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Background: Pediatric cancer ranks among the leading causes of mortality in children globally. While serving as primary caregivers, certain parents may experience anxiety, depression, and other related challenges. However, not all parents succumb to such psychological distress. Resilience emerges as a potential protective factor. Assessing parental resilience holds paramount importance for healthcare professionals in identifying issues and offering tailored interventions. Yet, mainland China lacks adequate tools for this assessment. Hence, this study endeavors to translate the Resilience Scale for Parents of Children with Cancer (RSP-CC) into Chinese and scrutinize its psychometric properties. Methods: From April 2023 to January 2024, a methodological study was conducted in Chengdu, Chongqing, and Jinzhou, China, recruiting 377 eligible parents via convenience sampling for a multicenter cross-sectional survey. The translation process of the RSP-CC adhered rigorously to the Brislin model, involving forward and back-translation, followed by necessary modifications. Item analysis was assessed using the critical ratio and the item-total correlation coefficient. Validity evaluation encompassed content and internal validity assessments. Scale reliability was determined through Cronbach's α coefficient, retest reliability, and split-half reliability coefficients. Results: The Chinese version of the RSP-CC comprises 4 dimensions and 24 items, explaining a cumulative variance contribution of 63.58%. In this investigation, the content validity index attained a score of 0.97. Exploratory factor analysis (EFA) yielded four factors consistent with the original scale, while confirmatory factor analysis (CFA) indicated satisfactory fit indices. Both Cronbach's α coefficient and retest reliability stood at 0.95, with a split-half reliability coefficient of 0.82. Conclusion: After rigorous translation and verification, the RSP-CC was adapted in China, demonstrating favorable psychometric characteristics. It stands as an effective instrument for parents of children diagnosed with cancer in China. Additionally, this scale could serve as a crucial tool for clinical staff in formulating specific interventions.
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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.
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Pacientes Ambulatorios , Padres , Modalidades de Fisioterapia , Humanos , Emiratos Árabes Unidos , Estudios Transversales , Femenino , Masculino , Padres/psicología , Adulto , Niño , Hospitales Privados , Satisfacción del Paciente , Encuestas y Cuestionarios , Preescolar , Hospitales Públicos , Adolescente , Persona de Mediana EdadRESUMEN
Aims: Social networks, defined as the set of active and significant ties surrounding an individual, influence the wellbeing of vulnerable children. The best evidenced mechanism through which this occurs is where networks act as a vehicle to access social support. Little is known about the content and function of social networks of children of parents with severe and enduring mental illness (COPMI). COPMI are a frequently under-identified vulnerable child population at risk of negative outcomes. This qualitative study investigates the structure, role and function of these children's networks. Methods: Researchers conducted 17 semi-structured egocentric social network interviews. Interviews incorporated personal network mapping as a data collection method. COPMI were recruited through third sector organizations and interviewed across three sites in England. Data was analyzed using an inductive thematic analysis. Results: Five network features were identified (i) parents as primary providers of support (i) limited networks and diminished connections over time (iii) substitutable ties (formal and informal) (iv) peer connections as source of both support and strain (v) coping strategies: self-censorship, avoidance and animals. Conclusion: Children of parents with severe and enduring mental illness networks are structurally typical of vulnerable children in that they are limited, rely on parents as primary ties but allow for some substitution of support ties. COPMI-specific features included peer relationships at times as source of strain and network level coping strategies used to manage wellbeing, including pets. This latter reflects previous findings in vulnerable adult populations so far unevidenced in children. Little evidence as to the mechanistic effect at work within networks was collected. However, COPMI were clearly shown to be engaged in active management and strategising in network navigation approaches, indicating the need to engage with children in this capacity, rather than approaching them as passive recipients of support. As such, effective network level interventions for this group are likely to prioritize access to beneficial substitute ties when support is limited. Additionally, interventions that promote network navigation skills and help foster productive coping strategies can capitalize on the child's active management role within their network.
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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.
