Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 9.915
Filtrar
Mais filtros








Intervalo de ano de publicação
1.
Front Psychiatry ; 15: 1423326, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39140110

RESUMO

Introduction and objective: Mental Health Literacy (MHL) is important in promoting youth mental health. One key aspect of MHL is knowledge about mental disorders, which is particularly relevant for populations at risk for developing mental disorders, such as children of parents with a mental illness (COPMI), representing a mechanism within the transgenerational transmission. Currently, COPMI's level of disorder knowledge in general, and about the specific parental disorder has not been comprehensively researched. We, therefore, aimed to assess COPMI's disorder knowledge and clarify its association with COPMI's age and sex exploratively. To assess both general and disorder-specific knowledge, we took a novel approach that makes disorder knowledge comparable across samples and over time. Methods: A mixed method analysis of N = 181 semi-structured MHL interviews with COPMI (aged 5 to 17 years) was carried out in the COMPARE-family study in Germany. We conducted a DSM-oriented deductive qualitative content analysis to assess COPMI's general and specific disorder knowledge. Chi-square tests served to identify age and sex differences. Results: Children revealed limited knowledge of mental disorders in general, whereas adolescents displayed more knowledge that was also partly consistent with descriptions of classification systems like the DSM-5. The level of specific knowledge about the parent's disorder depended on the disorder group. More children displayed adequate knowledge of somatic and anxiety disorders compared to trauma and depressive disorders, and more adolescents displayed adequate knowledge of depressive and anxiety disorders. COPMI's age and sex were found to be significantly associated with disorder knowledge: adolescents exhibited higher levels of adequate general and specific disorder knowledge, and males exhibited higher levels of adequate general disorder knowledge. Conclusion: Assessing COPMI's disorder knowledge and identifying associated age and sex differences yield valuable insights into the knowledge component of the MHL theory. Our findings can help to improve psychoeducational interventions for COPMI by orienting them to their prevailing levels of disorder knowledge. We recommend employing and extending the DSM-oriented deductive approach to assess knowledge within MHL. Analyses involving additional assessments within the COMPARE-family study are in preparation to identify potential knowledge gains over time, and associations to COPMI's own well-being and mental health symptoms.

2.
Soc Sci Med ; 357: 117183, 2024 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-39142142

RESUMO

When it comes to health-related information-seeking behavior, online communities play a key role for some groups, such as parents. With a case study of online communities in a loosely organized vaccination system, that of Austria, we study how parents make use of a prominent online forum (parents.at) in their vaccination trajectories and situate this analysis in its socio-political context. Based on inductive qualitative analysis of relevant threads (n = 27), we find that parents use forums in three ways: First, the forum serves as a platform through which parents seek orientation in a loosely organized and fragmented vaccination system. Second, the forum offers space for sharing, collecting, and evaluating different forms of expertise. In doing so, parents carve out a space in which they can comfortably put lay expertise and credentialed expertise on a par, particularly in their advice to peers. Third, and on that basis, parents use the forum for deliberating on future or past vaccination-related decisions. In doing so, they frequently draw on idiosyncratic notions of individual risks and benefits. These three practices enable parents to accumulate and share what we label navigational capital. We conclude that parents resort to online spaces both out of a subjective need and, for some, as a result of a dysfunction of the national childhood vaccination program which offers little orientation for parents.

3.
Fam Process ; 2024 Aug 14.
Artigo em Inglês | MEDLINE | ID: mdl-39142334

RESUMO

The shared loss of a child can present challenges to couple relationships as both partners attempt to cope with their own grief and their partner's grief. In this longitudinal qualitative study, five bereaved parent couples participated in 13 total interviews, revealing coregulatory interactions surrounding their shared loss. Using thematic coding and grounded theory analysis, their reflections were organized into three interrelated process themes: regulating self, regulating other, and forming our grief rhythm. This article explores the complexity of the last theme "forming our grief rhythm" in-depth, and a new theoretical orientation, the relational window of tolerance, is introduced to examine how couples coregulate both fragile and stable states within their shared grief. The reflections of bereaved parents indicated that prolonged "dual fragile states" and prolonged "imbalanced states" may hinder relationship quality. In order to regain relationship stability, couples learned to trade off supporting one another and/or to resonate with one another in their shared pain. Implications for future research and clinical practice are discussed, focusing especially on how to integrate individual and relational needs into grief therapy frameworks.

