RESUMO
Brand and licensed characters frequently appear on children's breakfast cereal boxes and are known to affect children's product perceptions, selection, and consumption. However, less is known about their impact on parents' perceptions of foods they purchase for their child. The present study assessed the impact of brand and licensed characters featured on three children's breakfast cereal packages on parents' intentions and perceptions in an online experiment. Parents of children aged 2-12 years (n = 1013) were randomized into one of two conditions: breakfast cereals containing brand and licensed characters or breakfast cereals without any characters. Within each condition, participants viewed three breakfast cereal brands in random order per their assigned condition and reported their purchase intentions, healthfulness perceptions, and perceptions of appeal to children using 5-point Likert scales. No significant differences in purchase intentions (p = 0.91), perceived healthfulness (p = 0.52) or perceived child appeal (p = 0.59) were observed between the experimental and control groups. However, exploratory moderation analyses revealed that educational attainment moderated the impact of experimental condition on purchase intentions (p for interaction = 0.002) such that participants with a bachelor's degree in the character condition reported 0.36 points lower purchase intentions compared to the control with no difference between conditions for those with an associate's degree/trade school or high school degree or less. This study did not find an impact of brand and licensed characters on children's breakfast cereals, suggesting that their primary appeal is directly to children. Parents with higher educational attainment may be skeptical of characters on cereal brands. Additional research on the impact of brand and licensed characters on other products, in real-world settings, is needed.
Assuntos
Desjejum , Comportamento do Consumidor , Grão Comestível , Preferências Alimentares , Intenção , Pais , Humanos , Feminino , Masculino , Criança , Pré-Escolar , Pais/psicologia , Preferências Alimentares/psicologia , Adulto , Percepção , Publicidade/métodos , Comportamento de Escolha , Conhecimentos, Atitudes e Prática em Saúde , EscolaridadeRESUMO
Children with autism spectrum disorder (ASD) routinely undergo genetic testing (GT) to identify the causative genetic etiology of their ASD. As there are questions about the impact of GT beyond clinical diagnosis, we conducted a mixed methods study to assess the perceived benefits of GT by exploring factors that lead parents to pursue these tests and the benefits experienced. Respondents were part of a pretest or posttest group. The pretest group (N = 22) expressed intent to pursue GT and the posttest group (N = 32) had undergone GT and received results at least 3 months prior to completing the survey. Responses were compared between and within groups. Free text responses were coded for themes and selection questions were analyzed using Fisher's exact tests. Our results demonstrate significant differences between the groups with participants in the pretest group more likely to choose "increased access to therapies" (p = 0.026) and "improved healthcare" (p < 0.000) as reasons to pursue testing. Benefits were also significantly different with "improved healthcare" (p = 0.009), "improved access to services" (p = 0.012), and "improved access to therapies" (p = 0.003) more frequently anticipated by the pretest group than reported by the posttest group. A relationship between GT and clinical management changes was reported by 34.4-50.0% of the posttest group. Among that group, genetic result type (positive, negative, or variant of uncertain significance) was associated with differing perceived benefits of testing. Thematic analysis revealed increased knowledge and coping as reported benefits in both groups. Our findings indicate a discrepancy between parental expectations and experiences of GT. Comprehensive pretest and posttest genetic counseling are necessary to improve information retention, address potential outcomes, and set expectations of GT for parents of children with ASD.
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Transtorno do Espectro Autista , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/genética , Criança , Aconselhamento Genético , Testes Genéticos/métodos , Humanos , Pais/psicologia , Inquéritos e QuestionáriosRESUMO
PURPOSE: Parents are important facilitators of physical activity for children, yet little is known about the perceptions of parents of childhood cancer survivors. We investigated parent perceptions of their own and their child's physical activity levels after cancer treatment and examined associations with clinical, demographic, and psychosocial factors. METHODS: We conducted a cross-sectional survey among 125 parents and 125 survivors. Parents reported on the perceived importance of their child being physically active and concerns regarding exercising after cancer treatment. RESULTS: Parents and survivors self-reported median (range) of 127.5 (0-1260) and 220 (0-1470) min/week of moderate-to-vigorous physical activity. Most parents (n = 109, 98%) believed that physical activity was highly important for their child. Some parents (n = 19, 17%) reported concerns, most commonly regarding exercise safety (n = 7, 22%). Parents were more likely to perceive that their child should increase physical activity if their child was an adolescent and had high body fat percentage. CONCLUSIONS: Physical activity levels varied widely among survivors, reflecting factors including parents' lifestyles, limited understanding of exercise benefits and perceptions of risk. Given survivors' insufficient physical activity levels and sedentary behaviour among families, embedding physical activity promotion into health systems and follow-up support could benefit the entire family unit.
