Asunto(s)

RESUMEN

BACKGROUND: Technological advancements have extended the lifespan of individuals with congenital heart disease (CHD), but physical and mental health issues can affect their life and job satisfaction. AIMS: This study examined whether grit can protect full-time employed adults with CHD from depression by exploring its mediating role between depressive symptoms and life or job satisfaction. METHODS: A cross-sectional design involved 181 adults with CHD assessed using the Patient Health Questionnaire, Grit-10, Satisfaction with Life Scale, and Basic Psychological Need Satisfaction at Work Scale. Data analysis was conducted with SPSS and Smart PLS software for partial least squares structural equation modeling, adhering to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines. RESULTS: Indicated that depressive symptoms were negatively correlated with grit, life satisfaction, and job satisfaction, while grit was positively correlated with both satisfaction measures. Grit partially mediated the relationship between depressive symptoms and life/job satisfaction, accounting for 30.70 % and 29.11 % of the variance, respectively. CONCLUSIONS: Grit significantly mitigates the negative impact of depressive symptoms on life and job satisfaction in full-time employed adults with CHD. Nurses should identify signs of depression in adults with CHD and evaluate their grit levels. Interventions to increase grit and reduce depressive symptoms could enhance life and job satisfaction.

Asunto(s)

RESUMEN

In this narrative medicine essay, a pediatric and internal medicine physician and her husband reach a difficult crossroads upon learning that their unborn daughter has a severe heart defect.

Asunto(s)

RESUMEN

PURPOSE: Parenting resilience is essential for the well-being and development of children with chronic illnesses. Given the importance of parenting resilience in this context, this study explored the nature of parenting resilience among mothers caring for adolescents with congenital heart disease (CHD). DESIGN AND METHODS: We adopted Husserl's phenomenological approach and conducted semistructured in-depth interviews. In addition, we conducted purposive sampling at the pediatric cardiology outpatient departments of 2 medical centers in Taiwan to recruit 11 mothers of adolescents with CHD; all of these adolescents had received open-heart surgery. Furthermore, we analyzed data by using Colaizzi's approach, and we adhered to the COnsolidated criteria for REporting Qualitative research checklist. RESULTS: Mothers caring for adolescents with CHD was a dynamic process involving problem solving. The 11 mothers in this study employed resilience to remain strong, provided a sense of normalcy for their children, and approached challenges calmly and bravely. We uncovered three major themes among these mothers: "providing support for the child, "facing challenges with equanimity," and "overcoming adversity through positivity and gratitude." CONCLUSIONS: The present results provide a deeper understanding of how mothers caring for adolescents with CHD can cultivate resilience. PRACTICE IMPLICATIONS: The study's findings can inform transitional programs for adolescents with CHD and their families, with nursing professionals supporting mothers' resilience.

Asunto(s)

RESUMEN

BACKGROUND: Adults with congenital heart disease (ACHD) are at risk for lower quality of life (QOL) and psychological health. Behavioral interventions to meet their psychosocial needs are lacking. The aim of this study is to evaluate the feasibility of implementing the Promoting Resilience in Stress Management (PRISM) intervention in ACHD and its efficacy in increasing resilience in this population. METHODS: We designed a phase II randomized controlled clinical trial of patients with moderate or complex ACHD, physiological stages C or D. Enrolled participants will be randomized to receive PRISM or usual care. PRISM is a manualized, skills-based behavioral intervention comprised of four one-on-one sessions targeting resilience resources (stress-management, goal-setting, cognitive reframing, meaning making), an optional session on advance care planning, and a facilitated family meeting. Participants in both groups will complete study questionnaires at enrollment and 3-months later. The primary aim is to describe feasibility, namely the proportions of patients who a) enroll in the study among those eligible, and b) complete the PRISM intervention among those randomized to that arm. We will also evaluate PRISM's efficacy by using linear regression models to compare changes in mean resilience scores between assigned groups. In exploratory analyses, we will evaluate effects on QOL, psychological distress, perceived competence for health care management, and comfort with advance care planning. DISCUSSION: This study will provide rigorous evidence to determine the feasibility and efficacy of a brief intervention to promote resilience and psychosocial health in ACHD. Findings may guide the development of a future multi-site effectiveness study. CLINICAL TRIAL REGISTRATION: NCT04738474.

