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1.
Longit Life Course Stud ; 15(3): 348-370, 2024 May 13.
Artigo em Inglês | MEDLINE | ID: mdl-38954424

RESUMO

While a vast number of studies confirm the transmission of labour-market disadvantages from one generation to the next, less is known about how parents' interconnected labour-market pathways co-evolve and shape the opportunities and obstacles for their children's future careers. This study uses a multidimensional view of intergenerational transmission by describing the most typical pathways of parents' occupational careers and assesses how these patterns are associated with their children's labour-market outcomes. Drawing on Swedish longitudinal register data, we used multichannel sequence analysis to follow a cohort of people born in 1985 (n = 72,409) and their parents across 26 years. We identified four parental earning models, differentiating between (1) dual earners with high wages, (2) dual earners with low-wage, (3) one-and-a-half-earners and (4) mother as the main breadwinner. Regression analysis shows strong intergenerational transmission among the most advantageous trajectories, with education as a key determinant for young people to become less dependent on family resources. This study stresses the importance of intra-couple perspectives in life course research to understand how inequalities are shaped and preserved across generations.


Assuntos
Relação entre Gerações , Humanos , Feminino , Suécia/epidemiologia , Masculino , Estudos Longitudinais , Adulto , Pais/psicologia , Emprego , Criança , Fatores Socioeconômicos , Adolescente , Relações Pais-Filho , Adulto Jovem
2.
Ethiop J Health Sci ; 34(1): 65-72, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38957342

RESUMO

Background: Children with disability have a risk of poor dental health because of their mental and physical limitations. They depend on caregivers in their daily life Parents have an important role in maintaining children's dental health. Parents attitudes can be influenced by parents' perceptions of children's dental health. This study explored parental perceptions regarding the dental and oral health of children with special needs in Bandung City. Methods: This study utilized a descriptive observational research using a cross-sectional survey. The subjects in this study were 239 parents who had children aged 0-18 years who were taken from 9 special schools. The variables of this study were parents' perceptions and the dental and oral health status of children with disability. Primary data were obtained through a validated questionnaire. Results: Parents' perceptions of the dental and oral health of children with disability consists of 84.94% good enough perceptions, 12.13% good perceptions, and 2.93% bad perceptions. Conclusion: Most parents have a fairly good perception of the dental and oral health of children with special needs.


Assuntos
Crianças com Deficiência , Saúde Bucal , Pais , Humanos , Pais/psicologia , Criança , Feminino , Masculino , Pré-Escolar , Estudos Transversais , Crianças com Deficiência/psicologia , Adolescente , Lactente , Inquéritos e Questionários , Adulto , Conhecimentos, Atitudes e Prática em Saúde , Recém-Nascido , Percepção
3.
Sci Rep ; 14(1): 15055, 2024 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-38956291

RESUMO

The prenatal diagnosis of fetal heart disease potentially influences parental decision-making regarding pregnancy termination. Existing literature indicates that the severity, whether in complexity or lethality, significantly influences parental decisions concerning abortion. However, questions remain as to how fetal heart disease severity impacts parental decisions, given recent advancements in postsurgical outcomes. Therefore, we investigated risk factors associated with parents' decision-making regarding abortion following a prenatal diagnosis of fetal heart disease. Our analysis included 73 (terminated: n = 37; continued: n = 36) pregnancies with a fetal heart disease diagnosed before 22 weeks of gestation. Increased gestational age at diagnosis reduced the likelihood of parents' decision on termination (Model 1: adjusted odds ratio, 0.94; 95% confidence interval 0.89-0.99; Model 2: 0.95 0.90-0.997). Critical disease (5.25; 1.09-25.19) and concurrent extracardiac or genetic abnormalities (Model 1: 4.19, 1.21-14.53; Model 2: 5.47, 1.50-19.96) increased the likelihood of choosing abortion. Notably, complex disease did not significantly influence parental decisions (0.56; 0.14-2.20). These results suggest that parental decision-making regarding abortion may be influenced by earlier gestational age at diagnosis, the lethality of heart disease, and extracardiac or genetic abnormalities, but not its complexity if prenatal diagnosis and parental counseling are provided at a cardiovascular-specialized facility.