Assuntos
Neoplasias , Adolescente , Criança , Humanos , Estudos Transversais , Neoplasias/terapia , Pais/psicologia , Exercício Físico/psicologia , Comportamento SedentárioRESUMO
Numerous US states have implemented newborn screening for Krabbe disease (Krabbe NBS) as a result of legislative state mandates. While healthcare provider opinions toward Krabbe NBS have been documented, few studies have explored parental experiences and opinions regarding Krabbe NBS. Eleven families, who received a false-positive Krabbe NBS result and received genetic counseling at an institution in central Ohio, were consented to participate in semistructured interviews. Interviews explored parents' experiences throughout the NBS process and ascertained their opinions regarding Krabbe NBS. Three major themes emerged from thematic analysis: (1) improved understanding of the NBS process from a parent perspective, (2) the role of healthcare provider communication, and (3) the value of Krabbe NBS. Parents saw value in Krabbe NBS, despite many disclosing emotional distress and uncertainty throughout the NBS process. Parent experiences throughout the NBS process varied widely. Due to the expressed emotional distress, further research assessing effective communication during the NBS process is warranted. The researchers suggest additional NBS education for non-genetics healthcare providers (i.e., nurses or primary care physicians) and further participation of genetic counselors in the NBS process may benefit families with a positive Krabbe NBS result.
Assuntos
Leucodistrofia de Células Globoides , Triagem Neonatal , Aconselhamento Genético , Pessoal de Saúde/psicologia , Humanos , Recém-Nascido , Leucodistrofia de Células Globoides/diagnóstico , Triagem Neonatal/psicologia , Pais/psicologiaRESUMO
BACKGROUND: In response to the COVID-19 pandemic, local and institutional guidelines restricted non-emergent, in-person visits in outpatient specialty clinics. Nurse practitioners (NPs) in pediatric gastroenterology clinics immediately shifted their practice to telehealth (TH). LOCAL PROBLEM: The shift to TH necessitated a change in practice. This quality improvement project was designed to define factors influencing family's perceptions of TH and secure feedback on the TH experience. TH is remaining an option for accessing care even as restrictions are being lifted. Feedback is necessary to ensure that quality of care and high patient satisfaction are maintained in a virtual environment. METHODS: The Unified Theory of Acceptance and Use of Technology was used to frame the project. Surveys were collected from NPs related to services provided and complexities of each encounter. Post-visit surveys were conducted with families to assess their perceptions of the visit. Findings were discussed to identify and address gaps in service. RESULTS: Parent/family surveys were consistent with NP feedback. Results indicated that parents were satisfied with care provided via TH, but that these visits were limited by incomplete assessments, lacked the intimacy of in-person encounters and were often difficult to access due to technological issues. CONCLUSIONS: It is anticipated that TH will be used in the post pandemic era to provide routine and non-emergent acute care. Institutions and providers need to consider factors influencing the patient experience learned during the pandemic and implement evidenced-based strategies that ensure quality care that meets patients' needs.
