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1.
Nutrients ; 16(11)2024 May 25.
Artículo en Inglés | MEDLINE | ID: mdl-38892551

RESUMEN

The care needs of children and adolescents with type 1 diabetes and their families are frequently approached as if they were identical to those of adults, overlooking the distinct challenges young people may face. It has been stated that children and adolescents often find conventional conversations with diabetes specialists tiresome and unpleasant. The present study focuses on familial experiences of an advanced carbohydrate counting program tailored to children and adolescents. The data encompass semi-structured interviews with families who participated in a group-based child-centered advanced carbohydrate counting program. The analysis revealed five themes: (1) peer-to-peer interaction is an essential determinant of sharing and learning; (2) illness perception significantly influences dietary intake; (3) normalization of diabetes in everyday life eases the disease burden; (4) repetition of dietary knowledge is important for retention; and (5) creating a safe and playful learning environment is crucial to engaging children and adolescents in their own treatment. The present findings suggest that it would be beneficial to explore and consider alternative teaching approaches that are adapted to a more interactive and engaging learning environment that is specifically tailored to children and adolescents. This entails moving away from traditional individual approaches.


Asunto(s)
Diabetes Mellitus Tipo 1 , Educación del Paciente como Asunto , Investigación Cualitativa , Humanos , Diabetes Mellitus Tipo 1/psicología , Adolescente , Niño , Femenino , Masculino , Educación del Paciente como Asunto/métodos , Carbohidratos de la Dieta/administración & dosificación , Conocimientos, Actitudes y Práctica en Salud , Familia/psicología , Adulto
2.
J Clin Med ; 13(5)2024 Mar 02.
Artículo en Inglés | MEDLINE | ID: mdl-38592286

RESUMEN

(1) Background: Our study explores the relationship between expected, perceived, and measured effects of botulinum toxin A (BoNT-A) treatment and saline (placebo) in children and adolescents with cerebral palsy (CP) in the calf muscles of 20 children and adolescents with cerebral palsy (CP), aged 4-15 years, using the Gross Motor Function Classification System (GMFCS) I-II. (2) Methods: A mixed methods parallel database design was used. Quantitative and qualitative data were collected at baseline and four weeks after treatment. The primary quantitative measure was gross energy cost (EC) during walking, obtained from a 5-Minute Walk Test (5MWT), while qualitative semi-structured interviews were performed with each parent and child/adolescent individually. (3) Results: Four weeks after treatment, we did not find any correspondence between expected, measured, and perceived effects. Interestingly, parental perceptions of treatment effects were more consistent than the measured outcomes. We also observed a connection between parental treatment expectations and perceived effects, often related to reduced energy expenditure. Children tended to view their parents as treatment experts and had fewer expectations and perceptions themselves. (4) Conclusions: These findings support the importance of child-centered care, which entails actively listening to children's expectations and perceptions during the treatment process.

3.
Eur J Pediatr ; 183(7): 3019-3028, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38639794

RESUMEN

Although children wish to be included in their own healthcare, they recognize a gap between their right to be heard and their ability to become involved. Despite adaptation of medical consultation styles which suit a more patient-centered approach, data on the current state of child participation in clinical encounters are missing. We aimed to assess actual child participation in a Dutch pediatric clinic. Children aged 4-18 years visiting a pediatric outpatient clinic for consultation after general practitioner's referral were included. Sixteen consultations of six pediatricians were recorded and transcribed verbatim. Quantitative measurement included word count and speech turn; conversation analysis with qualitative appraisal provided data on participatory behavior. Quantitative child participation equaled parent participation in turns (28% vs 29%, respectively), but remained limited in words (relative contribution 11% for child, 23% for parent and 66% for pediatrician). Children spoke on average six words per speech turn. Child age correlated positively with participation in words (p = 0.022, r = 0.566) and turns (p = < 0.001, r = 0.746). Children were mostly involved during social history taking, introduction, and physical examination but did not actively speak during the decision-making process. Children took an active role by instigating talks. Qualitative facilitators included appropriate language and verbal or non-verbal child allocated turns. Adults involved children by asking them questions and verifying their opinions or plans with the child. Teenagers participated most during the entire consultation, while younger children were more likely to lose their focus by the end of the conversation. CONCLUSION: Despite increased turn taking, children's verbal participation remains low in pediatric consultations. If pediatricians and parents maintain a triadic conversation style throughout every stage of the medical encounter, child participation may increase. WHAT IS KNOWN: • Verbal child participation varies between 4 and 17%, measured in turns, words, speech time, or utterances. • Child participation is limited to social talk, laughter, and providing medical information. WHAT IS NEW: • Child speech turns equal parental speech turns (28%), but average relative word count remains low (11%). • Three percent of the children's turns are defined a "contributing in decision making, giving their opinion or give consent," which equals three turns per consultation.


Asunto(s)
Participación del Paciente , Humanos , Niño , Femenino , Masculino , Adolescente , Preescolar , Relaciones Médico-Paciente , Derivación y Consulta/estadística & datos numéricos , Países Bajos , Comunicación , Investigación Cualitativa , Toma de Decisiones , Atención Ambulatoria
4.
J Pediatr Nurs ; 76: 1-15, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38309191

RESUMEN

PURPOSE: Chronic health conditions impact nearly 40% of children in the United States, necessitating parents/caregivers to entrust healthcare responsibilities to youth aging into adulthood. Understanding the parental entrustment process may lead to tailored transition support; however, the concept lacks conceptual clarity, limiting its research and practical applications. DESIGN AND METHODS: Rodgers' evolutionary concept analysis method was used to clarify the parental entrustment of healthcare responsibilities to youth with chronic health conditions. PubMed, CINAHL, and PsycINFO databases were searched without date restrictions, including full-text, English-language, primary source articles related to parent-child healthcare transition preparation. Following title, abstract, and full-text screenings, data were analyzed using a hybrid thematic approach to identify antecedents, attributes, and consequences. RESULTS: Forty-three studies from August 1996 to September 2023 were identified. Antecedents encompass social cues and readiness factors, while attributes involve a) responsibility transfer, support, and facilitation, b) a dynamic process, c) balancing trust and fear, d) navigating conflict, and e) parental letting go. Consequences entail shifts in parental and adolescent roles. Parental entrustment is an iterative process wherein parents guide their maturing child through responsibility transfer via facilitation, support, conflict navigation, and trust building. CONCLUSION: The clarified concept underscores the role of parents/caregivers in empowering youth to manage their health. Introducing a working definition and conceptual model contributes to understanding the processes families navigate in the larger landscape of healthcare transition. PRACTICE IMPLICATIONS: This clarification holds implications for clinicians and policymakers, offering insights to enhance support and guidance for families navigating healthcare transition.


Asunto(s)
Relaciones Padres-Hijo , Padres , Humanos , Enfermedad Crónica , Adolescente , Padres/psicología , Masculino , Femenino , Transición a la Atención de Adultos , Niño , Confianza , Estados Unidos
5.
Patient Educ Couns ; 121: 108106, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38123375

RESUMEN

OBJECTIVE: To examine questioning practices in racially discordant interactions and describe how these practices engendered child-centered care. METHODS: We used applied conversation analysis to analyze a collection of 300 questions directed to children across 10 cases involving children of color and their families in disease reevaluation appointments in pediatric oncology. RESULTS: Our analysis generated two patterns: 1) both the pediatric oncologists' and caregivers built upon one another's talk to enable the child's conversational turn, and 2) the oncologists' reformulated requests as questions to invite the child's permission and cooperation for completing exams and understanding symptoms. CONCLUSION: Children, pediatric oncologists, and caregivers coordinated their actions to enable children to participate as recipients of and respondents to questions. The analysis of real-time interactions illuminates practices for centering children in clinical encounters and the benefits of doing so. PRACTICAL IMPLICATIONS: This study's findings have implications for defining competencies and practices for fostering child-centered communication, creating training materials based on real-time encounters, and identifying strategies for humanizing pediatric patient experiences.


Asunto(s)
Neoplasias , Oncólogos , Niño , Humanos , Oncología Médica , Cuidadores , Comunicación , Neoplasias/terapia , Neoplasias/diagnóstico
6.
Pediatr Blood Cancer ; : e30533, 2023 Jul 04.
Artículo en Inglés | MEDLINE | ID: mdl-37401446

RESUMEN

Child-centered communication in pediatric oncology can be challenging. We aimed to review communication interventions with children about cancer treatment and prognosis to identify potentially effective child-centered communication models and approaches. We updated a previous review on communication interventions in oncology and searched MEDLINE, Scopus, and PsychINFO for studies indexed between October 2019 up to October 2022. We further searched for ongoing studies on ClinicalTrials.gov. Communication interventions targeting pediatric oncology patients (below 18 years), with outcomes of communication, psychological symptoms or satisfaction in the target population were eligible. We identified 685 titles/abstracts, screened the full text of 34 studies and included only one published study and two ongoing studies. The published study tested a communication tool to help clinicians inform adolescents about treatment options and facilitate shared decision-making. No communication models were identified. We drew on knowledge from existing studies and guidelines to develop a new child-centered communication model.

7.
Paediatr Neonatal Pain ; 5(1): 23-30, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36911787

RESUMEN

To examine whether children experience less fear or pain using a child-centered intervention and if there were differences between the intervention group and the control group regarding heart rate, time required for the procedure, success rate for the cannula insertion, and patient satisfaction. A controlled single-center case study of observational design, with one control and one intervention group. Child self-reported fear or pain levels did not reveal any differences for those receiving the intervention compared with controls. However, according to a behavioral observation measure with the Procedure Behavior Check List, effects of the intervention were lower distress in relation to fear and pain during the cannula insertion. The time it took to perform the cannula insertion also decreased significantly in the intervention group. More children in the intervention group reported that they were satisfied with the needle procedure compared with the children in the control group. The child-centered intervention provides reduced observed distress related to fear and pain in children undergoing a cannula insertion and reduced total time by more than 50%. This study found that child involvement in care strengthen their ability to manage a needle procedure.

8.
Child Care Health Dev ; 49(6): 985-994, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-36807909

RESUMEN

BACKGROUND: Early detection of autism spectrum disorder (ASD) is essential to provide children with timely treatment and support. Evidence-based screening measures make it possible to identify children with suspected ASD at an early stage. Although Japan has a universal healthcare system that covers well-child visits, detection rates of developmental disorders, including ASD, at 18 months vary widely between municipalities (0.2%-48.0%). The reasons for this high level of variation are poorly understood. The present study aims to describe the barriers and facilitators of incorporating ASD identification during well-child visits in Japan. METHODS: This is a qualitative study that conducts semi-structured in-depth interviews in two municipalities of Yamanashi Prefecture. We recruited all public health nurses (n = 17) and paediatricians (n = 11) involved in the well-child visit in each municipality and caregivers of children who also participated in the visits during the study period (n = 21). RESULTS: We identified four themes characterizing the process of ASD identification in the target municipalities: (1) Identification of children with ASD is driven by caregivers' sense of concern, acceptance and awareness. (2) Multidisciplinary cooperation and shared decision-making is limited. (3) Skills and training for developmental disabilities screening are underdeveloped. (4) Caregivers' expectations shape the interaction in important ways. CONCLUSIONS: Non-standardization of screening methods, limited knowledge and skills on screening and child development among healthcare providers and poor coordination among healthcare providers and caregivers are the main barriers to effective early detection of ASD through well-child visits. The findings suggest the importance of promoting a child-centred care approach through the application of evidence-based screening measures and effective information sharing.


Asunto(s)
Trastorno del Espectro Autista , Humanos , Trastorno del Espectro Autista/diagnóstico , Cuidadores , Japón , Atención a la Salud , Personal de Salud
9.
Am J Clin Nutr ; 114(6): 2025-2042, 2021 12 01.
Artículo en Inglés | MEDLINE | ID: mdl-34633422

RESUMEN

BACKGROUND: Limited evidence supports the common public health guideline that children >2 y of age should consume dairy with reduced fat content. OBJECTIVES: We aimed to investigate the effects of whole-fat compared with reduced-fat dairy intake on measures of adiposity and biomarkers of cardiometabolic risk in healthy 4- to 6-y-old children. METHODS: The Milky Way Study enrolled 49 children (mean ± SD age: 5.2 ± 0.9 y; 47% girls) who were habitual consumers of whole-fat dairy, then randomly assigned them in a double-blind fashion to remain on whole-fat dairy or switch their dairy consumption to reduced-fat products for 3 mo. Primary endpoints included measures of adiposity, body composition, blood pressure, fasting serum lipids, blood glucose, glycated hemoglobin (HbA1c), and C-reactive protein (CRP) and were assessed at baseline and study end. Pre- and postintervention results were compared using linear mixed models, adjusted for growth, age, and sex. RESULTS: Dairy fat intake was reduced by an adjusted (mean ± SEM) 12.9 ± 4.1 g/d in the reduced-fat compared with the whole-fat dairy group (95% CI: -21.2, -4.6 g/d; P = 0.003), whereas dietary energy intakes remained similar (P = 0.936). We found no significant differential changes between dairy groups in any measure of adiposity, body composition, blood pressure, or fasting serum lipids, glucose, HbA1c, and CRP. CONCLUSIONS: Our results suggest that although changing from whole-fat to reduced-fat dairy products does reduce dairy fat intake, it does not result in changes to markers of adiposity or cardiometabolic disease risk in healthy children.This trial was registered at www.anzctr.org.au as ACTRN12616001642471.


Asunto(s)
Adiposidad , Factores de Riesgo Cardiometabólico , Biomarcadores , Niño , Preescolar , Productos Lácteos/efectos adversos , Femenino , Hemoglobina Glucada/metabolismo , Humanos , Lípidos , Masculino , Obesidad , Proyectos Piloto
10.
Compr Child Adolesc Nurs ; 43(2): 151-158, 2020 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-30632814

RESUMEN

Professor Linda Shields and Dr Mandie Foster from Charles Sturt University and Edith Cowan University in Australia discuss several models of care for children and families that exist and the prospect of using conversations with children and families as an intervention within healthcare to facilitate a child and family centered care approach.


Asunto(s)
Enfermería de la Familia/métodos , Relaciones Profesional-Paciente , Australia , Comunicación , Enfermería de la Familia/tendencias , Humanos
11.
J Pediatr Nurs ; 43: e44-e51, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30241782

RESUMEN

PURPOSE: The aim of this study was to gain a deeper understanding of how children living in two homes after parents' separation experience their everyday lives. DESIGN AND METHODS: An inductive qualitative design was chosen for the study using a hermeneutic phenomenological approach. Twelve children aged 10-13 years, and living in two homes, were interviewed. The data analysis used the four fundamental lifeworld existential dimensions: "lived body", "lived time", "lived space" and "lived human relations" as guidelines for reflections during the research process. RESULTS: The overall understanding of the children's experience was that living in two homes was like living in two worlds. The children struggled with feelings of loss, loyalty and attachment. The children's experiences are described in four themes and nine subthemes. The themes are: Facing a changing home, Bridging new relations, Longing for continuity, Feeling loyalty. CONCLUSIONS: Parents' separation and living in two homes can be stressful for children. Children felt torn between their feelings of loyalty toward their parents, and their longing for calm and stability in their everyday life. A child-centered approach is therefore important to develop support focusing on the children's needs and perspectives after their parents' divorces. PRACTICE IMPLICATIONS: A deeper understanding of children's experience of living in two homes provides nurses who care for children in the community or health care service with knowledge of children's need for support. Children whose parents have recently divorced, and children who live in families with parents experiencing high levels of conflict after the separation need special attention.


Asunto(s)
Protección a la Infancia/psicología , Divorcio/psicología , Calidad de Vida , Adaptación Psicológica , Adolescente , Niño , Servicios de Salud Comunitaria/organización & administración , Femenino , Humanos , Masculino , Relaciones Padres-Hijo , Investigación Cualitativa , Medición de Riesgo , Estrés Psicológico
12.
J Pediatr Nurs ; 42: 45-56, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30219299

RESUMEN

BACKGROUND: Increasingly within healthcare, different kind of 'centeredness' are used to denote the focus of care which can create confusion for practitioners. METHODS: A concept analysis was undertaken to identify the antecedents, attributes and relationship between family-, person-, and child-centered care. PubMed and CINAHL were searched from 2012 to 2017 and thirty-five papers were reviewed. RESULTS: Both person- and child-centered care are focused on individuals, a symmetric relationship and the tailoring of care to individual needs while family- centered care is focused on the family as a unit of which the child is included. Person-centered care focuses on an adult person with autonomy, while the focus in child-centered care is the individual child as an own actor with rights but still close to a family. CONCLUSION: It appears at a conceptual level that the concepts of centeredness contain both similarities and differences. Finding ways to structure nursing and focus the care that respects a person's dignity and humanity is essential in healthcare and should be a major goal of health policy and health systems worldwide. IMPLICATIONS: The identification of the antecedents and attributes embedded in the concepts may help raise professionals' awareness of the different foci and how this will influence one's practice. There is a need to recognize strengths and weaknesses of the centeredness in different settings and environments. Furthermore, it is important to know which approach to apply within different situations so that quality care is enabled for every person, child and family.


Asunto(s)
Servicios de Salud del Niño/organización & administración , Protección a la Infancia/estadística & datos numéricos , Atención Dirigida al Paciente/organización & administración , Adulto , Niño , Medicina Basada en la Evidencia , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Humanos , Relaciones Médico-Paciente
13.
Phys Occup Ther Pediatr ; 38(4): 417-426, 2018 11.
Artículo en Inglés | MEDLINE | ID: mdl-28753053

RESUMEN

AIMS: This article describes a qualitative study aimed at producing child-centered guidelines for the administration of a measure of children's advanced gross motor skills, the Challenge. The purpose of the guidelines is to promote collaborative interpretation and application of results. METHODS: The study was conducted in three Canadian cities and included 31 children with cerebral palsy (GMFCS Level I or II) ages 8 to 18 and one parent/caregiver per child (N = 62 participants). Following Challenge administration, each child and one of their caregivers took part in separate qualitative interviews. Analyses were oriented to exploring understandings of the purposes of testing, impressions of the child's performance, and perceptions of how results might inform activity choices and interventions. RESULTS: Three themes were generated: investments in doing well; I know my child/myself; and caregivers' interpretations of child's performance. Themes were then integrated with principles of child and family-centered care to develop The Challenge Engagement Guidelines directed at reducing test anxiety and enhancing shared decision making. CONCLUSIONS: The Guidelines are the first of their kind to integrate child and family-centered principles into the administration protocol of a motor measure. Although developed for the Challenge, the principles have applicability to other rehabilitation measures.


Asunto(s)
Parálisis Cerebral/diagnóstico , Destreza Motora/fisiología , Examen Neurológico/métodos , Participación del Paciente/métodos , Atención Dirigida al Paciente/métodos , Adolescente , Canadá , Cuidadores , Niño , Toma de Decisiones , Femenino , Humanos , Masculino , Padres , Guías de Práctica Clínica como Asunto , Investigación Cualitativa
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