Assuntos
Aborto Induzido , Tomada de Decisões , Pais , Diagnóstico Pré-Natal , Humanos , Feminino , Gravidez , Aborto Induzido/psicologia , Adulto , Pais/psicologia , Idade Gestacional , Cardiopatias Congênitas , Cardiopatias , Fatores de Risco , Doenças Fetais , Masculino , Índice de Gravidade de Doença
4.
BMC Pediatr ; 24(1): 419, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38956491

RESUMO

BACKGROUND: Children who witness parental intimate partner violence (IPV) are more likely to develop mental health issues compared to those who do not witness such violence. OBJECTIVE: The main objective of this study is to assess the association between parental intimate partner violence and child mental health outcomes. METHODOLOGY: This cross-sectional study involved 548 participants divided into two groups: parents (N = 304) and offspring (N = 244). The participants were recruited from Mageragere Sector in the City of Kigali (urban), as well as Mbazi and Ruhashya sectors in Huye District (rural). To assess the difference about mental difficulties reported by the offspring, a Mann-Whitney U test was employed to compare the responses of parents and their children on mental health outcomes. Additionally, multiple linear regression analysis was conducted to explore the association between parental intimate partner violence (IPV) and the mental health outcomes of their offspring. RESULTS: The results highlighted significant levels of mental and emotional challenges in children, as reported by both parents and the children themselves. Depression and youth conduct problems were more prevalent among the children compared to their parents, whereas anxiety and irritability were more commonly reported by parents than by their children. Intimate partner violence showed to be a predictor of irritability and anxiety symptoms in offspring. In terms of irritability, depression, and youth conduct problems they were identified as predictors of anxiety symptoms. Particularly, anxiety and irritability were revealed to predict youth conduct problems. CONCLUSION: The study indicates that parental intimate partner violence (IPV) has an impact on the mental well-being of their offspring. Furthermore, it was observed that there is not only a correlation between IPV and poor mental health outcomes, but also a connection between different mental conditions, implying that children exposed to IPV are more prone to experiencing a range of mental issues. As a result, intervention programs should place emphasis on addressing the mental disorders of both parents and children.


Assuntos
Violência por Parceiro Íntimo , Humanos , Feminino , Estudos Transversais , Masculino , Violência por Parceiro Íntimo/psicologia , Violência por Parceiro Íntimo/estatística & dados numéricos , Criança , Ruanda/epidemiologia , Adulto , Adolescente , Saúde Mental , Transtornos Mentais/epidemiologia , Transtornos Mentais/etiologia , Depressão/epidemiologia , Depressão/etiologia , Ansiedade/epidemiologia , Ansiedade/etiologia , Pais/psicologia
5.
BMC Pediatr ; 24(1): 421, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38956539

RESUMO

INTRODUCTION: The stay of a critically ill child in a pediatric intensive care unit (PICU) is a significant experience for the family. Thus far, little is known regarding the impact of this stay on parents and their healthy children for whom no continuous aftercare services are offered. This study aimed to capture the post-stay experience and needs of parents after this traumatic event so that they could return to family and everyday life. METHODS: This qualitative descriptive study was conducted in collaboration with four pediatric intensive care units in Switzerland. It included parents whose children had fully recovered after a stay and who did not require continuous medical follow-up. All children were hospitalized in the PICU for at least 48 h. Data were collected through narrative pairs (n = 6) and individual interviews (n = 8). Interviews were audio recorded, transcribed, coded inductively according to Saldaña, and analyzed. RESULTS: The results showed three related phases that influence each other to restore normality in daily life: Trust and inclusion in the treatment process during the stay (1), processing after the stay (2), and returning to everyday life (3). CONCLUSION: Follow-up meetings should be available to all parents whose children have been hospitalized in the PICU. In particular, it should also be available to parents whose children have fully recovered and no longer have any medical disabilities.


