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1.
2.

Introduction

The purpose of this study was to explore the communication behaviors demonstrated by parents of children with chronic conditions and provider team members when communicating about the child's care in outpatient clinics using concepts from the Theory of Shared Communication (TSC).

Methods

This was a secondary data analysis of 30 previously recorded pediatric clinic visits. Communication among parents and provider team members was analyzed using a researcher-developed coding scheme based on the TSC.

Results

Provider team members dominated communication during clinic visits, showing more frequent use of asking, explaining, advocating, and negotiating behaviors than parents. Parents were engaged in communication with frequent asking, explaining, and advocating behaviors.

Discussion

Parents of children with chronic conditions and multidisciplinary providers demonstrated the communication behaviors of the TSC in an outpatient clinic setting. Provider dominance of communication in the clinic setting may disempower parents and impair relationships.  相似文献   

3.

Background

The quality of general movements (GMs) has proven to have predictive value for the developmental outcome, but this has not yet been studied in twins.

Aims

Our aim was to analyse the quality of GMs and neurological and developmental outcome in relation to the gestational age (GA), mode of conception and other perinatal risk factors in a group of twins.

Study design

The documentation of twins referred for follow-up in the period from 1998 to 2016 was studied retrospectively. Data concerning the quality of GMs, perinatal risk factors and developmental outcome were analysed.

Subjects

Eighty-nine twin pairs, GA from 24 to 38 weeks (median 35.0; IQR 3), birth weight 670 g–3820 g (median 2323; IQR 645) were included.

Outcome measures

Results of neurological, psychological and speech/language development and school outcome were analysed.

Results

GMs at term age and at three to four months postterm age did not differ with regard to the mode of conception. Preterm birth was significantly related to GMs at three to four months postterm age. At term age, GMs were significantly related to neurological outcome, while at three to four months postterm age, GMs were related to both the neurological and psychological outcome. Difficulties in speech/language development were diagnosed in almost half of the children, more frequently in boys and children with lower Apgar scores.

Conclusion

The study highlights the value of GMs for predicting the developmental outcome in twins and indicates the importance of developmental, especially speech/language, follow-up in twins.  相似文献   

4.

Objective

To explore the decision to seek care and decision-making regarding location of care among parents with low and adequate health literacy.

Methods

Parents of children 8 years old or younger who presented for ‘sick child’ visits at a clinic or a nonurgent emergency department (ED) visit (triage level 5) were interviewed. The Newest Vital Sign was used to categorize parental health literacy. Interviewers followed a semistructured interview guide to understand: 1) care-seeking for current illness, and 2) choice of clinic or ED. Themes emerged using a grounded theory process, facilitated by NVivo version 10.0 software (QSR International, Melbourne, Australia). Themes included the experiences of low and adequate health literacy in the clinic as well as in the ED.

Results

Fifty semistructured interviews were completed with parents who brought their child to the ED for a nonurgent visit (n = 30) and clinic parents (n = 20) with 56% possessing low health literacy. Parents with low health literacy were more inclined to overestimate severity of illness and seek care sooner to gain answers about the illness and treatment options, and visit the clinic only when an appointment was available within hours. Parents with adequate health literacy sought reassurance for their ongoing illness management and valued close relationships with their physician, and were willing to wait longer for an appointment. Fever, vomiting, and young child age prompted some parents to seek expedient care regardless of health literacy.

Conclusions

Caregiving skills (eg, assessing and treating illness, understanding illness severity, and navigating the health care system) in addition to physician-parent relationships and perception of care seem to influence the behavior of parents managing their child's mild acute illness. These factors might be amenable to a future health literacy intervention.  相似文献   

5.

Objective

Outdoor free play is important for preschoolers' physical activity, health, and development. Certain temperamental characteristics are associated with obesity, nutrition, and sedentary behaviors in preschoolers, but the relationship between temperament and outdoor play has not been examined. This study examined whether there is an association between temperament and outdoor play in young children.

