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1.
Cereb Cortex ; 34(4)2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38610087

RESUMO

Hearing is critical to spoken language, cognitive, and social development. Little is known about how early auditory experiences impact the brain structure of children with bilateral sensorineural hearing loss. This study examined the influence of hearing aid use and residual hearing on the auditory cortex of children with severe to profound congenital sensorineural hearing loss. We evaluated cortical preservation in 103 young pediatric cochlear implant candidates (55 females and 48 males) by comparing their multivoxel pattern similarity of auditory cortical structure with that of 78 age-matched children with typical hearing. The results demonstrated that early-stage hearing aid use preserved the auditory cortex of children with bilateral congenital sensorineural hearing loss. Children with less residual hearing experienced a more pronounced advantage from hearing aid use. However, this beneficial effect gradually diminished after 17 months of hearing aid use. These findings support timely fitting of hearing aids in conjunction with early implantation to take advantage of neural preservation to maximize auditory and spoken language development.


Assuntos
Córtex Auditivo , Auxiliares de Audição , Perda Auditiva Neurossensorial , Feminino , Masculino , Humanos , Criança , Perda Auditiva Neurossensorial/terapia , Audição , Encéfalo
2.
Br J Haematol ; 2024 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-39072718

RESUMO

The Kids ITP Tools (KIT) is a health-related quality of life (HRQoL) questionnaire that evaluates quality of life in children with immune thrombocytopenia (ITP). There are three formats: Child Self-Report, Parent Proxy-Report and Parent Impact-Report. This study aimed to develop a domain structure by grouping-related questions from the questionnaire into domains that independently reflect various aspects of HRQoL. The study was conducted in two phases. Phase 1 involved an online survey distributed to experts to identify conceptual domains for the KIT. Phase 2 utilized a statistical approach to analyse responses from patients with ITP and their families. A revised KIT 2.0 was ultimately developed to aid in treatment decision-making and monitoring of ITP.

3.
Pediatr Blood Cancer ; 71(4): e30888, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38265264

RESUMO

The Kids' ITP Tools (KIT) is a questionnaire to assess quality of life of children with immune thrombocytopenia (ITP). The aim of this study was to update this previously validated tool to align with changes in clinical practice, specifically, treatment with thrombopoietin receptor agonists (TPO-RAs). Children aged 1-18 with ITP and/or their families were recruited to participate in interviews to review the KIT. Twenty-six interviews were conducted. Based on interview data from children and families, current guidelines, and expert opinion, five changes were made to the KIT in order to improve its face validity.


Assuntos
Púrpura Trombocitopênica Idiopática , Criança , Humanos , Púrpura Trombocitopênica Idiopática/tratamento farmacológico , Receptores de Trombopoetina/agonistas , Qualidade de Vida , Trombopoetina/uso terapêutico , Hidrazinas/uso terapêutico , Reprodutibilidade dos Testes , Proteínas Recombinantes de Fusão/uso terapêutico , Receptores Fc/uso terapêutico , Benzoatos/uso terapêutico
4.
BMC Med Ethics ; 25(1): 3, 2024 01 03.
Artigo em Inglês | MEDLINE | ID: mdl-38172914

RESUMO

BACKGROUND: Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. METHODS: We followed PRISMA guidelines and Arksey and O'Malley's approach for charting and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically. RESULTS: We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community. CONCLUSIONS: Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children.


Assuntos
Saúde da Criança , Pesquisa , Adolescente , Criança , Humanos , Canadá , Ética em Pesquisa , Consentimento dos Pais , Pais
5.
Child Care Health Dev ; 49(4): 725-731, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-36444144

RESUMO

BACKGROUND: The Activity Scale for Kids (ASK) assesses the physical disability of children (5 to 15 years old) with neurological, orthopaedic or rheumatic diseases. The objective of this study was to translate and cross-culturally adapt the ASK for Brazilian Portuguese and assess the validity and reliability of the instrument. METHODS: A total of 67 children and adolescents with musculoskeletal, neurological or rheumatic diseases participated in the study. We evaluated the comprehension of the pre-final version of the questionnaire in 24 participants and reliability and validity in the other 43 participants. The translation and adaptation of ASK to Brazilian Portuguese followed guidelines from previous studies. The validity of the Brazilian Portuguese version of the ASK was verified through Spearman's correlation with the Pediatric Quality of Life Inventory™ Version 4.0 (PedQL). Intraclass correlation coefficient verified inter- and intra-evaluator reliability, while internal consistency was assessed using Cronbach's alpha. Scores were used to assess the standard error of the mean and minimal detectable change. RESULTS: The Brazilian Portuguese version of the ASK presented excellent reliability, internal consistency, agreement and moderate correlation with PedsQL (0.522, P < 0.001) between ASK performance and PedsQL; 0.537, P < 0.001 between ASK capacity and PedsQL. CONCLUSION: The Brazilian Portuguese version of the ASK has good validity and reliability and may be used by professionals and researchers to assess the functioning of children and adolescents with disabilities.