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COVID-19 , Gastroenterologia , Telemedicina , Criança , Humanos , Pandemias , Pais , Melhoria de Qualidade , SARS-CoV-2RESUMO
BACKGROUND: Stakeholders can provide valuable input to improve scheduling paediatric ambulatory clinic appointments, a complex process that requires effective planning and communication between parents, administrative staff and clinicians. The purpose of our study was to characterize recommendations from parents, administrative staff and clinicians to improve paediatric ambulatory appointment scheduling. METHODS: Conducted between February 2018 and January 2019, this qualitative study was guided by qualitative description. Data collection was completed using focus groups with three stakeholder groups: parents, administrative staff and clinicians. Participants provided recommendations to optimize paediatric ambulatory appointment scheduling at the Stollery Children's Hospital in Edmonton, Alberta, Canada. Focus group data were transcribed verbatim and analysed using manifest inductive content analysis. RESULTS: Forty-six participants (mean age: 42.7; 87% female) participated in 12 focus groups. Parents (n = 11), administrative staff (n = 22) and clinicians (n = 13) made recommendations that were organized into two categories: appointment triaging and arranging. Triaging recommendations were related to appointment availability (e.g. providing alternatives to cancelling clinics with short notice) and waitlist management (e.g. developing clear and consistent policies regarding information flow and communication between clinics and administrative staff). Appointment arranging recommendations referred to booking (e.g. directly involving parents in the booking process), reminders (e.g. using text message reminders) and attendance (e.g. providing parents with a single point of contact who can provide the correct information about late and cancellation policies). Recommendations were similar across stakeholder groups. CONCLUSION: Our findings showed congruent recommendations across stakeholder groups to address challenges with scheduling ambulatory appointments, many of which have the potential to be modified. Experimental research and quality improvement initiatives are needed to determine the feasibility, acceptability and effectiveness of stakeholder recommendations to improve triaging and scheduling paediatric ambulatory appointments.
Assuntos
Instituições de Assistência Ambulatorial , Agendamento de Consultas , Adulto , Alberta , Criança , Feminino , Humanos , Masculino , Pais , Pesquisa QualitativaRESUMO
OBJECTIVE: Many children's hospitals have established 'recreation rooms' to help reduce distress among hospitalised children and families. We investigated recreation rooms in two Australian children's hospitals to determine: 1) families' first use of the room (including discovery and delays); 2) characteristics of families accessing the room; 3) parents' positive and negative associations with the room; and 4) parents' most and least valued aspects of the room. METHOD: Using a concurrent mixed methods design, parents completed questionnaires (Restorative Experiences Tool, Parenting Stress Index-Short Form, Paediatric Quality of Life Inventory) and an optional interview. We analysed data using t-tests and multiple regressions (questionnaires) and content analysis (interviews). RESULTS: Parents (n = 123) commonly reported delays in accessing the recreation room (n = 74, 60.2%). Parents' distress was positively related to their frequency of room use (r = 0.28, p = .001). Families of hospitalised children with lower physical (r = -0.36, p < .001) and psychosocial (r = -0.31, p = .001) functioning used the room more frequently than families of children with higher functioning. Parents reported more positive than negative associations with the rooms for themselves (t(121) = 20.92, 95% CI = 4.34-5.25), their hospitalised child (t(117) = 23.91, 95% CI = 5.00-5.90), and any siblings (t(79) = 15.76, 95% CI = 4.28-5.52). Thirteen parents completed the interviews. We identified three themes: 1) respite; 2) social support and reduced isolation; and 3) need for greater accessibility (particularly for infants/toddlers). CONCLUSIONS: Respite and social support provided within the recreation rooms may be particularly important for highly distressed parents and families of children with lower psychosocial and physical functioning. Dedicated areas for different age groups may help to improve accessibility of the recreation rooms.
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Criança Hospitalizada , Qualidade de Vida , Austrália , Criança , Hospitais , Humanos , Poder Familiar , Pais , RecreaçãoRESUMO
PURPOSE: Clinical genome or exome sequencing (GS/ES) provides a diagnosis for many individuals with suspected genetic disorders, but also yields negative or uncertain results for the majority. This study examines how parents of a child with an undiagnosed condition attribute personal utility to all types of ES results. METHODS: Return of 31 exome sequencing results was observed during clinic sessions, followed by semistructured interviews with parents one month later. Observations and interviews were recorded and transcribed. Data display matrices were used for content analysis and systematic comparisons of parents' perceptions of utility. RESULTS: ES results could not provide all the answers to parents' questions, especially in cases of clinically uninformative results, but parents nonetheless attributed utility to the knowledge gained. Parents across all results categories used the genomic information to rule out possible causes, end or postpone the diagnostic odyssey, and shift focus to treatment and management of symptoms. CONCLUSION: This study suggests that parents value even uninformative ES results while expressing hope for future discoveries. As pediatric genetics moves toward GS/ES as a first-tier test, how parents perceive the personal utility of negative or uncertain results is an important topic for genetic counseling and further research.