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Pie Equinovaro , Padres , Calidad de Vida , Telemedicina , Humanos , Estudios Retrospectivos , Pie Equinovaro/terapia , Masculino , Padres/educación , Padres/psicología , Femenino , Lactante , Recién Nacido , Moldes QuirúrgicosRESUMEN
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.
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BACKGROUND: Children with congenital heart disease (CHD) who undergo open-heart surgery are at risk of developmental impairment, including motor delay, which contributes to parental concerns. Additionally, parents experience prolonged stress associated with their child's disease. There is a lack of early motor interventions in infants with CHD accounting for parental burdens. We developed a family-tailored early motor intervention (EMI-Heart), aiming to promote motor development in infants with CHD and family well-being. The primary aim was to evaluate the feasibility of the study design and the intervention. The secondary aim was to evaluate differences between the intervention and the control group in motor outcomes and family well-being at baseline (3-5 months), post-treatment (6-8 months), and at follow-up (12 months). METHOD: In this single-centre feasibility randomized control trial (RCT), infants with CHD after open-heart surgery without genetic or major neurological comorbidities were randomly allocated to EMI-Heart or the control group (standard of care). EMI-Heart's key elements promote postural functional activities and encourage parental sensitivity to infants' motor and behaviour cues. Infants assigned to EMI-Heart received nine sessions of early motor intervention at home, in the hospital, and online for a duration of 3 months by a paediatric physiotherapist. We performed descriptive statistics for feasibility and secondary outcomes. RESULTS: The recruitment rate was 59% (10/17), all participating families completed the study (10/10), and the intervention duration was 3.9 months (± 0.54), including nine intervention sessions per family. Median acceptability to parents was 3.9 (1 = not agree-4 = totally agree, Likert scale). The paediatric physiotherapist considered the intervention as feasible. The comparison of motor outcomes did not show differences between groups. However, we detected improved reliable change scores in family well-being outcomes for families of the intervention group compared to the controls. CONCLUSIONS: Our research indicates that EMI-Heart is a feasible intervention for infants with CHD after open-heart surgery. The intervention was highly acceptable both to parents and to the paediatric physiotherapist. Online treatment sessions offer a valuable alternative to home and hospital visits. This feasibility RCT provides a foundation for a future full trial. TRIAL REGISTRATION: ClinicalTrials.gov, NCTT04666857. Registered 23.11.2020.
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BACKGROUND: Parents play a substantial role in improving adolescent dietary behaviours. OBJECTIVES: To examine the interdependent relationships between motivations (autonomous and emotional motivation) and dietary behaviours (fruit and vegetable [F/V] and junk food and sugar-sweetened beverage [JF/SSB] intake) within parent-adolescent dyads. METHODS: This secondary data analysis was conducted on 1522 parent-adolescent dyads using a cross-sectional Family Life, Activity, Sun, Health, and Eating (FLASHE) study. The ratio of boys to girls among the adolescents was approximately equal, and 74% of the parents were mothers. The adolescents were between 12 and 17 years old, and 85.5% of the parents were between 35 and 59 years old. Parents and adolescents completed an online survey on dietary motivations and behaviours. Actor-partner interdependence models were performed within parent-adolescent dyads. RESULTS: F/V and JF/SSB intake was influenced by parents' or adolescents' autonomous motivation (actor-only pattern), except among adolescents with obesity. A dyadic pattern was found in the relationship between autonomous motivation and F/V and JF/SSB intake, but only among adolescents with normal weight. No relationship was found between F/V and JF/SSB controlled motivation and F/V or JF/SSB intake among adolescents with overweight or obesity. CONCLUSIONS: Autonomous motivation had a significant relationship with F/V and JF/SSB intake for both parents and adolescents, but the association varied depending on the adolescents' weight. Personalized programmes that foster autonomous motivation to change dietary behaviours should be provided based on the adolescents' weight status.
