectual functioning, visuospatial ability, and verbal fluency in more complex CHD. Only three studies examined cognition based on sex, with female and lower parental SES associated with worse cognitive outcomes. Most studies were from Europe, predominantly sampled Caucasian participants, had heterogeneous samples of CHD complexity, and lacked standardized cognitive measures which limited generalizability of findings. CONCLUSIONS: Adults with CHD present with a wide variety of cognitive deficits, with some associations with sex, clinical history, and SDoH factors. It remains unclear to what degree these factors affect cognition in adults with moderate to complex CHD. Future longitudinal studies should focus on age-related effects on cognition and potential health care disparities in diverse CHD samples.


Subject(s)
Cardiac Surgical Procedures , Cognitive Dysfunction , Heart Defects, Congenital , Adolescent , Young Adult , Humans , Female , Heart Defects, Congenital/complications , Heart Defects, Congenital/surgery , Cardiac Surgical Procedures/adverse effects , Cognition , Cognitive Dysfunction/complications
7.
Cardiol Young ; 34(4): 803-808, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37850442

ABSTRACT

BACKGROUND: Low pre-albumin, body mass index, and thiamine levels have been associated with poor nutritional status and cognitive/memory deficits in adult heart failure patients. However, the relationship of these nutritional/dietary intake biomarkers to cognition has not been assessed in adolescents post-Fontan procedure and healthy controls. METHODS: This is a cross-sectional study. Adolescents (14-21 years of age) post-Fontan completion were recruited from paediatric cardiology clinics and controls from the community. The Montreal Cognitive Assessment was administered (normal ≥ 26), and blood draw (thiamine [normal 70-110 nmol/L] and pre-albumin levels [adolescent normal 23-45 mg/dL]) and the Thiamine Food Frequency Questionnaire were completed by all participants. RESULTS: Seventy subjects, 40 post-Fontan (mean age 16 ± 1.6, female 51%, Hispanic 44%, hypoplastic left heart syndrome 26%) and 30 controls (mean age 16.8 ± 1.9, female 52%, Hispanic 66%), were participated. Post-Fontan group had lower median total cognitive scores (23 versus 29, p < 0.001), pre-albumin levels (23 versus 27, p = 0.013), and body mass index (20 versus 24, p = 0.027) than controls. Post-Fontan group had higher thiamine levels than controls (127 versus 103, p = 0.033). Lower pre-albumin levels (< 23) and underweight body mass index were associated with abnormal total cognitive scores (p = 0.030). Low pre-albumin level (p = .038) was an independent predictor of worse cognition. CONCLUSION: Lower pre-albumin was an independent predictor for worse cognition in adolescents post-Fontan. Lower pre-albumin levels may reflect chronic liver changes or protein-losing enteropathy seen in Fontan physiology. These findings highlight the possibility for nutrition-induced cognitive changes.


Subject(s)
Cognition Disorders , Fontan Procedure , Heart Defects, Congenital , Child , Adult , Humans , Adolescent , Female , Cross-Sectional Studies , Cognition , Albumins , Thiamine , Heart Defects, Congenital/surgery
8.
J Am Assoc Nurse Pract ; 35(10): 620-628, 2023 Oct 01.
Article in English | MEDLINE | ID: mdl-37471528

ABSTRACT

BACKGROUND: An estimated 1.4 million adults in the United States have congenital heart disease (CHD). As this population grows and many pursue postsecondary education, these adults' health care needs and concerns should be at the forefront for providers, particularly nurse practitioners, at college health centers. PURPOSE: To understand how college health centers and providers identify and manage the care of students with chronic conditions to further support their health care transition, with a focus on students with CHD. METHODOLOGY: Qualitative key informant interviews were performed with providers at five college health centers to understand the processes in place and the challenges health care providers on college campuses face when caring for students with CHD. RESULTS: Most of the college health centers did not have formalized processes in place to care for these students. Although many felt that they had the capabilities in their health centers to manage these students' maintenance/preventive care needs, fewer felt comfortable with their urgent or emergent care needs. The onus was often on students or parents/guardians to initiate these transitions. CONCLUSIONS: This study highlights some challenges to providing care to students with chronic conditions like CHD. More collaborative relationships with specialists may be critical to ensuring that all the care needs of chronic disease students are met on college campuses. IMPLICATIONS: Nurse practitioners, who often staff these clinics, are well positioned to support this transition onto campuses and lead the development of processes to identify these students, ease care management transitions, and ensure easy provider communication that allow students with chronic diseases to thrive on campus.