Assuntos
Unidades de Terapia Intensiva Pediátrica , Pais , Pesquisa Qualitativa , Humanos , Pais/psicologia , Masculino , Feminino , Criança , Pré-Escolar , Estado Terminal/psicologia , Suíça , Adulto , Lactente , Criança Hospitalizada/psicologia , Entrevistas como Assunto , Adolescente
6.
BMC Public Health ; 24(1): 1775, 2024 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-38961448

RESUMO

BACKGROUND: Being subjected to bullying is a significant risk factor for non-suicidal self-injury (NSSI) among adolescents. Parental support, peer support, and social connectedness play protective roles in mitigating NSSI in this population. However, the precise impact of the combined effects of parental and peer support on bullying and NSSI requires further investigation. METHODS: This study employed the Child and Adolescent Social Support Scale, Delaware Bullying Victimisation Scale, Social Connectedness Scale, and the Ottawa Self-Injury Inventory to survey 1277 Chinese adolescents. Polynomial regression analysis and response surface analysis were applied to examine the mediating role of bullying and social connectedness in the relationship between parental and peer support matching and NSSI. RESULTS: The results indicate that parental support (r = 0.287, P < 0.001), peer support (r = 0.288, P < 0.001), and social connectedness (r = 0.401, P < 0.001) were protective factors against NSSI in adolescents. Conversely, bullying (r = 0.425, P < 0.001) acts as a risk factor for NSSI in this population. Adolescents with low parental and peer support experienced more bullying than those with high parental and peer support, while those with low parental but high peer support experienced less bullying than those with high parental but low peer support (R^2 = 0.1371, P < 0.001). Social connectedness moderated the effect between bullying and NSSI in this model (ß = 0.006, P < 0.001). LIMITATIONS: Due to the under-representation of participants and lack of longitudinal data support, the explanatory power of causality between variables was limited. Future studies should include national samples and incorporate longitudinal studies to enhance the generalisability and robustness of the findings. CONCLUSION: This study reveals the influence mechanism of parental and peer support matching experienced by adolescents on bullying and NSSI and the moderating role of social connectedness. These findings enrich the developmental theory of adolescent NSSI and provide reference for the prevention and intervention of adolescent NSSI behaviour.


Assuntos
Bullying , Grupo Associado , Comportamento Autodestrutivo , Apoio Social , Humanos , Bullying/psicologia , Bullying/estatística & dados numéricos , Adolescente , Masculino , Feminino , China , Comportamento Autodestrutivo/psicologia , Relações Pais-Filho , Fatores de Risco , Comportamento do Adolescente/psicologia , Inquéritos e Questionários , Criança , Pais/psicologia
7.
Sci Rep ; 14(1): 15374, 2024 07 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965338

RESUMO

This study aimed to compare parental satisfaction between two pediatric dental anesthesia techniques, computerized intraosseous anesthesia (CIA) and inferior alveolar nerve block (IANB). This study was designed as a split-mouth randomized controlled clinical trial. A total of 52 parents of children undergoing dental treatment were enrolled in the study. Each participant received both CIA and IANB anesthesia, with the order of administration randomized. Parental satisfaction was evaluated using the parental satisfaction of dental local anesthetic techniques scale (PSLAS). Statistical analysis revealed that parental satisfaction regarding CIA was higher than that for IANB with a significant difference (P ˂ 0.05). However, there was no difference regarding the age, gender or the education level of the parents. (P > 0.05). This study provides insights into parental satisfaction with pediatric dental anesthesia techniques and highlights the influence of socioeconomic factors on anesthesia decision-making. Within the limitations of this trial, it was concluded that CIA was significantly superior to IANB in overall parental satisfaction. However, parental satisfaction values were lower in CIA group regarding costs and concern from complications. In addition, it was concluded that there was no difference in satisfaction levels regarding the gender, age and education level of the parents.


Assuntos
Anestesia Dentária , Nervo Mandibular , Bloqueio Nervoso , Pais , Humanos , Masculino , Feminino , Bloqueio Nervoso/métodos , Pais/psicologia , Criança , Anestesia Dentária/métodos , Pré-Escolar , Adulto , Satisfação Pessoal
8.
BMC Public Health ; 24(1): 1782, 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965545

