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Abstract

Adult participants play a pivotal role in doctor-parent-child interactions at the general practitioner's (GP's) surgery. The child's opportunities to participate are rather limited and parental speaking for the child is, in a way, institutionally co-constructed. This study aimed at further characterizing the relationships within this triad by developing a typology of doctor-parent-child interactions, which classified adult behavior in terms of supporting versus non-supporting child participation. The child's participation was described in terms of display of involvement and turning for support. Analyses of 105 videos show that in most consultations, both GP and parent displayed non-supportive behavior. Despite the GPs' initial efforts to involve the child in the interaction, 90% of the consultations ended up in a non-participatory way. During this last segment of diagnosis and treatment information, the child's voice was hardly heard, as reflected in the minimal involvement displayed and the absence of turning to the parent for support. It is concluded that the bi-directional perspective chosen in this analysis allowed for a better understanding of the underlying mechanisms leading to the stereotypical picture in both literature and actual practice of triadic medical interactions being dominated by both adult participants. The low degree of child participation should not solely be seen as a consequence of adult behavior, but rather as a co-construction of all three participants. The results are discussed from a pedagogical perspective, and implications for medical practice are formulated.

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... Cases are handled according to a set of conventions favouring long uninterrupted turns by the prosecutor, the defence counsel (or solicitor) and the judge, in which they all speak about -rather than directly address -the defendant. In the medical field, this type of interaction has been called "paternalistic" (Tates et al. 2002). When used for court proceedings, interpreting is often provided only for the defendant, as the other parties involved in the case master the language s/ he speaks. ...
... In terms of Goffman's (1981) participation framework, the court's setting presents similarities with the "paternalistic interview style" identified by Tates et al. (2002). In a "paternalistic interview style", the person who is the topic of conversation is a bystander in the interaction. ...
... In a "paternalistic interview style", the person who is the topic of conversation is a bystander in the interaction. Typical examples of the paternalistic interview style, as described by Tates et al. (2002), are found in medical contexts involving a doctor, a child patient and one of the parents: in that study, the participation framework involves the doctor and the parent as active participants; the child, whose health is being discussed, is only a bystander -a witness of the interaction, who takes no part in it herself. The same is found in the proceedings of a Correctional Court: defendants are the main topic of conversation, but their involvement in the interaction is minimal. ...
Article
This paper investigates an interpreter’s handling of a distinctive ‘paternalistic’ (following Tates et al. 2002) participation framework in a Belgian criminal court, whereby the defendant is the topic –but not the addressee –of the interaction. The hearing analysed, which was recorded and transcribed, was part of a drugs trial. An experienced court interpreter provided consecutive and whispered interpreting, almost always asymmetrically, so that the French-speaking defendant could follow everything said to/about her in Dutch; the Dutch-speaking bench and counsel listened to the defendant’s French. The paternalistic participation framework seems to prompt various strategies by the interpreter, leading her to disregard major aspects of the code of ethics she works by. First, she sets up a separate participation framework with the defendant as the addressee of the interpretation (the ‘interpreter’s dyad’), systematically using the deictic coordinates of this framework in presenting the court’s interaction. Second, she tends sometimes to position herself in the role of principal, arguably as a result of the dyad arrangement. Finally, though interpretation is required only for the defendant, the latter’s French is occasionally interpreted into Dutch for the court –sometimes at the interpreter’s own initiative, possibly to protect the interests of the defendant in response to a verbal challenge from the judge.
... A comunicação em contextos pediátricos é fundamentada na díade médico-cuidador: mesmo quando o profissional se dirige à criança, geralmente o conteúdo da comunicação reflete aspectos lúdicos e as perguntas direcionadas à criança são comumente mediadas pelo cuidador (Jongudomkam, Aungsupakom & Camfield, 2006;Nova et al., 2005;Tates et al., 2002). Os adultos têm papel principal na interação do atendimento pediátrico e a estrutura das consultas não permite a real inserção do paciente pediátrico. ...
... Os adultos têm papel principal na interação do atendimento pediátrico e a estrutura das consultas não permite a real inserção do paciente pediátrico. Consequentemente, as oportunidades de participação infantil são limitadas pelos médicos e pais, dificultando assim a atuação da criança em negociações, explicações e decisões sobre seu próprio tratamento Tates & Meeuwesen, 2001;Tates et al., 2002). Cabe ainda destacar que a escassez de incentivo e suporte dos cuidadores e médicos à participação efetiva da criança em consultas reflete uma coconstrução social e institucional, refletindo a assimetria cultural historicamente determinada na relação entre adultos e crianças Outsubo & Becker, 2005;Tates & Meeuwesen, 2000;Tates & Meeuwesen, 2001;Tates et al., 2002). ...
... Consequentemente, as oportunidades de participação infantil são limitadas pelos médicos e pais, dificultando assim a atuação da criança em negociações, explicações e decisões sobre seu próprio tratamento Tates & Meeuwesen, 2001;Tates et al., 2002). Cabe ainda destacar que a escassez de incentivo e suporte dos cuidadores e médicos à participação efetiva da criança em consultas reflete uma coconstrução social e institucional, refletindo a assimetria cultural historicamente determinada na relação entre adultos e crianças Outsubo & Becker, 2005;Tates & Meeuwesen, 2000;Tates & Meeuwesen, 2001;Tates et al., 2002). ...
Article
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Apesar dos recentes avanços técnicos na assistência ao paciente pediátrico, a literatura ainda indica a importância de melhorias na interação comunicativa envolvendo médicos, cuidadores e crianças. Neste estudo, são apresentados aspectos relevantes relativos à comunicação no atendimento pediátrico, em especial as características e os desafios deste processo de interação no contexto onco-hematológico, por se tratar de um tratamento potencialmente estressante e de longa duração. De modo especial, a satisfação com a qualidade da comunicação tem sido apontada como elemento essencial no cuidado pediátrico. Destaca-se ainda a necessidade de maior inclusão da criança na comunicação durante os atendimentos, bem como outros aspectos importantes, referidos pelos cuidadores, que possam proporcionar uma melhor qualidade da interação. Ao fim deste estudo, são apresentadas sugestões para pesquisas e intervenções psicossociais referentes à comunicação entre médico, cuidador e paciente pediátrico, que possam promover a diminuição de custos comportamentais geralmente associados ao tratamento do câncer na infância.
... [2][3][4][5][6] Studies have found that physicians infrequently facilitate youth input 7 and parents interfere with physician-child communication. 4,6,8 National pediatric leaders have recognized the importance of increasing child and adolescent participation in healthcare encounters. 9,10 Adolescents have reported preferring direct communication with them rather than with their parents 11 and valuing direct communication and responsiveness to their concerns. ...
... 11,27 By contrast, it was expected that physician interference with child participation would be negatively associated with child satisfaction. Consistent with previous research, it was hypothesized that physician and parent affective communication and facilitative communication directed at the child would be positively associated with child verbal participation 8,[28][29][30] and that parent and physician interference would be negatively associated with child participation. 4,8 Finally, it was hypothesized that physician facilitative communication, child verbal participation, and child satisfaction would correlate positively with child's age 2,5,6,8,26,31 and that child verbal participation would be positively associated with parent education levels. ...
... Consistent with previous research, it was hypothesized that physician and parent affective communication and facilitative communication directed at the child would be positively associated with child verbal participation 8,[28][29][30] and that parent and physician interference would be negatively associated with child participation. 4,8 Finally, it was hypothesized that physician facilitative communication, child verbal participation, and child satisfaction would correlate positively with child's age 2,5,6,8,26,31 and that child verbal participation would be positively associated with parent education levels. 5,6,32 ...
Article
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Background Child participation in pediatric medical visits is low. In this pilot study, we sought to better understand relationships between observed communication and child-reported perceptions of communication in a clinical setting. Materials and methods For this cross-sectional observational study, pediatric gastroenterology appointments (n=39) were videotaped and coded to quantify various adult affective (eg, chit-chat, empathy) and facilitative (eg, asking questions, encouraging responses) behaviors toward the child, interference with child participation (eg, interrupting or ignoring child), and child verbal participation. Post-visit surveys assessed child perceptions of having voice in the clinical encounter, ease of understanding, and satisfaction with communication. Results Parent and provider chit-chat was associated with child-reported ease of understanding. Provider facilitation was positively associated with child participation, but affective communication strategies were not. Physician interference was negatively associated with ease of understanding but positively associated with perception of voice. Conclusion Facilitative communication may improve outcomes by enhancing child participation and thus exchange of medical information, whereas chit-chat appears to positively impact children’s perceptions of communication.
... 7 The reasons for this lack of inclusion are believed to be complex. 9,10 First, it has almost been axiomatic over the decades that children are unable to contribute reliably to discussions about their symptoms and conditions due to their limited linguistic, cognitive and psychosocial abilities. This process is made more difficult by the complexity of managing the communication process with inclusion of three participants (ie the child patient, the parent and the health-care provider). ...