Assuntos
Qualidade de Vida , Doenças Reumáticas , Adolescente , Humanos , Criança , Pré-Escolar , Brasil , Reprodutibilidade dos Testes , Comparação Transcultural , Inquéritos e Questionários , Traduções , Psicometria
6.
Ear Hear ; 43(2): 255-267, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35213890

RESUMO

More children with single-sided deafness (SSD) are receiving cochlear implants (CIs) due to the expansion of CI indications. This unique group of pediatric patients has different needs than the typical recipient with bilateral deafness and requires special consideration and care. The goal of cochlear implantation in these children is to provide bilateral input to encourage the development of binaural hearing. Considerations for candidacy and follow-up care should reflect and measure these goals. The purpose of this document is to review the current evidence and provide guidance for CI candidacy, evaluation, and management in children with SSD.


Assuntos
Implante Coclear , Implantes Cocleares , Surdez , Perda Auditiva Unilateral , Percepção da Fala , Criança , Surdez/reabilitação , Audição , Perda Auditiva Unilateral/reabilitação , Humanos
7.
Childs Nerv Syst ; 38(2): 455-460, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34115176

RESUMO

Gorham Stout disease (GSD) is a rare disease characterized by the proliferation of endothelial lined vessels and replacement of bone by fibrous tissue. The main imaging features are progressive osteolysis and cortical resorption. Temporal bone involvement is rare but presents as a destructive bone lesion that may be misinterpreted as more common lytic processes in the pediatric population, such as infection or Langerhans cell histiocytosis. GSD of the temporal bone is associated with cerebrospinal fluid (CSF) leaks, may present with otorrhea, and can mimic other causes of ear drainage. Here, we report the clinical course, imaging features, and outcomes of a 3-year-old girl with GSD of the temporal bone presenting with CSF leak initially attributed to infection.


Assuntos
Osteólise Essencial , Vazamento de Líquido Cefalorraquidiano/diagnóstico por imagem , Vazamento de Líquido Cefalorraquidiano/etiologia , Vazamento de Líquido Cefalorraquidiano/cirurgia , Criança , Pré-Escolar , Feminino , Humanos , Osteólise Essencial/complicações , Osteólise Essencial/diagnóstico por imagem , Osteólise Essencial/patologia , Osso Temporal/diagnóstico por imagem , Osso Temporal/patologia
8.
Proc Natl Acad Sci U S A ; 115(5): E1022-E1031, 2018 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-29339512

RESUMO

Although cochlear implantation enables some children to attain age-appropriate speech and language development, communicative delays persist in others, and outcomes are quite variable and difficult to predict, even for children implanted early in life. To understand the neurobiological basis of this variability, we used presurgical neural morphological data obtained from MRI of individual pediatric cochlear implant (CI) candidates implanted younger than 3.5 years to predict variability of their speech-perception improvement after surgery. We first compared neuroanatomical density and spatial pattern similarity of CI candidates to that of age-matched children with normal hearing, which allowed us to detail neuroanatomical networks that were either affected or unaffected by auditory deprivation. This information enables us to build machine-learning models to predict the individual children's speech development following CI. We found that regions of the brain that were unaffected by auditory deprivation, in particular the auditory association and cognitive brain regions, produced the highest accuracy, specificity, and sensitivity in patient classification and the most precise prediction results. These findings suggest that brain areas unaffected by auditory deprivation are critical to developing closer to typical speech outcomes. Moreover, the findings suggest that determination of the type of neural reorganization caused by auditory deprivation before implantation is valuable for predicting post-CI language outcomes for young children.