Assuntos
Exoma , Testes Genéticos , Criança , Exoma/genética , Aconselhamento Genético , Humanos , Pais , PercepçãoRESUMO
Offering large portions of high energy dense (HED) foods increases overall energy intake in children, a potentially important contributing factor to childhood overweight and obesity. Packaging offers a simple heuristic to encourage healthy eating for nutrient dense foods and to downsize portions of HED foods. However, it is not clear how parents use packaging for portion control, nor how packaging might be used as a solution to offset large portions. Therefore, the aim of the present study was to investigate mothers' portion strategies and how they use packaging to facilitate portion control for children. 21 mothers of 25 children aged 1-5 years participated in semi-structured interviews to identify strategies used by mothers for portioning snack and meal items. Mothers reported feeling confident in amounts offered to their children, and were unaware of, or did not apply, recommendations for age-appropriate portions of meal items and snacks. Mothers portioned according to child appetite, needs and characteristics, not necessarily age. They reported that their child was able to determine for themselves how much to consume. However, mothers also applied restrictions to some foods. No differences in considerations and strategies were found between different ethnic groups of British and Chinese mothers. Mothers reported that packaging was an important determinant of preferences and a useful, convenient means of portion control. To promote appropriate consumption norms in children, a packaging design concept is described to aid downsizing for a highly liked HED food. Future studies should examine how creative packaging solutions influence parents' feeding practices and how this might influence dietary quality through user testing.
Assuntos
Dieta Saudável/psicologia , Embalagem de Alimentos/métodos , Preferências Alimentares/psicologia , Tamanho da Porção/psicologia , Lanches/psicologia , Adulto , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Mães/psicologia , Poder Familiar/psicologia , Pesquisa QualitativaRESUMO
OBJECTIVE: The purpose of this study was to examine experiences and practices related to supporting literacy development and preventing reading difficulties in children with cleft lip and/or palate (CL/P). METHODS: Via online surveys, 67 respondents including 35 parents/guardians of children with CL/P and 32 speech-language pathologists (SLPs) answered questions about home literacy practices, clinical practices, and perceptions of SLPs' role in literacy. RESULTS: The variability in responses highlights both the positive contributions of parents/guardians and SLPs in supporting literacy development and preventing reading disabilities in children with cleft and the need for increased education and efforts to meet their literacy needs.
Assuntos
Fenda Labial , Fissura Palatina , Criança , Humanos , Alfabetização , PaisRESUMO
BACKGROUND: Although literature suggests that parents need support when their child is diagnosed with cerebral palsy (CP), it is unclear to what extent providers implement these supports in practice and what parental perspectives surround provider early diagnosis and management of CP. Therefore, we aimed to characterize and compare experiences of providers and parents of children with CP with regards to early detection and intervention. METHOD: Seventeen parents participated in day-long world-café style workshops focused on categories extracted from the International Classification of Function framework and recent systematic reviews of early detection for CP. Thirty regional providers (generalists, specialists, and therapists) caring for infants with CP completed surveys with scaled score and open-ended questions. Quantitative and qualitative data were independently assessed by two reviewers to identify prominent themes. RESULTS: All parents (100%) stated early diagnosis or high risk for CP classification was beneficial compared with only 50% of providers who often gave early CP diagnoses before 12 months. Top parent priorities were honesty and positively phrased messages. Providers most often addressed cognition, primary care need, motor, and feeding issues (80%, 62%, 54%, 54% frequently/sometimes). Matching priorities for discussion were neuroimaging timing/risk/benefit, cognition, primary care, motor, and feeding/nutrition. Discordance occurred for participation, parent well-being, pain and vision, with parents wanting more education and resources. CONCLUSIONS: Receiving early diagnoses or high-risk for CP classification is a parent priority. Alignment between parents and providers exists for International Classification of Function domains of body functions/structures and activity, but less for those of environment, personal, and participation.