Subject(s)
Heart Defects, Congenital , Transition to Adult Care , Humans , Young Adult , United States , Students , Universities , Heart Defects, Congenital/therapy , Chronic Disease
9.
J Dent Educ ; 87(6): 774-783, 2023 Jun.
Article in English | MEDLINE | ID: mdl-36942748

ABSTRACT

PURPOSE: To evaluate the application of knowledge, attitudes, and skills learned in an oral health education program among pediatric dental and medical residents, and pediatric and family nurse practitioners (PNPs and FNPs). METHODS: A mixed methods study design included a year-end online survey and focus groups. Eighty participants completed the survey (94%) and seven focus groups were conducted (n = 69) representing each of the four cohorts in 2020-2022. Analysis of variance was used to assess differences in survey responses by dental/medical specialty. Focus group audio recordings were analyzed using Atlas.ti.22 to identify common themes. RESULTS: The program increased knowledge and skills in oral health core competencies and positive attitudes regarding oral health education. All PNPs (100%) and most pediatric medical residents (94%) and FNPs (91%) strongly agreed/agreed that the oral health program led to an increase in screening for early childhood caries, more confidence in applying fluoride varnish and providing oral health anticipatory guidance during patient visits. Most pediatric medical residents, PNPs and FNPS (98%) strongly agreed/agreed that primary care providers should incorporate oral health into their practice and provide referrals to dental professionals as part of well-child visits. CONCLUSIONS: The program improved oral health-related knowledge, attitudes and skills among dental and medical primary care providers. Future oral health education programs for health care professionals can use this model to help bridge the gap between dental and primary care and ultimately improve access to preventive oral health care for children and families.


Subject(s)
Dental Caries , Child , Humans , Child, Preschool , Dental Caries/prevention & control , Dental Caries/diagnosis , Oral Health , Surveys and Questionnaires , Attitude of Health Personnel , Health Education , Health Education, Dental
10.
J Am Assoc Nurse Pract ; 35(9): 552-558, 2023 Sep 01.
Article in English | MEDLINE | ID: mdl-36729598

ABSTRACT

ABSTRACT: Many interdisciplinary oral health education programs have been implemented for pediatric primary care providers (e.g., pediatric nurse practitioner [PNP]) to raise awareness and gain skills related to the prevention of early childhood caries (ECC). However, no studies have evaluated if these educational programs provided to PNPs during their training resulted in clinical practice behavior changes. A 33-item survey was designed on a web-based platform (Survey Monkey) and distributed to 71 PNP graduates. The survey included demographics, current clinical practice, clinical practice behaviors, and perceived barriers to practice. Descriptive statistics were used to assess the survey items and thematic analyses on the open-ended questions. The survey response rate was 70% (50/71 PNPs). Most practicing PNPs were in acute care or specialty clinics (n = 33; 66%) where oral health was not part of the focused visit. Majority used knowledge learned in assessment and anticipatory guidance skills. However, only 14% of primary care providers were applying fluoride varnish with 10% billing for this procedure. Barriers to application were time, available supplies, COVID protocols, lack of support staff, or not billing due to minimal reimbursement. Many primary care-trained PNPs were practicing in acute or subspecialty areas where prevention of ECC is not viewed as part of their focused visit. Pediatric nurse practitioners working in primary care demonstrated some clinical practice changes. However, areas for improvement are time to perform a risk assessment and application of fluoride varnish, access to these supplies, and standard billing and insurance reimbursement for these preventable services.


Subject(s)
COVID-19 , Dental Caries , Nurse Practitioners , Child, Preschool , Humans , Pediatric Nurse Practitioners , Fluorides, Topical , Follow-Up Studies , Dental Caries/prevention & control , Health Education , Nurse Practitioners/education
11.
J Am Assoc Nurse Pract ; 35(1): 5-11, 2023 Jan 01.
Article in English | MEDLINE | ID: mdl-36602473

ABSTRACT

ABSTRACT: Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral condition in children. Current guidelines recommend that Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-V) criteria be met before diagnosing ADHD. However, 14-49% of providers are not documenting the use of DSM-V criteria in screening and diagnosis. The use of a standardized electronic health record (EHR) ADHD template is a potential option to assist providers with documenting the DSM-V criteria. The aim for this project was to provide a 1-hour educational in-service on the use of the DSM-V criteria, Vanderbilt rating scale, and a revised EHR ADHD template, and to assess provider use pre and post intervention. Results showed that few providers (n = 1; 2%) document using DSM-V criteria preintervention and post intervention with only a modest increase in template use (n = 3; 5%). However, there were statistical differences between provider type with advanced practice registered nurses and physician assistants screening more frequently using the EHR DSM-V ADHD template compared with physicians (p = .009). Future studies are needed to evaluate barriers to use, including practice preference, openness to change, and other factors that may affect provider workflow.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Physicians , Humans , Child , Attention Deficit Disorder with Hyperactivity/diagnosis , Electronic Health Records , Diagnostic and Statistical Manual of Mental Disorders , Educational Status
12.
Circ Cardiovasc Qual Outcomes ; 16(1): e000113, 2023 01.
Article in English | MEDLINE | ID: mdl-36519439