4.
Soins Pediatr Pueric ; 45(340): 18-24, 2024.
Artigo em Francês | MEDLINE | ID: mdl-39142750

RESUMO

Adolescent parenthood is a risky situation for the mental health of young people and for the development of infants. Yet adherence to psychological care remains difficult at this stage of life, notably because of the insecurity of attachment bonds often present in these young people. The "Les Oursons" parent-baby day hospital is presented, and clinical cases involving adolescent parents are discussed. They illustrate the particular interest of a global approach to father, mother and baby, and underline the opportunities to anchor initial psychological care for each. Network and community care are also interesting avenues to explore.


Assuntos
Hospital Dia , Humanos , Adolescente , Feminino , Masculino , Gravidez na Adolescência/psicologia , Apoio Social , Poder Familiar/psicologia , Relações Pais-Filho
5.
J Voice ; 2024 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-39142923

RESUMO

OBJECTIVES: The objective of this study was to establish normative data and cut-off scores for the Children Voice Handicap Index-10 (CVHI-10) and the Children Voice Handicap Index-10 for Parents (CVHI-10-P) METHODS: For normative data, CVHI-10 and CVHI-10-P questionnaires originally developed in the Italian language were completed by 201 children without dysphonia and with no history of voice disorders, and by 1 of their parents. The results were analyzed for mean, standard deviation (SD), and standard error of the mean (SEM) for both questionnaires. For cut-off values determination, data from 49 dysphonic children and from 1 of their parents were also used. This analysis was based on the sensitivity and specificity indicators of the questionnaires using the "receiver operating characteristic" (ROC) curve. RESULTS: Analysis of the questionnaires related to healthy children revealed a mean of 0.26 (SD 0.74; SEM 0.06) for CVHI-10 and a mean of 0.15 (SD 0.49; SEM 0.04) for CVHI-10-P for the normative values. ROC curve analysis allowed us to establish the cut-off scores of 2.5 for CVHI-10 and 1.5 for CVHI-10-P. CONCLUSIONS: This study offers normative data for CVHI-10 and CVHI-10-P and provides cut-off values for both questionnaires to distinguish healthy and pathologic responders.

6.
Disabil Rehabil ; : 1-13, 2024 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-39145766

RESUMO

PURPOSE: This paper examines the current state of services and support for children and young people with intellectual disability in Vietnam through the perspectives and experiences of parents and professionals in the education and health systems. MATERIALS AND METHODS: We undertook 24 semi-structured interviews with parents and professionals from two Vietnamese central provinces to ask about their experiences and support needs. We draw on the networked model of ecological systems to identify contextual factors in the micro-, meso-, exo- and macro-systems. RESULTS: Access to education and healthcare services were found to be limited for children, young people, and families in central Vietnam. Barriers to provision, accessibility and quality of services were identified at multiple intersecting levels and systems. Parents reported high needs for formal services provided by trained professionals as well as information and education for themselves to provide optimum support for their children. For professionals, further training and government investment and oversight are needed to improve access and ensure quality of services. CONCLUSIONS: Services and support in education and healthcare for children and young people with intellectual disability and their families remains lacking and needs significant improvement. Further information and support for parents, capacity building for professionals, strengthened disability policies and regulations, and public awareness are required.


Despite an overall increase in the number of service providers for children with intellectual disability in Vietnam, parents and professionals describe these services as in significant need of improvement in terms of quality and accessibility.There is a lack of financial and human resources, centralised legislation, guidelines, and regulation to safeguard the quality of rehabilitation and education service provided.Capacity building for disability professionals needs to focus on evidence-based therapies and clinical skills, as well as on attitudes and skills to support and work with parents as collaborators in children's care and services.