RESUMO

BACKGROUND: Reports of children's engagement in active transportation outline low participation rates in many countries despite many associated mental, physical, and social health benefits. One of the main contributors to this phenomenon is a cited lack of education and knowledge among children regarding active travel (AT), specifically road safety. To address this issue, the aim of this study was to evaluate the feasibility and effectiveness of an online road safety education intervention to promote AT among children and their parents. METHODS: Applying the Multiphase Optimization Strategy (MOST) for intervention development, implementation, and evaluation, we designed and assessed a four-module online road safety education intervention with a sample of 57 parent-child dyads using a 23 factorial design featuring both qualitative and quantitative analyses. RESULTS: Main intervention feasibility findings include positive and critical feedback on the program's content and design, and moderate participant engagement as reflected by program retention and completion rates. With respect to the preliminary intervention effectiveness on children, a significant improvement in road safety knowledge scores was observed for groups that feature the "wheeling safety and skills" module. Slight improvements in AT knowledge scores across all the intervention groups were observed, but were not of significance. Preliminary intervention effectiveness on select parental AT practices and perceptions saw significant improvements in some groups. Groups that featured the 'wheeling safety and skills' module exhibited significantly higher guided choice scores upon completion of the program than those who did not receive this component. CONCLUSION: The MOST framework allowed us to design and evaluate the feasibility and preliminary effectiveness of an online road safety education intervention. The developed intervention has demonstrated that it has the potential to improve children's road safety knowledge and some areas of parental AT practices and perceptions, to which improvements may be attributed to the inclusion of the "wheeling safety and skills" module, suggesting that the targeted focus on cycling skills is a prioritized area. AT programming and practice implications are discussed. Future research is encouraged to refine modules to better reflect the priorities of children and parents and to test these refined components among larger samples. WORD COUNT: 9,391 (excludes abstract, tables, figures, abbreviations, and references).


Assuntos
Estudos de Viabilidade , Pais , Segurança , Humanos , Projetos Piloto , Criança , Masculino , Feminino , Pais/educação , Pais/psicologia , Adulto , Avaliação de Programas e Projetos de Saúde , Acidentes de Trânsito/prevenção & controle , Educação em Saúde/métodos , Condução de Veículo/educação , Adolescente
9.
Medicine (Baltimore) ; 103(27): e38734, 2024 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-38968528

RESUMO

Cancer is a common health problem worldwide. Early cancer education for adolescents and young adults (AYAs) is important for the prevention or early detection of cancer. In this questionnaire-based cross-sectional study, we examined the cancer awareness among parents of AYAs. Japanese adults with junior or senior high school children were included in this study. The cancer awareness measure (CAM) was used to assess cancer awareness, and the survey was conducted in December 2021. Warning signs, barriers to seeking help, and risk factors were surveyed using an online anonymous questionnaire. In addition, personal information, the presence of other cancer survivors, attendance at cancer seminars, conversations with children about cancer, interest in cancer education for children, and previous cancer screening were surveyed. A t-test or Spearman correlation coefficient was used to compare the total CAM scores for the individual factors. The relationship between cancer-screening behavior and individual factors was analyzed using the χ2 test. In addition, multiple regression analysis or logistic regression analysis was used to identify the factors influencing cancer awareness or cancer-screening behavior. Responses were obtained from the 612 participants. The mean CAM score was 3.7 for cancer warning signs, 4.3 for barriers to seeking help, and 6.5 for risk factors. Cancer warning signs were associated with gender and the presence of a spouse, family member, or friend who had experienced cancer. Barriers to seeking help were associated with age, gender, and education, while risk factors were associated with gender, education, and conversations about cancer with children. Moreover, these scores were associated with each cancer screening behavior. Cancer awareness among Japanese adults with AYAs was influenced by gender, academic background, occupation, the presence of cancer survivors around them, and whether they had conversations about cancer with their children, as well as their cancer screening behavior.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Neoplasias , Pais , Humanos , Estudos Transversais , Masculino , Feminino , Neoplasias/psicologia , Neoplasias/epidemiologia , Adolescente , Adulto Jovem , Adulto , Pais/psicologia , Inquéritos e Questionários , Detecção Precoce de Câncer/psicologia , Fatores de Risco , Pessoa de Meia-Idade , Japão/epidemiologia
11.
S Afr Fam Pract (2004) ; 66(1): e1-e13, 2024 Jun 06.
Artigo em Inglês | MEDLINE | ID: mdl-38949448