ABSTRACT

Continuous advances in pediatric cardiology, surgery, and critical care have significantly improved survival rates for children and adults with congenital heart disease. Paradoxically, the resulting increase in longevity has expanded the prevalence of both repaired and unrepaired congenital heart disease and has escalated the need for diagnostic and interventional procedures. Because of this expansion in prevalence, anesthesiologists, pediatricians, and other health care professionals increasingly encounter patients with congenital heart disease or other pediatric cardiac diseases who are presenting for surgical treatment of unrelated, noncardiac disease. Patients with congenital heart disease are at high risk for mortality, complications, and reoperation after noncardiac procedures. Rigorous study of risk factors and outcomes has identified subsets of patients with minor, major, and severe congenital heart disease who may have higher-than-baseline risk when undergoing noncardiac procedures, and this has led to the development of risk prediction scores specific to this population. This scientific statement reviews contemporary data on risk from noncardiac procedures, focusing on pediatric patients with congenital heart disease and describing current knowledge on the subject. This scientific statement also addresses preoperative evaluation and testing, perioperative considerations, and postoperative care in this unique patient population and highlights relevant aspects of the pathophysiology of selected conditions that can influence perioperative care and patient management.


Subject(s)
Heart Defects, Congenital , Surgical Procedures, Operative , Adult , United States/epidemiology , Humans , Child , American Heart Association , Heart Defects, Congenital/diagnosis , Heart Defects, Congenital/epidemiology , Heart Defects, Congenital/surgery , Risk Factors , Reoperation , Postoperative Care , Surgical Procedures, Operative/adverse effects , Surgical Procedures, Operative/methods
13.
Qual Life Res ; 32(4): 1095-1105, 2023 Apr.
Article in English | MEDLINE | ID: mdl-36520266

ABSTRACT

PURPOSE: To (1) Compare vision-related quality of life (VRQOL) in adolescent and young adult (AYA) unilateral versus bilateral retinoblastoma (RB) survivors using a vision-targeted measure and a generic health-related quality of life (HRQOL) measure and (2) Assess associations among VRQOL and generic HRQOL domains and overall QOL and estimate associations of the VRQOL and HRQOL domains with overall QOL. METHODS: The National Institute for Health (NIH) Toolbox® VRQOL instrument, PROMIS®-29 Profile v 2.1, and a single-item QOL measure were administered in a cross-sectional study of 101 RB survivors. Reliability for multi-item scales was estimated. Product-moment and Spearman rank correlation coefficients and stepwise ordinary least squares were used to measure associations of other variables with overall QOL. RESULTS: Significantly worse VRQOL was reported by bilateral than unilateral RB survivors. Cronbach's alpha coefficients for all VRQOL scales ranged from 0.83 to 0.95. Medium to large correlations were found between all NIH Toolbox® VRQOL scales and the PROMIS®-29 measures. Depression and ability to participate in social roles and activities from the PROMIS®-29 Profile accounted for 38% of the variance in overall QOL with the psychosocial domain of the NIH Toolbox® VRQOL explaining 16% of the variance. CONCLUSION: VRQOL is impaired in bilateral RB survivors. VRQOL is associated substantially with the PROMIS-29 generic HRQOL measure but has significant unique associations with overall QOL. The NIH Toolbox® VRQOL measure provides important information about the vision-related effects on daily life of AYA RB survivors.


Subject(s)
Retinal Neoplasms , Retinoblastoma , Adolescent , Young Adult , Humans , Quality of Life/psychology , Retinoblastoma/psychology , Cross-Sectional Studies , Reproducibility of Results , Surveys and Questionnaires , Retinal Neoplasms/psychology , Survivors/psychology
14.
J Pediatr Hematol Oncol Nurs ; 39(6): 342-357, 2022.
Article in English | MEDLINE | ID: mdl-35674414

ABSTRACT

Background: Retinoblastoma (RB) is a malignant intraocular tumor diagnosed in early childhood that requires extensive medical and surgical treatment at a young age. Health-related quality of life (HRQOL) is thought to be diminished due to visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, few studies have identified variables associated with HRQOL among those with RB. Purpose: To compare HRQOL of adolescents and young adults (AYAs) with RB to matched controls and to identify predictors of HRQOL in RB survivors. Methods: Using a cross-sectional design, 198 AYAs (101 RBs and 97 controls) completed HRQOL (PROMIS®-29 profile) and psychosocial questionnaires (Rosenberg self-esteem scale, multidimensional scale of perceived social support, and Hollingshead index for socioeconomic status). Clinical variables (age at diagnosis, visual acuity, laterality, heredity, treatment regime, and anesthesia exposure) were extracted from the medical record. Correlates of HRQOL were estimated using linear regression models. Results: RB survivors reported similar HRQOL compared to controls. Physical function (p < .001), social support (p = .013), and self-esteem (p = .028) were lower in the RB group compared to controls. Visual acuity and self-esteem accounted for 52% of the variance in PROMIS physical health summary scores and self-esteem accounted for 38% of the variance in mental health summary scores. Conclusion: Despite deficits in physical function and self-esteem HRQOL in RB survivors was comparable to healthy counterparts. However, the majority of RB survivors in this study had normal visual acuity. Clinicians should explore ways to enhance self-esteem in RB survivors.


Subject(s)
Retinal Neoplasms , Retinoblastoma , Adolescent , Young Adult , Child, Preschool , Humans , Quality of Life/psychology , Cross-Sectional Studies , Survivors/psychology
15.
World J Pediatr Congenit Heart Surg ; 13(4): 443-450, 2022 07.
Article in English | MEDLINE | ID: mdl-35585726

ABSTRACT

Background: Infants born with single ventricle heart disease require in-home medicalized care during the interstage period (time between the first and second staged heart surgery). These caregivers rely on extended family, friends, and hired caretakers to provide respite time. However, the coronavirus pandemic removed these families' options due to stay-at-home and social distancing directives. We explored the caregivers' experiences during the interstage period, including impacts on their lifestyle, as they managed their infants' critical needs during the coronavirus disease 2019 pandemic. Method: In-person or telephonic interviews of 14 caregivers interviewed once or twice were conducted between November 2019 and July 2020. Constructivist Grounded Theory methodology guided both data collection and analysis for the inductive and abductive exploration of caregivers' experiences. Results: Data analysis led to the development of 2 concepts: Accepting and adapting to a restrictive home environment and Reconciling what is and what is yet to come. Refinement of the relationship between the 2 concepts led to the development of a theory grounded in the words and experiences of the participants called: A Continuous Process of Compromise. Conclusions: Our findings increase understanding of caregivers' experiences related to psychosocial and lifestyle impacts and the need for additional support during the interstage period.


Subject(s)
COVID-19 , Home Care Services , Hypoplastic Left Heart Syndrome , Humans , Hypoplastic Left Heart Syndrome/surgery , Infant , Pandemics , Treatment Outcome
16.
J Am Assoc Nurse Pract ; 34(5): 755-762, 2022 May 01.
Article in English | MEDLINE | ID: mdl-35102094

ABSTRACT

ABSTRACT: Pediatric nurse practitioners (PNPs) are a significant workforce in primary care and are uniquely positioned to improve oral health in children through ongoing surveillance in the well-child visit. The purpose of this study was to evaluate PNP student satisfaction and knowledge gained with the integration of the Strategic Partnership for Interprofessional Collaborative Education in Pediatric Dentistry (SPICE-PD) oral health education program into the first-year primary care curriculum. A descriptive, comparative design examined dental test scores across the pre-SPICE-PD (2013-2014; n = 26) and post-SPICE-PD (2015-2020; n = 55) cohorts. An electronic survey was completed (n = 47; 67%), and focus group (n = 12) audio-recordings were analyzed using Atlas.ti 8.0. Chi-square test and independent samples t-test were used to assess differences between groups. The SPICE-PD students reported improved knowledge and skill in clinical practice. Focus group themes were oral health education was beneficial, impact of coronavirus disease 2019, and suggestions for improvement. Mean dental test scores improved pre- and post-SPICE-PD (83 vs. 93; p < .001). The SPICE-PD oral health education improved knowledge and was highly satisfying for students. Pediatric nurse practitioners are ideally positioned to integrate oral health into primary care services, thereby improving access to care and ultimately reducing or mitigating early childhood caries. Evaluation of PNP postgraduation practices in the primary care setting is needed to assess whether improved knowledge results in practice change.