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Parenting during the COVID-19 pandemic was an unprecedented experience for many families around the world. With the sudden closure of schools and child care centers and the implementation of stay-at-home orders, parents were required to adjust to a new normal, one that required them to take on numerous responsibilities, all with diminished levels of social support. These changes resulted in a wide range of experiences, from feelings of overwhelm and stress to gratitude for time that was often not a reality in the hustle-bustle of everyday life in pre-pandemic times. This chapter discusses parenting during the COVID-19 pandemic, reviewing the impact on parental mental health, the impact on the parent-child relationship, and the implications for families and societal support.
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COVID-19 , Salud Mental , Relaciones Padres-Hijo , Responsabilidad Parental , Humanos , COVID-19/epidemiología , COVID-19/psicología , COVID-19/prevención & control , Responsabilidad Parental/psicología , Apoyo Social , SARS-CoV-2 , Niño , Pandemias/prevención & control , Estrés Psicológico/psicología , Estrés Psicológico/epidemiología , Padres/psicologíaRESUMEN
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.
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Hijos Adultos , Diabetes Mellitus Tipo 2 , Aplicaciones Móviles , Padres , Investigación Cualitativa , Humanos , Diabetes Mellitus Tipo 2/terapia , Diabetes Mellitus Tipo 2/psicología , Diabetes Mellitus Tipo 2/sangre , Masculino , Femenino , Persona de Mediana Edad , Padres/psicología , Hijos Adultos/psicología , Adulto , Anciano , Glucemia/metabolismo , Automonitorización de la Glucosa Sanguínea/métodos , Automonitorización de la Glucosa Sanguínea/psicologíaRESUMEN
BACKGROUND: For over 30 years, parental reports have been used to study the vocabulary of children under 4 years of age. Research exploring parental checklists as a measure of vocabulary in older children is very limited. Typically, authors of parental checklists report the reliability of the developed tools but do not explore validity in terms of the agreement between parental assessments and the children's actual word knowledge. AIMS: We aimed to explore the reliability and validity of a parental checklist for assessing vocabulary in children aged between 3 and 6 years. Furthermore, we aimed to evaluate the agreement between indirect (parental checklist) and direct (picture naming and picture recognition tasks) assessments of children's vocabulary. METHODS AND PROCEDURES: A group of 94 typically developing monolingual Polish-speaking children aged between 3 and 6 years were first directly tested onsite with picture naming and picture recognition tasks (Cross-Linguistic Lexical Tasks). Subsequently, the participants' parents completed an online checklist containing the same set of 128 items and marked all the words that they had ever heard in their child's spontaneous speech. OUTCOMES AND RESULTS: The parental checklist demonstrated very high internal consistency. The scores of the parental checklist and vocabulary tasks were moderately correlated. We compared the total number of words marked by parents and the number of items correctly identified by children in the picture naming and picture recognition tasks. In picture naming, we found no difference between the children's scores and the number of words selected by parents. However, parents selected significantly fewer words than children correctly recognised in the picture recognition task. When data were analysed at the level of individual items (i.e., whether parents selected exactly the same items that children answered correctly), we found that the level of agreement was low. The level of agreement correlated negatively with the children's vocabulary; that is, the more words a child knew, the lower the agreement between the direct measure and the parental checklist. CONCLUSIONS AND IMPLICATIONS: Parental checklists should be used with caution in children aged between 3 and 6 years, especially if the assessed children have a large vocabulary and if item analysis is planned. Such checklists may be of more use in younger children or in children with limited vocabulary. WHAT THIS PAPER ADDS: What is already known on the subject Parental checklists are commonly used to assess the vocabulary of children younger than 4 years of age. Previous research has indicated that parental checklists are reliable in terms of internal consistency and valid in terms of predictive and convergent validity. What this paper adds to the existing knowledge This study introduces a parental checklist designed for assessing the vocabulary of monolingual Polish-speaking children aged between 3 and 6 years. Statistical analyses reveal that while the parental checklist exhibits high reliability, and the scores on the checklist correlate with direct measures of vocabulary, the agreement between parental reports and direct vocabulary measures (i.e., validity) is notably low, particularly when examining individual test items. What are the clinical implications of this work? These findings underscore the importance of exercising caution when using parental vocabulary checklists with children aged between 3 and 6 years. These checklists can serve as a replacement for direct vocabulary tests only when the general/overall score is needed. However, when specific words are the subject of interest, parental reports may not be a valid measure.