Assuntos
Paralisia Cerebral/diagnóstico , Diagnóstico Precoce , Intervenção Médica Precoce/métodos , Educação , Pais/educação , Adulto , Atitude do Pessoal de Saúde , Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/terapia , Protocolos Clínicos , Avaliação da Deficiência , Pesquisas sobre Atenção à Saúde , Conhecimentos, Atitudes e Prática em Saúde , Prioridades em Saúde , Humanos , Lactente , Avaliação de Resultados em Cuidados de Saúde , Pais/psicologia , Medição de RiscoRESUMO
BACKGROUND: The Healthy Child Programme is the universal public health system in England to assess and monitor child health from 0 to 19. Following a review of measures for closer monitoring at age 2 years, the Department of Health for England implemented the Ages & Stages Questionnaires®, Third Edition (ASQ-3™; Hereon, ASQ-3). AIM: The aim of this study was to evaluate the acceptability and understanding of the ASQ-3 in England by health professionals and parents. METHOD: A mixed-methods approach was used. This paper reports on the qualitative data drawn from interviews with 40 parents and 12 focus groups with 85 health professionals. The data were analysed using applied thematic analysis. FINDINGS: Overall, parents and health professionals found the ASQ-3 acceptable and understandable and could use it as a measure at age 2 years. The ability to work in partnership was valued. Some limitations included potential to cause anxiety, concerns around the safety of some of the items, and use of Americanized language. Health professional's training in the use the ASQ-3 was inconsistent. CONCLUSION: The ASQ-3 is an acceptable and understandable measure to use as part of the 2-year assessment with some adaptations to the English context and some standardized training for health professionals.
Assuntos
Desenvolvimento Infantil/fisiologia , Pais , Pré-Escolar , Deficiências do Desenvolvimento/epidemiologia , Inglaterra/epidemiologia , Feminino , Nível de Saúde , Humanos , Masculino , Pais/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Pesquisa QualitativaRESUMO
BACKGROUND: Toilet training (TT) is a milestone in a child's development. Nowadays, children complete TT later than previous generations. This can have detrimental consequences for the child, the parents, and the environment. TT is experienced as difficult and time-consuming; parents could benefit from guidelines to assist in this process. METHODS: Focus group discussions (FGDs) were used to explore parents' experiences in an inductive approach applying purposive sampling. The FGDs aimed to explore the type of information parents wanted to receive on TT, from whom and how. RESULTS: After six FGDs, including 37 participants with personal experience in TT, data saturation was achieved. The findings of this qualitative study show that reputable agencies, family, friends, day-care workers, and nursery school teachers were considered very helpful and trustworthy sources. TT information should be easily understandable and not contain scientific terms or much text. A colourful and illustrated brochure sent by regular mail is preferred. CONCLUSION: Our study allows to develop a source of correct and wanted information about TT that parents can and want to use, which helps them completing this training more easily and timely.
Assuntos
Educação em Saúde/métodos , Poder Familiar , Treinamento no Uso de Banheiro , Adulto , Fatores Etários , Bélgica , Desenvolvimento Infantil , Informação de Saúde ao Consumidor , Feminino , Grupos Focais , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Lactente , Masculino , Relações Pais-Filho , Pais/psicologiaRESUMO
This cross-sectional, mixed-method study examined factors associated with parent perceptions of child vulnerability and protectiveness in three groups: cystic fibrosis (CF-group, n = 40), intermediate CF classification (I-group, n = 20), and healthy (H-group, n = 50). A composite indicator structural equation (CISE) using Bayesian estimation tested two mediational models: psychological and biological. Significant results ( p < .05) from the psychological model showed I-group and CF-group parents perceived their children to be more vulnerable than H-group parents but reported lower levels of protectiveness than H-group parents. Perceptions of vulnerability mediated protectiveness for CF- and I-groups. The biological model showed I-group children had significantly less severe genotype and phenotype, and lower sweat chloride levels than the CF-group; I-group parents had lower expectations about children developing CF symptoms. Both models showed negative associations between children's ages and protectiveness. Psychological factors explained perceptions of child vulnerability and protectiveness; biological factors explained protectiveness. Parent perceptions of vulnerability and protectiveness are separate, independent constructs.