7.
Psychiatry Investig ; 2024 Aug 20.
Artigo em Inglês | MEDLINE | ID: mdl-39155555

RESUMO

OBJECTIVE: Autism spectrum disorder (ASD) is a neurodevelopmental disorder with onset in infancy. Early intervention is critical to improve the prognosis for these children. E-health interventions have tremendous potential. This review aimed to determine the status and effectiveness of family interventions for parents of children aged 0-6 years with ASD in the context of e-health. METHODS: The review methodology was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. PubMed, Web of Science, and China National Knowledge Infrastructure were searched from inception to June 2022. The searches were limited to children with ASD of the age range between 0 and 6 years. We collated the available information and used descriptive statistics to analyze the synthesized data. RESULTS: Our initial search identified 3,672 articles, of which 30 studies met the inclusion criteria. The 30 articles selected were released between 2012 and 2022. All articles are in English. Most articles reviewed were from high-income countries (27/30, 90.0%), especially from the United States (16/30, 53.3%). Four major themes emerged from the 30 studies that matched the inclusion criteria, as follows: 1) type of e-health interventions, 2) duration of interventions, 3) clinical aspects of e-health interventions, and 4) evidence for intervention effectiveness, looking into the positive, negative, and mixed findings of previous studies. CONCLUSION: These findings suggest that a wide variety of e-health interventions may actually help support both children with ASD aged 0-6 years and their parents.

8.
Heliyon ; 10(14): e34771, 2024 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-39149084

RESUMO

Background: Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy that presents with frequent and prolonged seizures resistant to treatment as well as cognitive problems such as behavioral and developmental delays. However, there is a lack of scientific literature on the impact of this condition on caregivers and the family unit. Objectives: To find out the social and emotional impact of DS on the family unit, to provide a comprehensive understanding of the disease's effects on both the family and caregivers. Materials and methods: A tailored online survey was administered to Spanish DS families, collecting data on the employment, financial, emotional, and social status of patients and caregivers. Results: A total of 112 Spanish caregivers participated in the study. The mean age of the 112 parents was 46.61 years, and 77.68 % of them were mothers. The majority of caregivers had to quit their jobs or reduce their working hours to take care of their child with DS, being the most of them mothers. Most of the caregivers felt that they were not well-informed by healthcare professionals (HCPs) and the Spanish National Health System (NHS). Despite access to resources, families often face financial strain and challenges in obtaining sufficient support, highlighting the need for enhanced social, economic, and psychological backing. In addition, both sentimental and social relationships were negatively impacted in the vast majority of respondents. Conclusions: The study advocates for policy reforms, integrated social services, community programs, and multidisciplinary efforts to improve the quality of life and social integration for those affected by DS.

9.
F1000Res ; 13: 859, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39113943

RESUMO

Background: Determine the effects of a multifactorial lifestyle intervention on physical activity (PA), BMI and health-related quality of life (QoL) in obese and overweight adolescents. Methods: Nine schools in India were clustered randomly in a 12-month study with students allocated to a multifactorial intervention (MFI), or exercise only (EX) or control (CON) group. Participants were adolescents aged 11-16 years (n=671). In the MFI group, adolescents and their parents received lifestyle education using a validated booklet combined with a PA intervention for school students. The EX group received school-based PA only; the CON group continued regular activities. Primary outcomes were PA levels measured with the PAQ-A, and BMI; the secondary outcome was health-related QoL. A linear regression statistical model was used to analyse time, group effects and interactions, with Bonferroni correction for within-group differences at baseline (T0) and at 12-weeks (T1) (post-intervention), 6-month (T2) and 12-month (T3) follow-ups. Results: Significant time and group effects observed for all groups with PA scores (p<0.001), with MFI group having largest increase in PA; with BMI (p<0.001) and MFI showing the least gain in BMI; and HRQOL (p<0.001), with MFI group showing greatest improvement in scores. There were significant increases in PA at T1 and T3 time-points with the EX group, and at T3 time-point only for MFI and CON, with MFI group showing largest increase in HRQOL scores. BMI increased significantly for all groups at T2 (MFI p=0.001, EX p<0.001) and T3 (p<0.001), while HRQOL increased significantly for both MFI and EX at both follow-ups (p<0.001). Conclusions: School-based lifestyle MFI was more effective for improving PA, lifestyle behaviours and HRQOL than exercise alone for adolescents, although BMI was not reduced. MFI with PA could be an effective school-based approach for behaviour modification but BMI has limitations for measuring body composition changes. Registration: CTRI/2019/04/018834 (30/04/2019).