RESUMO

BACKGROUND:  Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a child with this painful condition can have a profound effect on the quality of life of parents and the family. There is currently no published research on the lived experience of parents caring for a child with EB in a resource-limited environment in Africa. METHOD:  This qualitative research used interpretative phenomenological analysis with the aim of understanding the lived experiences of parents caring for children with EB. Semi-structured interviews were conducted with 13 participants between May 2022 and October 2023. Guba's framework of trustworthiness was used to ensure rigour. RESULTS:  Seven experiential themes with associated sub-themes were identified. The themes were (1) grappling with understanding EB, (2) the psychological experience, (3) living with the responsibility, (4) barriers to feeling supported, (5) changing relational dynamics, (6) experience of healthcare professionals and (7) parental needs. CONCLUSION:  Parents caring for children with EB face emotional, physical, psychosocial and financial challenges. Addressing parents' needs and concerns will go a long way in decreasing this burden. A biopsychosocial approach with an awareness of cultural context is essential for family-centred holistic EB care.Contribution: This is the first study in Africa that focussed on the lived experiences of parents caring for a child with EB.


Assuntos
Epidermólise Bolhosa , Pais , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Epidermólise Bolhosa/psicologia , Epidermólise Bolhosa/terapia , Pais/psicologia , Masculino , Feminino , Criança , Adulto , Entrevistas como Assunto , Pessoa de Meia-Idade , África do Sul , Pré-Escolar , Percepção
12.
BMC Psychol ; 12(1): 386, 2024 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-38987850

RESUMO

OBJECTIVE: Caring for a child, particularly one with special healthcare needs, is a demanding task that can lead to the experience of caregiver strain. This in turn has an effect on the caregiver's mental health, as well as on the child and his or her treatment. To enable the identification of afflicted parents, this study aims to provide a German version of the Caregiver Strain Questionnaire-Short Form 11 (CGSQ-SF11) and to examine its factor structure and psychometric properties. METHODS: Data from 698 caregivers were included in the analyses. Caregivers completed the CGSQ-SF11 along with measures of parenting stress (PSI-SF), stress (PSS-10), anxiety (GAD-7), depression (PHQ-8), family-related quality of life (FLQ), and social desirability (SES-17) as additional instruments for validation. A two-week follow-up questionnaire included only the CGSQ-SF11. Exploratory factor analysis followed by a confirmatory factor analysis was conducted for parents of children with and without special healthcare needs, separately. Further analyses examined the validity and reliability of the instrument. RESULTS: For parents of children with special healthcare needs, a three-factor structure (objective, internalized subjective, externalized subjective strain) with a second-order factor (caregiver strain) was supported. For parents of children without special healthcare needs, a similar three-factor structure was found, although the second-order factor was not supported. Measurement invariance between the two groups was not confirmed. Internal consistency, test-retest reliability, and validity were largely supported in both groups. CONCLUSIONS: The results indicate that the German version of the CGSQ SF-11 is a valid and reliable questionnaire for measuring caregiver strain.


Assuntos
Cuidadores , Psicometria , Estresse Psicológico , Humanos , Feminino , Cuidadores/psicologia , Masculino , Psicometria/instrumentação , Estresse Psicológico/psicologia , Reprodutibilidade dos Testes , Adulto , Inquéritos e Questionários/normas , Alemanha , Criança , Pessoa de Meia-Idade , Pais/psicologia , Qualidade de Vida/psicologia , Adolescente , Pré-Escolar , Análise Fatorial
13.
Child Care Health Dev ; 50(4): e13303, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38991712

RESUMO

BACKGROUND: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. METHODS: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. RESULTS: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. CONCLUSIONS: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.