Assuntos
Implante Coclear , Implantes Cocleares , Neurônios/fisiologia , Fala/fisiologia , Mapeamento Encefálico , Criança , Pré-Escolar , Surdez/reabilitação , Feminino , Audição , Humanos , Desenvolvimento da Linguagem , Aprendizado de Máquina , Imageamento por Ressonância Magnética , Masculino , Modelos Neurológicos , Análise Multivariada , Rede Nervosa , Neuroanatomia , Percepção da Fala , Fonoterapia/métodos
9.
Haemophilia ; 26(1): 73-78, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31865620

RESUMO

INTRODUCTION: In many countries, there is a shift from standard half-life (SHL) to extended half-life (EHL) clotting factor concentrates (CFCs). AIM: To describe the experience of switching from SHL to an EHL FVIII CFC and the impact of this on frequency of infusions, factor consumption, bleeding rates and HRQoL using the Canadian Hemophilia Kids' Life Assessment Tool (CHO-KLAT). METHODS: A retrospective chart review was conducted at a single haemophilia treatment centre in 2018 that included boys (ages: 4-18 years) with moderate/severe haemophilia A, without inhibitors, who switched from a SHL to an EHL FVIII CFC in the previous 2 years and for whom HRQoL data were available. RESULTS: The study cohort comprised 38 boys [mean (SD) age: 11.0 (3.4) years] with moderate (n = 5)/severe (n = 33) haemophilia A. The switch was associated with a 33% reduction in the number of weekly infusions from a median of 3.5 to 2.3 (P < .0001) and a 17% reduction in median FVIII consumption from 103 IU/kg/wk to 85.5 IU/kg/wk (P = .004). There was no significant change in annualized joint bleed rates or in CHO-KLAT scores. CONCLUSIONS: Despite documenting several benefits of switching to EHL FVIII (less infusions, lower factor consumption with no increase in bleeding), our study did not demonstrate any improvement in HRQoL. We conclude that either the current CHO-KLAT tool is not optimized to measure burden of treatment administration in boys with low bleed rates switching from SHL to EHL FVIII CFCs or that a reduction of 1.2 infusions/week does not result in a meaningful change in HRQoL.


Assuntos
Fator VIII/uso terapêutico , Meia-Vida , Hemofilia A/tratamento farmacológico , Qualidade de Vida/psicologia , Adolescente , Criança , Pré-Escolar , Fator VIII/farmacologia , Humanos , Masculino , Estudos Retrospectivos
10.
Health Qual Life Outcomes ; 18(1): 76, 2020 Mar 18.
Artigo em Inglês | MEDLINE | ID: mdl-32188477

RESUMO

INTRODUCTION: Health-related quality of life evaluation is recognized as an important outcome in the assessment of boys with haemophilia. In fact, reliable health-related quality of life data are even more critical in developing countries to advocate for government agencies to develop national haemophilia care programmes. However, validated tools are not yet available in sub-Saharan African countries. AIMS: The purpose of this study was to complete the cultural adaptation and validation of the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool version2.0 (CHO-KLAT2.0) in Côte d'Ivoire. METHODS: The process included four steps: a linguistic adaptation, cognitive debriefing interviews with children and their parents, a validity assessment with the Pediatric Quality of Life Inventory (PedsQL) as a comparator, and a test-retest reliability assessment. RESULTS: The initial Ivoirian version of the CHO-KLAT2.0 was developed through a linguistic adaptation performed in close collaboration with members of the local medical team and haemophilia community. Cognitive debriefings were completed with five boys and their parents, with the final Ivoirian version of the CHO-KLAT2.0 developed in September 2017. The validation process included 37 boys with haemophilia (mean age: 11.4 years; 34 with severe and three with moderate forms of haemophilia, all treated on demand) and their parents. Among the child-reported population (n = 20), we observed a mean CHO-KLAT2.0 score of 51.3 ± 9.2; there was a moderate correlation between the CHO-KLAT2.0 and PedsQL scores (r = 0.581; p = 0.007) and an inverse correlation of the CHO-KLAT2.0 and PedsQL scores with the global rating of the degree to which the boys were bothered by their haemophilia. The mean parent proxy CHO-KLAT2.0 score (n = 17) was 53.5 ± 9.8. Among the parents, we found no significant correlation between the Ivoirian CHO-KLAT2.0 and PedsQL scores or between the parent-reported scores and the parent global ratings of bother. The test-retest intraclass correlation coefficient was 0.879 (95% CI: 0.673; 0.954) for the child-reported questionnaires and 0.880 (95% CI: 0.694; 0.955) for the proxy-reported questionnaires. CONCLUSIONS: A cross-culturally adapted and validated version of the CHO-KLAT2.0 for Côte d'Ivoire is now available that enables baseline values to be obtained and intervention outcomes (namely, prophylaxis) to be measured in Ivoirian boys with haemophilia.