Methods

Healthy children aged 1 to 5 years recruited to The Applied Research Group for Kids (TARGet Kids!), a community-based primary care research network, from July 2008 to September 2013 were included. Parent-reported child temperament was assessed using the Childhood Behavior Questionnaire. Outdoor free play and other potential confounding variables were assessed through validated questionnaires. Multivariable linear regression was used to determine the association between temperament and outdoor play, adjusted for potential confounders.

Results

There were 3393 children with data on outdoor play. The association between negative affectivity and outdoor play was moderated by sex; in boys, for every 1-point increase in negative affectivity score, mean outdoor play decreased by 4.7 minutes per day. There was no significant association in girls. Surgency was associated with outdoor play; for every 1-point increase in surgency/extraversion, outdoor play increased by 4.6 minutes per day.

Conclusions

Young children's temperamental characteristics were associated with their participation in outdoor free play. Consideration of temperament could enhance interventions and strategies to increase outdoor play in young children. Longitudinal studies are needed to elucidate the relationship between children's early temperament and physical activity.  相似文献   

6.

Introduction

The purposes of this project were (a) to examine criteria derived from evidence-based pediatric acute asthma exacerbation assessment tools, asthma scores, and the acute asthma prediction rule validated and used in the emergency department and (b) to adapt these criteria for pediatric primary care.

Method

The three stages of the project included (a) identification of criteria in a literature review, (b) validation of the criteria by an expert panel, and (c) adaptation of the criteria in the design of an assessment tool.

Results

The criteria were validated and adapted in the design of The Pediatric Acute Asthma Exacerbation Severity Assessment and Disposition Decision-Making Tool for Pediatric Primary Care.

Discussion

The adaptation of criteria derived from the evidence and validated by an expert panel will inform and guide clinicians in assessing severity and support decision making in determining disposition of pediatric patients presenting with an acute asthma exacerbation in primary care.  相似文献   

7.

Introduction

Surgery in children can be difficult for patients and parents. We aimed to summarize pediatric patients' and parents' psychosocial experiences and needs in surgery.

Method

We used the Ovid search engine and screened 877 abstracts across three databases to extract data on pediatric patients' and parents' surgical experiences.

Results

Our search yielded 11 eligible studies representing 1,307 children undergoing surgery and their parents. Children's adverse experiences included psychological and behavioral changes before, during, and after surgery (e.g., anxiety, eating disturbances). Parents commonly experienced psychological distress. Children's needs related to medical and health care services, whereas parents had high information needs.

Discussion

Children's adverse experiences can negatively affect medical outcomes. Children's experiences are inextricably linked to their parents' and can become negatively affected by their parents' adverse experiences. Patients and parents with previous hospitalizations and surgeries had worse surgical experiences, highlighting further research in the context of chronic illness.  相似文献   

8.

Introduction

Mild traumatic brain injury is a common condition in childhood. Although classified as mild, post-concussive symptoms may persist and interfere with daily activities. Because no established guidelines exist with respect to follow-up medical care for these children, there may be a delay in receiving appropriate care. We developed a follow up program to screen for persistent symptoms and if necessary, refer patients for further medical assistance.

Methods

From July 2010 until December 2013, eligible children aged 4–18 years who presented after sustaining a mild traumatic brain injury were included. All patients received a phone call after 6 weeks. After a period of 3 months, both their schoolteacher and parents were asked to complete in a questionnaire. The results were discussed monthly by a multidisciplinary team.

Results

A total of 305 children were enrolled in our follow-up program. Headache was the most common acute symptom upon presentation (63%). Overall, 19% of all patients had problems, either at 6 weeks or 3 months. 14% of these patients were referred for special care. Most common persistent post-concussive symptoms were headache (32%), cognitive problems (23%) and behavioural problems (16%). After a period of two years, a review of patient charts revealed that all of the problems were resolved.

Conclusion

One fifth of the children exhibit post-concussive symptoms after mild traumatic brain injury. Education of patients and caregivers and a follow up visit if needed applied appropriate care at an early stage to minimise physical and mental problems.  相似文献   

9.