Assuntos
Índice de Massa Corporal , Exercício Físico , Sobrepeso , Qualidade de Vida , Humanos , Adolescente , Índia , Feminino , Masculino , Criança , Sobrepeso/terapia , Estilo de Vida , Obesidade/terapia , Obesidade Infantil/terapia
10.
J Adv Nurs ; 2024 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-39119754

RESUMO

AIMS: This study explored the relationships between family resilience, dyadic coping and psychological adjustment among adolescents with chronic illnesses and their parents. The actor-partner interdependence mediation model was used to validate the mediating role of dyadic coping in the relationship between family resilience and psychological adjustment. DESIGN: This is a cross-sectional study. METHODS: A total of 318 parent-adolescents dyads were recruited from three paediatric hospitals in Wenzhou, Hangzhou, Shanghai city, China, between June 2022 and August 2023. The parents had a mean age of 41.62 years, and the adolescents had a mean age of 12.66 years. Participants independently completed a self-report questionnaire assessed family resilience, dyadic coping and psychological adjustment. Data analysis was conducted using the actor-partner interdependence mediation model. RESULTS: The findings suggest that in the actor effects, family resilience directly influenced psychological adjustment, and family resilience is related to psychological adjustment through positive dyadic coping. In the partner effect, parents' family resilience influenced adolescents' psychological adjustment through the parents' positive dyadic coping. Similarly, adolescents' family resilience influenced parents' psychological adjustment through both parents' positive dyadic coping and adolescents' negative dyadic coping. Additionally, there was a partner effect between parents' family resilience and adolescents' psychological adjustment. CONCLUSION: This study demonstrated the importance of developing effective dyadic interventions based on family resilience or positive dyadic coping strategies to improve the mental health of adolescents with chronic illnesses and their parents. IMPACT: The mediating role of dyadic coping in the relationship between family resilience and psychological adjustment among adolescents with chronic illnesses and their parents was demonstrated. Future psychosocial interventions should focus on increasing parents' positive dyadic coping strategies and improving adolescents' negative dyadic coping strategies. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

11.
Front Public Health ; 12: 1399616, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39104896

RESUMO

Aims: This study aimed to evaluate the impact of continuous nursing and telehealth education via WeChat in infants with congenital talipes equinovarus (CTEV) undergoing Ponseti therapy on reducing complications, care burden, and improving the quality of life for parents. Methods: This is a single-center retrospective study. From July 2021 to December 2022, 44 CTEV children who undergoing Ponseti treatment in our hospital who received continuous nursing and telehealth education via WeChat (experimental group). In addition, during January 2020 to June 2021, 44 children with CTEV treated with Ponseti in our hospital who received routine nursing and traditional health education were selected as the control group. The incidence of complications, parental care burden and parental quality of life were compared between the two groups. Results: There was no significant difference in the demographic characteristics of patients and parents between the two groups, and the groups were comparable (p > 0.05). The incidence of complications including plaster loosens, plaster falling off, pressure ulcer was significantly lower in the intervention group compared to the control group (p < 0.05). Parents in the intervention group experienced significantly lower care burdens compared to those in the control group (p < 0.05). The quality of life of parents in the intervention group was significantly higher than that for the control group (p < 0.05). There were significant differences in the incidence of complications, the care burden of parents and the quality of life of parents between the two groups. Conclusion: This study found that continuous nursing and telehealth education via WeChat group during Ponsetis treatment of children with CTEV can effectively reduce complications, reduce the care burden of parents and improve the quality of life of parents. This method is simple and convenient, especially worthy of application and promotion in medically underdeveloped areas.


