Better to know than to imagine: Including children in their health care.

BACKGROUND: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. METHODS: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding. RESULTS: Parenting styles, the child's personality, and maturity are factors that have a great impact upon the inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent-child and physician-patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion. CONCLUSIONS: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities.

Decision making in pediatric oncology: Views of parents and physicians in two European countries.

BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options. METHODS: This qualitative interview study explored decision-making processes for children with cancer at different stages in their treatment in Switzerland and Romania. RESULTS: Thematic analysis of interviews conducted with parents and oncologists identified decision making as a heterogeneous process in both countries. Various decisions were made based on availability and reasonableness of care options. In most cases, at the time of diagnosis, parents were confronted with a "choiceless choice"-that is, there was only one viable option (a standard protocol), and physicians took the lead in making decisions significant for health outcomes. Parents' and sometimes children's role increased during treatment when they had to make decisions regarding research participation and aggressive therapy or palliative care. Framing these results within the previously described Decisional Priority in Pediatric Oncology Model (DPM) highlights family's more prominent position when making elective decisions regarding quality-of-life or medical procedures, which had little effect on health outcomes. The interdependency between oncologists, parents, and children is always present. Communication, sharing of information, and engaging in discussions about preferences, values, and ultimately care goals should be decision making's foundation. CONCLUSIONS: Patient participation in these processes was reported as sometimes limited, but parents and oncologists should continue to probe patients' abilities and desire to be involved in decision making. Future research should expand the DPM and explore how decisional priority and authority can be shared by oncologists with parents and even patients.

Is decision-making capacity an "essentially contested" concept in pediatrics?

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that "creates" that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making.

Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology.

UNLABELLED: Adequate participation of children and adolescents in their healthcare is a value underlined by several professional associations. However, little guidance exists as to how this principle can be successfully translated into practice. A total of 52 semi-structured interviews were carried out with 19 parents, 17 children, and 16 pediatric oncologists. Questions pertained to participants' experiences with patient participation in communication and decision-making. Applied thematic analysis was used to identify themes with regard to participation. Three main themes were identified: (a) modes of participation that captured the different ways in which children and adolescents were involved in their healthcare; (b) regulating participation, that is, regulatory mechanisms that allowed children, parents, and oncologists to adapt patient involvement in communication and decision-making; and (c) other factors that influenced patient participation. This last theme included aspects that had an overall impact on how children participated. Patient participation in pediatrics is a complex issue and physicians face considerable challenges in facilitating adequate involvement of children and adolescents in this setting. Nonetheless, they occupy a central role in creating room for choice and guiding parents in involving their child. CONCLUSION: Adequate training of professionals to successfully translate the principle of patient participation into practice is required. WHAT IS KNOWN: •Adequate participation of pediatric patients in communication and decision-making is recommended by professional guidelines but little guidance exists as to how to translate it into practice. What is New: •The strategies used by physicians, parents, and patients to achieve participation are complex and serve to both enable and restrict children's and adolescents' involvement.

Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare.

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children's position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity is discussed, followed by an examination of Vygostky's contextualist view on children's development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults' decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties.

Parents' and patients' experiences with paediatric oncology care in Switzerland--satisfaction and some hurdles.

QUESTIONS UNDER STUDY: This paper explores parents' and patients' satisfaction with care in Swiss paediatric oncology settings and examines difficulties experienced while undergoing treatment for cancer. METHODS: Semistructured interviews were conducted with 19 parents, and with 17 children who were diagnosed with cancer and receiving treatment. During these interviews questions pertaining to communication and decision-making at time of diagnosis and throughout the illness course were asked. In this paper, we examined these interviews using thematic coding to identify themes with regard to satisfaction with care. RESULTS: Generally, participants reported being very content with the care they received. Aspects that contributed to satisfaction were the friendliness and responsive nature of healthcare staff; helpful communication; and professionals going beyond their duties to care for the family. In spite of mainly being pleased with the care they received, participants underlined several issues that made their experiences at times difficult. These included frequent change of physician or receiving care from another unit, which for them represented lack of continuity of care; language problems; and challenges with reproductive health issues of the child. Additionally, patients suggested several ways to improve hospital stays and thereby patient satisfaction. CONCLUSION: Participants reported being very satisfied with care delivered by paediatric oncology units. Nevertheless, they also identified problems that are worth addressing in order to efficiently tend to the needs of patients and families undergoing this difficult experience. Future research is needed to explore how care for children with cancer and their families can be further improved.