... This process is made more difficult by the complexity of managing the communication process with inclusion of three participants (ie the child patient, the parent and the health-care provider). 10 Second, it is not clear whether parental presence will encourage or restrict child participation in the health-care consultations. Some research suggests parents tend to take over the turns that doctors provided for children as the parent played an "executive" role during the consultation to protect their children's welfare. ...
... Some research suggests parents tend to take over the turns that doctors provided for children as the parent played an "executive" role during the consultation to protect their children's welfare. 6,7,10 On the contrary, other studies highlight the key role of parents in encouraging their children's participation in the clinical setting. 11,12 Furthermore, previous studies show that health-care providers struggle to address child-centred care issues, as on one hand, they want to involve children in their care; however, on the other hand, they are ambivalent about the level of child's involvement. ...
Article
Full-text available
Background The oral health promotion sessions for young children and parents in a clinical setting pose challenges to the dental team. Aim To apply PaeD‐TrICS (Paediatric dental triadic interaction coding scheme) to investigate the interaction of child, parent and dental nurse and determine the effect of nurse and parental behaviours on child participation within an oral health promotion session. Method A video observational study was applied. The sample consisted of a dental nurse and 22 children aged 2‐5 years in a general dental practice in Scotland. Behaviours were catalogued with time stamps using PaeD‐TrICS. Analysis of behavioural sequences with child participation as the dependent variable was conducted using multilevel modelling. Results Children varied significantly in their participation rate. The statistical model explained 28% of the variance. The older the child and longer consultations significantly increased child participation. Both nurse and parental behaviour had immediate influence on child participation. Parental facilitation had a strong moderating effect on the influence of the nurse on child participation. Conclusions Child participation was dependent on nurse and parent encouragement signalling an important triadic communication process. The coding scheme and analysis illustrates an important tool to investigate these advisory sessions designed for delivering tailored messages to young children and parents. Patient or Public Contribution The dental staff, child patients and their parents were involved closely in the conduct and procedures of the present study.
... Yet despite this, children in the 6-12 year group have little meaningful involvement in their primary care consultations, participating in less than 20% of interactions and communication [6]. 90% of paediatric GP consultations end up in a doctor-adult dyad [11]. ...
... Five main themes emerged from the data ( Figure 1). Verbatim quotes are included and are coded by Focus Group (FG 1-3), Participant number (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16), and gender (M or F). ( see Table 1) ...
... Parents described how a friendly and engaging GP was more likely to result in their child participating than a stern doctor. Videoed consultations in the Tates et al. [11] study support this finding, showing that when doctors were supportive and engaging, children displayed more active involvement. Parents in our research believed that GPs lacked sufficient training specifically in paediatrics. ...
Article
Background The active involvement of children in their health care has been shown to increase compliance and improve outcomes. Despite this, children in the 6–12 year group have little meaningful involvement in General Practitioner (GP) consultations, contributing to less than 20% of interactions. Aim To explore parents’ perceptions on the importance and feasibility of child-centred consultations. Methods Purposive sampling was used to recruit parents from a primary school in London. Three audio recorded focus groups were conducted, transcribed verbatim, and subsequently thematically analysed. Results While most parents acknowledged the importance of child-centred consultations, they legitimately questioned their child’s ability to make decisions. Parents attributed low child participation to several factors including the perceived approachability of the GP, whether their child had met the doctor before, their child’s personality and the general lack of time during consultations. Parents described their own anxiety and worries surrounding their child’s health care which lead to their role as their child’s advocate, decision maker and protector during GP consultations. Conclusion This study confirms the importance of child-centred consultations and highlights numerous barriers which need to be overcome to achieve greater child involvement in consultations. If the findings were to be replicated in future larger studies, then it could lead to changes in both training and, crucially, how child-parent-doctor consultations should be carried out in general practice.
... Although children's participation has been increasing, these patients remain excluded from interaction and their participation is restricted to 2 to 14% of the communicative process (Tates & Meeuwesen, 2001) during small talk or when providing basic information (Coyne, 2008;Hallström, 2004;Nobile & Drotar, 2003;Nova, Vegni, & Moja, 2005;Rotenberg et al., 2008;Tates, Elbers, Meeuwesen, & Bensing, 2002a;Tates, Meeuwesen, Elbers, & Bensing, 2002b;Van Dulmen, 2004;Van Dulmen & Holl, 2000;Vaknin & Zisk-Rony, 2010;Wissow & Kimel, 2002). However, four-year-old children already understand basic information related to self care, identify symptoms, have doubts, experience emotional issues related to the treatment and may feel guilty about the disease (Buckley & Savage, 2010;Gordon et al., 2010;Knighting, Rowa-Dewar, Malcolm, Kearney, & Gibson, 2010;Märtenson, Fägerskiöld, & Berteró, 2007;Nova et al., 2005;Vatne, Slaughter, & Ruland, 2010). ...
... It is important to point out that pre-consultation lists may help address the children's demands during consultations, perhaps indirectly when focusing on provision of information, as found by the differences between the three phases of the study. The literature highlights the need for including children as active participants in the health-related processes and the importance of the psychosocial interventions for increasing patient's participation (Coyne, 2008;Hallström, 2004;Nobile & Drotar, 2003;Nova et al., 2005;Rotenberg et al., 2008;Tates & Meeuwesen, 2000, 2001Tates et al., 2002aTates et al., , 2002bVan Dulmen, 2004;Van Dulmen & Holl, 2000;Vaknin & Zisk-Rony, 2010;Wissow & Kimel, 2002). ...
Article
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This cross-sectional study present effects of pre-consultation lists on caregivers’ and children’s communicative behavior. Thirty-two dyads caregiver-child took part in this research, divided in three groups concerning the study design: Baseline 1, Intervention phase, and Baseline 2. Children and caregivers were individually interviewed before consultations on pediatric cancer treatment, in order to list doubts, expectations, and estimated issues to the medical visit. These themes were written down on a sheet of paper, attached to the child’s medical record cover, and would then be used as a memo in the following consultation. Results show that pre-consultation lists produced no effects on children’s behavior, however the procedure was associated to specific doubts discussed by caregivers regarding dietary recommendations, coping with side effects, child development, biological aspects of cancer, and school activities. This study presents a low cost procedure that may contribute to tailor communication in pediatric settings.
... Esses participam das consultas, fazendo perguntas ao médico e/ou respondendo às perguntas dele sobre o problema de saúde da criança. Embora a literatura em Psicologia Pediátrica mostre a importância da participação mais ativa da criança nesse processo de comunicação, ainda é a interação verbal médico e cuidador que prevalece durante as consultas e/ou procedimentos como forma principal de troca de informações e de orientações médicas (Tates, Elbers, Meeuwesen, & Bensing, 2002). Por essa razão, faz-se importante conhecer sobre a perspectiva de cuidadores de crianças com dermatose crônica, quais são os fatores que eles identificam como sendo desencadeantes dos sintomas e verificar se há diferença no conteúdo desses relatos em relação ao tipo de doença e ao perfil comportamental das crianças segundo a sua avaliação. ...
Article
Full-text available
Mothers are responsible for the health care of children with chronic dermatoses. Therefore, it is important to know the triggering events of symptoms according to maternal assessment and if there is a relationship of that attribution to the type of disease and behavioral profile of children. Reports of 13 mothers of clinic children (internalizing and/or externalizing profile of CBCL) and with atopic dermatitis, vitiligo or psoriasis were analyzed. Five categories (environmental, biological and genetic, situational, from the child’s interaction with mother/father and emotional factors) were compared by (1) type of dermatosis and (2) child’s profile. There was attribution to environmental, biological and genetic (atopic dermatitis), situational, from the interaction with mother/father and emotional factors (vitiligo). Emotional factors were attributed to children evaluated as clinical by the two profiles and by the internalizing only, but not for the externalizing. These results may help in medical decisions related to the treatment and to the pertinence of including psychological accompaniment.
... Los niños son capaces de comprender más conceptos sobre salud y enfermedad de lo que generalmente se piensa, comprobándose que una comunicación directa entre el niño y el profesional sanitario mejora la relación entre ambos, en términos de satisfacción con el cuidado y la adherencia a los tratamientos, y a una mejora en variables de salud (Tates & Meeuwesen, 2001). El control parental de la interacción entre el niño y el profesional sanitario, parece ser independiente de la edad del niño, y el personal sanitario perece estar más inclinado a implicar a los niños de mayor edad (Tates, Elbers, & Bensing, 2002). Estudios sobre comunicación entre adolescentes con enfermedades crónicas y profesionales han mostrado que los adolescentes preferían participar de forma activa en las decisiones sobre su salud aunque en la realidad, su participación en las consultas era muy baja y eran los padres los más implicados en este proceso. ...
Technical Report
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La utilización de estas estrategias podría mejorar la salud y el bienestar de los pacientes de manera global.
... Some studies suggest that HCP struggle to manage tripartite (HCP, teenagers and families) interaction, which contributes to a diminished role for teenagers. 9,12 Implementation of principles may be further hampered by conflicts for HCP created by the principles themselves. For example, teenagers' ...