Assuntos
Pé Torto Equinovaro , Pais , Qualidade de Vida , Telemedicina , Humanos , Estudos Retrospectivos , Pé Torto Equinovaro/terapia , Masculino , Pais/educação , Pais/psicologia , Feminino , Lactente , Recém-Nascido , Moldes Cirúrgicos
12.
Cont Lens Anterior Eye ; : 102283, 2024 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-39107159

RESUMO

OBJECTIVES: To investigate the relationships among myopia treatment, decision regret, shared decision-making, and vision-related quality of life among parents of 6-12-year-old children with myopia. METHODS: An online Google Forms questionnaire was developed using a cross-sectional design and distributed between January 16 and August 22, 2023. Parents of 6-12-year-old children with myopia were recruited through school nurses working in Taiwan. The children's and parents' demographic data were collected. Study instruments included the Decisional Regret Scale, Shared Decision-Making, and Vision-Related Quality of Life questionnaires. Multivariable linear regression analysis was used to identify factors influencing vision-related quality of life. RESULTS: Of 350 parents contacted, 314 questionnaires were analyzed. Among the respondents, 77.39 % (n = 243) were mothers, and most were aged >40 years. The mean age of children at myopia diagnosis was 7.12 ± 1.24 years; 46.50 % had < - 1.0 diopters of refractive error. Atropine eye drops were the primary treatment; 17.71 % of children were prescribed orthokeratology for myopia control. Parents reported low levels of decision regret and moderate levels of shared decision-making and vision-related quality of life. Children's age, use of orthokeratology lenses, decision regret, and shared decision-making significantly influenced the vision-related quality of life reported by the parents, accounting for 22.5 % of the variance. CONCLUSION: The study's findings emphasize the importance of addressing decision regret and promoting shared decision-making in myopia treatment. Eye care professionals should discuss treatment options thoroughly before making decisions. Through shared decision-making, parents can make informed choices about treatments based on a comprehensive understanding of the benefits and drawbacks, ultimately benefitting children's vision health.

13.
Sci Rep ; 14(1): 18374, 2024 08 07.
Artigo em Inglês | MEDLINE | ID: mdl-39112497

RESUMO

Many developmental psychologists aspire to conduct research that informs interventions and policies to prevent income-related disparities in child development. Among growing researcher discussion about the value of interventions that target "structural" and resource-related correlates of income inequality and child development (e.g., housing, food, material goods, cash), rather than individual, person-centered correlates (e.g., parenting behaviors), the perspectives of mothers with low incomes may provide important context. 281 mothers with young children and low incomes rated various structural and individual interventions, framed as having minimal costs and entry barriers, for their perceived helpfulness. Analyses were pre-registered. Overall, mothers rated all interventions very highly, though they rated structural interventions as slightly more helpful than individual interventions. Mothers rated interventions they used in the past as less helpful than those they hadn't previously used. An exploratory qualitative analysis revealed mothers' desires for supports in other intervention domains beyond those addressed in our survey. Together, mothers' responses indicated that they did not see individual interventions as inherently unhelpful due to a focus on individual states, knowledge, and skills. Implications for developmental psychology and intervention science are discussed.


