Child Care Health and Development最新文献

{"title":"Perceived discrimination and multiple indicators of positive development among second-generation Chinese–American youth: The moderating role of ethnic identity","authors":"Shaobing Su,&nbsp;Ellen Wang,&nbsp;Shaodan Su","doi":"10.1111/cch.13251","DOIUrl":"10.1111/cch.13251","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The present study examined the associations among ethnic identity, perceived discrimination and multiple indicators of positive youth development (PYD; i.e., intrapersonal-oriented competence, interpersonal-oriented competence, confidence, caring, character, family connection, peer connection, school and community connection, positive attitudes towards diversity and cultural pride) that were specifically identified among second-generation Chinese–American youth.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants were 196 second-generation Chinese–American youth (<i>N</i> _girl = 93; <i>M</i> _age = 14.56, <i>SD</i> _age = 1.75) primarily from the greater Boston area in MA, United States. Multivariate regression models were estimated to examine the associations between ethnic identity, perceived discrimination, and each potential indicator of PYD, as well as the moderating role of ethnic identity, controlling for key demographics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>(1) Ethnic identity was positively related to all PYD indicators, <i>β</i>s = .32 to .72, <i>p</i>s &lt; .01; (2) perceived discrimination was negatively associated with all indicators of PYD (<i>β</i>s = −.15 to −.32, <i>p</i>s &lt; .05), except for interpersonal-oriented competence and caring; and (3) ethnic identity significantly moderated the relationship between perceived discrimination and family connection (<i>β</i> = .23, <i>p</i> &lt; .01).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Findings indicate that whereas discrimination has potential negative effects on the positive development of second-generation Chinese–American youth, ethnic identity may be a key strength that should be considered in PYD promotion practices for these youth.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140289735","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Family perspectives on provider conversations about housing needs for children with medical complexity","authors":"Brandon M. Smith,&nbsp;Pamela K. Donohue,&nbsp;Rebecca R. Seltzer","doi":"10.1111/cch.13253","DOIUrl":"10.1111/cch.13253","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with medical complexity (CMC) have unique, and often unmet, housing needs that place them at risk for housing insecurity and poor health outcomes. Yet, little is known about how families with CMC discuss their housing needs with healthcare providers. We sought to understand: (1) how housing is currently discussed between CMC caregivers and healthcare providers, and (2) how CMC caregivers want such conversations to occur.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>From August to November 2020, we conducted semi-structured interviews with parents/guardians of CMC (&lt;26 years old) in Maryland as part of a larger study to understand their housing experience. Four questions on communication with providers about housing were developed a priori and included in this analysis. Qualitative content analysis was applied to interview transcripts.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Among 31 completed interviews, most participants were female (90%), lived in single-family homes (68%) and were from a mix of neighbourhood types (urban 19%, suburban 58%, rural 22%). Their children ranged in age from 6 months to 22 years, had a mix of insurance types (public 65%, private 29%, both 6%) and nearly all required medical equipment or technology. Four themes emerged: (1) Current housing conversations are rare and superficial, (2) Ideal housing conversations would result in thoughtful care plans and concrete supports, (3) Frequency and initiation of housing conversations are best tailored to family preferences and (4) Value of housing conversations are limited by lack of provider knowledge and time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Conversations about housing needs for CMC happen in limited ways with healthcare providers, despite a desire on the part of their caregivers. Such conversations can give meaningful insights into the family's specific housing challenges, allowing providers to appropriately tailor care plans and referrals. Future work is needed to capture provider perspectives, design CMC-specific housing screeners and develop interdisciplinary referral strategies.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140289733","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Increased risk of complications in lower versus upper limb peripheral intravenous cannulation in children with severe neurological impairment","authors":"Eliza Kluckow,&nbsp;Sajini Perera,&nbsp;Isaac Clifford,&nbsp;Daniel Wilks,&nbsp;Monica S. Cooper","doi":"10.1111/cch.13250","DOIUrl":"10.1111/cch.13250","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Obtaining peripheral intravenous catheter (PIVC) access in children with severe neurological impairment (SNI) is often challenging and commonly associated with complications, including dislodgement, phlebitis and extravasation. In severe cases, extravasation injury may lead to tissue necrosis, ulceration and long-term morbidity. The aim of this study was to determine the relative incidence of PIVC complications secondary to lower limb cannulation, compared to upper limb, in children with SNI.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A single centre, retrospective, observational review was conducted. Patients with SNI, admitted at a tertiary paediatric centre over 6 months between July and December 2022, were included.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>One-hundred fifty-five PIVC procedures were conducted in 110 children over the study period. Complications were more common in lower limb PIVCs (12/16, 75%) compared to upper limb (58/139, 42%), <i>p</i> = 0.01.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Upper limb cannulation is preferred in children with SNI.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/cch.13250","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140289734","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A systematic review of the efficacy of group social skills interventions on social functioning and social participation in children with acquired brain injury or cerebral palsy","authors":"Bianca A. D. Thompson,&nbsp;Rose Gilmore,&nbsp;Jacqui Barfoot,&nbsp;Leanne Sakzewski","doi":"10.1111/cch.13242","DOIUrl":"10.1111/cch.13242","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>The aim of this study was to evaluate the efficacy of Group social skills interventions (GSSIs) versus any comparator on social functioning in children aged 5–12 years with acquired brain injury or cerebral palsy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>GSSIs are an evidence-based approach to foster social skills development in children with autism spectrum disorder. Currently, limited literature exploring GSSIs in children with acquired brain injury and cerebral palsy is available.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>MEDLINE, SCOPUS, Embase, CINAHL, Cochrane Library, PsycINFO, clinicaltrials.gov, ICTRP and ProQuest Dissertations and Theses were systematically searched. Study screening, risk-of-bias, Grading of Recommendations Assessment, Development and Evaluation and data extraction were performed in duplicate. Six studies were included in the narrative synthesis (one randomised controlled trial and five nonrandomised studies). Results indicate that GSSIs may increase children's social skills as measured on the Social Skills Rating System and Social Skills Questionnaire. Very low certainty evidence was found for improvements in social functioning and competence.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There is low certainty evidence that participation in GSSI may lead to gains in social functioning for children with acquired brain injury or cerebral palsy. Given the certainty of the evidence, these results must be interpreted with caution. Only one randomised controlled trial of GSSIs for children with acquired brain injury was identified, underscoring the need for additional high-quality studies.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/cch.13242","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140289732","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How can we reach long-lasting inclusive participation for all? A vision for the future","authors":"Anna Ullenhag,&nbsp;Christine Imms,&nbsp;Dana Anaby,&nbsp;Jessica M. Kramer,&nbsp;Sonya Girdler,&nbsp;Jan Willem Gorter,&nbsp;Marjolijn Ketelaar,&nbsp;Reidun Birgitta Jahnsen,&nbsp;Catherine Elliott,&nbsp;Mats Granlund","doi":"10.1111/cch.13249","DOIUrl":"10.1111/cch.13249","url":null,"abstract":"<p>In 2022, an international conference was held focusing on ‘participation’. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.</p>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/cch.13249","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140208262","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Physical health conditions in young children with profound intellectual and multiple disabilities: The prevalence and associations between these conditions","authors":"Anouk Mol-Bakker,&nbsp;Annette A. J. Van der Putten,&nbsp;Wim P. Krijnen,&nbsp;Aly Waninge","doi":"10.1111/cch.13252","DOIUrl":"https://doi.org/10.1111/cch.13252","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>It is thought that physical health conditions start at a young age in people with profound intellectual and multiple disabilities (PIMD). Knowledge regarding the prevalence, associations and development of these physical health conditions could be used for purposes of prevention as well as appropriate care and support but is currently lacking.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>The aim of this study is to gain insight into the prevalence of physical health conditions and associations between these conditions in young children with PIMD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study used cross-sectional data related to the physical health conditions of children with PIMD (<i>n</i> = 51, aged between 12 and 61 months). Data were collected in Belgium and in the Netherlands through a checklist filled in by primary caregiver(s). Physical health conditions were classified into categories by the 10th revision of the International Classification of Diseases and Related Health Problems (ICD-10) system. The number of physical health conditions and associations between them were analysed. The analysis focused on prevalence rates and associations represented by odds ratios (<i>p</i> &lt; 0.05). A graphical model was estimated to represent dependencies and conditional dependencies between physical health conditions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We found a mean of 3.8 (range 1–8, SD 1.9) physical health conditions per child. Most of the physical health conditions were found in the ICD-10 chapter ‘Nervous System’, with hypotonia as the most frequent at 70.6%. Five significant large associations were found between spasticity–contractures (OR 9.54); circulatory system–contractures (OR 7.50); scoliosis–contractures (OR 10.25); hearing impairments–skin problems (OR 58.20) and obstipation–hypotonia (OR 19.98).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This study shows that at a young age, multiple physical health conditions are present in children with PIMD. In addition, we found five associations between physical health conditions.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/cch.13252","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140192336","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"“From All, To All”: Implementing a collaborative online conference to reflect on the daily living of individuals with cerebral palsy","authors":"Beatriz S. Vieira,&nbsp;Marina J. Airoldi,&nbsp;Deborah Chalfun,&nbsp;Rafael G. A. S. Bonfim,&nbsp;Rachel Teplicky,&nbsp;Peter Rosenbaum,&nbsp;Marisa C. Mancini,&nbsp;Marina B. Brandão","doi":"10.1111/cch.13254","DOIUrl":"10.1111/cch.13254","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Translating knowledge to improve paediatric rehabilitation has become a research area of interest. This study describes the development and evaluation of an online conference that brought together perspectives of individuals with cerebral palsy (CP), families, health care professionals, and researchers to discuss the daily living of individuals with CP.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We anchored the development and implementation of the online conference in the action cycle of the Knowledge to Action Framework. To develop the meeting, we included representatives from each stakeholder group in the programme committee. The conference programme was designed having the lifespan perspective of individuals with CP, from birth to adulthood, as its central core, with themes related to daily living (e.g., self-care, mobility, and continuing education). Participants' satisfaction with the conference was assessed using an anonymized online survey sent to all participants.