Chronically ill children and fragile families.
Ontology highlight
ABSTRACT:
SUBMITTER: Flegel K
PROVIDER: S-EPMC4216246 | biostudies-literature | 2014 Nov
REPOSITORIES: biostudies-literature
Publications
Chronically ill children and fragile families.
CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne 20141014 16
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Project description:Interventions: Group 1: The EC@T-project consists of three substudies: two qualitative and one quantitative study. In all three studies there will be two sample groups, providers and chronically ill patients (see fulfilling one of the diagnoses). First, within the qualitative study we will interview the attitudes of patients and providers and we are planning to generate items for the EC@T questionnaire. Then all participants will fill out the questionnaire.
Primary outcome of the project is to develop the EC@T questionnaire based on interview data and analysis of literature. aim: measurement of attitudes towards eCommunication of providers and chronically ill patients.
Study Design: Allocation: ; Masking: ; Control: ; Assignment: ; Study design purpose: other
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Project description:Nonadherence in children who use long-term medication is a serious problem and assessing adherence is an important step to provide solutions to this problem. Medication adherence can be measured by several methods, including (a) self-report questionnaires or structured interviews, (b) therapeutic drug monitoring (TDM), (c) electronic devices, and (d) pick-up/refill rates. The objective of this narrative review is to provide an overview of the literature about methods for the measurement of medication adherence in chronically ill children and adolescents. Therefore, we conducted a literature search by using multiple databases. Four methods of monitoring medication adherence are presented for the most described chronic diseases: asthma, HIV/AIDS, epilepsy, diabetes mellitus and ADHD. First, 10 commonly used self-report questionnaires and structured interviews are described, including the main characteristics, (dis)advantages and their validation studies. Second, the use of TDM in pediatric trials for medication adherence measurement is discussed. New sampling methods (e.g. dried blood spot) and sampling matrices (e.g. hair, saliva and urine) have shown their benefits for TDM in children. Third, electronic devices to measure medication adherence in children are presented, being developed for several drug administration routes. Fourth, the analyses, advantages and disadvantages of pharmacy data are discussed. The usage of this data requires specific calculations and interpretations to assess adherence. As presented in this review, every adherence method has specific (dis)advantages. When deciding which adherence method is applicable, validity and generalizability should be taken into account. Combining multiple methods seems to offer the best solution in the daily clinical practice.
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Project description:Objectiveto understand the experiences and coping strategies of children and adolescents with chronic illnesses during the COVID-19 pandemic.Methodsa descriptive study, with a qualitative approach, carried out with six children and adolescents at the reception of an outpatient clinic of a pediatric hospital in the state of Ceará. Data collection took place from April to September 2021, using story-drawing, analyzed in light of Coutinho's criteria.Resultstwo thematic categories emerged: Situations experienced by children and adolescents in times of COVID-19; Coping strategies for children and adolescents in their chronic illness process during the COVID-19 pandemic.Final considerationsunderstanding the experiences and coping strategies of children and adolescents with chronic illness demonstrated the expression of creative imagination, incorporated by subjective components, which brings to light an approximation with the reality perceived and interpreted in a context of the COVID-19 pandemic.
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Project description:ObjectiveSomatization and functional somatic symptoms reflect conditions in which physical symptoms are not sufficiently explained by medical conditions. Literature suggests that these somatic symptoms may be related to illness exposure in the family. Children with a parent or sibling with a chronic illness may be particularly vulnerable to developing somatic symptoms. This study provides a systematic review of the literature on somatic symptoms in children with a chronically ill family member.MethodsA systematic review (PROSPERO registry ID: CRD42018092344) was conducted using six databases (PubMed, EMBASE, PsychINFO, Scopus, CINAHL, and Cochrane) from articles published before April 5, 2018. All authors evaluated articles by title and abstract, and then by full-text review. Relevant data were extracted by the first author and reviewed by remaining authors.ResultsTwenty-seven unique studies met the criteria. Seventeen examined somatic symptoms in children with a chronically ill parent, and seven evaluated somatic symptoms in children with a chronically ill sibling. Three studies examined somatic symptoms in children with an unspecified ill relative. The strongest relationship between child somatization and familial illness was found with children with a chronically ill parent (13/17 studies). Evidence for somatic symptoms in children with an ill sibling was mixed (4/7 studies found a positive association).ConclusionsThe literature on somatic symptoms in children suggests that parental illness is related to increased somatic symptoms in children. Research examining the effects of having a sibling with an illness on somatic symptoms is mixed. Several areas of future research are outlined to further clarify the relationship between familial chronic illness and somatic symptoms.
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Project description:BackgroundExposure to parental chronic illness is associated with adverse developmental outcomes.ObjectiveWe examined the association between parental multiple sclerosis (MS) and parental MS-related clinical factors on developmental health.MethodsWe conducted a population-based cohort study in British Columbia, Canada, using linked health databases. The outcome was childhood development at 5 years of age, expressed as vulnerability on the Early Development Instrument (EDI). Adjusted odds ratios (aORs) and 95% confidence intervals (CIs) were estimated using conditional logistic regression.ResultsMS-affected parents (n = 783) were older, more likely to be English speakers, and had higher rates of mental health morbidity (39.6% vs 22.2%, p < 0.001) than unaffected parents (n = 2988). In the adjusted models, children of mothers with MS (aOR = 0.62, 95% CI = 0.44-0.87), but not children of the fathers with MS, had a lower risk of vulnerability on the social development domain of the EDI. However, mental health comorbidity (aOR = 1.62, 95% CI = 1.05-2.50) and physical comorbidity (aOR = 1.67, 95% CI = 1.05-2.64) among mothers with MS were associated with increased vulnerability on the EDI.ConclusionMaternal MS, but not paternal MS, was associated with lower rates of developmental vulnerability on the social development domain. However, mental and physical comorbidity among MS-affected mothers were associated with increased developmental vulnerability in children.