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OBJECTIVE: The definition and assessment of remission in anorexia nervosa (AN) needs greater consensus. Particularly in adolescents, the use of patient-reported composite indices (such as the Eating Disorder Examination [EDE] Global Score) as the sole measure of psychological remission has the potential to obscure patients' true clinical status, given developmental factors and the propensity towards symptom minimization in AN. METHOD: End of treatment (EOT) data from a randomized controlled trial comparing two formats of manualized family-based treatment for adolescents with AN (N = 106) were analyzed. Participants completed the EDE, and their parents completed a parent-as-informant version of the EDE (Parent Eating Disorder Examination; PEDE). Rates of remission were compared across indices (i.e., EDE Global Score vs. diagnostic item analysis) and informant (i.e., adolescent vs. parent), both independently and in combination with the achievement of a percent median body mass index (% mBMI) greater than or equal to 95%. RESULTS: For both adolescent and parent reports, there were higher rates of remission when defined by Global Score than when defined by EDE or PEDE diagnostic items. There were no significant differences in remission rates based on informant. DISCUSSION: In the assessment of remission in AN, the EDE Global Score may not detect some adolescents who continue to exhibit clinically significant psychological symptoms. This study supports a detailed, multidimensional approach to assessing remission in adolescent AN to optimize sensitivity to patients' diagnostic profile. Future research should explore whether parent-child concordance on measures of ED psychopathology varies over the course of treatment.
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Familial Hypercholesterolemia (FH) is an inherited disorder that significantly increases an individual's risk of developing premature cardiovascular disease (CVD). Early intervention involving lifestyle modification and medication is crucial in preventing CVD. Prior studies have shown that lipid-lowering therapy in children is safe and effective. Despite FH being a treatable and manageable condition, the condition is still underdiagnosed and undertreated. Universal lipid screening (ULS) in children has been recommended by some medical experts in the United States as a strategy to identify cases of FH and maximize the benefits of early invention. However, lipid screening is not routinely offered in pediatric clinics. This study aimed to explore parental experience with FH diagnosis in their children, identify key facilitators and barriers in children's diagnosis and care, and examine parental perspectives on ULS in children in the United States. A total of fourteen semi-structured interviews were conducted with participants recruited through the Family Heart Foundation. Thematic analysis identified three key themes: role of family history in facilitating child's FH diagnosis, barriers and challenges in post-diagnosis care, and attitudes towards ULS in children. All participants supported ULS in children and emphasized the value of early diagnosis and treatment for FH. However, a lack of guidance or referral after the child's diagnosis was a concern raised by many participants. This underscores the need for accessible and comprehensive care amid ongoing efforts to increase pediatric diagnosis of FH.
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BACKGROUND: Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important. AIM: To evaluate a paediatric palliative care research centre's PPI activity to determine what went well, or less well; and how future activities can be improved. DESIGN: Two stage evaluation: first a review of PPI study logs; second a qualitative exploration using a survey, structured interviews and a focus group. Data were analysed thematically. SETTINGS/PARTICIPANTS: Parents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliative care research centre. FINDINGS: The review of PPI logs for 15 studies highlighted the crucial role of funding in enabling PPI throughout the research. Eight parents completed the survey, 4 parents were interviewed and 12 researchers participated in a focus group. Three themes were developed: Clarity of processes and purpose; balanced relationships created a safe space; and mutual respect and value for PPI. These themes highlight what is working well within the Centre's approach to PPI and the opportunities to improve. CONCLUSIONS: To undertake meaningful PPI in paediatric palliative care research, adequate time and resources are required. Roles, processes and expectations must be explicitly agreed. Establishing relationships ensures trust and enables authenticity and vulnerability. In addition to improving research, PPI has personal benefits for researchers and parents. The evaluation led to the development of a 'route map' for establishing an impactful PPI group for paediatric palliative care research.