Assuntos
Hemofilia A/psicologia , Hemofilia B/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Adolescente , Criança , Pré-Escolar , Côte d'Ivoire , Comparação Transcultural , Humanos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Pais/psicologia , Reprodutibilidade dos Testes , Traduções
11.
Rural Remote Health ; 19(1): 4833, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30889961

RESUMO

INTRODUCTION: Physical activity is one way to ameliorate the disproportionately high obesity rates among Indigenous children yet little is known about the determinants of physical activity in First Nation communities. METHODS: A socioecological approach was used to explore the determinants that influence physical activity among Indigenous children in six First Nation communities in north-eastern Ontario, Canada. A thematic analysis of eight focus groups with 33 caregivers of Indigenous children was conducted. RESULTS: Caregivers reported that the present patterns of physical activity among children are different from previous generations, who were physically active through walking, outside play and physically demanding chores. Changes in lifestyles, influenced by the consequences of colonization, have resulted in reduced physical activity. Three themes emerged as present day impediments to physical activity: recreational technology, caregivers' safety concerns, and barriers to community activation. CONCLUSION: There is a dynamic interrelationship among the proximal, intermediate and distal determinants of children's physical activity with colonial policies continuing to have impacts in the participating First Nation communities. Community generated research and strategies are important ways to ameliorate physical inactivity and obesity among First Nation children.


Assuntos
Cuidadores/psicologia , Exercício Físico , Indígenas Norte-Americanos , Adolescente , Criança , Serviços de Proteção Infantil , Pesquisa Participativa Baseada na Comunidade , Feminino , Grupos Focais , Humanos , Estilo de Vida , Masculino , Ontário , População Rural , Segurança , Tempo de Tela , Meio Social , Fatores Socioeconômicos , Transtornos Relacionados ao Uso de Substâncias/etnologia , Violência/etnologia
12.
Appl Nurs Res ; 42: 89-97, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-30029720

RESUMO

BACKGROUND: Hospitalized children continue to experience inadequate pain management. Children in the rural hospital setting may be at risk due to unique challenges experienced by Registered Nurses (RNs) in this context. OBJECTIVES: To understand the experience of pain care from RNs who work in rural hospitals with inpatient pediatric patients. DESIGN: Qualitative description that used semi-structured interviews to explore RNs' inpatient pediatric pain care experiences. PARTICIPANTS: RNs who: 1) worked directly with pediatric in-patients; 2) spoke English; 3) and who worked in rural Northern Ontario. Hospital sites were selected based on population density, from one province in Canada. To reduce heterogeneity, only sites with dedicated pediatric beds were eligible (n = 9). METHODS: This qualitative descriptive study used semi-structured interviews over Skype and telephone. Data were analyzed using inductive content analysis. RESULTS: Ten participants were recruited from seven sites. Five main categories were identified, with one category that influenced all other categories. Rural RNs needed to practice as generalists as they care for many types of patients. Resource challenges included a lack of specialist expertise and educational opportunities. Pediatric pain was not perceived as a priority within their organizations. Most participants perceived there were no explicit standards for pain care. Moving forward the adoption of built in assessments in electronic documentation was suggested as a solution to standard pain care. CONCLUSIONS: Opportunity exists to improve pediatric pain management, however, without a systematic approach that considers the rural context, pain care for children will continue to be based on individual's beliefs and knowledge.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Hospitais Rurais/estatística & dados numéricos , Pacientes Internados/psicologia , Enfermeiros Pediátricos/psicologia , Manejo da Dor/métodos , Dor/enfermagem , Enfermagem Pediátrica/métodos , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Ontário , Pesquisa Qualitativa , Adulto Jovem
13.
Rural Remote Health ; 17(2): 3941, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28376629