Assuntos
Cuidadores , Necessidades e Demandas de Serviços de Saúde , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Criança , Masculino , Feminino , Adolescente , Reino Unido , Acessibilidade aos Serviços de Saúde , Pré-Escolar , Avaliação das Necessidades , Adulto , Serviços de Saúde da Criança/organização & administração , Crianças com Deficiência/reabilitação , Pais/psicologia , Pessoal de Saúde/psicologia , Adulto Jovem
14.
Pediatr Int ; 66(1): e15764, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38995187

RESUMO

BACKGROUND: The objective of this study was to develop the Parenting Difficulties in Infectious Disease Pandemic Inventory (PDIDPI) for the assessment of parenting difficulties during the coronavirus disease 2019 (COVID-19) pandemic and to examine its psychometric properties. METHODS: The 31-item PDIDPI was developed on the basis of the results of focus group interviews. An exploratory factor analysis using principal axis factoring was conducted to examine the PDIDPI factor structure. The internal consistency was assessed using Cronbach α values. The test-retest reliability was assessed using the intraclass correlation coefficient (ICC). The concurrent validity was established by examining the correlations of the PDIDPI with Fear of COVID-19 Scale and Center for Epidemiologic Studies Depression Scale (CESD) scores. RESULTS: We determined that the PDIDPI has seven factors: infection, school and learning, life change, care burden, daily living, health care, and emotion and behavior. The PDIDPI also had good internal consistency (α = 0.685-0.929) and acceptable test-retest reliability (ICC = 0.404-0.794). Regarding concurrent validity, the overall PDIDPI and its seven factors were all significantly associated with depression, determined by the CESD (r = 0.223-0.370), but not all factors were significantly associated with fear of COVID-19 (r = 0.082-0.203). CONCLUSIONS: Our findings support the psychometric properties of the PDIDPI, confirming its utility for evaluating the multifaceted challenges parents face in child management during the COVID-19 pandemic.


Assuntos
COVID-19 , Poder Familiar , Psicometria , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , Psicometria/métodos , Poder Familiar/psicologia , Feminino , Masculino , Reprodutibilidade dos Testes , Adulto , Inquéritos e Questionários , Criança , SARS-CoV-2 , Grupos Focais , Japão/epidemiologia , Depressão/epidemiologia , Depressão/psicologia , Depressão/diagnóstico , Pandemias , Análise Fatorial , Pais/psicologia , Pré-Escolar
15.
BMJ Open ; 14(7): e084737, 2024 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-38969383

RESUMO

INTRODUCTION: Cleft lip and/or palate (CL/P) affects 1 in 700 live births globally. Children born with CL/P and their families face various challenges throughout the child's development. Extant research is often limited by small numbers and single-centre data. The Cleft Collective, a national cohort study in the UK, aims to build a resource, available to collaborators across the globe, to understand causes, best treatments and long-term outcomes for those born with CL/P, ultimately seeking to enhance their quality of life through improved understanding and care. METHODS AND ANALYSIS: A longitudinal prospective cohort study of children born with CL/P and their families. Recruitment occurs across the UK and started in November 2013. Recruitment will continue until September 2027 with an estimated final sample of 4822 children born with CL/P (1157 cleft lip including/excluding the alveolus; 2112 cleft palate only; 1042 unilateral cleft lip and palate and 511 bilateral cleft lip and palate). Biological samples are collected from all recruited members of the family. Parental and child questionnaires are collected at key time points throughout the child's development. Surgical data are collected at the time of surgical repair of the child's cleft. Consent is obtained to link to external data sources. Nested substudies can be hosted within the cohort. Regular engagement with participants takes place through birthday cards for the children, social media posts and newsletters. Patient and Public Involvement is conducted through the Cleft Lip And Palate Association and Cleft Collective Patient Consultation Group who provide insightful and essential guidance to the Cleft Collective throughout planning and conducting research. ETHICS AND DISSEMINATION: The Cleft Collective was ethically approved by the National Research Ethics Service committee South West-Central Bristol (REC13/SW/0064). Parental informed consent is required for participation. Findings from the Cleft Collective are disseminated through peer-reviewed publications, conference presentations, newsletters and social media.


Assuntos
Fenda Labial , Fissura Palatina , Humanos , Fenda Labial/cirurgia , Fenda Labial/epidemiologia , Fissura Palatina/cirurgia , Fissura Palatina/epidemiologia , Estudos Prospectivos , Estudos Longitudinais , Reino Unido , Criança , Lactente , Qualidade de Vida , Pré-Escolar , Feminino , Masculino , Projetos de Pesquisa , Inquéritos e Questionários , Pais/psicologia
16.
BMJ Open ; 14(7): e078548, 2024 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-38969386

RESUMO

INTRODUCTION: Online-based interventions provide a low-threshold way to reach and support families. The mentalisation-based Lighthouse Parenting Programme is an established intervention aimed at preventing psychopathological development in children. The objective of this study is to examine the feasibility of an online adaptation of the Lighthouse Parenting Programme (LPP-Online), evaluating (a) recruitment capability, compliance, acceptability and satisfaction with the intervention; (b) the psychometric properties of and the acceptability regarding the adjunct psychological evaluation; and (c) the employed materials and resources. The study will also obtain a preliminary evaluation of participants' responses to the intervention. METHOD AND ANALYSIS: In this monocentric, one-arm, non-randomised feasibility trial, n=30 psychologically distressed parents with children aged 0 to 14 years will participate in the LPP-Online for a duration of 8 weeks. The intervention consists of online group sessions and individual sessions, 38 smartphone-based ecological momentary interventions (EMI), and psychoeducational materials (website, booklet). At baseline (T0) and the end of the intervention (T1), parents complete self-report questionnaires as well as 7-day ecological momentary assessments (EMA) via smartphone. During the intervention, additional EMA are completed before and after the daily EMI. An interview regarding parents' subjective experience with the intervention will be conducted at T1. The feasibility of the intervention, the psychological evaluation and the resources will be examined using descriptive and qualitative analyses. The preliminary evaluation of the parents' response to the intervention will be conducted by analysing pre-post changes in questionnaire measures and the 7-day EMA as well as data of additional EMA completed before and after the daily EMI. ETHICS AND DISSEMINATION: Ethical approval of the study has been obtained from the local ethics board (Faculty of Behavioural and Cultural Studies, University of Heidelberg). Consent to participate will be obtained before starting the assessments. Results will be disseminated as publications in peer-reviewed scientific journals and at international conferences. REGISTRATION DETAILS: German Clinical Trials Register (DRKS00027423), OSF (https://doi.org/10.17605/OSF.IO/942YW).


Assuntos
Estudos de Viabilidade , Intervenção Baseada em Internet , Poder Familiar , Pais , Humanos , Pais/psicologia , Pais/educação , Criança , Poder Familiar/psicologia , Pré-Escolar , Adolescente , Lactente , Masculino , Angústia Psicológica , Feminino , Adulto , Recém-Nascido
17.
Pan Afr Med J ; 47: 153, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38974703

RESUMO

Introduction: the National Tuberculosis Control Program (NTP) in Cameroon participated between 2016 and 2018 in a multi-country operational study of the Union against Tuberculosis and Lung Disease (The UNION) aiming at demonstrating the efficiency and feasibility of systematic tuberculosis preventive treatment (TPT) with 3 months of an isoniazid/rifampicin (3RH) combination in under-five child contacts of bacilliferous TB patients. Cameroon was one of the participating countries of the study. Despite the promising results communicated following this study, the coverage of TPT with 3RH in Cameroon remains low. We explored the intervention under aspects of acceptability and perceived feasibility. Methods: key participants and stakeholders in this descriptive interpretative study in Cameroon were interviewed in five focus groups or individually (31 individuals). The Focus Group Discussion (FGD) and interview transcripts were analysed for different components of acceptability using a theoretical framework and the results discussed confronting them with the main objective of the study, i.e. demonstrating feasibility. Results: the children's parents expressed overall positive feelings about and acceptance of the intervention, emphasizing the unexpected empathy shown by the health staff. The involved field staff, too, showed unreserved acceptance. On the other hand, managers at the intermediate and central levels showed scepticism as to the process of initiation of the study as well as to its feasibility in the given context, neglecting aspects of resources necessary for a scaling-up and of prioritisation. Conclusion: the adoption of a public health strategy, also internationally recognized as an effective and efficient intervention, requires more than the demonstration of its acceptability or feasibility during the term of a showcase project introduced by an external development partner. Adoption is conditioned by adoption and circumspect planning involving at each stage the stakeholders on all levels of the program.