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Project description:The loss of a job is the loss of a major social and economic role and is associated with long-term negative economic and psychological consequences for workers and families. Modeling the causal effects of a social process like layoff with observational data depends crucially on the degree to which the model accounts for the characteristics that predict loss. We report analyses predicting layoff in the Fragile Families data as part of the Fragile Families Challenge. Our model, grounded in empirical social science research on layoff, did not perform substantially worse than the best-performing model using data science techniques. This result is not fully unforeseen, given that layoff functions as a relatively exogenous shock. Future work using the results of the Challenge should attend to whether small improvements in prediction models, like those we observe across models of layoff, nevertheless significantly increase the validity of subsequent models for causal inference.
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Project description:PurposeIn hospitalized children with a chronic disease, malnutrition was associated with a lower subjective health status. In outpatient children with a chronic disease attending special schools, this association has never been studied. The aim of this study was to assess the association between nutritional status and subjective health status in chronically ill children attending special schools.MethodsOverall, 642 children, median age 9.8 years (IQR 7.7-11.5), 60 % male, 72 % Caucasian, were included in this prospective study in nine special schools for chronically ill children in the Netherlands. Overall malnutrition was assessed as: acute malnutrition (<-2 SDS for weight for height (WFH)) and chronic malnutrition (<-2 SDS for height for age). The malnutrition risk was assessed with the nutritional risk-screening tool STRONGkids. Subjective health status was assessed with EQ-5D.ResultsOverall, 16 % of the children had overall malnutrition: 3 % acute and 13 % chronic malnutrition. Nurses reported 'some/severe problems' on the health status dimensions mobility (15 %), self-care (17 %), usual activities (19 %), pain/discomfort (22 %), and anxiety/depression (22 %) in chronically ill children. Their mean visual analogue scale score (VAS) was 73.0 (SD 11.1). Malnutrition, medication usage, and younger age explained 38 % of the variance of the VAS score.ConclusionsThe presence of overall malnutrition in chronically ill children attending special schools was associated with lower subjective health status, especially in younger children and in those with chronic medication usage. Therefore, it is important to develop and use profile-screening tools to identify these children.
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Project description:BackgroundGiven the broad scope of the spillover effects of illness, it is important to characterize the variability in these outcomes to identify relationship types in which secondary impacts of illness are particularly important to include in health economic evaluations.PurposeTo examine heterogeneity in spillover effects of chronic conditions on family members by type of familial relationship with patient.MethodsAdults (aged ≥18 years) and adolescents (aged 13-17 years) who had a parent, spouse, or child in their household with a chronic condition (Alzheimer's disease/dementia, arthritis, cancer, or depression) were recruited from a US national panel to participate in an on-line survey. Respondents were asked to rate the spillover effect of their family member's illness on their own health on a 0-100 scale, with lower scores indicating greater spillover. Regression analysis was used to evaluate the association between rating scale scores and relationship with an ill family member (ill parent, child, or spouse) for each illness separately, controlling for caregiving responsibility and the health status of the ill family member.Results1,267 adults and 102 adolescents met inclusion criteria. In adjusted analyses, having a sick child was significantly (p < 0.05) associated with lower rating scale scores compared with having a spouse with the same condition (cancer: -24.2; depression -9.7). Having a non-elderly or elderly adult parent with a condition, compared with a spouse, was significantly associated with lower rating scale scores for arthritis (-3.8) and depression (-5.3), but not for Alzheimer's disease/dementia or cancer.ConclusionsThe impact of illness on family members, measured with a rating scale, varies by relationship type for certain illnesses. Having a child with cancer, a parent with arthritis, or either with depression, is significantly associated with greater spillover, compared with having a spouse with one of these conditions.
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Project description:ObjectiveTo identify factors associated with perception of care coordination problems among chronically ill patients.MethodsPatient-level data were obtained from a random-digit dial telephone survey of adults with chronic conditions. The survey measured respondents' self-report of care coordination problems and level of patient activation, using the Patient Activation Measure (PAM-13). Logistic regression was used to assess association between respondents' self-report of care coordination problems and a set of patient characteristics.ResultsRespondents in the highest activation stage had roughly 30-40 percent lower odds of reporting care coordination problems compared to those in the lowest stage (p < .01). Respondents with multiple chronic conditions were significantly more likely to report coordination problems than those with hypertension only. Respondents' race/ethnicity, employment, insurance status, income, and length of illness were not significantly associated with self-reported care coordination problems.ConclusionWe conclude that patient activation and complexity of chronic illness are strongly associated with patients' self-report of care coordination problems. Developing targeted strategies to improve care coordination around these patient characteristics may be an effective way to address the issue.
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