Assuntos
Desenvolvimento Infantil , Mães , Pobreza , Humanos , Mães/psicologia , Feminino , Adulto , Pré-Escolar , Poder Familiar/psicologia , Masculino , Criança , Lactente , Inquéritos e Questionários
14.
Int J Dev Disabil ; 70(5): 879-886, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39131756

RESUMO

The aim of the present study was to compare the social support in parents of children with neurodevelopmental disorders. The sample consisted of 166 parents of children with neurodevelopmental disorders in Isfahan, Iran. Medical Outcomes Study Social Support Survey (MOS-SSS, Sherbourne and Stewart 1991) was used for measuring the availability of social support. The collected data were analyzed using two-way analysis of variance and multivariate analysis of variance. The results showed that there was no significant difference in social support scores between parents of children with neurodevelopmental disorders based on the type of child disorder and the gender of the parents (p > 0.05). The results also showed that there was no significant difference in the subscale of emotional/informational support, tangible support, and affectionate support between parents of children with neurodevelopmental disorders (p > 0.05) but in the one subscale (i.e. social interaction) parents of children with intellectual disability was significantly higher than parents of children with autism spectrum disorder and parents of children with attention deficit hyperactivity disorder. Moreover, The results showed that there was no significant difference in subscales of social support between parents of children with neurodevelopmental disorders based on the gender of the parents (p > 0.05). Therefore, according to the research findings, the design and implementation of support and educational programs for parents of children with neurodevelopmental disorders, especially in parents of children with ASD and ADHD, and to increase social interactions are essential and should be a priority in the programs of organizations providing psychological services.

15.
F1000Res ; 13: 739, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39086771

RESUMO

Background: Healthcare, like other industries, emphasizes performance, quality, and consumer experience while also attempting to reduce costs. However, high-quality healthcare remains paramount for vulnerable and ill patients. This study aimed to investigate parents' and caregivers' level of satisfaction with physiotherapy services provided to neuropediatric outpatients on the United Arab Emirates (UAE). Methods: This descriptive cross-sectional study included 103 parents/caregivers of children with neurological disabilities that were randomly selected from different Emirates Health Services Hospitals in the UAE. Data was collected using the long-form Patient Satisfaction Questionnaire (PSQ-III). Results: The overall mean satisfaction was 159±7.73 (out of 250 points). Communication (20.36/25), interpersonal factors (20.17/35), and doctor-patient time (20.17/35) had the highest mean satisfaction scores (8.06/10). The lowest mean satisfaction scores were for access/availability/convenience (34.60/60), technical quality (33.17/50), and economic elements (23.83/40). Conclusion: Despite participants' overall satisfaction scores being positive, some service domains require improvement to improve satisfaction, specifically the access/availability/convenience, technical quality, and economic elements. These areas should be prioritized by service providers and managers to improve patients' experiences and clinical outcomes.


Assuntos
Pacientes Ambulatoriais , Pais , Modalidades de Fisioterapia , Humanos , Emirados Árabes Unidos , Estudos Transversais , Feminino , Masculino , Pais/psicologia , Adulto , Criança , Hospitais Privados , Satisfação do Paciente , Inquéritos e Questionários , Pré-Escolar , Hospitais Públicos , Adolescente , Pessoa de Meia-Idade
16.
Res Involv Engagem ; 10(1): 87, 2024 Aug 09.
Artigo em Inglês | MEDLINE | ID: mdl-39123249

RESUMO

BACKGROUND: Patient and public involvement (PPI) in research is widely acknowledged as essential to achieving successful and impactful research. Despite this acknowledgement, there are limited reports on how to approach and apply meaningful PPI throughout the research cycle and how to address challenges for researchers such as doctoral students, particularly when undertaking research on sensitive topics. This paper provides insights and examples for researchers new to PPI, on the impact of active PPI and recommendations for building and developing a PPI group in a paediatric focused doctoral research study with bereaved parents and carers. METHODS: PPI was informed by the research cycle. The GRIPP2 short-form checklist was used to report PPI. The research was funded by the National Institute for Health and Care Research. RESULTS: PPI enhanced the research through input into the study design, recruitment, co-design of the study website and branding; and ethics amendments to increase participation in response to the COVID-19 pandemic. The literature review was extended to incorporate a PPI consultation phase and members contributed to data analysis. A flexible approach enabled involvement to develop iteratively throughout the research study, resulting in changes being made to enhance the study design and outcomes. CONCLUSION: This paper contributes to the limited knowledge base on embedding PPI into a doctoral research study and within the paediatric setting specifically working in partnership with bereaved parents and carers. Employing an adaptive approach to meet individual PPI needs, building a trusting and respectful partnership, creating shared ownership and investment in the research, are essential components to successful PPI.