Participation in pediatric oncology: views of child and adolescent patients.

OBJECTIVE: The aim of the present study is to explore patient's perspectives in pediatric oncology on participation in discussions and decision-making surrounding their cancer diagnosis. METHODS: Seventeen patients between 9 and 17 years of age receiving treatment at centers of the Swiss Pediatric Oncology Group were interviewed for this study. Their interview data was analyzed qualitatively to identify themes with regard to participation in medical communication and/or decision-making. RESULTS: Participants highlighted how their roles in health care discussions varied from direct participation to indirect involvement. Overall, there were fewer accounts of involvement in decision-making than in overall health care discussions. Challenges with regard to completely understanding the information provided and making decisions were identified. Participants also discussed situations when they were not involved in medical communication or decision-making. While they generally valued their participation, the preferred level of involvement oscillated between participants as well as within one and the same child across time. CONCLUSIONS: The complex pattern of participation found in this study calls for a flexible model of involving children and adolescents in health care that accounts for the varying roles and preferences that they manifest. A patient may appreciate active involvement in some decisions while choosing to remain in the background for others. Copyright © 2015 John Wiley & Sons, Ltd.

"Chemo-Knights" and "Radio-Robby": Provision of Information in Pediatric Oncology.

BACKGROUND: Information provision is an important step in enabling pediatric patients to participate in healthcare. Storybooks and patient information brochures represent a channel through which children and adolescents with cancer are informed about their illness. However, the use of such written materials has received little academic attention. OBJECTIVE: The aim of this article was to carry out an exploratory analysis of written information resources for pediatric cancer patients. The potential of these to enhance patient participation will be discussed. METHODS: A convenience sample of 16 written resource materials in English and German were chosen for analysis. Thematic coding was carried out to identify major themes. RESULTS: Subthemes were summarized into 3 main categories: information on diagnosis, treatment, and illness experience. Information was provided on, for example, illness name and etiology, diagnostic and treatment procedures, emotions, and coping strategies. CONCLUSIONS: Storybooks and other written resources on cancer contain a broad array of information and describe illness-related issues to a varying extent. They represent an excellent possibility to ease patient participation in healthcare by providing them with necessary information while also inviting further discussion. IMPLICATIONS FOR PRACTICE: Nurses and other healthcare professionals can use written resource materials to engage in discussions with pediatric patients concerning their illness. Nurses should be aware of the information children and adolescents receive in these materials in order to be able to adequately answer questions that may arise or identify misunderstandings as well as lack of information.

Parents' Challenges and Physicians' Tasks in Disclosing Cancer to Children. A Qualitative Interview Study and Reflections on Professional Duties in Pediatric Oncology.

BACKGROUND: Professional guidelines encourage physicians to provide children with as much information regarding their health as deemed developmentally and emotionally appropriate. However, empirical research indicates that in clinical practice, an open discussion with children about cancer is often lacking. This study explores impeding factors to and possible strategies for open communication of cancer diagnosis to children from the perspectives of parents and physicians. PROCEDURE: Semi-structured interviews were conducted with 18 parents of children with cancer and 10 treating oncologists. The patient sample was obtained from three pediatric units in Romania. Interviews were transcribed verbatim and interpreted using thematic analysis. Inductive open-coding procedures identified participants' accounts regarding their experiences with cancer diagnosis and treatment. Final themes were selected by grouping codes that formed a pattern in the data. RESULTS: An interplay of mainly three different factors-information overload and emotional turmoil, lack of knowledge and skills for disclosing the diagnosis, and assumptions about burdening the child when discussing cancer-restricted parent-patient communication and subsequently affected physician-patient exchanges. Oncologists recommended open communication at diagnosis, but left the final decision to the parents. They adapted their communication style with patients to parents' preference. CONCLUSIONS: Although physicians need to respect the wishes of children's legal representatives, they also have a duty to promote patients' best interests. We recommend that physicians employ a proactive stance in ensuring that children with cancer are appropriately informed about their diagnosis. In case of parents' arduous objections to full disclosure, an ethical consultation should be considered.

Body matters: rethinking the ethical acceptability of non-beneficial clinical research with children.

The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children's participation in non-beneficial clinical research. Building on Wendler's 'contribution to a valuable project' justification, but going beyond a risk/benefit analysis, it articulates a pro-research argument which appeals to a phenomenological view on the body and vulnerability. It is claimed that children's bodies are not mere physical objects, but body-subjects due to which children, as persons, can contribute to research that may hold no direct clinical benefit to them even before they can give informed consent.

