Decision making in pediatric oncology: Views of parents and physicians in two European countries
quality of life; Switzerland; doctor patient relation; parent; interpersonal communication; oncology; physician; oncologist; child parent relation; pediatrics; human; female; male; adult; qualitative research; middle aged; decision making; Romania; neoplasm/th [Therapy]; patient participation; clinical protocol
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.
Badarau DO; Ruhe K; Kuhne T; De CE; Colita A; Elger BS; Wangmo T
AJOB empirical bioethics
2017
<a href="http://doi.org/%2010.1080/23294515.2016.1234519" target="_blank" rel="noreferrer noopener">10.1080/23294515.2016.1234519</a>
"As if Nothing Happened": Experiences of Bereaved Parents in Romania
bereavement;Grief;Romania;trauma;traumatic stress
Prior research has found high levels of distress in parents who experience the death of a child; however, Romanian parents, whose experiences are influenced by the nation's shared historical trauma, have not been studied. This mixed-methods study found very high levels of distress in a sample of 237 bereaved parents in Romania, primarily women. Specifically, 89% of respondents scored above the clinical cutoff for trauma responses, 66% did so for anxious responses, and 82% did so for depressive responses. Qualitative analyses of respondents' narratives suggest that, through complex interactions between political, social, and medical systems, the lack of care after the death of a child seems to incite additional distress in parents. These findings warrant further exploration of traumatic grief in Romania, especially in the context of historical and political trauma, and of ways in which support can be provided to grieving parents in this unique cultural milieu.
Thieleman K;Cacciatore J
Omega
2018
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<a href="http://doi.org/10.1177/0030222818799949" target="_blank" rel="noreferrer noopener">10.1177/0030222818799949</a>