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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.
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Human Papillomavirus (HPV) vaccine coverage was <50% in France in 2022 and even lower among socially disadvantaged populations. We aimed to evaluate socio-demographic determinants of HPV vaccine awareness, uptake, and intention among parents of adolescents, and related attitudes and knowledge items. Parents of adolescents attending middle schools across France, who participated in a randomized trial responded to an anonymous baseline survey, conducted between November 2021 and February 2022. We used logistic regression models adjusting for a child's age and sex to explore sociodemographic determinants (including at-home multilingualism, occupational categories, local deprivation index and urbanity) of HPV vaccine awareness, uptake, and intention. Among the 1889 participants from 61 schools, parents working as factory workers/farmers had significantly lower odds of vaccine awareness compared to executives/professionals, both if they reported (OR = 0.07; 0.03-0.15) or not (OR = 0.20; 0.11-0.36) speaking also another language than French at home. Parents in lower occupational categories with multilingual families were less likely to have the intention to vaccinate their child (OR = 0.19; 0.07-0.56). Recent physician visit or vaccine offer was strong positive determinants of awareness, uptake and intention. A substantial gradient across occupational categories was observed for attitudes and knowledge around HPV vaccine usefulness, safety, and accessibility. This study confirms the disparities on HPV vaccine uptake in France and provides insight into mechanisms of social disparities in HPV vaccine awareness, access and intention.
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Conocimientos, Actitudes y Práctica en Salud , Intención , Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Padres , Humanos , Francia , Vacunas contra Papillomavirus/administración & dosificación , Femenino , Masculino , Adolescente , Padres/psicología , Infecciones por Papillomavirus/prevención & control , Adulto , Vacunación/psicología , Vacunación/estadística & datos numéricos , Encuestas y Cuestionarios , Persona de Mediana Edad , Factores Sociodemográficos , Factores Socioeconómicos , Niño , Aceptación de la Atención de Salud/estadística & datos numéricos , Aceptación de la Atención de Salud/psicologíaRESUMEN
AIMS: To explore the distressing experiences of Chinese parents of children with cancer from the perspective of psychological inflexibility. DESIGN: A qualitative study using a descriptive qualitative approach based on the model of psychological inflexibility was adopted. METHODS: Individual semi-structured interviews through synchronized online video were conducted with 21 Chinese parents of children with cancer from October 2020 to May 2021. Data were analysed using content analysis. RESULTS: Four themes and 11 subthemes were identified: (i) immersion in struggling and suffering, (ii) avoidance and suppression, (iii) blaming and complaint and (iv) helplessness and worthlessness. Parents were unwilling to accept the diagnosis and witness their children's suffering, trapped in uncontrollable negative emotions and thoughts. Avoiding emotions and socializing, blaming themselves or complaining of injustice were common. They felt helpless towards life and valueless without the child. CONCLUSION: The research findings provide additional perspectives in understanding the distressing experiences in parents of children with cancer. Overall, the emotional and coping styles indicated the lack of psychological flexibility of parents when facing childhood cancer, which is profoundly influenced by Chinese culture. IMPLICATIONS FOR THE PROFESSION: Healthcare professionals are recommended to provide culturally sensitive strategies or interventions for building psychological flexibility in addressing parental psychological distress. IMPACT: The study provides insights into exploring distressing experiences and reveals the inflexible psychological and behavioural patterns in parents of children with cancer, which could benefit healthcare providers in managing parental psychological distress and helping these parents build flexible coping strategies. REPORTING METHOD: The COREQ guideline was followed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement.
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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.