Article
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Purpose: We report on an in-depth interview and participant observation study that uses data from multiple sources to determine how the involvement of teenagers with leukaemia is understood and enacted in healthcare. In this article, we investigate healthcare professionals' (HCP) views of teenagers' involvement in decisions about their care and treatment for leukaemia. Methods: We conducted participant observation at 98 multi-disciplinary meetings and 95 open-ended, semi-structured interviews and informal conversations with clinical teenage cancer teams at one UK tertiary referral centre. Data were collected over a 9-month period, audio-recorded, transcribed verbatim and analysed using principles of grounded theory. Results: HCP revealed principles relating to the involvement of teenagers with leukaemia in decision making: (1) do the 'right thing', (2) act on the care and treatment preferences of the teenager and (3) openly disclose information about the teenagers' condition. These principles were prioritised and utilised uniquely in each situation, reliant on three mediating factors: (1) family communication styles, (2) stage of illness and (3) nature of the disease. Conclusions: Specialist haematology teams are aware of the individual, and shifting and situational preferences of teenagers. They follow the lead which teenagers give them with regard to these preferences. If actual practice with regard to the involvement of teenagers is found to be wanting, this study refutes that this should be ascribed to insensitivity on the part of HCP about teenagers informational and decisional role preferences.
... Compared to the healthcare professional factors, parental factors were more often discussed in the research studies. The existing studies reported that parents can both facilitate and hinder children from participating in discussion and decisions (Runeson et al., 2001;Tates et al., 2002;Bereford & Sloper, 2003;Young et al., 2003;Coyne, 2006a;Savage & Callery, 2007). For example, from an observational study of 24 children by Runeson and colleagues' (2002a), as discussed above (see section 3.4.2), the child's opinion was ignored in 72 of 137 situations, while in the remaining situations, staff listened and acted according to the child's desires. ...
Thesis
Background: The rights of children to freedom of expression and receiving information are underpinned by Articles 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC) (1989), which was ratified by the Malaysian government in 1995. There has been increasing shifts toward recognising the importance of children’s rights with many initiatives to realise and uphold the rights of children in Malaysia. However, no previous studies of children’s participation have been conducted in Malaysia. The aim of this study was to explore children’s participation in decisions regarding their nursing care from the perspective of the children, their parents, and nurses in an oncological ward in Malaysia. Methods: This was a focused ethnographic study. Participant observation was carried out with 61 participants (21 children, 21 parents, and 19 nurses) in the paediatric oncology-haematological ward, Malaysia. Semi-structured interviews were conducted with 21 participants (6 children, 7 parents, and 8 nurses). The existing documents pertinent to the research focus were examined to validate the participant observations and interview findings. Data were analysed using Roper and Shapira’s (2000) focused ethnographic data analysis techniques. Findings: There were different degrees of the participation of children in decisions among children diagnosed with leukaemia, including: being physically present, being informed, being consulted where children can express their wishes and opinions during the provision of nursing care, and being able to make their own decisions in relation to their nursing care. The degrees to which children participated in decisions fluctuated throughout the course of their hospitalization; moving from lesser degrees of participation (passive participant) to greater involvement (active participant) and vice-versa. The extent to which children participated in decisions were significantly influenced by the children’s preferences for participation. The preferences of children also fluctuated over the course of their illness and treatment. There were several factors contributing to children’s participation in decisions including; i) interpersonal relations in the child-parent-nurse interactions; ii) experiences of the child (veteran or novice); iii) attitude of nurses; iv) parental role; and v) the ward policy. Conclusion: The children want to be involved and really appreciate participation in communication and decisions but their opportunities for participation are somewhat limited. This study calls for a flexible model to assess children’s preferences for participation and different forms of participation for children in relation to decision-making in paediatric oncology.
... The adolescent patient will have a possibility to learn and benefit from the emerging information and knowledge and to give informed consent to his/her treatment. [27][28][29] The dental staff should do their best when interacting with adolescents while caring for their oro-dental health, including prevention. If the dental staff does not have time enough to give individualized care and pay attention to the fact that adolescents are neither children, nor adults, the confidence of patients of this age in dental care may decline. ...
Article
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Background There is a lack of studies about how adolescents experience the interaction during dental visits. The experienced interaction during dental visits will influence how adolescents take care of their oro‐dental health, and how they attend at the dentist's office. Aim To explore the interaction experiences during dental visits of 18‐year‐olds with or without a history of caries. Design The dental health status at age 15 years was used as a predictor of subsequent interaction experiences with the dental staff. The dental health status was assessed by the Decayed Missed Filled Teeth index and interaction experiences by the Patient Dental Staff Interaction Questionnaire. Results Adolescents with a history of caries experienced the interaction at dental visits significantly more often negatively than adolescents with healthy teeth. The association was significant after adjustment for potential confounding factors (sense of coherence, gender, and duration of maternal basic education). Conclusions Understanding, encouraging, and appropriate interaction with adolescents with caries may make patients more positive and receptive for treatment and self‐care.
... 12,13 In addition to one-on-one counseling of parents with strabismus, provision of relevant sources to seek knowledge on strabismus is recommended to improve the level of knowledge among caregivers of children with strabismus. 14 Among the participants, the level of knowledge was uniformly low, whether it was related to epidemiology, presentation or mode of management. This was a bit unusual. ...
Article
Full-text available
Background: For early detection and timely management of strabismus in children, parent’s cooperation is essential. It depends upon their level of awareness. The objective was to describe the determinants and the level of knowledge and attitude towards strabismus among parents of children with strabismus in Saudi Arabia.Methods: This cross-sectional study was conducted in 2018 at a hospital in Qaseem, Saudi Arabia. Consented parents of children with strabismus presenting to Qaseem University eye clinic were interviewed. Data were anonymously collected on participant demographics and the child’s strabismus. The survey interview consisted of 8 questions related to signs, symptoms, and management of strabismus. Three questions related to the attitude towards strabismus among parents/caregivers. Two separate questions queried the source of knowledge and possible barriers, respectively.Results: Each parent of 81 children was interviewed. An excellent level of knowledge of strabismus was noted for 41 participants (50.6% at 95%CI 39.7-61.5). A positive attitude towards strabismus was noted in 57 participants (70.4% at 95% CI 60.4-80.3). No history of surgery was statistically associated to an excellent level of knowledge (P<0.001). Gender (P=0.7), age (P=0.7), father’s education (P=0.3), mother’s education (P=0.5), type of strabismus (P=0.8) were not associated with the level of knowledge. High cost (43.2%) and false beliefs (53.1%) were the main barriers to medical consultations.Conclusions: Parents of children with strabismus presenting to a tertiary care eye hospital had good knowledge about the signs, symptoms and management of strabismus. Addressing barriers perceived by parents may improve early presentation rates of children with strabismus allowing timely management.
... The emphasis on young patients with psychosocial or psychiatric complaints is motivated by the unique communicative difficulties presented by the pediatric mental health setting as well as the triadic, developmentally dependent nature of pediatric discourse more generally (Breuner & Moreno, 2011). Prior research (Hutchby, 2002) suggests that the identification of resistive strategies and their associated communicative barriers in this particular situational context may be especially useful, as children's participation in consultations is largely a function of physicians' efforts to engage and involve their pediatric patients (Tates, Elbers, Meeuwesen, & Bensing, 2002). ...
Article
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Barriers to effective provider–patient communication take many forms that can be difficult to recognize and appropriately address. This paper offers probabilistic indicators for one such form, patient-produced “I don’t know” (IDK), distinguishing its use as a cognitive claim and its use as a strategy for resisting discussion of sensitive topics. A total of 95 audio-recorded psychiatrist–child interactions are drawn from a US-wide corpus of physician–patient consultations. From these, 376 patient-produced IDKs are extracted and coded for linguistic/social factors, including form, function, prosody, age, gender, and primary diagnosis. Two multiple logistic regressions are performed to determine the predictors of cognitive and resistive IDK functions respectively. Cognitive IDK uses are associated with the full form (p < 0.01) and unstressed prosody (p < 0.01). Use of resistive IDK is correlated with decreasing patient age (p < 0.01) and emotionally labile mental health diagnoses (p < 0.01). Cognitive and resistive IDK uses have distinctive linguistic and social distributions in psychiatrist–child interactions, where cognitive uses have two objectively identifiable linguistic characteristics and resistive uses are associated with certain patient types. Providers may learn to recognize cognitive and resistive IDK uses, thus acquiring the ability to correctly interpret interactional cues relevant to the diagnosis and treatment of pediatric mental health conditions.
... Although the principle of children's participation is endorsed by different organizations, research in the healthcare setting indicates that children experience obstacles to participating in the decision-making process (Coyne et al., 2014;Hallström and Elander, 2005). Children are rarely involved in consultations or decision-making in their healthcare (Coyne 2008) and observational studies have revealed that children are often relegated to a non-participant status with information-giving directed at the parent as opposed to the child (Tates et al., 2002;Wassmer et al., 2004). Children's needs for participation in decisions may be relegated because parents are the focus and additionally adults (professionals and parents) can limit children's involvement because of a need to protect (Coyne et al., 2014). ...