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The conference had 1656 attendees, of whom 675 answered the online satisfaction survey. Most participants rated the structure of the conference (i.e., quality of the technical support, audio and video, and online platform) and discussed topics (i.e., relevance, content, discussion, speakers, and available time) positively.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Collaborative conferences that include stakeholders throughout the planning and implementation are a viable, effective knowledge translation strategy that allows for sharing experiences and disseminating knowledge among families and individuals with CP, health care professionals, and researchers.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140186383","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Child and adolescent participation measurement tools and their translations: A systematic review","authors":"Yunwha Jeong,&nbsp;Sujin Kim,&nbsp;Ji-A Lee,&nbsp;Hyunkyung Kim","doi":"10.1111/cch.13248","DOIUrl":"10.1111/cch.13248","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Numerous participation measurement tools targeting children and youth have been developed. Despite the translation of these tools into specific languages and cultures, the reliability and validity of the translated versions remain uncertain. To address this gap in knowledge, this study aims to identify tools for assessing the participation of children aged 5–18 years and to appraise the psychometric properties of their translated versions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Four electronic databases were searched for peer-reviewed studies published in English. Preferred Reporting Items for Systematic Reviews guidelines was followed. Study titles and abstracts were screened by four independent reviewers. Data were extracted for both original and translated versions of eligible tools. Instrument quality assessments were performed using the Outcome Measures Rating Form Guidelines. Any discrepancies were resolved by consensus.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Out of the 31 measurement tools examined, 18 tools had at least one translated version available, and among those original measurement tools, a total of 58 translated versions were identified. The most widely translated tool was the Physical Activity Questionnaire for Children (12 languages), and the most frequently translated language was Chinese (7 tools). Most translated versions verified internal consistency and content validity. Only three translated versions were verified inter-rater reliability, and seven translated versions were tested criterion validity with the gold standard tools assessing participation of children (e.g., accelerometer, Pediatric Evaluation of Disability Inventory and four 24-h recalls). None of the translated versions were tested for intra-rater reliability and responsiveness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These findings can support the selection of psychometrically sound tools for children with disabilities, given their culture and language, and tool quality.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144730","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Low and very low birthweight disadvantage in compulsory education achievement and the transition to upper secondary education in the Finnish birth cohorts of 1987 to 1997","authors":"Matti Lindberg","doi":"10.1111/cch.13243","DOIUrl":"10.1111/cch.13243","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>We compared the educational achievements of very low-birthweight (VLBW) and low-birthweight (LBW) adolescents (ages 16 to 19) to those of their normal-birthweight (NBW) peers in the complete Finnish birth cohorts of 1987 to 1997. We focused on three key phases of the education process: the end of compulsory education (9th-grade completion), and the transition to and the completion of upper secondary-level education.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We used register data on grades, educational transitions and completed education. We employed multiple indicators on the progression of the education process and estimated population-level and within-families linear probability (LPM) models with robustness checks at the population level using logistic regression. We tested whether parental education and the child's sex modify the association between (V)LBW and educational achievement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Results of both descriptive analysis and the population-level and within-family LPM models indicate that (V)LBW is associated with an increased risk of not being able to keep up with the normative education process and to compete for upper secondary education study places at the end of compulsory education. The modifying effect of parental education was robust, whereas that of the child's sex was not. Among (V)LBW students who were able to keep up with the normative education process, (V)LBW was not associated with a lower grade point average or with a meaningfully lower probability of completing upper secondary education by the normative age.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The upper secondary-level educational choices and achievements of the children born with (V)LBW who managed to complete the standard compulsory education curriculum and complete the transition to upper secondary-level education within the expected time did not, in essence, differ from those of the NBW children. Some specific characteristics of the Finnish education system likely contributed to these results, such as the grading at compulsory education being only relatively loosely standardized.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/cch.13243","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140133288","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Quality of life of families and siblings of children and adolescents with meningomyelocele","authors":"Bruno Leonardo Scofano Dias,&nbsp;Maura Calixto Cecherelli de Rodrigues,&nbsp;José Luiz Muniz Bandeira Duarte","doi":"10.1111/cch.13246","DOIUrl":"10.1111/cch.13246","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55262,"journal":{"name":"Child Care Health and Development","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140121466","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}