Assuntos
Adaptação Psicológica , Atitude Frente a Saúde , Cuidadores/psicologia , Fibrose Cística/classificação , Fibrose Cística/psicologia , Pais/psicologia , Populações Vulneráveis/psicologia , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , MasculinoRESUMO
OBJECTIVE: We sought to determine the prevalence of, and identify factors associated with, parent questions about physical activity for their child with a chronic cardiac, respiratory, or rheumatologic condition. METHODS: This cross-sectional study of 56 children (32 [57%] female), 3 to 18 years of age, with chronic cardiac (n=21), respiratory (n=18), or rheumatologic (n=17) conditions involved a parent questionnaire about their child's physical activity participation and measurement of the child's activity with an omni-directional accelerometer for 1 week. RESULTS: Parents of 20 (36%) children had at least one question about their child's physical activity participation, and the prevalence of questions did not vary by age (Wald chi square = 0.77, P=0.38), gender (Wald chi square = 0.11, P=0.74), or clinic (Wald chi square = 1.77, P=0.41). Parent questions were associated (P = 0.04) with lower levels of activity for boys (95% confidence interval [CI] for estimated marginal means: With questions: 197, 395; Without questions: 346, 500) and higher levels of activity for girls (95% CI for estimated marginal means: With questions: 268, 448; Without questions: 239, 369). A multivariable logistic regression model found that parents with questions had higher odds of having a child who was less well (odds ratio [OR]=19.9 for unwell, OR=5.6 for generally well with some symptoms versus well and asymptomatic) and had a history of cardiac arrhythmia (OR=7.6). CONCLUSIONS: Over one-third of parents reported having questions about physical activity for their child with a chronic medical condition, suggesting substantial uncertainty even among children reported as active. Presence of parent uncertainty is associated with parent reports of the child being unwell or a history of cardiac arrhythmia. By asking parents if they have questions about their child's activity, health care professionals may be better able to identify inactive boys and overprotective attitudes toward active girls.
RESUMO
Traditionally, assessments of social information processing and associated emotional distress have used children's self-reports. We posit that additional informants, such as parents, may help illuminate the association between these variables and aggression. Our sample was composed of 222 dual-parent families of fourth-grade children (103 boys; 119 girls). Children responded to instrumental and relational provocations and their parents read the same scenarios and responded the way they believed their child would. Peer nominations provided aggression scores. We explored how means differed by provocation type (relational vs. instrumental), informant (mother, father, and child), and gender of child. The results also suggest that parent perceptions may effectively predict children's participation in relational and physical aggression, above and beyond the child's self-reports.
Assuntos
Emoções/fisiologia , Hostilidade , Intenção , Percepção Social , Estresse Psicológico/psicologia , Agressão/psicologia , Criança , Feminino , Humanos , Masculino , Pais , Grupo AssociadoRESUMO
This study sought to examine parent perceptions of medication use for 151 preschool children (M age = 5.05 years, 78% male, 82% Hispanic/Latino) with or at-risk for ADHD who were medication naive. Parents completed questionnaires regarding family background and perceptions of medication treatment. Parents and teachers completed ratings of child diagnostic symptomatology, behavioral functioning, and functional impairment. Results indicate that only 45% of parents were open to the possibility of medication. No associations were found between child demographics, severity of ADHD symptoms, or level of functional impairment and parental openness to medication. On the other hand, children of parents who were open to medication tended to have higher levels of oppositionality and aggression (as reported by parents but not teachers) compared with children of parents who were not open to medication. These findings are discussed in the context of early intervention given their implications for a variety of treatment providers.
Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Conhecimentos, Atitudes e Prática em Saúde , Adesão à Medicação/psicologia , Pais/psicologia , Inquéritos e Questionários , Agressão , Pré-Escolar , Feminino , Hispânico ou Latino/estatística & dados numéricos , Humanos , MasculinoRESUMO
AIM: To describe the course of parents' perceptions of the family centredness of rehabilitation services provided to their children with cerebral palsy (CP) before and after the transition from preschool to school-based services. BACKGROUND: Parents of 59 children with CP aged 2.5 to 4.5 years filled in the 56-item Measure of Processes of Care (MPOC-56) on three occasions pre (2) and post (1) transition to school-based services. Friedman tests were used to describe changes in parents' perceptions over time. Mann-Whitney U tests were used to describe differences in course of parents' perceptions between regular school and special school or day care. RESULTS: Parents' perceptions of preschool services were stable between the ages of 2.5 and 3.5 years, with a decline after transition on four of the five domains of the MPOC (P < 0.05). The domain providing general information was scored lowest (median at baseline 3.56, IQR 2.39) compared with the four other MPOC domains, but remained stable over time. No differences in course of parental perceptions were found for school type. CONCLUSION: The transition from preschool to school-based services for children with CP is associated with a decrease in parents' perception of family centredness independent of the type of school. The transition in services has a negative impact on perceived family-centred practices.