RESUMO

INTRODUCTION: Aboriginal children in Canada experience significant disparities in health in comparison to their mainstream peers. As Aboriginal communities and agencies strive to improve health, it is important to measure the impact of new programs and services. Since many Aboriginal children live in rural and remote communities, it is important that communities have access to measurement tools that are relevant and feasible to implement in these contexts. The Aboriginal Children's Health and Well-being Measure (ACHWM) was developed to meet the need for a culturally relevant measure of health and wellbeing for Aboriginal children (ages 8-18 years) in Canada. It was developed within one First Nation community: the Wiikwemkoong Unceded Territory. The intention from inception was to ensure the feasibility and relevance of the ACHWM to other Aboriginal communities. The purpose of this article is to describe the relevance of the ACHWM beyond Wiikwemkoong. METHODS: This article presents the results of a community-based and collaborative research study that was jointly led by an academic researcher and a First Nations Health leader. The research began with the 58-question version of the ACHWM developed in Wiikwemkoong. The ACHWM was then submitted to a well-established process of community review in four new communities (in sequence): Weechi-it-te-win Family Services, M'Chigeeng First Nation, Whitefish River First Nation, and the Ottawa Inuit Children's Centre (OICC). The review process included an initial review by local experts, followed by a detailed review with children and caregivers through a detailed cognitive debriefing process. Each community/agency identified changes necessary to ensure appropriate fit in their community. The results from all communities were then aggregated and analysed to determine the similarities and differences. RESULTS: This research was conducted in 2014 and 2015 at four sites. Interviews with 23 children and 21 caregivers were completed. Key lessons were learned in all communities that enabled the team to improve the ACHWM in subtle but important ways. A total of 12 questions were revised, and four new questions were added during the process. This produced a 62-question version of the ACHWM, which was endorsed by all communities. CONCLUSIONS: The ACHWM has been improved through a detailed review process in four additional communities/agencies and resulted in a stable 62-question version of the survey. This process has demonstrated the relevance of the ACHWM to a variety of Aboriginal communities. This survey provides Aboriginal communities with a culturally appropriate tool to assess and track their children's health outcomes, enabling them to gather new evidence of child health needs and the effectiveness of programs in the future.


Assuntos
Saúde da Criança/etnologia , Indígenas Norte-Americanos , Inuíte , Inquéritos e Questionários/normas , Adolescente , Canadá , Criança , Competência Cultural , Coleta de Dados/métodos , Coleta de Dados/normas , Feminino , Disparidades nos Níveis de Saúde , Humanos , Masculino , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida , População Rural
14.
J Esthet Restor Dent ; 28(3): 190-6, 2016 May.
Artigo em Inglês | MEDLINE | ID: mdl-26936612

RESUMO

UNLABELLED: Objective Peripheral enamel staining is often noticed after removal of long-term veneer or crown provisional restorations. Application of carbamide peroxide (CP) easily removes the stain, but the potential for immediate bonding with a resin-based cement is questionable. This project tested the short-term, shear bond strength of a commercial, photo-curable, resin cement to bovine enamel after application of a 10% concentration of CP placed for different exposure times. MATERIALS AND METHODS: Bovine enamel was flattened and polished. Surfaces had either no CP application (control), or 10% CP applied for 10, 20, or 30 seconds. Teeth were acid-etched, rinsed, dried, and controlled sized stubs of a commercial resin cement were photocured onto the treated surfaces. The shear bond strength of each specimen was determined using a universal testing machine, and results were compared using an analysis of variance at a preset alpha of 0.5 (n = 10/group). RESULTS: No significant differences (p = 0.819) in shear bond strength were found among any CP cleaning treatments or the experimental (nontreated) control. CONCLUSIONS: Short-term application of 10% carbamide peroxide prior to acid etching, to remove enamel stains in teeth prepared to receive ceramic veneers or crowns, does not reduce immediate shear bond strength of resin-based cement to enamel. CLINICAL SIGNIFICANCE: Clinicians can confidently apply 10% CP for short-term, localized stain removal on enamel and not be concerned about affecting subsequent bond strength of a resin-based cement to enamel. (J Esthet Restor Dent, 2016).