Assuntos
Antituberculosos , Estudos de Viabilidade , Grupos Focais , Isoniazida , Saúde Pública , Tuberculose , Humanos , Camarões , Antituberculosos/administração & dosagem , Tuberculose/prevenção & controle , Isoniazida/administração & dosagem , Pré-Escolar , Feminino , Masculino , Pais/psicologia , Entrevistas como Assunto , Lactente , Aceitação pelo Paciente de Cuidados de Saúde , Adulto
18.
Front Public Health ; 12: 1409215, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38975354

RESUMO

Endocrine disruptors (ED) are ubiquitous pollutants, possibly implicated in chronic disease. Exposure of vulnerable populations; including neonates, infants and children; must therefore be limited. Informing parents is now a public health challenge. We conducted a quantitative cross-sectional study at the Lyon Mother and child Hospital. We used questionnaires to assess the beliefs and knowledge about ED of parents and pediatric healthcare professionals in the pediatric ward in Lyon, France. A total of 746 questionnaires were completed: 444 for professionals and 302 for parents. The majority of both populations had already heard of ED but only 10% of parents and 5% of professionals felt sufficiently informed. Professionals answered better than parents (73% vs. 60%). The main source of information was similar: media. Only 20% of professionals had read a scientific article about ED and 4% have followed a training. Environmental exposure and EDs is an increasing concern for parents but specific knowledge remains scare for parents and professionals. Specific training is needed.


Assuntos
Disruptores Endócrinos , Conhecimentos, Atitudes e Prática em Saúde , Pais , Humanos , Estudos Transversais , Feminino , Inquéritos e Questionários , Masculino , Pais/psicologia , França , Adulto , Exposição Ambiental , Criança , Pediatria , Lactente
19.
Psychooncology ; 33(7): e6374, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38977423

RESUMO

OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.


Assuntos
Pessoal de Saúde , Neoplasias , Pais , Assistência Terminal , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Pessoal de Saúde/educação , Pessoal de Saúde/psicologia , Pais/psicologia , Pais/educação , Assistência Terminal/psicologia , Masculino , Feminino , Criança , Adulto , Autoeficácia , Pesquisa Qualitativa , Inquéritos e Questionários , Comunicação , Relações Profissional-Família
20.
BMC Pediatr ; 24(1): 446, 2024 Jul 11.
Artigo em Inglês | MEDLINE | ID: mdl-38992610

RESUMO

BACKGROUND: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a long-term change leading to greater vulnerability. Knowing the characteristics of these transitional processes is important for promoting safe transitions in this population. This scoping review aimed to map the available evidence on health-illness transition processes in children with complex chronic conditions and their parents in the context of healthcare. METHODS: Six databases were searched for studies focusing on children aged 0-21 years with CCC and their parents experiencing health-illness transition processes, particularly concerning adaptation to illness and continuity of care, in the context of healthcare. Studies within this scope carried out between 2013 and 2023 and written in Portuguese or English were identified. The articles were selected using the PRISMA methodology. The data were extracted to an instrument and then presented with a synthesizing approach supporting the interpretation of the results. RESULTS: Ninety-eight methodologically broad but predominantly qualitative articles were included in this review. Children with CCC have specific needs associated with complex and dynamic health-illness transitions with a multiple influence in their daily lives. Several facilitating factors (p.e. positive communication and a supportive therapeutic relationship with parents and professionals, as well as involvement in a collaborative approach to care), inhibiting factors (p.e. the complexity of the disease and therapeutic regime, as well as the inefficient organization and coordination of teams) and both positive (p.e. well-being and better quality of life) and negative response patterns (p.e. negative feelings about the chronic illness) were identified. Some interventions to support the transitional process also emerged from the literature. Pediatric palliative care is seen as a good practice and an integrative approach for these children and families. CONCLUSION: Health professionals play a fundamental role in supporting the transitional process and promoting positive response patterns. More significant investment is needed at the clinical and academic levels regarding production and dissemination of knowledge in this area to ensure the awareness of children with CCC and that their needs are fully enhanced. REVIEW REGISTRATION: https://doi.org/10.17605/OSF.IO/QRZC8 .


Assuntos
Pais , Humanos , Criança , Doença Crônica/terapia , Pais/psicologia , Adolescente , Pré-Escolar , Adaptação Psicológica , Lactente , Adulto Jovem , Continuidade da Assistência ao Paciente , Transição Epidemiológica
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