Involving patients and the public in research provides the opportunity to develop meaningful outcomes that are relevant to the population being studied. Despite the benefits of patient and public involvement in research, guidelines that support researchers in doing so, lack detail on how to do this effectively. This is particularly important for those new to research such as doctoral students, who have so much to learn in developing a research study. Different approaches and applications to involvement are also likely to be needed depending on the population being studied. There are limited published papers on examples of how doctoral students have engaged and involved patients and the public in the context of their studies, and specifically within the children's setting, working in partnership with bereaved parents and carers, or those with seriously ill children. This paper offers examples and insights for those new to research in how to involve patients and the public throughout the research cycle. Specifically undertaking research in a sensitive subject of a particular childhood cancer which has poor outcomes and how to incorporate and evaluate successful patient and public involvement in their research activities such as study design and analysis of the results. Parent and carer reflections on their experiences of being involved are also reported and researcher recommendations for approaching and working with a patient and public group are described.

17.
J Child Health Care ; : 13674935241273982, 2024 Aug 14.
Artigo em Inglês | MEDLINE | ID: mdl-39140827

RESUMO

Research with siblings of children with congenital heart disease (CHD) is scarce, although more than one-third of them experience limitations on their quality of life. This interview study aims to explore the diagnosis-associated experience of German siblings of children with CHD, their interest in a potential intervention, and potential key topics and contextual conditions of such an intervention. Interviews with 10 siblings aged 10 to 21 and a respective parent were conducted from August to October 2021, resulting in 20 interviews. Negative experiences associated with CHD included concerns regarding hospitalization, health deterioration, and the death of the child with CHD, as well as burdens including reduced family activities, less parental attention and support, and extended family meals. Positive experiences included perceived positive consequences of CHD, such as strong family cohesion and empathy toward people with chronic illnesses. Furthermore, siblings experienced enhanced coping mechanisms, such as having conversations with friends and family about the high prevalence of CHD and successful treatment or using distractions such as entertainment or study. Siblings' reported interest in a future intervention included empathy, peer support, and studying medical information on CHD. These findings should be used for counseling and developing tailored interventions to support these siblings.

18.
BMC Geriatr ; 24(1): 653, 2024 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-39097684

RESUMO

BACKGROUND: With the advent of the smart phone era, managing blood glucose at home through apps will become more common for older individuals with diabetes. Adult children play important roles in glucose management of older parents. Few studies have explored how adult children really feel about engaging in the glucose management of their older parents with type 2 diabetes mellitus (T2DM) through mobile apps. This study provides insights into the role perceptions and experiences of adult children of older parents with T2DM participating in glucose management through mobile apps. METHODS: In this qualitative study, 16 adult children of older parents with T2DM, who had used mobile apps to manage blood glucose for 6 months, were recruited through purposive sampling. Semi-structured, in-depth, face-to-face interviews to explore their role perceptions and experiences in remotely managing their older parents' blood glucose were conducted. The Consolidated Criteria for Reporting Qualitative Research (COREQ) were followed to ensure rigor in the study. The data collected were analyzed by applying Colaizzi's seven-step qualitative analysis method. RESULTS: Six themes and eight sub-themes were identified in this study. Adult children's perceived roles in glucose management of older parents with T2DM through mobile apps could be categorized into four themes: health decision-maker, remote supervisor, health educator and emotional supporter. The experiences of participation could be categorized into two themes: facilitators to participation and barriers to participation. CONCLUSION: Some barriers existed for adult children of older parents with T2DM participating in glucose management through mobile apps; however, the findings of this study were generally positive. It was beneficial and feasible for adult children to co-manage the blood glucose of older parents. Co-managing blood glucose levels in older parents with T2DM can enhance both adherence rates and confidence in managing blood glucose effectively.