Assuntos
Esmalte Dentário , Peróxidos/administração & dosagem , Cimentos de Resina , Ureia/análogos & derivados , Animais , Peróxido de Carbamida , Bovinos , Ureia/administração & dosagem
15.
Health Qual Life Outcomes ; 13: 105, 2015 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-26197841

RESUMO

BACKGROUND: There are emerging opportunities to improve the health of Aboriginal children and youth. The Aboriginal Children's Health and Well-being Measure (ACHWM) was developed to enable Aboriginal communities to obtain group-level data from the perspectives of their children 8 to 18 years of age. The survey was developed in collaboration with children, based on the Medicine Wheel framework. The purpose of this study was to ensure that children and youth interpreted the ACHWM questions consistently and accurately and to establish the face validity of the survey. METHODS: Children and parents/caregivers from the Wikwemikong Unceded Indian Reserve (Canada) participated in a detailed interview process as they completed the ACHWM, in 2012. Each participant worked through their thought process verbally, to enable the interviewer to identify questions that were misinterpreted or inconsistently interpreted. Questions were revised based on feedback from the participants, and reviewed with new participants until a stable version was established. The resulting version was reviewed by health care providers and community members to further ensure cultural relevance and face validity within the community. RESULTS: A total of 18 interviews, with 9 children and 9 caregivers, were required to achieve a stable version of the survey. The children ranged in age from 8 to 18 years. Revisions were required for 19 questions. Most of these revisions were minor linguistic changes. In addition, 6 questions were deleted due to consistent problems and 4 questions were created to address gaps identified during the process. Community members confirmed the appropriateness of the measure for their community and communicated their pride in their youth's role in the development of this survey. CONCLUSIONS: The result was a 58-question version of the ACHWM that was consistently interpreted and culturally appropriate, and had face validity confirmed by experts from the community, children and their parents/caregivers. The ACHWM is ready to be assessed for relevance to other Aboriginal communities.


Assuntos
Saúde da Criança/etnologia , Proteção da Criança/etnologia , Compreensão , Inquéritos Epidemiológicos/normas , Indígenas Norte-Americanos/psicologia , Qualidade de Vida , Adolescente , Canadá , Criança , Proteção da Criança/psicologia , Feminino , Humanos , Masculino
16.
Health Qual Life Outcomes ; 13: 148, 2015 Sep 17.
Artigo em Inglês | MEDLINE | ID: mdl-26381126

RESUMO

BACKGROUND: Aboriginal children experience challenges to their health and well-being, yet also have unique strengths. It has been difficult to accurately assess their health outcomes due to the lack of culturally relevant measures. The Aboriginal Children's Health and Well-Being Measure (ACHWM) was developed to address this gap. This paper describes the validity of the new measure. METHODS: We recruited First Nations children from one First Nation reserve in Canada. Participants were asked to complete the ACHWM independently using a computer tablet. Participants also completed the PedsQL. The ACHWM total score and 4 Quadrant scores were expected to have a moderate correlation of between 0.4 and 0.6 with the parallel PedsQL total score, domains (scale scores), and summary scores. RESULTS: Paired ACHWM and PedsQL scores were available for 48 participants. They had a mean age of 14.6 (range of 7 to 19) years and 60.4 % were girls. The Pearson's correlation between the total ACHWM score and a total PedsQL aggregate score was 0.52 (p = 0.0001). The correlations with the Physical Health Summary Scores and the Psychosocial Health Summary Scores were slightly lower range (r = 0.35 p = 0.016; and r = 0.51 p = 0.0002 respectively) and approached the expected range. The ACHWM Quadrant scores were moderately correlated with the parallel PedsQL domains ranging from r = 0.45 to r = 0.64 (p ≤ 0.001). The Spiritual Quadrant of the ACHWM did not have a parallel domain in the PedsQL. CONCLUSIONS: These results establish the validity of the ACHWM. The children gave this measure an Ojibway name, Aaniish Naa Gegii, meaning "how are you?". This measure is now ready for implementation, and will contribute to a better understanding of the health of Aboriginal children.


Assuntos
Saúde da Criança/etnologia , Proteção da Criança/etnologia , Inquéritos Epidemiológicos/normas , Indígenas Norte-Americanos/psicologia , Qualidade de Vida/psicologia , Adolescente , Canadá , Criança , Proteção da Criança/psicologia , Pré-Escolar , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes
17.
Child Welfare ; 94(4): 205-32, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26827483

RESUMO

This is a descriptive study of the Children Affected by Methamphetamine (CAM) grant program, a federally funded effort to improve outcomes through the addition of targeted interventions for 1,940 families, including 2,596 adults and 4,245 children involved in 12 diverse Family Treatment Drug Courts (FTDCs) located across six U.S. states. The majority were children of parents with a primary methamphetamine use disorder. Findings reflect grantees' reporting on 18 performance indicators of child safety and permanency, adult recovery, and family well-being. Additional information gleaned from grantees' biannual reports provides insights about program implementation. Results, drawn from this large and complex dataset, indicate that comprehensively addressing families' needs is associated with better outcomes than those experienced by similarly situated families in grantees' communities and the nation overall. In addition to describing common program components and outcomes, this article presents important lessons learned about implementing evidence-based children's services in the FTDC context, as well as future directions for research and evaluation in this arena.