Asunto(s)

RESUMEN

OBJECTIVES: As part of a wider study, our aim was to elicit perspectives of people with congenital heart disease (CHD) and/or their parents/carers about their experiences of healthcare and what is important to them when receiving care. DESIGN AND SETTING: A qualitative study involving a series of closed, asynchronous, online discussion forums underpinned by an interpretivist framework and set up and moderated by three patient charities via their Facebook pages. PARTICIPANTS: People with CHD and parents/carers of people with CHD from the UK. RESULTS: Five forums were run for 12-24 weeks across the three charities, and 343 participants signed up to the forums. Four linked themes related to processes of care were identified following thematic analysis of the transcripts: relationships and communication; access and coordination; experience of discrete episodes of care and psychological support. These impacted how care was experienced and, for some patients, outcomes of CHD and its treatment as well as broader health outcomes. In addition, context relating to stages of the patient journey was described, together with patient-related factors such as patients' knowledge and expertise in their own condition. CONCLUSIONS: People with CHD and their parents/carers want individualised, person-centred care delivered within an appropriately resourced, multidisciplinary service. Although examples of excellent care were provided it is evident that, from the perspective of patients and parents/carers, some National Health Service Standards for people with CHD were not being met.

Asunto(s)

RESUMEN

Importance: Family-centered care recognizes families as central to child health and well-being and prioritizes clinician collaboration with families to ensure optimal pediatric care and outcomes. Clinician interpersonal sensitivity and communication skills are key to this approach. Objective: To examine perceptions of and factors associated with family-centered care among clinicians working in pediatric and congenital heart care. Design, Setting, and Participants: In this cross-sectional study, participants from diverse clinical disciplines (pediatric cardiology, cardiothoracic surgery, nursing, anesthesia, neonatology, intensive care, psychology, and others), completed an online survey between June 2020 and February 2021. Participants included physicians, surgeons, nurses, and allied and mental health professionals at an Australian quaternary pediatric hospital network. Statistical analysis was performed from August 2022 to June 2023. Main Outcomes and Measures: Family-centered care across 4 domains (showing interpersonal sensitivity, treating people respectfully, providing general information, and communicating specific information) was measured using the validated Measure of Processes of Care for Service Providers. Clinician burnout (emotional exhaustion, depersonalization, and personal accomplishment), confidence responding to families' psychosocial needs, and psychological, clinical role, and sociodemographic factors were also assessed. Informed by theory, hierarchical linear regression was used to identify factors associated with family-centered care. Results: There were 212 clinicians (177 women [84.3%]; 153 nurses [72.2%], 32 physicians [15.1%], 22 allied and mental health professionals [10.4%], 5 surgeons [2.3%]; 170 [80.2%] aged 20-49 years) who participated (55% response rate). Of the 4 family-centered care domains, scores for treating people respectfully were highest and associated with greater clinician confidence responding to families' psychosocial needs (effect size [ß], 0.59 [95% CI, 0.46 to 0.72]; P < .001), lower depersonalization (ß, 0.04 [95% CI, -0.07 to -0.01]; P = .02), and a greater sense of personal accomplishment at work (ß, 0.02 [95% CI, 0.01 to 0.04]; P = 0.04). Greater interpersonal sensitivity was associated with greater confidence responding to families' psychosocial needs (ß, 0.80 [95% CI, 0.62 to 0.97]; P < .001), a greater sense of personal accomplishment at work (ß, 0.03 [95% CI, 0.01 to 0.05]; P = .04), and lower use of approach-based coping, such as problem-solving (ß, 0.37 [95% CI, -0.71 to -0.02]; P = .04). Conclusions and Relevance: In this cross-sectional study, burnout and confidence responding to families' psychosocial needs were associated with clinicians' perceptions of family-centered care. These findings suggest that targeted interventions to address these factors may benefit clinicians and also potentially strengthen the practice of family-centered care in pediatric and congenital heart settings.

Asunto(s)

RESUMEN

BACKGROUND: To characterize global and health-related quality of life (QOL) among adults with Fontan physiology enrolled in the Australian and New Zealand Fontan Registry (ANZFR), and identify sociodemographic, clinical, psychological, and relational factors associated with outcomes. METHODS AND RESULTS: Using a cross-sectional survey design, 66 adults with Fontan physiology (58% women; mean age, 29.6±7.7 years; range, 18-50 years) completed validated self-report measures. Health-related QOL was assessed using the Pediatric Quality of Life Inventory, and global QOL was assessed using a visual analog scale (0-10). Participants reported lower total health-related QOL (P<0.001), as well as lower physical (P<0.001) and social (P=0.002) functioning compared with normative data. Median global QOL was 7.0 (interquartile range: 5.0-8.0) and most participants (71%) rated their QOL ≥6. For health-related QOL, age, sex, university education, and length of hospital stay in the past 12 months explained 27% of the variance in scores, while general psychological stress, medical traumatic stress, communication problems, and access to emotional support explained a further 44% of variance (final model: 71% of variance explained). For global QOL, sociodemographic and clinical factors explained 20% of the variance in scores, while psychological stress and sense of coherence explained a further 24% (final model: 44% of variance explained). CONCLUSIONS: Adults with Fontan physiology reported lower overall health-related QOL compared with community-based norms. Variance in QOL outcomes were predominantly attributable to psychological and relational factors. Tailored screening and assessment to identify Fontan patients at greatest risk of lower QOL, and a proactive approach to supportive care, are needed.

Asunto(s)

RESUMEN

BACKGROUND: The aim of this study was to investigate the effects of a hospital-to-home care transition (H2H-CT) program on perceived stress and readiness for hospital discharge (RHD) in mothers of children with congenital heart disease (CHD) undergoing corrective surgery. METHODS: This study used a quasi-experimental design and involved 78 mother-child dyads, 40 dyads in the intervention group and 38 dyads in the control group, who were affected by CHD undergoing corrective surgery. The participants received the H2H-CT program, which consisted of six face-to-face training sessions during hospitalization and six telephone counselling sessions. For perceived stress, data were collected at four intervals, including baseline, immediately, one month and three months after completion of the intervention. For RHD, data were collected at two times: baseline and immediately after the intervention. RESULTS: The results demonstrated a statistically significant reduction in the mean perceived stress score in mothers of children with CHD in intervention group before, immediately, four weeks and eight weeks after H2H-CT (P < 0.001). The results also indicated a significant increase in the mean RHD score in the intervention group following H2H-CT (P < 0.001). CONCLUSION: The H2H-CT program was found to be an effective intervention in reducing perceived stress and increasing RHD in mothers of children with CHD who undergoing corrective surgery. IMPLICATIONS TO PRACTICE: The results can be used by the nursing planners, nursing instructors, and pediatric nurses to use the results to enhance the mental health of mothers and enable them to provide quality care at home.

Asunto(s)

RESUMEN

PURPOSE: Currently, nearly 90% of patients with congenital heart disease (CHD) reach adulthood in relatively good health. Structured transition programs have emerged to support adolescents and young adults in transitioning to adult care structures, improve their autonomy, and limit healthcare ruptures. The TRANSITION-CHD randomized controlled trial aimed to assess the impact of a transition program on health-related quality of life (HRQoL) in adolescents and young adults with CHD. METHODS: From January 2017 to February 2020, 200 subjects with a CHD, aged 13-25 years, were enrolled in a prospective, controlled, multicenter study and randomized in two balanced groups (transition program vs. standard of care). The primary outcome was the change in PedsQL self-reported HRQoL score between baseline and 12-month follow-up, using an intention-to-treat analysis. The secondary outcomes were the change in disease knowledge, physical health (cardiopulmonary fitness, physical activity), and mental health (anxiety, depression). RESULTS: The change in HRQoL differed significantly between the transition group and the control group (mean difference = 3.03, 95% confidence interval (CI) = [0.08; 5.98]; p = .044; effect size = 0.30), in favor of the intervention group. A significant increase was also observed in the self-reported psychosocial HRQoL (mean difference = 3.33, 95% CI = [0.01; 6.64]; p = .049; effect size = 0.29), in the proxy-reported physical HRQoL (mean difference = 9.18, 95% CI = [1.86; 16.51]; p = .015; effect size = 0.53), and in disease knowledge (mean difference = 3.13, 95% CI = [1.54; 4.72]; p < .001; effect size = 0.64). DISCUSSION: The TRANSITION-CHD program improved HRQoL and disease knowledge in adolescents and young adults with CHD, supporting the generalization and systematization of similar preventive interventions in pediatric and congenital cardiology.

Asunto(s)

RESUMEN

BACKGROUND: This study investigates how congenital heart diseases (CHD) characteristics and interventions affect cognitive and verbal skills in Arab children, while also uncovering previously unexplored connections between these skills and the quality of life (QoL) scores as perceived by both children and parents. METHODS: A cross-sectional study was conducted in Jordan, involving 62 children with CHD aged 6-16. Data were collected through standardized intelligence tests (namely The Raven's Progressive Matrices Test and The Wechsler Intelligence Scale for Children) and QoL assessments. RESULTS: Sex, disease severity, cyanosis, CHD defect status, conducted operations, and types of interventions did not significantly influence cognitive scores. However, a significant difference was observed in Wechsler's scores between cyanotic and non-cyanotic children (p < .01) and between severe and moderate cases (p = .01). Further, a significant positive correlation was identified between Wechsler's Scores and QoL reported by parents (r = 0.33, p < .01). This correlation was particularly pronounced in the social and school functioning dimensions of QoL. CONCLUSIONS: This study highlights the need for personalized care approaches for children with CHDs based on their individual characteristics. While cognitive abilities did not directly correlate with children's QoL reports, a significant positive correlation between verbal skills and QoL reported by parents underscores the importance of effective communication in assessing a child's overall well-being. Future research should further examine the cognitive development in this population, employing neurocognitive investigations and longitudinal studies to gain a deeper understanding of their cognitive profiles and trajectories.

Asunto(s)

RESUMEN

As survivors of early cardiac surgery are at high risk of neurodevelopmental impairments, systematic health observations of children with critical congenital heart disease (CCHD) throughout childhood are recommended to enable early diagnosis and offer interventions to optimize neurodevelopment. A qualitative study using thematic analysis was performed to explore parents' concerns, experiences, and needs regarding the development and received developmental care of their child (0-10 years) during hospital admission and beyond. Data were collected using semi-structured online interviews with 20 parents of children with CCHD. Four major themes were identified: (1) "impact of diagnosis and disease on the family-system," (2) "parental concerns from diagnoses and beyond," (3) "the need for information," and (4) "the need for individualized and family-centered care." The main themes can be divided into 13 sub-themes as impact, concerns, and needs are influenced by various impactful moments from diagnosis and afterwards.     Conclusion: This study confirms the importance of early identification of neurodevelopmental problems by experienced healthcare professionals, especially in the early years when parental expectations and concerns about their child's neurodevelopment are lower. A tailor-made family-centered follow-up program should be offered, which pays attention to both the neurodevelopment of patients with CCHD as well as the mental wellbeing of the entire family system. Furthermore, an online portal is recommended with a variety of reliable, controlled, understandable information from which parents can obtain the desired information to understand better the consequences of specific heart condition and to provide their child with the best possible guidance. What is Known: • Survivors of early cardiac surgery are at high risk of neurodevelopmental impairments; systematic health observations of children with CCHD throughout childhood are strongly recommended. What is New: • Parents need a tailor-made family-centered follow-up program, which pays attention to both the neurodevelopment of patients with CCHD as well as the mental wellbeing of the entire family system. • An online portal offering diverse, trustworthy information and sources would effectively meet parents' needs by providing accessible insights into the potential consequences of specific heart conditions and guiding them in supporting their child optimally.

Asunto(s)

RESUMEN

Background: Families of children with congenital heart disease (CHD) face tremendous stressors in the process of coping with the disease, which threatens the health of families of children with CHD. Studies have shown that nursing interventions focusing on family stress management can improve parents' ability to cope with illness and promote family health. At present, there is no measuring tool for family stressors of CHD. Methods: The items of the scale were generated through qualitative interviews and a literature review. Initial items were evaluated by seven experts to determine content validity. Factor analysis and reliability testing were conducted with a convenience sample of 670 family members. The criterion-related validity of the scale was calculated using scores on the Self-Rating Anxiety Scale (SAS). Results: The CHD Children's Family Stressor Scale consisted of six dimensions and 41 items. In the exploratory factor analysis, the cumulative explained variance of the six factors was 61.085%. In the confirmatory factor analysis, the six factors in the EFA were well validated, indicating that the model fits well. The correlation coefficient between CHD Children's Family Stressor Scale and SAS was r = 0.504 (p < 0.001), which indicated that the criterion-related validity of the scale was good. In the reliability test, Cronbach's α coefficients of six sub-scales were 0.774-0.940, and the scale-level Cronbach's α coefficient value was 0.945. Conclusion: The study indicates that the CHD Children's Family Stressor Scale is valid and reliable, and it is recommended for use in clinical practice to assess CHD children's family stressors.

Asunto(s)

RESUMEN

INTRODUCTION: Congenital heart disease (CHD) is the most prevalent congenital disability globally. This study aimed to describe parents' perspectives on financial stressors related to having a child with CHD using a descriptive qualitative approach. METHOD: Qualitative data were obtained from parents of children with CHD in a cross-sectional web-based survey study. Iterative data analysis was used to develop essential themes that enabled a rich description of 147 parents' perspectives. RESULTS: Parents identified five financial stressors: perpetual worries about health insurance, facing the dilemma of "making too much money," struggling to balance work, worrying over having an emerging adult with CHD, and constant constraints because of financial needs. DISCUSSION: As experts in pediatric care, pediatric advanced practice providers need to work with policymakers to provide further financial assistance and sufficient insurance coverage for families that struggle to balance finances for the whole family and children with CHD.

Asunto(s)

RESUMEN

PURPOSE: To explore the parent-child relationship through the subjective experience of adolescents with congenital heart disease (CHD). DESIGN AND METHODS: A descriptive phenomenology approach was adopted. Twelve adolescents aged from 12 to 18 years with CHD were recruited from the pediatric cardiology clinics at two medical centers in Taiwan. Data were collected through in-depth interviews. Data were analyzed using Colaizzi's phenomenological analysis method, and results were reported in accordance with the Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: The experiences of the adolescents with CHD revealed five themes: 1. the enhancement of self-worth through parents' love; 2. the importance of parental support in desperate situations; 3. the development of a sense of security through mutual understanding; 4. growth under parental expectations; and 5. parental overcontrol disguised as love. CONCLUSIONS: The parent-child relationship encompasses both positive and negative experiences. Adolescents prioritize their relationship with parents over that with peers. PRACTICE IMPLICATIONS: Nurses caring for adolescents with CHD can improve care by recognizing the influence of parental love, support in challenges, mutual understanding, parental expectations, and potential negative consequences of overcontrol. This insight guides effective guidance for adolescents, enhancing parent-child interactions and overall well-being.

Asunto(s)

Asunto(s)

RESUMEN

Psychological trauma, symptoms of post-traumatic stress disorder (PTSD), and mental health conditions are common in adult congenital heart disease (ACHD). There is a gap in research examining PTSD in ACHD using the current Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) criteria in assessing patient characteristics and experiences with trauma-focused treatment. Surveys were offered to outpatients over a 6-month enrollment period to be completed by way of a QR code on their personal smart phone. Patient-reported items include a detailed medical and psychosocial history, the Oslo social support scale, adverse childhood experiences survey, and the PTSD checklist for DSM-5. Of 158 patients (77% moderate or complex heart disease) who provided complete data, a provisional diagnosis of PTSD was found in 48 patients (30%) using a PTSD checklist for DSM-5 cut-off score of ≥31. A positive PTSD screen was associated with younger age, nonwhite race, presence of heart failure, lower New York Heart Association functional class, lower linear quality of life score, lower Oslo social support scale score, an insecure caregiver relation, period of unemployment, emergency department visits, medication nonadherence, and coexisting mental health disorders. Complexity of heart disease and number of surgical and/or catheter-based interventions were not associated with PTSD, although having undergone no cardiac surgeries until adulthood (aged ≥18 years) was associated with a lower prevalence of PTSD. Those who screened positive for PTSD were more likely to report multiple traumatic events, including noncardiac traumatic events. Only 14 of 48 patients (29%) reported a known diagnosis of PTSD, although 44 patients (92%) reported having ever seen a mental health provider. A total of 18 patients (38%) reported currently having a mental health provider. A total of 30 patients (62%) had heard of at least 1 evidence-based trauma-informed therapy, and 14 (29%) had tried at least 1. In conclusion, using the DSM-5 criteria, we observed a high prevalence of potential PTSD in ACHD associated with several novel cardiac and psychosocial patient factors. Future longitudinal studies will be necessary to establish causality. Few patients with ACHD have been formally diagnosed with PTSD or have experience with evidence-based trauma-informed therapies.

Asunto(s)

RESUMEN

This qualitative study explored the lived experiences of eight Sri Lankan mothers of infants with complex congenital heart disease (CCHD) using semi-structured interviews. Four themes were generated as: illness perception, communication with medical staff, challenges faced, and coping mechanisms. These provided insight into the multi-faceted nature of mothers' experiences, importance of medical-caregiver communications and their need for psychosocial services. The findings enhance the limited knowledge of South-Asian primary CCHD caregiver experiences and will help in improving psychosocial support services in Sri Lanka.

Asunto(s)

RESUMEN

Neurodevelopmental disabilities affect up to 50% of survivors of congenital heart disease (CHD). Language difficulties are frequently identified during preschool period and can lead to academic, social, behavioral, and emotional difficulties. Structural brain alterations are associated with poorer neurodevelopmental outcomes in patients with CHD during infancy, childhood, and adolescence. However, evidence is lacking about the functional brain activity in children with CHD and its relationship with neurodevelopment. This study therefore aimed to characterize brain responses during a passive story-listening task in 3-year-old children with CHD, and to investigate the relationship between functional brain patterns of language processing and neurodevelopmental outcomes. To do so, we assessed hemodynamic concentration changes, using functional near-infrared spectroscopy (fNIRS), and neurodevelopmental outcomes, using the Wechsler Preschool and Primary Scale of Intelligence - 4th Edition (WPPSI-IV), in children with CHD (n = 19) and healthy controls (n = 23). Compared to their healthy peers, children with CHD had significantly lower scores on the Verbal comprehension index (VCI), the Vocabulary acquisition index (VAI), the General ability index (GAI), and the Information and the Picture Naming subtests of the WPPSI-IV. During the passive story-listening task, healthy controls showed significant hemodynamic brain responses in the temporal and the temporal posterior regions, with stronger activation in the temporal posterior than in the temporal regions. In contrast, children with CHD showed reduced activation in the temporal posterior regions compared to controls, with no difference of activation between regions. Reduced brain responses in the temporal posterior regions were also correlated with lower neurodevelopmental outcomes in both groups. This is the first study that reveals reduced brain functional responses in preschoolers with CHD during a receptive language task. It also suggests that the temporal posterior activation could be a potential brain marker of cognitive development. These findings provide support for the feasibility of identifying brain correlates of neurodevelopmental vulnerabilities in children with CHD.

Asunto(s)

RESUMEN

AIMS: To understand the compliance, influencing factors, and action path of family cardiac rehabilitation exercise prescriptions for children after congenital heart disease surgery. METHODS AND RESULTS: A random sampling method was used to select 200 paediatric patients and their parents from a paediatric hospital in Shanghai. Among them, 57 cases (28.5%) of children's families followed the cardiac rehabilitation exercise prescription. Path analysis showed that peak oxygen uptake exerted a negative impact on the compliance of family cardiac-rehabilitation prescriptions for patients after congenital heart disease surgery through doctor-patient trust, with a standardized path coefficient of -0.246 (P = 0.001). Disease-related knowledge exerted a positive effect on the compliance of family cardiac-rehabilitation prescriptions for children after congenital heart surgery through doctor-patient trust, with a standardized path coefficient of 0.353 (P < 0.001). The dimension of friend support in social support had a direct positive effect on the compliance of family cardiac-rehabilitation prescriptions for children after cardiac surgery, with a standardized path coefficient of 0.641 (P = 0.006). CONCLUSION: The compliance of cardiac rehabilitation exercise prescription in children with congenital heart disease is not good and is affected by many factors, and there is a complex path relationship between various factors; the kilogram oxygen consumption of the child, the disease-related knowledge of the caregiver, and social support all play important roles in the compliance of the child's family's health prescription. REGISTRATION: ChiCTR2200062022.

Asunto(s)