Decision-making capacity of children and adolescents--suggestions for advancing the concept's implementation in pediatric healthcare.

UNLABELLED: Within the frameworks of shared decision-making and participation in healthcare, children's ability to understand and appreciate information pertaining to illness and treatment is important. Physicians are mainly responsible for assessing decision-making capacity (DMC) but may encounter difficulties arising from the limited basis of evidence with regard to this concept in pediatrics. Three issues contributing to this paucity of knowledge on DMC of children can be identified: (1) conceptual blurriness and absence of clear terminology, (2) lack of validated tools to reliably assess DMC in the pediatric population, and (3) a need to include a developmental framework to understand DMC in children and adolescents. The aim of this paper is to examine these three issues and provide practical recommendations to advance the concept and its assessment in pediatrics as a step to ensuring children's developmentally appropriate participation in healthcare. Finally, the paper highlights the ethical dimension of assessing DMC emphasizing the importance of physicians' attitudes for the assessment process. CONCLUSION: A detailed understanding of DMC is necessary to inform developmentally appropriate participation. In order to achieve this, pediatric practice needs to address challenges that are specific to providing healthcare for children, including conceptual issues, assessment, and aspects of child development.

The gait function of slipped capital femoral epiphysis in patients after growth arrest and its correlation with the clinical outcome.

PURPOSE: Slipped capital femoral epiphysis (SCFE) represents the preliminary stage of osteoarthritis. Reliable tools for outcome evaluation should be developed to prevent persisting defects. The functional outcome of SCFE-patients after growth arrest is analysed by instrumented 3D-gait analysis (GA). The results are matched to the clinical examination findings. METHODS: A total of 39 SCFE patients after growth arrest (18.8 years; BMI 26.5 kg/m²) with unilateral affection were included. The clinical results were classified according to Harris hip and clinical Heyman Herndon scores. 3D-GA-parameters were evaluated and compared to the sound side and a group of 40 healthy adults (28.0 years; 21.9 kg/m²). The subgroup analysis was performed according to clinical results. RESULTS: The clinical examination revealed very good results. GA could detect even small alterations. Some parameters indicated sustained functional impairments: Compared to the control group patients' walking speed (p = 0.022), step frequency (p < 0.001) and single support of the slip side (p < 0.001) decreased, while step width (p = 0.014), double support (p = 0.004) and stance time of sound side increased (p = 0.001). For kinematics patients, the sagittal range of motion (ROM) of pelvis (p < 0.001) and the external rotation of the ankle on both sides increased (p = 0.011) and sagittal ROM of hip (p = 0.002) and knee flexion of slip side (p < 0.001) decreased. The sagittal ROM of the ankle on the slip side decreased compared to the sound side (p = 0.003). Subgroup analysis revealed a positive correlation between clinically unsatisfying results and GA parameters. CONCLUSIONS: Functional impairments in SCFE-patients can be found even after growth arrest. Alterations are explained partly by the disease and partly by patients' constitution. BMI-matched controls and long-term follow-up are needed.

DSM-IV criteria for childhood separation anxiety disorder: informant, age, and sex differences.

BACKGROUND: The present study examines frequency of DSM-IV symptom and diagnostic criteria for separation anxiety disorder (SAD) by informant, age, and sex. METHODS: Children aged 4-15 years with a primary DSM-IV diagnosis of SAD (N=106) were assessed using structured diagnostic interviews (Kinder-DIPS; DSM-IV-TR Version). Frequency of DSM-IV symptom and diagnostic criteria were examined as a function of informant and child characteristics, along with impairment and distress ratings. RESULTS: The most frequently reported symptoms were separation-related distress, avoidance of being alone/without an adult and sleeping away from caregivers or from home, with nightmares the least frequently endorsed criterion. Child report did not yield any significant sex or age differences. However, parent report revealed greater reluctance or avoidance of school attendance for girls than boys, and for younger children (<8 years). Parent report indicated greater symptom-related impairment than child report, and the number of symptoms was correlated with impairment based on parent report, and with distress based on child report. CONCLUSIONS: The primary indicators of SAD appear to be separation distress, avoidance of being alone, and sleeping away from caregivers. Findings suggest that parents may be best placed to determine impairment, while children may be the most accurate reporters of more covert internal distress. Implications for clinicians are that reports from multiple informants should be used to gain the most comprehensive information about childhood SAD.