Background

Shared decision-making (SDM) has mostly been used with adults and parents in the primary care setting, and there is limited knowledge on the use of SDM with parents of acutely ill children. The objective of this study was to review the literature on SDM with parents in the management of acutely ill children.

Methods

We searched MEDLINE, SCOPUS, PsycINFO, the Cochrane Library, and ClinicalTrials.gov for English language studies published from the time of database inception to February, 2017. Study eligibility criterion was use of SDM with parents for children aged 18 years or younger with an acute medical problem.

Results

We identified 2 ongoing clinical trials and 10 published studies that met inclusion criteria: 2 using hypothetical SDM scenarios, 1 mixed methods study, and 7 intervention studies. Only 1 study compared an SDM intervention with usual care in a randomized controlled trial. The limited literature shows that parents of acutely ill children have differing preferences for testing and/or treatment, and that they generally want the opportunity to express those preferences through an SDM process. Use of SDM often results in acutely ill children undergoing fewer and/or less intensive testing or treatment, although the effect on outcomes is unclear.

Conclusions

Parents welcome participation in SDM for management decisions with their acutely ill child. Further investigation is needed to determine how best to implement SDM with parents of acutely ill children and to assess the effect of SDM on outcomes.  相似文献   

10.

Background

Dystonia is characterised by involuntary movements and postures. Deep Brain Stimulation (DBS) is effective in reducing dystonic symptoms in primary dystonia in childhood and to lesser extent in secondary dystonia. How families and children decide to choose DBS surgery has never been explored.

Aims

To explore parental decision-making for DBS in paediatric secondary dystonia.

Methods

Data was gathered using semi-structured interviews with eight parents of children with secondary dystonia who had undergone DBS. Interviews were analysed using Interpretative Phenomenological Analysis.

Results

For all parents the decision was viewed as significant, with life altering consequences for the child. These results suggested that parents were motivated by a hope for a better life and parental duty. This was weighed against consideration of risks, what the child had to lose, and uncertainty of DBS outcome. Decisions were also influenced by the perspectives of their child and professionals.

Conclusions

The decision to undergo DBS was an ongoing process for parents, who ultimately were struggling in the face of uncertainty whilst trying to do their best as parents for their children. These findings have important clinical implications given the growing referrals for consideration of DBS childhood dystonia, and highlights the importance of further quantitative research to fully establish the efficacy of DBS in secondary dystonia to enhance informed decision-making.  相似文献   

11.

Objective

To assess differences in health care access, utilization, and experiences among Latino children in California according to parental citizenship status and language use.

Methods

Data are from the 2011 and 2012 California Health Interview Survey public use child files. A total of 2841 interviews of parents of Latino children younger than the age of 12 years were conducted. Analyses were conducted to determine the associations between access (usual of source of care, delay in receiving needed care, health insurance), utilization (physician visits in past year, emergency department visits), and experiences (doctor listens, doctor explains instructions clearly, communication via telephone or e-mail) according to parental citizenship status and household language use after adjusting for confounders.

Results

In multivariate analyses, there were no significant differences in access to care according to parental citizenship status. Children with 2 noncitizen parents had fewer doctor visits and were less likely to go to the emergency department in the past year than those with 2 citizen parents. Among children with 1 or 2 noncitizen parents, their parents reported worse experiences in care than those with 2 citizen parents. Similar results were observed for language use. Parents of children in bilingual and Spanish-only households were less likely to report that their children's doctors explained things clearly, and parents in Spanish-only households were less likely to communicate via telephone or e-mail than those in English-only households.

Conclusions

Health policy should focus on provider-parent communication to ensure health care equity for Latino children whose parents are not citizens or do not speak English.  相似文献   

12.

Objective

We investigated which adolescent health risk behaviors are of concern to parents generally, according to adolescent age, gender, and in the context of perceived risk. We compared adolescent and parent reports of the presence of health-risk behaviors and factors predicting agreement.

Methods

Three hundred adolescents aged 13 to 18 years (mean, 14.5 years; 52% female) who presenting for well care completed an electronic screening tool used to assess health-risk behaviors. Parents completed parallel measures of their child's behavior and parental concern. Adolescent and parent reports were compared using McNemar test. Hierarchical linear regression was used to examine predictors of agreement.