Assuntos
Saúde da Família , Pais , Transtornos Relacionados ao Uso de Substâncias/terapia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Função Jurisdicional , Masculino , Metanfetamina , Pessoa de Meia-Idade , Estados Unidos , Adulto Jovem
18.
Child Welfare ; 94(5): 21-43, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26827463

RESUMO

This study is based on data regarding more than 15,000 families served by 53 federal grantees showing that child safety and permanency, parental recovery, and family well-being improve when agencies work together to address the complex needs of families at the intersection of substance abuse treatment and child welfare. Strategies summarized here offer promising collaborative approaches to mitigate the negative outcomes too often experienced by families impacted by substance use disorders.


Assuntos
Saúde da Família , Pais , Transtornos Relacionados ao Uso de Substâncias/terapia , Adolescente , Adulto , Criança , Proteção da Criança , Pré-Escolar , Comportamento Cooperativo , Necessidades e Demandas de Serviços de Saúde , Humanos , Lactente , Pessoa de Meia-Idade , Resultado do Tratamento , Estados Unidos , Adulto Jovem
19.
Br J Haematol ; 164(3): 431-7, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24180641

RESUMO

This study aimed to demonstrate the validity, reliability and responsiveness of a new disease-specific quality of life (QoL) questionnaire for children and adults with thalassaemia major, the Transfusion-dependent QoL questionnaire (TranQol). 106 participants (51 adults and 55 children) were recruited from six North American thalassaemia treatment centres with a mean age of 20·7 years (standard deviation [SD] 9, range 7-51 years). The mean total TranQol score was 71 (SD 17, 32-97) on a scale of 0-100. Patients with co-morbidities had significantly lower scores (63 vs. 75, P = 0·001). TranQol scores showed substantial agreement (P < 0·001) with the Health Utilities Index Mark 3 (all patients, r = 0·65), the Pediatric QoL (children, r = 0·77) and the Short Form (36) physical (adults, r = 0·69) and mental summary scores (r = 0·76). In the subgroup who rated their QoL as better, there was a 4·0 point (SD 9·0) improvement in TranQol scores, from baseline of 67·1-71·1 one week later (P = 0·008). Test-retest reliability was excellent (intra-class correlation coefficient, 0·93). The TranQol was valid, with acceptable correlation for all administered measures and was reliable and responsive to change. The TranQol can be incorporated into future studies of thalassaemia major.


Assuntos
Talassemia beta/diagnóstico , Talassemia beta/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Inquéritos e Questionários , Adulto Jovem
20.
Radiographics ; 34(5): E133-49, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25208295

RESUMO

Cochlear implantation is the only U.S. Food and Drug Administration-approved treatment for children with marked bilateral sensorineural hearing loss. It provides auditory benefits that range from simple sound detection to substantial word understanding. Improved hearing through cochlear implantation has been demonstrated to enhance the rate of language acquisition, enable development of spoken language, and advance literacy in deaf children. Magnetic resonance imaging and computed tomography both have roles in the preoperative assessment of inner-ear abnormalities, cochlear nerve deficiency, and variant anatomy that may affect the decision to implant and the prognosis for auditory improvement and increase the risk for complications. Most cochlear abnormalities may be successfully treated with cochlear implantation, but the presence of a cochlear malformation may increase the risk for intraoperative cerebrospinal fluid leakage and postoperative bacterial meningitis. Eighth-nerve deficiency correlates with poor auditory outcomes and may affect eligibility for cochlear implantation. Another important consideration for implantation is the presence of labyrinthitis ossificans in some children with deafness resulting from bacterial meningitis, which may cause obstruction that limits electrode insertion. Anatomic variations of the facial nerve or middle-ear cavity, which are more common in syndromic patients, may also affect the surgical approach and make implantation difficult.


Assuntos
Implante Coclear , Perda Auditiva Neurossensorial/cirurgia , Imageamento por Ressonância Magnética , Cuidados Pré-Operatórios , Tomografia Computadorizada por Raios X , Variação Anatômica , Criança , Implantes Cocleares , Orelha/anatomia & histologia , Humanos , Desenho de Prótese
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