Article
In this article, we argue for a conceptual move from family-centred care (FCC) to a child-centred care approach and the implications for clinical nursing practice. Firstly, we argue that the parents and professional dominance constructs an asymmetric relationship towards the child, which may take away the focus from the child; Secondly, we need to renew efforts to promote the fundamental principles of protection, promotion and participation rights for children and young people according to the United Nations Convention on the Rights of the Child declaration and thirdly, we need to strengthen the child's perspective and to view the child as an agent representing own experiences and wishes to be respected and negotiated.
... Unfortunately, there are still many HCPs who are not completely familiar with SDM or are not able to implement SDM due to limited consultation time. Previous research showed that HCPs rarely discuss treatment decisions with children [36]. A recent study found that not only children but also Fig. 2 Comparing decision-making preferences for intervention and control group Eur J Pediatr a trustful relationship between parents and HCP is helpful in child's treatment [37], Parents mainly expect from HCP to give reassurance and answer their questions [38]. ...
Article
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The “3 Good Questions” program was developed to increase shared decision making. The current pilot-study determined the feasibility of these questions to increase shared decision-making in Dutch pediatric medicine. Pre-/postintervention surveys were used to include children (10–18 years) at pediatric outpatient clinics of four hospitals in the Netherlands. After their appointment, two different groups of children completed the questionnaires. Group 1 filled in the survey before the intervention; group 2 completed the survey after active implementation of the “3 Good Questions” program. The primary outcome was to determine the feasibility (reach, applicability). Secondary outcomes were related to patient involvement in healthcare and treatment decisions and decision-making process between child and healthcare professional. In total, 168 and 114 children in groups 1 and 2 (61 vs 63% female, P = 0.68; age 13.3 ± 2.4 vs 13.8 ± 2.4 years, P = 0.72), respectively, completed the questionnaire. In group 2, 44% of children were aware of the “3 Good Questions”, of whom 18% posed ≥ 1 of the “3 Good Questions” during their appointment (feasibility). The “3 Good Questions” program led to more shared decision-making (SDM-Q-9: P = < 0.001;95%CI: − 2.43 to − 1.17). The majority of children who have read or heard of the “3 Good Questions” would recommend this program to other children. Conclusion: Implementation of the “3 Good Questions” program seemed feasible, although it is necessary to further explore the implementation of this program at national level as a simple way for children and healthcare professionals to share decisions in practice.What is known • Children have the right to be included in decision-making, and inclusion can improve patient satisfaction and quality of care, and reduce costs. • The “3 Good Questions” program was successfully implemented in adult healthcare to increase shared decision making, and therefore these “3 Good Questions” have been adapted to a child version. What is new • In this pilot study, we found that the implementation of the “3 Good Questions” program to increase shared decision-making in pediatric medicine seemed feasible. Although it is necessary to further explore the implementation of the “3 Good Questions” program at national level as a simple way for children and healthcare professionals to share decisions in practice.
... Parents (or guardians, referred to hereafter as parents for simplicity) may restrict their child's participation by speaking on behalf of the child or excluding the child from participating in treatment planning, and healthcare providers may also discourage the child's involvement by directing questions exclusively to the parent (e.g., Carpenter et al., 2013;Van Dulmen, 1998) or failing to use age-appropriate language (e.g., Tates et al., 2002;Worobey et al., 1987). Within pediatric triads, the tendency for parents and providers to minimize children's participation during medical interactions can arise from the perception that children lack the competence to meaningfully contribute to discussions of medical care (Cahill & Papageorgiou, 2007;Coyne & Harder, 2011). ...
Article
Communication in healthcare represents the complex interplay between multiple individual and contextual factors unfolding over the course of the medical encounter. Despite significant improvements in patient-centered care delivery, studies of health communication typically focus exclusively on clinical interactions between adult patients and their clinicians. Much less is known about non-dyadic interactions, such as pediatric triads involving a child patient and accompanying parent. Understanding the dynamics of triadic pediatric healthcare communication is the first step toward evaluating and ultimately optimizing these healthcare interactions. Thus, we undertook a mixed-method analysis of 28 audio recorded triadic medical interactions between healthcare providers, pediatric asthma and allergy patients, and their parents to explore the prevalence of various features of these interactions. Our findings point to mechanisms through which healthcare providers and parents may facilitate or hinder children’s involvement in their own asthma and allergy care, including interruptions, unclarified technical medical language, the flow of information exchange, and the formation of dyadic conversational partnerships (coalitions) between providers and parents. Our analyses further reveal that children’s participation during their medical visits was minimal (13% of the interaction). Providers in our sample elicited input directly from pediatric patients more often than from parents, though the difference was small. Taken together, these findings provide a foundation on which to develop training and communication interventions to ensure that children have a voice in their medical care.
... Parents (or guardians, referred to hereafter as parents for simplicity) may restrict their child's participation by speaking on behalf of the child or excluding the child from participating in treatment planning, and healthcare providers may also discourage the child's involvement by directing questions exclusively to the parent (e.g., Carpenter et al., 2013;Van Dulmen, 1998) or failing to use age-appropriate language (e.g., Tates et al., 2002;Worobey et al., 1987). Within pediatric triads, the tendency for parents and providers to minimize children's participation during medical interactions can arise from the perception that children lack the competence to meaningfully contribute to discussions of medical care (Cahill & Papageorgiou, 2007;Coyne & Harder, 2011). ...
... A systematic review by Martenson and Fagerskiold found both that children valued self-determination and that children's decision-making competence was more dependent on others (i.e., parents, health care professionals) than on individual capacity (Martenson & Fagerskiold 2008). In a study by Tates et al. (2002), the child's role in doctorparent-child interactions and decision making was assessed. Tates et al. reported that in the majority of clinical consultations, adults (doctors and parents) dominated the decision-making process and treated the child as a passive bystander. ...
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The vitality of clinical research and the health of the public relies on continued efforts to engage children in clinical research in a fully protected and ethically robust manner. Parents serve as proxy decision-makers assessing the risks and benefits of any given study in order to do what is in the best interest of their child. This study investigated maternal perceptions of research safeguards and mothers’ willingness to enroll their children in clinical research studies. We hypothesized that mothers’ perceptions of the protectiveness of safeguard procedures utilized in clinical research would be associated with mothers’ willingness to enroll their children in research studies with such safeguards. Through a survey conducted via Amazon Mechanical Turk, mothers were asked to rate the perceived protectiveness of four safeguard procedures (confidential data coding, data and safety monitoring boards (DSMBs), institutional review boards (IRBs), and informed consent) and the degree to which they were willing to have their child participate in research studies in the presence of each of the four safeguard procedures. Respondents generally perceived safeguard procedures to be protective. Mothers’ trust in researchers’ honesty positively impacted perceptions of the protectiveness of research safeguard procedures and willingness to enroll children in research. Mothers of only healthy children perceived research safeguards to be more protective than mothers with at least one child with at least one health issue. This study provides insight into whether maternal perceptions of the protectiveness of different safeguard procedures are associated with mothers’ willingness to enroll their children in research.
... zaradi pomanjkljivega znanja kljub izpolnjeni pojasnilni dolžnosti, zaradi razliËnih zmotnih prepriËanj, zaradi malomarnosti), se pojavlja vprašanje, v kolikšni meri so pristojni za odloËanje glede cepljenja svojih otrok. V pediatriji odloËanje poteka v okviru triade otrok-starš-pediater, pri Ëemer otrokovo zdravstveno korist zastopa pediater (16). Pediater je "zagovornik" otroka (kot pacienta), starši pa so "odloËevalci". ...
... zaradi pomanjkljivega znanja kljub izpolnjeni pojasnilni dolžnosti, zaradi razliËnih zmotnih prepriËanj, zaradi malomarnosti), se pojavlja vprašanje, v kolikšni meri so pristojni za odloËanje glede cepljenja svojih otrok. V pediatriji odloËanje poteka v okviru triade otrok-starš-pediater, pri Ëemer otrokovo zdravstveno korist zastopa pediater (16). Pediater je "zagovornik" otroka (kot pacienta), starši pa so "odloËevalci". ...
Chapter
If there is one aspect of communication that the patient really wants to get right it is that with the doctor and other health-care personnel. It is important for patients that the doctor is given a clear description of not only symptoms, which will guide the first steps towards an eventual diagnosis, but also the overall situation, including psychological and relational aspects of life if required. In doing so, the patient will increase the chance of a better and more satisfactory medical intervention.
Conference Paper
Children can and should be encouraged to take an active part in their own care. With the introduction of online health care centers, where the main interaction is provided through digital consultations, the process for including the child must be revised. In addition to the medical and legal challenges, the digital interface needs to be designed so that the parent is encouraged to involve the child in the care-seeking process. This paper presents a concept for an online health care consultation for children, created in a user-centered design process. The specific challenges in designing for a setting where the role of the child is so central are discussed.