Assuntos
Filhos Adultos , Diabetes Mellitus Tipo 2 , Aplicativos Móveis , Pais , Pesquisa Qualitativa , Humanos , Diabetes Mellitus Tipo 2/terapia , Diabetes Mellitus Tipo 2/psicologia , Diabetes Mellitus Tipo 2/sangue , Masculino , Feminino , Pessoa de Meia-Idade , Pais/psicologia , Filhos Adultos/psicologia , Adulto , Idoso , Glicemia/metabolismo , Automonitorização da Glicemia/métodos , Automonitorização da Glicemia/psicologia
19.
Front Public Health ; 12: 1408145, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39100944

RESUMO

Introduction: The recent COVID-19 pandemic has profoundly disrupted the eating and lifestyle habits among populations, especially among younger populations who are more prone to unhealthy dietary behaviours. However, current knowledge related to eating and lifestyle patterns, especially physical activity and sleep among different generations is limited. Our study sought to understand the eating habits, physical activity, and sleep behaviours among high school students compared to their parents in Saudi Arabia, before and during the COVID-19 pandemic. Methods: This study was conducted in public high schools in Jeddah, Saudi Arabia (n = 8 schools), spanning from September 2021 to April 2022. Data were collected using an online questionnaire, distributed to all students and their parents (n = 516) in these schools. Results: During the pandemic, parents (46.4%) showed a heightened interest in health and nutrition compared to students (32.7%, p = 0.001). Food preferences changed for 58.1% of participants; 70.0% of parents and 36.7% of students opted for homemade food (p < 0.001). Unhealthy behaviours like eating out were more common in students. Weight varied by 74.0% during COVID-19, with more parents (41.4%) gaining weight than students (31.6%, p = 0.018). Physical activity dropped more for parents (42.1%) than students (23.9%), though 30.7 and 31.6% reported increases, respectively (p < 0.001). Regardless of the pandemic, students were more likely to sleep later compared to parents (58.0% vs. 41.4%; p < 0.001), while parents were more prone to waking up earlier compared to students (81.4% vs. 67.3%, p = 0.002). Discussion: The findings underscore the varied pandemic impact on eating habits and physical activity between students and parents. Tailored interventions are vital for promoting healthier choices during health crises.


Assuntos
COVID-19 , Exercício Físico , Comportamento Alimentar , Pais , Sono , Estudantes , Humanos , COVID-19/epidemiologia , Masculino , Feminino , Arábia Saudita/epidemiologia , Adolescente , Pais/psicologia , Estudantes/estatística & dados numéricos , Inquéritos e Questionários , Pandemias , Adulto , Instituições Acadêmicas , SARS-CoV-2
20.
J Child Orthop ; 18(4): 450-457, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39100976

RESUMO

Purpose: Clubfoot is a common disabling condition that is prevalent across all populations. Approximately, one out of 750 children globally suffers from clubfoot, and around 150,000 to 200,000 children are born with clubfoot every year with 80% of the cases occurring in developing countries. Clubfoot can result in mobility impairments when not properly managed and researchers have argued that understanding knowledge and perceptions are key components to early identification and effective management of clubfoot. The study explored the barriers to clubfoot management from the perspectives of caregivers and healthcare providers in Duayaw Nkwanta, Ghana. Methods: A total of 26 participants made up of 22 caregivers of children with clubfoot and six healthcare providers were purposively sampled for the study guided by a set of inclusion and exclusion criteria. Qualitative data were collected using a semi-structured interview guide through in-depth face-to-face interviews. Interviews were transcribed and analyzed thematically and presented as findings. Results: High cost of treatment, long travel distance, long hours spent at the treatment facility, non-availability of clubfoot treatment services, late reporting of clients for treatment, and non-compliance of parents/caregivers with treatment protocols were identified as the barriers to effective management of clubfoot. Conclusion: These findings have substantial implications for current interventions to effectively manage clubfoot in Ghana.

SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA