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1.
Nurs Crit Care ; 2024 May 30.
Artigo em Inglês | MEDLINE | ID: mdl-38816199

RESUMO

BACKGROUND: Family-centred care (FCC), while a core value of paediatric hospitals, has not been well-studied in the paediatric cardiac intensive care unit (PCICU). AIMS: To describe parents' perceptions of FCC provided by nurses in the PCICU during their infant's recovery from neonatal cardiac surgery and explore associations of perceptions of FCC on parent post-traumatic stress (PTS) 4 months post-discharge. STUDY DESIGN: Data obtained from a previously conducted randomized clinical trial (RCT) on telehealth home monitoring after neonatal cardiac surgery at three free-standing paediatric hospitals were analysed from a subset of 164 parents who completed the FCC Scale at hospital discharge, which measures a parent's experience of nursing care that embodies core principles of FCC. The RCT intervention was provided after hospital discharge, having no influence on parent's perception of FCC. The intervention also had no effect on PTS. RESULTS: Perceived FCC was lowest for items 'nurses helped me feel welcomed' and 'nurses helped me feel important in my child's care'. Having 12%-19% points lower perception of FCC at hospital discharge was associated with parent experience of six or more PTS symptoms, at least moderate PTS symptom severity, or PTS disorder diagnosis at 4-month follow-up. Every 10% increase in parental perceptions of FCC was associated with less PTS symptoms (ß = -0.29, SE = 0.12; p = .02) and lower PTS symptom cluster scores of arousal (ß = -0.18, SE = 0.08; p = .02). CONCLUSIONS: Parents who perceived lower FCC during their infants' hospitalization were at increased risk for the development of PTS symptoms, more PTS symptom severity and PTS disorder diagnosis 4-months post-discharge. RELEVANCE TO CLINICAL PRACTICE: Nurses have a prominent role to support the implementation of FCC for infants with cardiac defects and their parents. FCC may positively influence overall parent mental health and well-being, reducing the trauma and distress of the PCICU experience.

2.
Cardiol Young ; 33(8): 1316-1321, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35730320

RESUMO

BACKGROUND & AIMS: Parents of infants with complex CHDs often describe their infants as especially fussy, irritable, and difficult to sooth, which together with the illness caretaking demands add to their stress. Little is known about how the behavioural style or temperament in the early months after discharge relates to parental quality of life. This study aimed to explore the associations between early infant temperament characteristics and parental quality of life in parents of infants with complex CHD. METHODS: This descriptive, cross-sectional study, utilised data collected in a previously described multisite randomised clinical trial in the United States. Multivariable linear regression models were used to examine the associations of interest. FINDINGS: Results demonstrated negative significant associations between most infant temperament subscales and parental quality of life. Higher scores on the Activity (ß = -3.03, p = 0.021), Approach (ß = -1.05, p = 0.021), Adaptability (ß = -3.47, p = 0.004), Intensity (ß = -2.78, p = 0.008), Mood (ß = -4.65, p < 0.001), and Distractibility (ß = -3.36, p = 0.007 were all significantly associated with lower parental quality of life scores, adjusting for parental dyadic adjustment, insurance type, number of medications, and number of unscheduled cardiologist visits. CONCLUSIONS: Parental perceptions of infant's difficult behavioural style or temperament characteristics appear to be associated with poorer quality of life in parents of infants with complex CHD post-cardiac surgery. Findings can be used in the screening process of families at potential risk of increased stress and poor illness adaptation and in the design of interventions to target parental mental health in this vulnerable patient population.