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Parents play a crucial role in deciding what foods to introduce to their infants during the transition from milk to solids. This study examined the challenges they face, including adherence to official complementary feeding recommendations and the struggles and concerns across different stages of feeding. Specifically, this study focused on the initial stage (transition from breastmilk/formula to mashed foods), middle stage (consumption of mashed foods and some fingerfoods, transitioning towards family foods) and late stage (complete transition to family diet). Findings from 22 semi-structured interviews with Swiss parents reveal that, despite being well-informed, practical obstacles such as returning to work, limited time for preparing homemade foods, managing multiple children, and food preferences often hinder adherence. Safety concerns like allergies and choking were prominent early on but decreased as infants grew older and parents gained confidence. In the middle phase, concerns shifted towards pesticides, indicating a growing awareness of food quality. Maintaining a healthy diet was a constant concern, with early reassurance from breastfeeding or formula feeding giving way to worries about balanced nutrition as solids became more prominent. Time constraints were particularly significant in the first two stages, due to the effort of preparing small amounts of mash and later cooking separate meals. Tailored support and clear communication can help parents navigate these challenges and promote healthier feeding practices.
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BACKGROUND: Parents of children with neurodevelopmental disorders often experience heightened levels of parenting stress and diminished well-being. However, less is known about the well-being of parents whose children exhibit symptoms of neurodevelopmental disorders without yet having a formal diagnosis. AIM: This study aims to deepen our understanding of the need for support among families with young children with neurodevelopmental difficulties. Specifically, it explores parents' perspectives concerning their children, life circumstances, and emotional experiences in parenting. METHODS AND PROCEDURES: Qualitative semi-structured interviews were conducted with ten parents of children aged 2.5-5 years, referred to a child psychologist due to reported neurodevelopmental difficulties. The interviews were transcribed and analysed using qualitative content analysis. OUTCOMES AND RESULTS: Two themes, each containing four and three categories, respectively, emerged in the analysis: Parenting our child with neurodevelopmental difficulties is tough in so many ways and Prevent, manage and make up like a Pro. CONCLUSION AND IMPLICATIONS: The parents express very similar challenges, difficulties and problems as parents of children with diagnosed neurodevelopmental disorders. The main difference lies in the lack of accessible support or help for these parents. WHAT THIS PAPER ADDS: This study provides insights into how parents of children with suspected neurodevelopmental difficulties perceive their child and their overall life circumstances. The narratives show the challenges these parents face due to their children's multifaceted difficulties, leading to a need for multi-disciplinary support from professionals. The narratives also illustrate the strong emotions that arise in parenting, which in itself indicates a need for support. The study also provides further support for the importance of parents connecting with others facing similar life circumstances. The families often feel isolated despite the need for increased informal support in terms of more adults being involved with the children.
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Introduction: Parents have the potential to drive healthy lifestyle behaviors through educational initiatives. This study aims to understand the prevalent thoughts and perceptions parents have toward brain health educational programs for preschool and primary school settings, whilst also contributing to a comprehensive understanding of the role parents can play in the broader context of dementia reduction strategies and the cultivation of brain health awareness among children. Methods: Parents with children aged between 2 and 11 years old were interviewed about their current knowledge of dementia, prior beliefs, current lifestyle factors and opinions on educating their children from a young age on the topic of dementia literacy. Thematic deductive analysis was employed to systematically categorize and interpret the qualitative data obtained from these interviews. Results: Thirty parents (M age = 38.6, SD = 4.9, Range = 32-48) identified three core themes on nurturing bodies and minds (e.g., conceptualizing the link between intellectual engagement, continuous learning, and the prevention of cognitive decline), brain health literacy (e.g., current knowledge and awareness of brain health, dementia and associated stigma, and provision of age-appropriate health literacy) and parental concerns (i.e., barriers to initiating conversations about dementia with children and strategies to address and alleviate parental concerns). Parents possessing prior knowledge of dementia and its modifiable risk factors exhibited greater propensity to educate their children on the associated risk factors. Conclusion: Our study highlights the vital influence of parents' experiences, health literacy, and education on the acceptance of brain health education for children. Future interventions should target stigma reduction, enhance awareness, and offer accessible information on modifiable dementia risk factors, enabling a conducive environment for active parental involvement in educating children about brain health and contributing to future well-being.