Subject(s)
COVID-19 , Oral Health , Child , Child, Preschool , Curriculum , Humans , Oral Health/education , Pediatric Nurse Practitioners , Primary Health Care
17.
Cardiol Young ; 32(3): 465-471, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34162456

ABSTRACT

BACKGROUND: Caring for infants after the first-stage palliative surgery for single-ventricle heart disease bring challenges beyond the usual parenting responsibilities. Current studies fail to capture the nuances of caregivers' experiences during the most critical "interstage" period between the first and second surgery. OBJECTIVES: To explore the perceptions of caregivers about their experiences while transitioning to caregiver roles, including the successes and challenges associated with caregiving during the interstage period. METHODS: Constructivist Grounded Theory methodology guided the collection and analysis of data from in person or telephonic interviews with caregivers after their infants underwent the first-stage palliative surgery for single-ventricle heart disease, and were sent to home for 2-4 months before returning for their second surgery. Symbolic interactionism informed data analyses and interpretation. RESULTS: Our sample included 14 parents, who were interviewed 1-2 times between November, 2019 and July, 2020. Most patients were mothers (71%), Latinx (64%), with household incomes <$30K (42%). Data analysis led to the development of a Grounded Theory called Developing a Sense of Self-Reliance with three categories: (1) Owning caregiving responsibilities despite grave fears, (2) Figuring out how "to make it work" in the interstage period, and (3) Gaining a sense of self-reliance. CONCLUSIONS: Parents transitioned to caregiver roles by developing a sense of self-reliance and, in the process, gained self-confidence and decision-making skills. Our study responded to the key research priority from the AHA Scientific Statement to address the knowledge gap in home monitoring for interstage infants through qualitative research design.


Subject(s)
Heart Defects, Congenital , Hypoplastic Left Heart Syndrome , Univentricular Heart , Caregivers , Female , Heart Defects, Congenital/surgery , Humans , Infant , Palliative Care , Parents
18.
Brain Behav ; 11(2): e01977, 2021 02.
Article in English | MEDLINE | ID: mdl-33410605

ABSTRACT

INTRODUCTION: Adolescents with single ventricle congenital heart disease (SVHD) show functional deficits, particularly in memory and mood regulation. Hippocampi are key brain structures that regulate mood and memory; however, their tissue integrity in SVHD is unclear. Our study aim is to evaluate hippocampal volumes and their associations with memory, anxiety, and mood scores in adolescents with SVHD compared to healthy controls. METHODS: We collected brain magnetic resonance imaging data from 25 SVHD (age 15.9 ± 1.2 years; 15 male) and 38 controls (16.0 ± 1.1 years; 19 male) and assessed memory (Wide Range Assessment of Memory and Learning 2, WRAML2), anxiety (Beck Anxiety Inventory, BAI), and mood (Patient Health Questionnaire 9, PHQ-9) functions. Both left and right hippocampi were outlined and global volumes, as well as three-dimensional surfaces were compared between groups using ANCOVA and associations with cognitive and behavioral scores with partial correlations (covariates: age and total brain volume). RESULTS: The SVHD group showed significantly higher BAI (p = .001) and PHQ-9 (p < .001) scores, indicating anxiety and depression symptoms and significantly reduced WRAML2 scores (p < .001), suggesting memory deficits compared with controls. SVHD group had significantly reduced right global hippocampal volumes (p = .036) compared with controls, but not the left (p = .114). Right hippocampal volume reductions were localized in the CA1, CA4, subiculum, and dentate gyrus. Positive correlations emerged between WRAML2 scores and left (r = 0.32, p = .01) and right (r = 0.28, p = .03) hippocampal volumes, but BAI and PHQ-9 did not show significant correlations. CONCLUSION: Adolescents with SVHD show reduced hippocampal volumes, localized in several sites (CA1, CA4, subiculum, and dentate gyrus), which are associated with memory deficits. The findings indicate the need to explore ways to improve memory to optimize academic achievement and ability for self-care in the condition.


Subject(s)
Heart Diseases , Hippocampus , Adolescent , Hippocampus/diagnostic imaging , Humans , Magnetic Resonance Imaging , Male , Memory , Memory Disorders/diagnostic imaging
19.
Cardiol Young ; 31(2): 252-259, 2021 Feb.
Article in English | MEDLINE | ID: mdl-33176897

ABSTRACT

BACKGROUND: Survivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease. METHODS: A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review. RESULTS: Fourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including "Don't assume": Pervasive ableism; "The elephant in the room": Uncertain future; "Everyone finds something to pick on": Bullying at school; "They know what I have been through": Social support. The overall essence generated from the data was "optimism despite profound uncertainty." CONCLUSIONS: Adolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect "optimism despite profound uncertainty."


Subject(s)
Heart Diseases , Interpersonal Relations , Adolescent , Humans , Schools , Social Support , Uncertainty
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