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

Wangmo, Tenzin; Clercq, Eva De; Ruhe, Katharina M.; Beck‐Popovic, Maja; Rischewski, Johannes; Angst, Regula; Ansari, Marc; Elger, Bernice Simone

doi:10.1080/23294515.2016.1207724

Cited by 48 publications

(60 citation statements)

References 42 publications

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“…This information enabled us to exclusively search for children that met the inclusion criteria (note: SCCR includes information on both living and deceased paediatric oncology cases and reports data on adolescents up to 20 years of age). This study confined their analysis to children who died due to childhood cancer in response to our previous project on children's inclusion in treatment‐related decision‐making in which we were unable to recruit palliative cases due to hesitancy to bring up this issue within discussions with families (Ruhe, Badarau et al., ; Ruhe, Wangmo et al., ; Wangmo, De Clercq et al., ; Wangmo, Ruhe et al., ). Therefore, to examine decision‐making regarding palliative care we decided to exclusively analyse medical records of deceased children.…”

Section: Methodsmentioning

confidence: 99%

Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children

et al. 2018

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Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff.

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Section: Methodsmentioning

confidence: 99%

Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children

et al. 2018

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“…Findings from the study reported that while children generally value their involvement and find it important to be informed, they differ in their preferred level of involvement (Ruhe et al, ). Another manuscript from the project concluded that parents and physicians value child participation, but without explicitly referring to their right of self‐determination (Wangmo & De Clercq et al, ). They expressed the concern that children, as the affected persons, have the need to know.…”

Section: Introductionmentioning

confidence: 99%

“…The reason for this is motivated by another crucial finding from our study. The shift from curative to palliative care was cited by all participants as a major reason to enhance the child's role in the decision‐making process; on the other hand it was identified as one of the main reasons to exclude them out fear that it would affect their morale (Wangmo & De Clercq et al, ).…”

Section: Introductionmentioning

confidence: 99%

Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology

2017

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Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.

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“…Several benefits have been found to relate to children′s participation in health care, such as feeling valued and feelings of greater control and less anxiety (Coyne, ; Coyne & Gallagher, ; Dixon‐Woods, Anwar, Young, & Brooke, ). It is clear that there is an increasing awareness of the benefits of child participation, yet it appears that children are rarely or inconsistent involved in healthcare processes (Coyne, ; Koller, ; Virkki, Heino Tolonen, Koskimaa, & Paavilainen, ) and that barriers exists for patient participation in the paediatric healthcare context (Ruhe et al., ; Wangmo et al., ). Moreover, it has been questioned whether the concept of participation has been fully implemented in healthcare organizations (Coyne & Gallagher, ).…”

Section: Introductionmentioning

confidence: 99%

Patient participation, a prerequisite for care: A grounded theory study of healthcare professionals’ perceptions of what participation means in a paediatric care context

2017

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AimsTo explore healthcare professionals’ perceptions of what patient participation means in a paediatric care context. DesignA qualitative explorative design with grounded theory.MethodsFifteen healthcare professionals who worked in paediatric care settings were either interviewed or asked open‐ended questions in a survey, during December 2015–May 2016. Grounded theory was used as a method.ResultsThe study results provide a theoretical conceptualization of what patient participation meant for healthcare professionals in paediatric care and how participation was enabled. The core category “participation a prerequisite for care” emerged as the main finding explaining the concept as ethical, practical and integrated in the care givers way of working. However, the concept was implicit in the organization. Four additional categories illustrated the healthcare professionals’ different strategies used to enhance patient participation; “meeting each child where the child is,” “building a relationship with the child,” “showing respect for each individual child” and “making the most of the moment.”

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

Cited by 48 publications

References 42 publications

Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children

Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children

Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology

Patient participation, a prerequisite for care: A grounded theory study of healthcare professionals’ perceptions of what participation means in a paediatric care context

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