Results

High parental concern was most commonly reported for screen time and diet. When parents identified their adolescent as at-risk, high parental concern was near universal for mental health but less commonly reported for substance use. There were no differences in parental concern according to adolescent gender. Parents of older adolescents expressed more concern regarding physical activity and alcohol. Compared with adolescents, parents were more likely to report risk regarding anxiety, fruit and vegetable consumption, and physical activity, and less likely to report risk regarding screen time, sleep, and marijuana use. Younger adolescent age and higher family relationship quality were predictive of stronger parent-adolescent agreement.

Conclusions

Parents in well-care visits commonly have concerns about adolescent lifestyle behaviors. Although parents are more likely to report concern when they know about a behavior, parental concern is not always aligned with parental awareness of risk, particularly for substance use. Parent report of higher prevalence of some risk behaviors suggests their input might assist in risk identification.  相似文献   

13.

Background

The ALDH7A1 gene is known to be responsible for autosomal recessive pyridoxine-dependent epilepsy (OMIM 266100). The phenotypic spectrum of ALDH7A1 mutations is very heterogeneous ranging from refractory epilepsy and neurodevelopmental delay, to multisystem neonatal disorder.

Aim

The present study aims at describing the phenotype associated with a novel homozygous ALDH7A1 mutation and the spectrum of brain malformations associated with pyridoxine-dependent epilepsy.

Methods

We conducted a literature review on the Internet database Pubmed (up to November 2017) searching for ALDH7A1 mutations associated with brain malformations and brain MRI findings.

Results

We present the case of two siblings, children of related parents. The proband presented neonatal focal seizures not responding to conventional antiepileptic drugs. Electroencephalography showed a suppression burst pattern and several multifocal ictal patterns, responsive to pyridoxine. Brain MRI was normal. Molecular analysis by targeted next-generation sequencing panel for epileptic encephalopathy disclosed a homozygous missense mutation of ALDH7A1. The same mutation was then found in a stored sample of DNA from peripheral blood of an older sister dead 3 years earlier. This girl presented a complex brain malformation diagnosed with a foetal MRI and had neonatal refractory seizures with suppression burst pattern. She died at 6 months of age.

Literature review

The brain abnormalities most frequently reported in pyridoxine-dependent epilepsy include: agenesia/hypoplasia of the corpus callosum, not specific white matter abnormalities, large cisterna magna, ventriculomegaly, haemorrhages, cerebellum hypoplasia/dysplasia, and, more rarely, dysplasia of the brainstem and hydrocephalus.

Discussion and conclusions

ALDH7A1 mutations have been associated to different brain abnormalities, documented by MRI only in few cases. The study cases expand the clinical spectrum of ALDH7A1 associated conditions, suggesting to look for ALDH7A1 mutations not only in classical phenotypes but also in patients with brain malformations, mainly if there is a response to a pyridoxine trial.  相似文献   

14.

Background

Children with medical complexity (CMC) account for disproportionate hospital utilization and adverse outcomes after discharge, and several gaps exist regarding the quality of hospital to home transitional care for this population. We conducted an expert elicitation process to identify important and feasible hospital to home transitional care interventions for CMC from the perspectives of parents and health care professionals.

Methods

We conducted a 2-round electronic Delphi process to identify important and feasible transitional care interventions. Panelists included parents of CMC and multidisciplinary health care professionals. In the first round, panelists rated the importance and feasibility of 39 transitional care interventions on a 9-point Likert scale; agreement between panelists was defined according to RAND/UCLA Appropriateness Methods. The second round of data collection evaluated 16 interventions that panelists did not agree on in the first round and 8 new or revised interventions, accompanied by quantitative and qualitative data summaries.

Results

A total of 29 parents of CMC and 37 health care professionals participated in the Delphi process (response rate 75%). Both stakeholder panels endorsed most interventions as important; health care professionals were less likely to rate several interventions as feasible compared with the parent panel. Over 2 rounds of data collection, the 2 stakeholder panels endorsed 25 interventions as important as well as feasible. These interventions related to family engagement during the hospitalization, care coordination and social support assessment, predischarge education, and written materials.

Conclusions

Parents and health care professionals considered several transitional care interventions important as well as feasible. This research might inform hospitals' transitional care programs and policies.  相似文献   

15.

Aim

We aimed to identify early predictors of intractable epilepsy, intellectual disability (ID) and autism spectrum disorders (ASD) in the cohort of TSC patients initially diagnosed with cardiac rhabdomyomas (CR).

Method

Over the period of twelve years we prospectively obtained clinical, neuropsychological, electrophysiological and neuroimaging data in a group of 22 TSC patients (9 females, 13 males) with the pre/perinatal diagnosis of CR, included to the study at the time of diagnosis. Afterwards, we statistically determined variables associated with ID, ASD and intractable epilepsy.

Results

Development of ID was predicted by severe epilepsy (a higher number of anti-epileptic drugs used), a higher number of dysplastic lesions on MRI, and abnormal background activity on EEG (p < 0.05). Predictors of ASD included early developmental delay, abnormal background activity on EEG at the end of follow-up and a higher number of areas with dysplastic features on MRI (p < 0.05). Intractable epilepsy was associated with a higher number of areas with dysplastic features on MRI, ID and with TSC2 genotype.

Conclusion

Adverse mental and clinical outcome was associated with intractable epilepsy and the severe anatomical brain involvement; therefore, our centre developed a tailored protocol for early identification of TSC patients at a higher risk of developing intractable epilepsy with its deleterious effect on cognitive outcome.  相似文献   

16.

Background

Maternal trauma complicates pregnancy in approximately 7%. Long-term development of children exposed to maternal trauma is unknown.

Aim

To determine neurobehavioural outcome of children (6–18 years) born after maternal trauma in pregnancy compared to a matched control group.

Study design

Case-control study performed at a tertiary medical centre.

Subjects

All consecutive children born after maternal hospitalization for trauma during pregnancy between 1995 and 2005. Controls were children born at the same hospital and period after an uneventful pregnancy.

Outcome measures

Trauma type and severity (Injury Severity Score, ≥9: severe); information from medical files at admission (cases). All mothers filled out two questionnaires about the infant; 1. concerning health, motor development and educational level, 2. concerning behavioural development through the validated Dutch version of the Child Behavior Checklist (CBCL).

Results

Questionnaires were returned by 34 cases and 28 controls. The traumas concerned mainly motor vehicle accidents and falls, and 3/34 had severe injuries. No differences in health, motor development, educational level and CBCL was found between the cases and controls, except for more hospitalization in the cases (p = 0.009).

Conclusion

Long-term follow-up of a limited population of children 6–18 years after exposure of mainly non-severe trauma before birth is similar to a control population except for unexplained more hospitalization in the cases.  相似文献   

17.

Objective

This study reports the feasibility and acceptability of a healthy eating and physical-activity-focused behavioral intervention for parents of young children with type 1 diabetes (T1D).

Methods

Ten parents of young children (age 2-5 years) with T1D enrolled. The intervention included six behavioral sessions (five by telephone), diabetes nursing consultation, parent coach contact, text messages, and a study website. Analyses explored feasibility, acceptability, and preliminary findings.

Results

There was evidence of high acceptability (mean parent satisfaction = 1.11, very satisfied). Although most participants completed all of the assessments, there were some barriers to data collection devices. The number of participants within the American Diabetes Association recommended glycemic range doubled; there was no significant change in hemoglobin A1c, diet, or physical activity.

Conclusion

There was evidence of feasibility and acceptability and initial evidence of change in hypothesized directions. Minor changes were made for the larger randomized controlled trial.  相似文献   

18.

Background

Ataxia telangiectasia (AT) is a neurodegenerative cerebellar disorder, caused by mutations in the ATM gene, involved in DNA repair. Radiosensitivity, progressive ataxia, immune deficiency and malignancies, are well known symptoms, but urological manifestations are scarcely described.

Objective

To characterize urologic manifestations in a large cohort of AT patients.

Methods

Retrospective cross-sectional chart study comprising 52 AT patients followed at a National AT Center.

Results

25% of the cohort (13 patients/8 males) had urologic symptoms, which presented at 11 ± 4.3 years. The most common symptom was secondary enuresis affecting 15% of the patients (8 children/4 males). Incontinence appeared at 8 ± 6.2 years of age, and resolved spontaneously within 15 ± 8.3 months in 6 patients. It preceded loss of ambulatory capacity by 1–2 years in 7 patients. Lumbosacral MRI were normal (4 children) and urine cultures (all) were negative. Urodynamic evaluation that was performed in only one patient revealed overactive bladder. Additional manifestations were macroscopic hematuria due to bladder telangiectasia in a 12-year-old, and renal cell carcinoma in a 22-year-old. Other manifestations unrelated to AT were neprolithiasis, vesico-ureteral reflux and scrotal pain, each in 1 patient.

Discussion

Transient secondary enuresis is a frequent finding in AT patients, heralding loss of ambulatory capacity, tough it's pathophysiological mechanism is largely no understood.  相似文献   

19.

Objective

The objective of our study was to evaluate the knowledge about fetal alcohol spectrum disorders (FASD) and the implementation of the German guideline for FASD among different professionals in the health and social system and among parents with children with FASD.

Methods

A questionnaire about FASD, containing 20 items, was sent by post to all children's hospitals (n = 287), all hospitals for child and adolescent psychiatry (n = 173), all social paediatric centres (n = 162), all neuropaediatricians (n = 129) and all youth welfare offices (n = 672) in Germany. Furthermore a link to the questionnaire as online version was put in the member's newsletter by 14 relevant professional societies. Besides, the questionnaire was distributed personally to the attendees of the annual national FASD conference (n = 363).

Results

Altogether 428 persons took part in the survey. 273 participants were professionals and 155 parents of children with FASD. More than 95% of the professionals and parents knew that alcohol consumption during pregnancy constitutes a risk for the child. The prevalence of maternal alcohol consumption and of FASD was underestimated. Although approx. 70% of the professionals knew which disorders belong to FASD just a few could tell their specific deficits. Questions regarding effective intervention for children with FASD and the long-term outcome were only partially answered correctly.

Discussion

Professionals in the German health and social system are aware of FASD but underestimate the level of damage and the impact on every day functioning of the affected people.  相似文献   

20.

Background

Headache on wakening (HoW) or sleep interruption secondary to headache (SIH) has been commonly regarded as a potential sign of raised intracranial pressure and therefore a sign of significant underlying pathology that necessitates further investigation. Current recommendations for neuroimaging in patients with HoW/SIH are neither consistent nor clear across headache guidelines published both nationally and internationally.

Aim

The main aim of this study was to ascertain the relevance of HoW and/or SIH as an indication for routine neuroimaging.

Methods

This study focused on clinically well patients with normal neurological examinations who had experienced HoW or SIH. Demographic and neuroradiological data were collected prospectively and the headache diagnosis was based on the International Classification of Headache Disorders.

Results

102/1065 patients reported either HoW and/or SIH. There were 57/102 (56%) females, 45/102 males (44%), and 33/102 (32%) of ethnic minority. Their age ranged between 5 and 17 years. 79/102 (77%) patients with HoW, 19/102 (19%) with SIH and 4/102 (4%) with both HoW and SIH. Headache diagnosis included migraine (n = 67; 66%), tension type headaches (n = 16; 16%), medication overuse headaches (n = 11; 11%), and sinusitis (n = 1; 1%). Neuroimaging was performed in 101/102 patients; imaging was normal for 97 scanned patients, and showed non-significant abnormality in the remaining 4 patients.

Conclusion

HoW or SIH among clinically well and neurologically normal paediatric patients was most likely to be caused by primary headaches, particularly migraine or tension type headaches. This symptom alone among healthy and clinically well children is not an indication for routine neuroimaging and is unlikely to be caused by sinister aetiologies.  相似文献   

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