Article
Aims and objectivesTo investigate healthcare professionals' perspectives on child participation in paediatric hospital care and their opinions on improving participation practices. Background Some scholars argue that the decision-making capacities of children largely depend on the attitudes of healthcare professionals rather than on the children's own competences. Healthcare professionals' perspectives on children's participation in hospital care remain largely unexplored. DesignQualitative descriptive design. Methods Healthcare professionals (n=32) from 10 paediatric wards in the Netherlands participated in semi-structured interviews. Shier's Pathways to Participation model (2001) was used to guide the interviews. ResultsParticipation is not a term that is frequently used by professionals; however, they feel familiar with the ideas underlying the term, and it is perceived as being at the core of their work. Professionals believe that high levels of participation are possible in basic care for children. Participation in medical decision-making is considered to be more complex and subject to a number of reservations and restrictions. The participants expressed a strong need to enhance child participation in service evaluation and to increase the respect for and understanding of the rights of children to participate outside of the paediatric unit, including in the surgery and emergency departments. Conclusion Children do not currently participate in the assessment of hospital services. Creative methods that support the role of children in evaluating and improving the quality of paediatric hospital care and services should be developed. Hospital-wide policies could help to promote understanding of child participation among all professionals caring for children in hospitals. Relevance to clinical practiceBased on international agreements that the Netherlands has ratified, professionals have the duty to facilitate child participation in hospital care. Concrete opportunities and ideas on how to accomplish this goal in practice are provided, and areas for improvement are identified.
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Partizipation dient der Verbesserung der Protektion und Prävention von Krankheit und der Provision einer kindgerechten Gesundheitsversorgung. Die Umsetzung des salutogenen Partizipationsmodells beruht auf internationalen Gesetzesregelungen, die zusammen mit anderen, nationalen Regelungen Rahmenbedingungen schaffen wollen. Partizipation beruht auf bioethischen Grundlagen, die subjektive, objektive, interaktionelle und systemische Sichtweisen berücksichtigen. Partizipation setzt eine sozioethische Haltung der Behandler und ihre Kompetenz in der Kommunikation mit Kindern sowie die Entwicklung von Gesundheitskompetenz bei Kindern voraus. Partizipation von europäischen Kindern in der Medizin hat sich trotz der gesetzlichen Grundlagen bisher nicht ausreichend durchgesetzt. Es ist offensichtlich kein isoliert nationales Problem, sondern eine internationale Herausforderung. Unterschiedliche Länder, Berufsgruppen und Generationen haben verschiedene Vorstellungen von Partizipation. Die Implementierung von Partizipation in der Kindermedizin erfordert nicht nur adäquate Gesetzesregelungen, sondern eine professionelle und soziokulturelle Kompetenz – also Grundhaltung – aller Behandler sowie „empowerment“ von Kindern, um im Rahmen der medizinischen Kooperation einen Konsensus und bessere Heilungsergebnisse zu erzielen.
Article
Objective: To examine spoken interactions between pediatricians and community-based interpreters speaking with adolescents and parents with Limited English proficiency (LEP) in primary care to identify the challenges of interpreting in a four-person or tetradic visit, its sources of co-constructed errors, and specific practices for educational intervention. Methods: As part of a larger study of vaccine decision-making at six clinical sites in two states, this descriptive study used discourse analysis to examine 20 routine primary care visits in a Latino Clinic in interactions between adolescents, parents, community-based interpreters, and pediatricians. Specific patterns of communication practices were identified that contributed to inaccuracies in medical interpretation RESULTS: Practices needing improvement were tallied for simple frequencies and included: omissions; false fluency; substitutions; editorializing; added clarification, information, or questions; medical terminology; extra explanation to mother; and, cultural additions. Of these speaking practices, omissions were the most common (123 out of 292 total) and the most affected by pediatricians. Conclusion: The dynamics of both pediatricians and interpreters contributed to identification of areas for improvement, with more adolescent participation in bilingual than monolingual visits. Practice implications: These observations provide opportunities for mapping a communication skills training intervention based on observations for future testing of an evidence-based curriculum.
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Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical care. Some of these factors relate to the child, including their capacity to be actively involved in these decisions. Others relate to the family situation, sociocultural context, or the underlying beliefs and practices of the healthcare provider involved. In spite of these challenges to including children in decisions regarding their clinical care, we argue that it is an important factor in their treatment. The extent to which children should participate in this process should be determined on a case-by-case basis, taking all of the potential barriers into account.
Article
This study aimed to understand the impact of some children's death in parent's marital and how to the spirituality can interfer in this process. It is an exploratory, cross-sectional and qualitative research. We interviewed five heterosexual couples who practice some religion and lost a child. The participants were interviewed individually and with their partner, totaling 15 interviews. All the data were passing to the technique of content analysis and organized into themes. It was noted that there children's death created both the rejection of the partner in some instances/moments, and more intimacy in others. Consider the marital relationship is therefore also pay attention to the individual elements and the needs of each member of the dyad. The spirituality was a feature found in face of limited access to a structured psychological support.
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Triadic communication in pediatrics has been focused in the last 20 years, considering the relevance of understanding this process in order to improve health assistance to children and adolescents. The main purpose of this systematic literature review was to analyze 118 papers related to this theme, published between 2000 and 2012. Results show a regular distribution of studies along this period, with prevalence of descriptive researches that included quantitative methodology. Literature emphasizes that communication promotes better adherence to healthcare, improvement in symptoms and clinical responses, collaborative behaviors and adaptation to treatment, however the focus on triadic communicative skills during graduation is not sufficient. The child is excluded from the interaction and tailored demands for information must be a priority. More studies are needed, concerning psychosocial interventions in longitudinal design, which may contribute to understand communicative processes in pediatric settings.
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Objectives: To characterize community pharmacists' interactions with children and their caregivers. Methods: This observational study was conducted over a 14-day period in 3 community pharmacies. Trained researchers used an observation guide to document information about prescriptions that were picked up for children 7 to 17 years of age. Research assistants recorded: 1) when the prescription was picked up; 2) who picked up the prescription; 3) who was counseled by the pharmacist; 4) which pharmacy staff members interacted with the family; 5) pick-up location; 6) wait time; 7) how many questions the child or caregiver asked pharmacy staff; and 8) caregiver gender. Additional details such as the child's age, sex, and medication information were obtained from the prescription. Results: One hundred sixteen prescriptions were dispensed to 97 families. Most families picked up prescriptions on weekdays (84%) and after school (53%). Fifty-four percent of prescriptions were refills, and most (38%) were for mental health conditions. Only 28 children (29%) accompanied their caregivers to pick up their prescription. Nineteen caregivers (20%) received counseling; children were never counseled separately by pharmacists. Families with younger children were more likely to receive counseling than older children (β = -0.28; P = 0.01). Conclusion: Children infrequently accompany their parents to pick up their prescriptions, which limits pharmacists' opportunities to counsel children about their medications. Even when children are present, they rarely receive counseling from pharmacists.
Article
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Allowing competent children to exercise their right to consent relies largely on healthcare practitioners’ own understanding and attitudes regarding the maturity and decision-making capacity of minor patients, particularly in circumstances when professional guidelines for practice do not exist. The aim of this study was to explore Serbian primary care physicians’ a) views and experiences regarding decision-making capacity of adolescents, b) experiences with adolescents’ parents regarding their children’s right to give autonomous consent and c) views on their own role in adolescents’ healthcare. Qualitative semi-structured interviews were conducted in person with twelve pediatricians and gynecologists at eight primary health care institutions at Belgrade (Serbia) from March to May 2016. Qualitative content analysis was used to identify categories in the data. Participants agreed that decision-making capacity is reached at an individual pace, making it difficult to set age boundaries for consent. However, they noted that adolescents’ decision-making capacity can be enhanced by providing appropriate support, by both physicians and parents. Participants described witnessing overprotective behavior in parents, yet highlighted that physicians are well placed to help parents understand the importance of letting their adolescent children participate in decision-making. Since participation in decision-making is considered to be in the best interest of minors, primary care physicians can be important agents in strengthening adolescents’ positions as decision-makers in healthcare. In addition, healthcare workers would benefit from additional training in skills to enhance communication with both adolescents and parents.
Chapter
Erfolgreiche Kommunikation hilft im Umgang mit Angst und Stress, erspart Zeit und trägt auch bei Kindern wesentlich zu einer besseren Kooperation und Adhärenz und damit letztendlich zu einem besseren Behandlungsergebnis bei. Wichtig ist nicht nur, was man sagt, sondern wie man es sagt. Eine Besonderheit im Umgang mit Kindern ist die meist komplexe Mehrpersonensituation zwischen dem erkrankten Kind, dessen Eltern und dem behandelnden Arzt (Triade). Kommunikation findet immer auf mehreren Ebenen statt. Gerade im Umgang mit Kindern ist dies zu beachten, denn hier beeinflussen Faktoren wie Stimmlage, Sprechgeschwindigkeit, Gerüche und Berührungen die Gesprächssituation wesentlich. Zudem ist es erforderlich, die ärztliche Sprache dem jeweiligen Entwicklungsstand des Kindes anzupassen. Im vorliegenden Beitrag werden konkrete Praxistipps für die Kommunikation mit Kindern und deren Eltern in der Situation »akutes Abdomen« gegeben.
Chapter
This chapter discusses the most important topics related to medical ethics and bioethics in pediatric dermatology. It helps the reader to understand the concepts of ethics and bioethics, learn about the peculiarities of informed consent for children, understand the off‐label use of medications in pediatric dermatology, comprehend the importance of the doctor‐patient relationship and the definition and value of an ethics committee. In application, bioethics can be complicated by the difficulty of coming to a consensus about which principles should be applied based on the specifics of the situation at hand. Despite these complexities, four principles of biomedical ethics have been outlined by Beachamp and Childress, which include beneficence, nonmaleficence, justice, and autonomy. These basic moral tenets provide the analytical platform to reflect on moral issues as they arise and to weigh them against one another while considering the scope of their application.
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Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada’s ruling in Carter v. Canada . Included in this deliberation was the Special Joint Committee on Physician Assisted Dying’s recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children’s voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children’s voices could be mobilised in the life or death context of MAID. We conclude that children’s voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice.
Article
Objectives: Shared decision making describes a collaborative process in which healthcare providers and patients/families make treatment decisions using the best available evidence, while taking into account the patient's values and preferences. The objectives of this study were to assess the level of decisional conflict and shared decision-making experienced by older children and their parents when considering elective adentonsillectomies. Design: A prospective cohort study. Setting: Pediatric otolaryngology clinic in a teaching hospital. Participants: Participants included 53 children older than 9 years and their parents who underwent consultation for tonsillectomy with or without adenoidectomy. Main outcomes measures: Children and parents completed the Decisional Conflict Scale (DCS) and Shared Decision-Making Questionnaire-Patient Version (SDM-Q-9). Surgeons completed the Shared Decision-Making Questionnaire-Physician version (SDM-Q-Doc). Results: Overall, 10 (19%) parents and 18 (34%) children reported clinically significant decisional conflict. Parents who opted not to proceed with surgery had significantly higher DCS scores than those who decided to proceed with surgery. Both parents and children SDM-Q-9 and total DCS scores were significantly negatively correlated. Physician SDM-Q-Doc and parent total DCS scores were negatively correlated, while parent and physician SDM scores were positively correlated. Conclusions: Many older children and parents reported significant decisional conflict when considering elective pediatric otolaryngology surgery. Decisional conflict levels for both children and parents decreased with greater perceived levels of shared decision making. Older children did not appear to discern the same levels of shared decision making as parents and surgeons. Future research should assess methods to implement shared decision making into clinical practice for clinicians, parents and children when appropriate.
Article
Objective: Providers commonly rely on parent reports of a child's asthma symptoms; however, children as young as 7 years can report on their own health. Our study compared parent and child reports of asthma symptoms with exercise, worries about developing an asthma attack, and confidence in disease management. Methods: We recruited children ages 7 to 10 years with asthma from 4 Bronx, NY, schools, as well as their parents. The parents and children completed interview surveys with parallel questions regarding perceived asthma symptoms, asthma-related worries, and confidence in disease management. We used McNemar tests for paired data to compare parent and child responses. Results: We analyzed data for 105 parent-child pairs. Mean child age was 8.5 years (standard deviation, 0.99); 53% were male, and 82% were Hispanic. Children were more likely than their parents to report ever having an exercise-induced asthma attack (85% vs 48%; P < .001) and that they "worry a lot" about developing an asthma attack during exercise (63% vs 45%; P = .01). Children felt more confident about using an inhaler correctly (76% of the children were "very sure" vs 60% of the parents; P = .009) and were more likely to report having an inhaler available in case of an attack (38% of the children were "very sure" vs 20% of the parents; P = .003). Conclusions: In this school-based sample of urban children with asthma, we found disagreement between parent and child reports of symptoms with exercise, worry about developing an attack, and confidence in medication use. These findings suggest that including child reports during history taking could help providers identify children in need of enhanced asthma management.
Article
This article explores communication and decision-making with children and young people in healthcare. Children and young people report that healthcare professionals are good at explaining and helping them to understand what will happen to them, but that they do not feel involved in decision-making about their care or treatment. To improve communication with children and young people, they need to be involved in decision-making about their care and treatment. In partnership with children, young people and healthcare professionals Common Room Consulting, Great Ormond Street Hospital for Children NHS Foundation Trust and Health Education England have co-produced a communication model, Me first, to support decision-making with children and young people in healthcare. This article introduces the Me first model and explores how it can be applied in clinical practice.
Article
This study of the implications of Gillick competence argues it is an unnecessary burden with an unethical foundation. The ethics of adolescent medical decision-making is a fraught area for medical ethics because it deals with the threshold boundaries between childhood and adulthood and Gillick adds a burden upon children and adolescent patients that is unwarranted and through which damage is done to integral human relationships. In light of Gillick, it can be seen that the context of adolescent decision-making and childhood, is a neglected topic of ethical reflection.
Thesis
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When patients attend seizure clinics, they are advised to bring along a companion (usually a family member or friend) who can help them to answer questions about their condition. Despite their role being officially sanctioned, there has been some debate over the usefulness of companions in this environment, with some seeing them as eating into the time that patients have to provide diagnostically-important information (Robson, Drew, & Reuber, 2013; Schwabe, Reuber, Schöndienst, & Gülich, 2008), whilst others suggest that companions’ contributions may actually help with diagnosis (Robson, Drew, & Reuber, 2016). Research from other medical contexts, meanwhile, suggests that companions can be helpful in ways that go beyond diagnosis, and that these other functions should be taken into account when considering their role in the consultation room (Ellingson, 2002; LaidsaarPowell et al., 2013). This thesis aims to build upon this work by examining the companion’s role at all stages (beyond just diagnosis and history-taking) in seizure clinic interactions. Based on 30 video-recorded initial visits in a seizure clinic in which a companion was present, my research used conversation analysis (CA) to examine, across four analytic chapters, several aspects of this topic. In chapter 3 I examine how it is that companions actually come to contribute to these interactions in the first place. My analysis shows that companions were explicitly invited to contribute in 20% of these cases (n=406), were implicitly invited to contribute in 27.6% of these cases (n=553), and that they volunteered themselves to contribute in the remaining 42.6% of cases (n=854). The second part of the chapter then analyses some of these instances in detail. It shows how companion participation is co-constructed between the participants and how companions are attuned to the relevance of their contributions for the ongoing interaction, as well as maintaining an orientation to the patient’s rights as primary respondent. Having delineated the basic means of companion participation, the next two chapters consider how companions can contribute to the medical outcomes of the consultation, in their role as information-providers. Chapter 4 considers how companions can correct patients’ accounts of their illness. It shows, specifically how these corrections often upgrade the severity of the patient’s own descriptions (e.g. provide a symptom, after the patient has given a no symptom answer, or upgrade the frequency of how many attacks the patient describes having). Chapter 5 then discusses companions’ contributions to talk, specifically about medication in both the history-taking and treatment-recommendation phases of the consultation. Based on the observation that companions contributed at least once to medication discussions in 67% of cases (n=20) in the data, the chapter shows that, during the history-taking phase, companions were used as an informational resource by both patient and doctor. In the treatment recommendation phase, meanwhile, companions showed initiative in asking questions, making suggestions, expressing concerns, and complaining about medication. In chapter 6 I demonstrate that companions contribute in a way that goes beyond simply providing medical information, by emotionally supporting patients. It shows that one important way in which they do so is by touching patients at points where they are displaying difficulty or emotional distress. This chapter will discuss how these touches appear to occur systematically in a sequential context where there is something delicate being discussed. This thesis provides an overview of companion participation in the seizure clinic. It shows how companions can, as expected, act as information-providers, thus supporting previous research (Ellingson, 2002; Laidsaar-Powell et al., 2013; Wolff et al., 2016). It also goes beyond this, though, to show how companions can provide a form of interpersonal emotional support which, while not necessarily part of their ‘official’ role in the consultation, nonetheless serves an important function. Companions thus contribute at all points in seizure clinic interactions. Link: https://dspace.lboro.ac.uk/2134/36391
Article
Decision-making is important in the context of pediatric chronic illness because children and families need to make decisions about burdensome and complex treatments on a regular basis, and children must eventually learn how to make such decisions independently. Research related to children's decision-making in medical settings has been focused primarily on cognitive aspects of decision-making, such as understanding and capacity. The concept of decision-making involvement (DMI) recognizes that children can be involved in decision-making in multiple ways, regardless of capacity, and that parents and health care providers play a critical role in supporting children as they learn to make decisions on their own. Providers can facilitate DMI during medical encounters by asking for the children's opinions and concerns, encouraging turn-taking, soliciting questions, asking for information directly from the children, and checking that the children understand what has been said. Efforts to involve children send the message that the youth perspective is important and set the expectation for increased participation over time. Providers can also support parent-child decision-making about illness management at home by guiding parents as to how best to involve children in decisions about illness management, identifying areas in which more or less parental guidance and support are needed, and assisting youth in planning ahead for decision-making about illness management in high-risk situations. Additional research is needed to identify why children's DMI in medical settings remains low, develop and evaluate strategies to enhance DMI, and test the effects of DMI on health-related behaviors and outcomes over time.
Article
Introduction: Paediatric patients with disorders that involve brain functioning are particularly vulnerable with respect to including them in shared decision-making. Current tools are mostly paper or digital patient information. We lay the groundwork for improving engagement with a concept that we coined 'the Self-Portrait'. The main goals were to identify (1) obstacles and (2) design parameters that enable patient participation. Methods: A research-through-design approach was utilized in nine patients with brain-related disorders (4-12 years), 15 parents and 15 medical professionals, involving contextual research (interviews and observations) within the paediatric hospital and patients' homes and codesign. Sensitizing materials and early instances of design solutions were deployed as catalysts for communication. Five rounds of enriched interviews and design reviews were thematically analysed to answer the research questions. Results: Obstacles to child involvement were related to children's level of understanding, the time and energy necessary for information processing and lack of perceived relevance of the information. Patients' engagement is supported by design features that extend the time frame of interaction beyond the consultation, transfer information interactively and give control and influence during the consultation. Conclusion: Obstacles were detected that complicate child engagement, which differ between stakeholders. Promising design features were identified that have the potential to play an important role in enabling active child involvement. These findings show that applying principles of human-centred design research and codesign can bring together patients, parents and medical professionals around a tool that provides a shared language and focus, which are prerequisites to increase child engagement. Patient or public contribution: Patients, parents and clinicians contributed as design informants during contextual research and design reviews. Clinicians provided feedback on the initial outcomes of thematic analysis. Two researchers assisted in consensus sessions during the thematic analysis.
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Objective To analyze communication skills of pediatric postgraduate residents in clinical encounter by using video recordings. Methods This qualitative exploratory research was conducted through video recording at The Children’s Hospital Lahore, Pakistan. Residents who had attended the mandatory communication skills workshop offered by CPSP were included. The video recording of clinical encounter was done by a trained audiovisual person while the resident was interacting with the patient in the clinical encounter. Data was analyzed by thematic analysis. Results Initially on open coding 36 codes emerged and then through axial and selective coding these were condensed to 17 subthemes. Out of these four main themes emerged: (1) Courteous and polite attitude, (2) Marginal nonverbal communication skills, (3) Power game/Ignoring child participation and (4) Patient as medical object/Instrumental behaviour. All residents treated the patient as a medical object to reach a right diagnosis and ignored them as a human being. There was dominant role of doctors and marginal nonverbal communication skills were displayed by the residents in the form of lack of social touch, and appropriate eye contact due to documenting notes. A brief non-medical interaction for rapport building at the beginning of interaction was missing and there was lack of child involvement. Conclusion Paediatric postgraduate residents were polite while communicating with parents and child but lacking in good nonverbal communication skills. Communication pattern in our study was mostly one-way showing doctor’s instrumental behaviour and ignoring the child participation.
Article
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In 1989 the UN General Assembly adopts the Convention on the Rights of Children and Adolescents (CRC) recognizing children and adolescents as subjects of rights. To be mandatory, its ratification involves creating conditions for children and adolescents to express themselves and be considerate. This means that their voice must be included in the scientific work, not as a complement or contrast, but as an actor priority, especially in public policies that compete. This work aims to contribute to the development of productions to consider the participation of children and adolescents, through the approach of challenges and scope for research analysis focusing on three areas: the role of the State, families and the extent of child participation. The paper is organized in compliance with two objectives. First, to describe the theoretical bases that support the right of participation of children and adolescents, checking the CRC and the Model of Integral Protection of Children; the CRC and the right of participation; and the approach to child participation in research in relevant areas. And second, to characterize empirical research involving children and adolescents conducted in various contexts since 1998. We conclude that the speech of the CRC has faced in practice with traditional conceptions about the role of children and adolescents, both in macro scenarios (politics and State) as well as microsocial scenarios (the family), "crashing" with traditional prevailing approaches (guardian). The lack of understanding of the meaning of participation and the resistance to change of the place of childhood acts as barriers to the installation of studied law, prevailing form of action mediated by adult link. By contrast, the concept of scaffolding will allow a shift in the promotion of citizenship and children's role and its forms of observation, challenging us to investigate the childhood experience from promotion (not from deficiencies), independent of particular features incorporating the concepts of agency, equity and governance.
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Examined patient–physician interactions through an analysis of the speech of 11 pediatrician/parent/child triads during examinations. Results indicate that doctors talked to the children nearly two-thirds of the time, using a higher set of intonation patterns than those used in talking with parents. Three patterns of pediatrician behavior were identified: relaxed, informal talk with children; consultative communication with parents, using formal and precise language; and gentle, authoritative communication with children. It is concluded that the pediatrician's roles are to help the child feel relaxed and comfortable and to demonstrate competence and efficiency to the parent. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
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The way physicians communicate with patients has been shown to affect physiologic measurements, adherence to therapeutic regimens, and satisfaction with medical care. The purpose of this study was to document the content of medical interviews in routine pediatric visits and to identify demographic and situational characteristics that influenced the extent of communication between doctor and child. One hundred fifteen office visits to 49 physicians were videotaped and analyzed. Children studied were 4 to 14 years old with a mean age of 8.5 years. Verbal transactions were coded according to direction of communication, transaction type, and content category. Coder reliability for this system was 0.84. A considerable amount of the total communication, 45.5%, was between doctor and child. Doctors interacted differently with parents and children. More information about the current problem was obtained from children; physicians provided feedback primarily to parents. Parents received 4.4. times as much information as children about the nature and prognosis of a condition. The extent to which doctors talked to children in "substantive" areas was primarily associated with a child's age (r = .52, P less than .001) but was partly influenced by family size (r = .20, P less than .05) and family utilization (r = .22, P less than .02). Race, socioeconomic status, type of problem, and previous encounter with the examining physician did not alter communication patterns. Boys were given more information than girls (6.5% vs 4.0%, P less than .01). We suggest a theoretical framework for future investigation and teaching that identifies the child as an active participant in the medical process.
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We aimed to describe the parents' perspective of their child's asthmatic disease, and relate it to the dialogue with the doctors and the diagnostic delay. Qualitative studies with semi-structured interviews were carried out with 20 parents of 30 asthmatic children aged from 2 to 15 years who had had asthma for at least 1 year and were all attending a Copenhagen outpatient asthma clinic. The asthma symptoms, for most of the children starting during their first year, were manifold and complex, including long-lasting coughing as a frequent symptom. Parents recognized specific asthma patterns in their child, often including behaviour change. Many parents had difficulty in understanding why doctors changed the dose of medicine. The diagnostic delay was significant. The study indicated problems in doctor-patient communication: differences in the conceptual vocabulary; the doctor's reluctance to consider the patient's story and rely instead on auscultation; as well as unexpected odd differential diagnoses. All contributed to the disturbed mutual understanding. The new asthma definition from the First International Pediatric Consensus Report is a milestone because it focuses on the patient's story and emphasizes the chronic episodic course rather than asthma as attacks. The study highlights the importance of "listening to the parents" in order to make the diagnosis and to secure parents' participation in starting anti-inflammatory therapy, as well as regulating drug doses according to the symptoms, to secure the lowest possible but effective drug doses.
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Just as the molecular and chemistry oriented sciences were adopted as the 20th century medical paradigm, incorporation of the patient's perspective into a relationship-centered medical paradigm has been suggested as appropriate for the 21st century. It is the medical dialogue that provides the fundamental vehicle through which the paradigmatic battle of perspectives is waged and the therapeutic relationship is defined. In many regards, the primary challenge to the field is the development of operationally defined and measurable indicators of medical communication that will provide a valid representation of the conceptual models of the therapeutic relationship. The purpose of this essay is to explore the implications of a relationship-centered medical paradigm on the nature of the patient-physician relationship and its expression in the communication of routine medical practice. An organizing framework for distinguishing commonly measured communication elements into conceptually distinct components is suggested. Application of this framework is illustrated through an empirical study of communication in primary care practice. The results of the study demonstrate the usefulness of this approach in linking communication to models of therapeutic relationships. The importance of medical communication is further explored in a summary of studies that establish its association to outcomes and in an overview of future challenges to the field.