Assuntos
Paralisia Cerebral/reabilitação , Serviços de Saúde da Criança/organização & administração , Prestação Integrada de Cuidados de Saúde/organização & administração , Crianças com Deficiência/reabilitação , Pais/psicologia , Transferência de Pacientes/organização & administração , Assistência Centrada no Paciente/normas , Serviços de Saúde Escolar/normas , Paralisia Cerebral/psicologia , Paralisia Cerebral/terapia , Serviços de Saúde da Criança/normas , Pré-Escolar , Crianças com Deficiência/psicologia , Crianças com Deficiência/estatística & dados numéricos , Feminino , Humanos , Estudos Longitudinais , Masculino , Países Baixos , Avaliação de Processos em Cuidados de Saúde , Relações Profissional-Família , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Early and regular developmental screening can improve children's development through early intervention but is insufficiently used. Most developmental problems are readily evident at the 18-month well-baby visit. This trial's purpose is to: (1) compare identification rates of developmental problems by GPs/family physicians using four evidence-based tools with non-evidence based screening, and (2) ascertain whether the four tools can be completed in 10-min pre-visit on a computer. METHODS: We compared two approaches to early identification via random assignment of 54 families to either: 'usual care' (informal judgment including ad-hoc milestones, n = 25); or (2) 'Evidence-based' care (use of four validated, accurate screening tools, n = 29), including: the Parents' Evaluation of Developmental Status (PEDS), the PEDS-Developmental Milestones (PEDS-DM), the Modified Checklist for Autism in Toddlers (M-CHAT) and PHQ9 (maternal depression). RESULTS: In the 'usual care' group four (16%) and in the evidence-based tools group 18 (62%) were identified as having a possible developmental problem. In the evidence-based tools group three infants were to be recalled at 24 months for language checks (no specialist referrals made). In the 'usual care' group four problems were identified: one child was referred for speech therapy, two to return to check language at 24 months and a mother to discuss depression. All forms were completed on-line within 10 min. CONCLUSIONS: Despite higher early detection rates in the evidence-based care group, there were no differences in referral rates between evidence-based and usual-care groups. This suggests that clinicians: (1) override evidence-based screening results with informal judgment; and/or (2) need assistance understanding test results and making referrals. Possible solutions are improve the quality of information obtained from the screening process, improved training of physicians, improved support for individual practices and acceptance by the regional health authority for overall responsibility for screening and creation of a comprehensive network.
Assuntos
Deficiências do Desenvolvimento/diagnóstico , Programas de Rastreamento/métodos , Pais , Médicos de Família , Encaminhamento e Consulta/estatística & dados numéricos , Desenvolvimento Infantil , Pré-Escolar , Deficiências do Desenvolvimento/epidemiologia , Intervenção Educacional Precoce , Feminino , Humanos , Lactente , Recém-Nascido , Desenvolvimento da Linguagem , Masculino , Destreza Motora , Padrões de Prática Médica , Comportamento SocialRESUMO
BACKGROUND: Besides the right to freedom, human rights can be seen as a basic requirement also for the maintenance of human dignity and the opportunity to thrive - particularly in the case of children with disabilities. It is imperative to explore primary caregivers' awareness of the human rights of their children with intellectual disabilities in view of the role they may play in either facilitating or restricting these rights. This paper explores the awareness of 219 primary caregivers of the human rights of their children with intellectual disabilities. METHOD: A descriptive survey design was used with a custom-designed questionnaire that employed a deductive content analysis based on the articles of the United Nations Convention on the Rights of a Child. Comparisons were drawn between the awareness of primary caregivers from urban and those from rural areas. RESULTS: The majority (85.5%) of participants agreed that their child with intellectual disability had rights. Three broad kinds of right were mentioned (in descending order): provision rights, protection rights and participation rights. Participants from both urban and rural areas mentioned education (a provision right) most frequently. However, participants from urban areas were more aware of the different rights that existed than were their counterparts from rural areas. CONCLUSION: Primary caregivers in both rural and urban areas are aware of the rights of their children with disabilities, although there are significant differences between them.