Assuntos
Qualidade de Vida , Temperamento , Humanos , Lactente , Estudos Transversais , Pais/psicologia
3.
J Pediatr Nurs ; 69: 93-100, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36696826

RESUMO

PURPOSE: To explore the relationships between growth trajectory, parenting stress and parent post-traumatic stress (PTS), in infants with congenital heart disease, and the moderating role of parents' dyadic adjustment on those associations. DESIGN AND METHODS: A secondary analysis of data from the REACH Telehalth home monitoring multi-site randomized clinical trial. Parents completed the Parenting Stress Index (PSI), Post-traumatic diagnostic scale, and the Dyadic Adjustment Scale. Multivariate logistic regression models were used to examine the associations of interest. RESULTS: During 4-month follow-up after hospital discharge, parents of infants with 'Never recovered' and 'Partially recovered' growth trajectories had 2-5 times higher odds of experiencing higher stress on the Parent Domain (OR = 4.8, CI = 1.3-18.0; OR = 2.5, CI = 1.0-5.9, respectively) than those with stably grown infants. Parents of "Never recovered" infants had 4 times higher odds of PTS symptoms (OR = 3.9; CI = 1.6-9.9). Parental dyadic adjustment moderated the relationships. Parents of 'Partially recovered' infants and having low dyadic adjustment had 3-5 times higher odds of high stress on all PSI domains, while parents with high dyadic adjustment did not have increased stress due to poor infant growth. Parents of "Never recovered" infants had four times higher odds of PTS symptom, even with high dyadic adjustment. CONCLUSIONS: Infant growth trajectory over the first four months is associated with parenting stress and PTS. Quality of partner relationship moderates some of these associations. PRACTICE IMPLICATIONS: Infant growth should serve as a screening aid for identifying parents at psychological risk. Interventions targeting the quality of partner relationship may support parental coping and mitigate stress. CLINICAL TRIAL REGISTRATION: NCT01941667.


Assuntos
Cardiopatias Congênitas , Pais , Lactente , Humanos , Pais/psicologia , Estresse Psicológico/psicologia , Poder Familiar/psicologia , Adaptação Psicológica
4.
Cardiol Young ; 32(3): 383-389, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34082842

RESUMO

OBJECTIVES: Parents of infants with CHDs experience increased parenting stress compared to the general population, potentially interfering with parenting practices and bear adverse family outcomes. The changes in stress over the critical period of infancy have yet to be studied. The current study aimed to compare parenting stress changes over time between parents of infants with CHDs and parents of healthy infants during the first year of infants' life. METHODS: Data from a larger prospective cohort study were longitudinally analysed using mixed-effects multivariable regression modelling. Sample included mothers of 129 infants with complex cardiac defects and healthy infants, recruited from the cardiac ICU of a large cardiac centre and outpatient paediatric practices in Northeastern America. Outcome was measured over four visits via the Parenting Stress Index Long Form. RESULTS: Stress in the cardiac group has significantly decreased over time on the Parent Domain (p = 0.025), and stress in the healthy group has significantly increased over time on the Child Domain (p = 0.033). Parenting stress trajectories demonstrated significant differences between groups on the Parent Domain (p = 0.026) and on the Total Stress (p = 0.039) subscales. CONCLUSIONS: Parenting stress in the paediatric cardiac population changes over time and differs from stress experienced by parents of healthy infants. Findings highlight stressful periods that may be potentially risky for parents of infants with CHDs and introduce additional illness-related and psychosocial/familial aspects to the parenting stress concept.


Assuntos
Poder Familiar , Estresse Psicológico , Criança , Feminino , Humanos , Lactente , Relações Pais-Filho , Pais , Estudos Prospectivos
5.
J Pediatr Nurs ; 62: 17-22, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34839196

RESUMO

PURPOSE: To identify predictors of post-traumatic stress symptomology among parents of infants with complex congenital heart defects at hospital discharge and after 4 months. DESIGN & METHODS: A secondary analysis utilizing data from a larger RCT performed in three pediatric cardiac centers in North America. Analysis included 158 parent-infant dyads. Generalized Linear Modeling was used to identify predictors of parental post-traumatic symptomology at hospital discharge, and after 4 months. Considered predictors included demographics/SES, illness, and psychosocial parameters. RESULTS: At discharge, parenting stress, education, and infant's medication number were linked to post-traumatic stress symptomology severity; Parenting stress, education, insurance type, and medications number predicted number of symptoms; Tube-assisted feeding predicted PTSD. At 4 months, parenting stress, ethnicity, and number of ED visits predicted PTSS severity; Parenting stress, ethnicity, and cardiologist visits predicted number of symptoms; Parenting stress, single ventricle physiology, and number of children predicted PTSD. CONCLUSIONS & PRACTICAL IMPLICATIONS: Parental psychosocial factors, additionally to illness and sociodemographic indicators, can potentially risk parents to experience PTSS/PTSD. Nursing and other healthcare professionals can participate in early screening of such factors to determine familial risk. TRIAL REGISTRATION: NCT01941667.


Assuntos
Cardiopatias Congênitas , Transtornos de Estresse Pós-Traumáticos , Criança , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/cirurgia , Humanos , Lactente , Poder Familiar , Pais , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/epidemiologia
6.
J Pediatr Nurs ; 66: 23-29, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35598589

RESUMO

PURPOSE: We aimed to describe the weight-for-age Z-score growth trajectory (WAZ-GT) of infants with complex congenital heart disease (cCHD) after neonatal cardiac surgery in the first 4 months of life and assess potential risk factors. METHODS: We utilized data from a previously reported trial of the REACH telehealth home monitoring (NCT01941667) program which evaluated 178 infants with cCHD from 2012 to 2017. Over the first 4 months of life, weekly infant weights were converted to WAZ. WAZ-GT classes were identified using latent class growth modeling. Multinomial logistic regression models were used to examine the associations between potential risk factors and WAZ-GT classes. RESULTS: Four distinct classes of WAZ-GT were identified: maintaining WAZ > 0, 14%; stable around WAZ = 0, 35%; partially recovered, 28%; never recovered, 23%. Compared with reference group "stable around WAZ=0," we identified clinical and sociodemographic determinants of class membership for the three remaining groups. "Maintaining WAZ > 0" had greater odds of having biventricular physiology, borderline appetite, and a parent with at least a college education. "Partially recovered" had greater odds of hospital length of stay>14 days and being a single child in the household. "Never recovered" had greater odds hospital length of stay >14 and > 30 days, tube feeding at discharge, and low appetite. CONCLUSIONS: This study described distinct classes of WAZ-GT for infants with cCHD early in infancy and identified associated determinants. PRACTICE IMPLICATIONS: Findings from this study can be used in the identification of infants at risk of poor WAZ-GT and in the design of interventions to target growth in this vulnerable patient population.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Cardiopatias Congênitas , Criança , Nutrição Enteral , Humanos , Lactente , Recém-Nascido
7.
J Pediatr ; 238: 241-248, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34216630

RESUMO

OBJECTIVE: To examine the associations between post-traumatic stress of parents of infants with complex congenital heart defects and their healthcare use for their infants during the early months of life. STUDY DESIGN: The current study is a secondary data analysis from a randomized controlled trial in which 216 parent-infant dyads were recruited from 3 cardiac intensive care units of large pediatric centers in Northeastern America. The current sample included 153 dyads with post-traumatic stress data at hospital discharge and at 4-months' follow-up. Poisson regressions were used to estimate the effect of post-traumatic stress change scores on number of emergency department (ED) visits, unscheduled cardiologist visits, and unscheduled pediatrician visits outcomes. RESULTS: Infants whose parents gained post-traumatic stress disorder over the study period were at increased risk for ED visits and unscheduled cardiologist visits. Increased symptom severity predicted more unscheduled cardiologist visits and more unscheduled pediatrician visits. Increased symptom clusters (avoidance, arousal, re-experiencing) predicted more ED visits, more unscheduled cardiologist visits, and more unscheduled pediatrician visits. CONCLUSIONS: Parents of infants with cardiac conditions may experience post-traumatic stress following cardiac surgery, which can be linked to greater healthcare use. Findings highlight the importance of screening and treating post-traumatic stress to preserve parental mental health and prevent adverse outcomes.


Assuntos
Cardiopatias Congênitas/cirurgia , Pais/psicologia , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Adulto , Criança , Feminino , Cardiopatias Congênitas/psicologia , Humanos , Masculino , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Autorrelato , Índice de Gravidade de Doença , Transtornos de Estresse Pós-Traumáticos/psicologia
8.
J Pediatr Nurs ; 51: 1-7, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31812926

RESUMO

PURPOSE: Developmental delays are among the major morbidities of children with complex congenital heart disease. Parents of infants with complex congenital heart disease experience increased parenting stress levels, which can interfere with parenting processes during infancy. The current study examined associations between infant development and parenting stress in infants with complex congenital heart disease at six and twelve months of age. DESIGN AND METHODS: A secondary analysis of data examined cross-sectional associations between infant's mental and psychomotor development and parenting stress, using general linear regression modeling (N = 75). Data were obtained from a larger prospective cohort study. RESULTS: Mental development was negatively associated with the Parent Domain at six months, and with the Parent Domain and Total Stress at twelve months. Psychomotor development was not significantly associated with parenting stress at six and twelve months. CONCLUSIONS: Parenting stress in parents of infant with complex congenital heart disease may be among the factors shaping the parent-child relationship during the first year of life, which plays an important role in infant development. A potential bidirectional relationship between parenting stress and infant development may fit a transactional model representing the phenomena. PRACTICE IMPLICATIONS: Family interventions aiming to reshape illness perceptions may promote parental adaptive coping and productive parenting practices in populations at risk.


Assuntos
Desenvolvimento Infantil , Cardiopatias Congênitas/psicologia , Relações Pais-Filho , Poder Familiar , Estresse Psicológico/complicações , Adaptação Psicológica , Estudos Transversais , Feminino , Humanos , Lactente , Masculino , Pais , Estudos Prospectivos , Inquéritos e Questionários
9.
J Pediatr Nurs ; 37: 117-126, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28807423

RESUMO

BACKGROUND: Mothers of infants with complex congenital heart disease are exposed to increased stress which has been associated with numerous adverse health outcomes. The coping mechanisms these mothers use critically effect the familial illness adaptation and most likely infant outcomes. Currently no data-based strategies have been developed for mothers to facilitate their coping, and proactively promote their adaptation in the critical care settings. A potential strategy is mindfulness which is currently used in other clinical settings with stress-reduction effects. PURPOSE: (1) To investigate coping mechanisms of mothers whose infant with complex CHD is admitted in the CICU, and (2) to explore the acceptability and feasibility of mindfulness as a potential stress-reduction intervention for these mothers. DESIGN AND METHODS: A descriptive qualitative study obtained perspectives from 14 mothers during three focus groups. A qualitative conventional content analysis was performed using ATLAS.ti. RESULTS: In congruence with the Stress and Coping framework, themes identified mostly emotion-regulatory coping mechanisms including both active and passive strategies such as positive thinking, denial, distraction, relying on support systems, and focusing on baby. Mindfulness was an acceptable and feasible approach for most participants, however, practice unfamiliarity, time and space concerns, and personal preferences were identified as potential barriers for future dissemination. CONCLUSIONS: Mindfulness can potentially promote illness adaptation by utilization of active coping mechanisms. Early interventions can provide immediate, and potentially long-term stress relief. Intervention settings, format, and time-frame should be flexibly tailored to the trajectory of parental distress and familial adjustment.


Assuntos
Adaptação Psicológica , Cardiopatias Congênitas/diagnóstico , Atenção Plena/métodos , Mães/psicologia , Estresse Psicológico , Adulto , Cuidados Críticos/métodos , Feminino , Grupos Focais , Cardiopatias Congênitas/psicologia , Cardiopatias Congênitas/terapia , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Relações Mãe-Filho , Pesquisa Qualitativa
10.
J Pediatr ; 169: 154-9.e1, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26585995

RESUMO

OBJECTIVE: To assess the association between early anthropometric measurements, device-assisted feeding, and early neurodevelopment in infants with complex congenital heart diseases (CHDs). STUDY DESIGN: Bayley Scales of Infant Development II were used to assess cognitive and motor skills in 72 infants with CHD at 6 and 12 months of age. Linear regression models were used to assess the association between mode of feeding and anthropometric measurements with neurodevelopment at 6 and 12 months of age. RESULTS: Of the 72 infants enrolled in the study, 34 (47%) had single-ventricle physiology. The mean Mental Developmental Index (MDI) and Psychomotor Developmental Index (PDI) scores at 6 months of age were 92 ± 10 and 81 ± 14, respectively. At 12 months of age, the mean MDI and PDI scores were 94 ± 12 and 80 ± 16, respectively. Lower length-for-age z score (P < .01) and head circumference-for-age z score (P < .05) were independently associated with lower MDI at 6 months, and both increased hospital length of stay (P < .01) and lower length-for-age z score (P = .04) were associated independently with lower MDI at 12 months. Device-assisted feeding at 3 months (P = .04) and lower length-for-age z score (P < .05) were independently associated with lower PDI at 6 months. Both lower weight-for-age z score (P = .04) and lower length-for-age z score (P = .04) were associated independently with PDI at 12 months. CONCLUSION: Neonates with complex CHD who required device-assisted feeding and those with lower weight and length and head circumference z scores at 3 months were at risk for neurodevelopmental delay at 6 and 12 months of age.


Assuntos
Desenvolvimento Infantil , Métodos de Alimentação , Crescimento , Cardiopatias Congênitas/fisiopatologia , Métodos de Alimentação/instrumentação , Feminino , Cardiopatias Congênitas/complicações , Humanos , Lactente , Masculino , Transtornos do Neurodesenvolvimento/etiologia , Estudos Prospectivos
11.
J Fam Nurs ; 22(4): 460-492, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-27821622

RESUMO

Parenting stress increases in the presence of serious-acute or chronic pediatric health conditions, potentially triggering negative outcomes for families. Parenting stress reduction interventions have been widely disseminated. The current review describes the types, components, and outcomes of these interventions in diverse pediatric populations. A systematic literature search yielded 26 experimental and quasi-experimental studies describing such interventions. Quality assessment was conducted by two doctorally prepared nursing researchers using the Downs and Black's checklist for randomized and nonrandomized studies of health care interventions. Interventions were categorized as follows: interventions with supporting and cognitive components (n = 3), interventions with empowerment and skill development components (n = 18), interventions targeted to children's condition (n = 9), and interventions focusing on the parent-child relationship (n = 5). Most interventions reduced immediate parenting stress levels (n = 23), but failed to demonstrate long-term gains. Future family interventions should target long-term parenting stress, while focusing on specific family needs across pediatric conditions.


Assuntos
Saúde da Família , Poder Familiar , Ensaios Clínicos Controlados Aleatórios como Assunto , Estresse Psicológico , Criança , Doença Crônica , Humanos , Relações Pais-Filho
12.
J Adv Nurs ; 71(5): 1123-34, 2015 May.
Artigo em Inglês | MEDLINE | ID: mdl-25558788

RESUMO

AIMS: To understand the role of patients' attributions under the attribution theory framework (locus, controllability, stability) in nurses' performance of surface or deep acting, as they unfold in interactions with different patients. BACKGROUND: Regulation of emotions at work, or emotional labour, has been conceptualized in terms of two main strategies: surface acting and deep acting. Most prior research tested for between-subject variation in the search for the factors evoking these strategies in nurses, assuming them to be trait-like characteristics. Only scant research has examined how nurses modify their emotional labour strategies in different patient-nurse encounters. DESIGN: A nested cross-sectional design (patients within nurses). METHODS: Data were collected during 2011-2012 through validated questionnaires from the nursing staff (N = 41) of two paediatric hospital wards and their randomly selected patients (N = 239). Questionnaires were administered to nurses multiple times after encounters with different patients. Analyses were conducted using mixed effects models. RESULTS: In accordance with attribution theory, different combinations of locus, controllability and stability attributions were related to the choice of surface or deep acting. Nurses' perceptions of patients' controllability were associated positively with surface acting and negatively with deep acting. Interaction terms of stability and locus and of controllability and stability, were distinctively associated with deep and surface acting. CONCLUSIONS: Findings innovatively introduce the attribution process as an explanatory perspective to nurses' emotional labour and highlight its situational nature, providing a potential tool for emotional labour strategy prediction. Raising nurses' awareness of how they perceive patients may increase control of the strategies employed.


Assuntos
Modelos Psicológicos , Relações Enfermeiro-Paciente , Recursos Humanos de Enfermagem/psicologia , Pediatria , Estudos Transversais , Humanos
13.
Nurse Educ Today ; 127: 105844, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37230010

RESUMO

BACKGROUND: Nurse mentors face challenging circumstances because of their dual role as nurses and mentors. As nurses, they are expected to provide high-quality care for patients and as mentors, they are concomitantly engaged with developing the next generation of nurses. OBJECTIVES: To examine the relationship between job crafting strategies and missed nursing care among nurse mentors, in their roles as nurses and mentors. DESIGN: A cross-sectional design. SETTING: Various wards and hospitals during 2021. PARTICIPANTS: Eighty nurse mentors responsible for supervising nursing students. METHODS: Participants completed on-line survey, including the MISSCARE questionnaire, the Job Crafting Scale, and control variables. SPSS was used to conduct two multivariable linear regressions. RESULTS: As a nurse, higher enhancing structural job resources was significantly associated with lower missed nursing care, while higher enhancing social job resources was significantly associated with higher missed nursing care. As a mentor, higher enhancing structural job resources was significantly associated with lower missed care, while higher enhancing challenging job demands was significantly associated with higher missed care. CONCLUSION: The results indicate that not all job crafting strategies are effective in maintaining high-quality care among nurse mentors. In their dual role as nurses and mentors, nurse mentors often face a Catch-22 situation, namely, meeting expectations of both students and patients. Thus, they increase their job resources and challenging demands; however, not all strategies improve the quality of care. Nursing policymakers and managers should provide tailored interventions that enhance the structural job resources of nurse mentors and avoid the use of challenging job demands and social job resource strategies when mentoring nursing students.


Assuntos
Tutoria , Enfermeiras e Enfermeiros , Cuidados de Enfermagem , Recursos Humanos de Enfermagem Hospitalar , Humanos , Mentores , Estudos Transversais , Inquéritos e Questionários , Satisfação no Emprego
14.
Child Adolesc Psychiatry Ment Health ; 16(1): 72, 2022 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-36042476

RESUMO

BACKGROUND: It is well-established that child maltreatment practiced by parents is associated with adolescent aggression. Emerging evidence has suggested that higher levels of mindful parenting are associated with fewer negative parenting practices. However, the relationships among mindful parenting, child maltreatment, and adolescent aggression remain unclear. AIM: To examine the association between mindful parenting, child maltreatment, and adolescent aggressive behavior among Chinese parent-adolescent dyads. METHODS: Survey data from 554 Chinese parent-adolescent dyads were used for the analysis. Parents reported mindful parenting, and adolescents reported three forms of child maltreatment (i.e., physical abuse, psychological aggression, and neglect) by their parents and aggressive behavior. Path models were used to analyze whether higher levels of mindful parenting were associated with decreased likelihood of parent-to-adolescent maltreatment that were further related to lower levels of adolescent aggression. RESULTS: Mindful parenting and its two factors (i.e., interaction with full attention and compassion and acceptance) were associated with lower likelihood of physical abuse and psychological aggression, which were related to decreased levels of adolescent aggressive behavior. Stratified analyses by parent gender showed that the path from interaction with full attention to adolescent aggression through psychological aggression was also significant or marginally significant in both mother-adolescent and father-adolescent dyads. Stratified analyses by adolescent gender demonstrated that the paths from interaction with full attention to physical abuse and psychological aggression were significant, which were also significantly correlated with adolescent aggression among male adolescents, whereas the mindful parenting-child maltreatment-adolescent aggression paths were not significant among female adolescents. CONCLUSIONS: The findings contributed to the existing literature by assessing mindful parenting as a multifaceted construct and exploring the gender differences in the relationships. Gender-tailored interventions to improve mindful parenting, specifically focusing on the parents' ability of interacting with adolescents providing full attention, compassion, and acceptance may work towards preventing child maltreatment and promoting adolescent behavioral health.

15.
World J Pediatr Congenit Heart Surg ; 13(3): 324-331, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35446209

RESUMO

Background: The World Health Organization acknowledges quality of life (QOL) as subjectively perceived overall well-being by the individual and recognizes it as an essential construct for overall health and wellness. The purpose of this study was to examine the association of infant, environmental, and parental factors with the QOL of mothers of infants at four months post-hospital discharge from cardiac surgery. Methods: Secondary analysis of prospectively collected data from the REACH randomized clinical trial of telehealth home monitoring. The sample included mothers (n = 148) of infants with congenital heart disease who provided data at four months post-discharge. Ten imputations were generated using fully conditional specification methods to address missing data and were combined. All analyses were performed on the imputed data. Mothers' QOL was the main outcome of the analysis, as measured by the Ulm Quality of Life Inventory for Parents. Predictors on QOL were identified based on the World Health Organization QOL framework which recognizes the multidimensional domains influencing QOL that include personal factors, environmental factors, and physical factors related to disease and functioning. Results: The treatment and control groups did not differ on any study variable, thus data were collapsed and analyzed together. Final multivariable model found that the combination of dyadic adjustment, social support, parenting stress, and post-traumatic stress symptoms explained approximately three-quarters of the variance in QOL scores. Conclusions: QOL for mothers of infants with congenital heart disease is largely influenced by psychosocial factors. Future research targeted toward improving maternal QOL should include psychosocial interventions that address social networks and stress.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Cardiopatias Congênitas , Assistência ao Convalescente , Feminino , Cardiopatias Congênitas/cirurgia , Humanos , Lactente , Recém-Nascido , Mães/psicologia , Alta do Paciente , Qualidade de Vida/psicologia
16.
Pediatrics ; 146(3)2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32817266

RESUMO

OBJECTIVES: To test the effect of a 4-month telehealth home monitoring program (REACH), layered on usual care, on postdischarge outcomes in parents of infants recovering from cardiac surgery and their infants. METHODS: Randomized trial of infants discharged from the hospital after cardiac surgery for congenital heart disease. Consecutive infants with complex congenital heart disease undergoing cardiac surgery within 21 days of life were enrolled at 3 university-affiliated pediatric cardiac centers. RESULTS: From 2012 to 2016, 219 parent-infant dyads were enrolled; 109 were randomly assigned to the intervention group and 110 to the control group. At 4 months postdischarge, parenting stress was not significantly different between groups (total Parenting Stress Index in the intervention group was 220 and in the control group was 215; P = .61). The percentages of parents who met posttraumatic stress disorder (PTSD) criteria and parent quality of life inventory scores were also not significantly different between the 2 groups (PTSD in the intervention group was 18% and was 18% in the control group; P =.56; the mean Ulm Quality of Life Inventory for Parents in the intervention group was 71 andwas 70 in the control group; P = .88). Infant growth in both groups was suboptimal (the mean weight-for-age z scores were -1.1 in the intervention group and -1.2 in the control group; P = .56), and more infants in the intervention group were readmitted to the hospital (66% in the intervention group versus 57% in the control group; P < .001). CONCLUSIONS: When added to usual care, the REACH intervention was not associated with an improvement in parent or infant outcomes. Four months after neonatal heart surgery, ∼20% of parents demonstrate PTSD symptoms. Suboptimal infant growth and hospital readmissions were common.


Assuntos
Cardiopatias Congênitas/cirurgia , Pais/psicologia , Qualidade de Vida , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Estresse Psicológico/epidemiologia , Telemedicina , Adulto , Feminino , Transtornos do Crescimento/epidemiologia , Humanos , Lactente , Recém-Nascido , Masculino , Monitorização Ambulatorial/métodos , Readmissão do Paciente/estatística & dados numéricos , Avaliação de Programas e Projetos de Saúde , Fatores Socioeconômicos , Resultado do Tratamento
17.
Congenit Heart Dis ; 14(6): 1113-1122, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31657114

RESUMO

OBJECTIVE: Parents of infants with congenital heart disease (CHD) experience increased parenting stress levels, potentially interfering with parenting practices and bear adverse family outcomes. Condition severity has been linked to parenting stress. The current study aimed to explore parenting stress trajectories over infancy in parents of infants with complex CHD, and to compare them by post-operative cardiac physiology. DESIGN: Data from a larger prospective cohort study was analyzed using longitudinal mixed-effects regression modeling. SETTING: Cardiac intensive care unit and outpatient clinic of a 480-bed children's hospital in the American North-Atlantic region. PARTICIPANTS: Parents of infants with complex CHD (n = 90). MEASURES: Parenting stress was measured via the parenting stress index-long form over four time points during infancy. RESULTS: Parents of infants with a single-ventricle heart experienced a decrease in total stress over time. Parents of infants with a biventricular heart experienced a decrease in attachment-related stress, and an increase in stress related to infant temperament over time. Parenting stress trajectories over time significantly differed between groups on infant temperamental subscales. CONCLUSIONS: Findings highlight stressful and potentially risky periods for parents of infants with complex CHD, and introduce additional illness-related and psychosocial/familial aspects to the parenting stress concept. Early intervention may promote parental adaptive coping and productive parenting practices in this population.


Assuntos
Efeitos Psicossociais da Doença , Cardiopatias Congênitas/cirurgia , Ventrículos do Coração/anormalidades , Ventrículos do Coração/diagnóstico por imagem , Ventrículos do Coração/cirurgia , Poder Familiar/psicologia , Pais/psicologia , Estresse Psicológico/etiologia , Adaptação Psicológica , Fatores Etários , Desenvolvimento Infantil , Feminino , Cardiopatias Congênitas/diagnóstico por imagem , Cardiopatias Congênitas/fisiopatologia , Cardiopatias Congênitas/psicologia , Ventrículos do Coração/fisiopatologia , Humanos , Lactente , Comportamento do Lactente , Recém-Nascido , Estudos Longitudinais , Masculino , Apego ao Objeto , Relações Pais-Filho , Fatores de Risco , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologia , Temperamento , Fatores de Tempo
19.
ANS Adv Nurs Sci ; 40(4): 319-336, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28990967

RESUMO

This descriptive, qualitative study used directed content analysis to explore and clarify specific foci of parental stress for mothers of infants with complex congenital heart disease in the pediatric cardiac intensive care unit (PCICU). The PCICU Parental Stress Model was used as the guiding theoretical framework. Three focus groups were conducted with 14 mothers of infants who were being cared for in a PCICU at a large mid-Atlantic children's hospital. Data provided themes to support and refine the PCICU Parental Stress Model that can be used to guide practice, education, and future research in this unique population and setting.


Assuntos
Cuidados Críticos/psicologia , Mães/psicologia , Estresse Psicológico , Adulto , Enfermagem Cardiovascular , Feminino , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Pediátrica , Masculino , Adulto Jovem
20.
Compr Child Adolesc Nurs ; 40(4): 294-314, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-29039684

RESUMO

While we know that the parents of infants with congenital heart disease (CHD), the most prevalent group of congenital anomalies, experience increased parenting stress, the stress levels throughout infancy have yet to be studied. Stress experienced by parents beyond the normative stress of parenting can interfere with parenting processes, and bear adverse family outcomes. This prospective cohort study was conducted to describe and compare parenting stress levels during infancy between parents of infants with complex CHD and parents of healthy infants. The Parenting Stress Index-Long Form was distributed to parents of infants with complex CHD and parents of healthy infants (N = 129). T-tests were used to compare stress between groups at 3, 6, 9, and 12 months of age. Parents of infants with complex CHD had higher parenting stress than parents of healthy infants on multiple subscales on the Child and Parent Domains, at 3 months of age. The stress remained higher on the demandingness subscale throughout infancy. Parents of CHD infants also demonstrated significantly higher stress scores on the life stress subscale at 12 months of age. Findings highlight stressful periods related to parenting infants with CHD, which may increase existing psycho-social risk for parents of infants with CHD. Early family intervention may promote parental adaptation to the illness, and help establishing healthy parenting practices.


Assuntos
Cardiopatias Congênitas/psicologia , Relações Pais-Filho , Poder Familiar/psicologia , Estresse Psicológico/etiologia , Estudos de Coortes , Feminino , Cardiopatias Congênitas/complicações , Humanos , Lactente , Saúde do Lactente , Masculino , Estudos Prospectivos , Psicometria/instrumentação , Psicometria/métodos , Grupos Raciais/estatística & dados numéricos , Estresse Psicológico/complicações , Inquéritos e Questionários
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