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Asthma self-management programmes have been shown to increase children's knowledge about asthma and improve their management practices and health status. However, existing programmes have rarely addressed the unique learning needs of very young children. This study aimed to develop and assess the effectiveness of a video tape and picture book designed to teach children about the prevention and management of acute episodes of asthma. The information content of the educational resources was determined by analysis of relevant medical information and asthma management skills. Social Learning Theory and consideration of the developmental stage of the target population informed the format and style of presentation of the resources. Eighty children aged between 2 and 5 years who had been diagnosed with asthma by their medical practitioner and who required daily asthma medication participated in a controlled experimental study. The study evaluated the impact of the asthma education resources on children's knowledge about asthma, compliance with medication regimens and health status. Children were randomly allocated to one of three experimental groups. Children in these groups were exposed to either the video tape alone, the book alone or both the video tape and book, or to a control group who viewed materials unrelated to asthma. The results for the three experimental groups were compared with the control group who did not receive exposure to any of the asthma education resources, The results showed that children in each experimental group had significantly greater gains in asthma-related knowledge than children in the control group and children exposed to both resources showed the greatest increases In knowledge. Children In each of the three experimental groups also had better compliance rand health than children in the control group, These findings indicate that carefully designed asthma education resources are useful for providing even the youngest children with information about asthma and its management.
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Communication can be seen as the main ingredient in medical care. In reviewing doctor-patient communication, the following topics are addressed: (1) different purposes of medical communication; (2) analysis of doctor-patient communication; (3) specific communicative behaviors; (4) the influence of communicative behaviors on patient outcomes; and (5) concluding remarks. Three different purposes of communication are identified, namely: (a) creating a good inter-personal relationship; (b) exchanging information; and (c) making treatment-related decisions. Communication during medical encounters can be analyzed by using different interaction analysis systems (IAS). These systems differ with regard to their clinical relevance, observational strategy, reliability/validity and channels of communicative behavior. Several communicative behaviors that occur in consultations are discussed: instrumental (cure oriented) vs affective (care oriented) behavior, verbal vs non-verbal behavior, privacy behavior, high vs low controlling behavior, and medical vs everyday language vocabularies. Consequences of specific physician behaviors on certain patient outcomes, namely: satisfaction, compliance/adherence to treatment, recall and understanding of information, and health status/psychiatric morbidity are described. Finally, a framework relating background, process and outcome variables is presented.
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OBJECTIVES. Poor children's reliance on emergency facilities is one factor implicated in the rise of morbidity attributed to asthma. Although studies have examined doctor-patient communication during routine pediatric visits, little data are available about communication during emergency care. This study sought to describe communication during emergency treatment of childhood asthma to learn if a "patient-centered" provider style was associated with increased parent satisfaction and increased parent and child participation. METHODS. This cross-sectional, observational study examined 104 children aged 4 to 9 years and their guardian(s) attending emergency departments in seven cities. Quantitative analysis of provider-family dialogue was performed. Questionnaires measured satisfaction with care, provider informativeness, and partnership. RESULTS. Providers' talk to children was largely supportive and directive; parents received most counseling and information. Children spoke little to providers (mean: 20 statements per visit versus 156 by parents). Providers made few statements about psychosocial aspects of asthma care (mean: three per visit). Providers' patient-centered style with parents was associated with more talk from parents and higher ratings for informativeness and partnership. Patient-centered style with children was associated with five times the amount of talk from children and with higher parent ratings for "good care," but not for informativeness or partnership. CONCLUSIONS. Communication during emergency asthma care was overwhelmingly biomedical. Children took little part in discussions. A patient-centered style correlated with increased parent and child participation, but required directing conversation toward both parents and children.
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Recent legislation in the Netherlands requires that children should play a part in decision making regarding their own health care. So far, however, little attention has been given to the child’s participation in medical interviews. In order to get a grip on aspects of asymmetry and control in doctor–parent–child communication, the present study explores the turntaking patterns in this triad at the general practitioner’s surgery, and makes a comparison over the years. Videotaped observations of 106 medical interviews taken over a period of almost 20 years have been analyzed by means of the Turn Allocation System. The results show that the child’s control in the medical consultation is rather limited, though, over the years, the child participates more actively. The child’s conversational contribution appears to be strongly related to the age of the child. An important finding is the difference in the way GP and parent accommodate their turntaking patterns to the child; parental control appears to be constant over the years, and is not related to the age of the child, whereas the GP is considering the child’s age. The results are discussed in terms of implications for medical practice and health education.
Article
Communication can be seen as the main ingredient in medical care. In reviewing doctor-patient communication, the following topics are addressed: (1) different purposes of medical communication; (2) analysis of doctor-patient communication; (3) specific communicative behaviors; (4) the influence of communicative behaviors on patient outcomes; and (5) concluding remarks. Three different purposes of communication are identified, namely: (a) creating a good inter-personal relationship; (b) exchanging information; and (c) making treatment-related decisions. Communication during medical encounters can be analyzed by using different interaction analysis systems (IAS). These systems differ with regard to their clinical relevance, observational strategy, reliability/validity and channels of communicative behavior. Several communicative behaviors that occur in consultations are discussed: instrumental (cure oriented) vs affective (care oriented) behavior, verbal vs non-verbal behavior, privacy behavior, high vs low controlling behavior, and medical vs everyday language vocabularies. Consequences of specific physician behaviors on certain patient outcomes, namely: satisfaction, compliance/adherence to treatment, recall and understanding of information, and health status/psychiatric morbidity are described. Finally, a framework relating background, process and outcome variables is presented.
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Asthma self-management programmes have been shown to increase children's knowledge about asthma and improve their management practices and health status. However, existing programmes have rarely addressed the unique learning needs of very young children. This study aimed to develop and assess the effectiveness of a video tape and picture book designed to teach children about the prevention and management of acute episodes of asthma. The information content of the educational resources was determined by analysis of relevant medical information and asthma management skills. Social Learning Theory and consideration of the developmental stage of the target population informed the format and style of presentation of the resources. Eighty children aged between 2 and 5 years who had been diagnosed with asthma by their medical practitioner and who required daily asthma medication participated in a controlled experimental study. The study evaluated the impact of the asthma education resources on children's knowledge about asthma, compliance with medication regimens and health status. Children were randomly allocated to one of three experimental groups. Children in these groups were exposed to either the video tape alone, the book alone or both the video tape and book, or to a control group who viewed materials unrelated to asthma. The results for the three experimental groups were compared with the control group who did not receive exposure to any of the asthma education resources. The results showed that children in each experimental group had significantly greater gains in asthma-related knowledge than children in the control group and children exposed to both resources showed the greatest increases in knowledge. Children in each of the three experimental groups also had better compliance and health than children in the control group. These findings indicate that carefully designed asthma education resources are useful for providing even the youngest children with information about asthma and its management.
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Generally, increasing attention is being paid to the quality of doctor-patient communication. However, children's contributions have been, until now, primarily ignored in communication research, although there are indications that considering their views increases satisfaction and compliance. In the present study, we examined how children contributed to communication during outpatient pediatric encounters and what factors were associated with children's contributions. Twenty-one consulting pediatricians videotaped a total of 302 consecutive outpatient encounters. Multilevel analysis was used to take into account the similarity among encounters with the same pediatrician. Children's contributions to the outpatient encounters were limited to 4%. Pediatricians directed one out of every four statements to the child. Although pediatricians asked children a lot of medical questions (26%), only a small part of the medical information (13%) was directed at the children. Apart from social talk and laughter, the amount of pediatrician-child communication increased with children's age. Communication with children suffering from disorders of the nervous system seemed to differ from that with children suffering from other diseases. Allowing children more room in the medical visit did not seem to increase the duration of the visit. Although recent legislation requires children to be adequately informed, in pediatric outpatient encounters information still tends to be directed primarily at the parents. Children do get the opportunity to talk about social and psychosocial issues. Pediatricians may need to acquire similar communication skills to discuss medical-technical issues with the children.
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As fellow citizens, all children need a stimulating social environment that helps them develop self-respect and social competence. Developmental research, however, shows, that many children do not or cannot fulfil the social, moral or cognitive developmental tasks which are necessary for healthy development. A lack of opportunities for gaining meaningful social experiences can be seen as a major source of psychosocial and behavioural problems in children. On the contrary, active commitment in educational environments such as the school and the neighbourhood, helps them to get an increasingly better grip on their own lives and health. Moreover, such 'children's participation' appears to have a protective and preventive effect for health-related problems. Therefore, it is argued, that 'enablement', a key-element of both the Ottawa Charter on Health Promotion and the International Convention on the Rights of the Child, should be at the core of every child-health promotion programme.
Article
Previous studies on doctor-parent-child communication at the general practitioner's surgery showed that the GP and the parent differ fundamentally in the way they enable or constrain child participation. The question how to explain these differences is at the core of the present study. The aim is to describe how the three participants display their orientation to their institutional roles and identities; how they collaboratively co-construct the course of action; and how these discursive constructions structure the ongoing interaction. A qualitative analysis of 106 videos shows that although GP and parent initially show incongruent orientations toward child participation, in the further course of the encounter all three participants jointly establish a situation in which child participation appears to be rather an exception. It is concluded that parental speaking for the child is, in a way, institutionally co-constructed; parents take their responsibility, which is hardly ever questioned by children, and GPs ratify this behaviour by refraining from meta-communicative comments and by aligning with the parent in the course of the interaction. The results are discussed in terms of enabling child participation and implications for medical practice.
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