| 2. |
- Schröder Håkansson, Anna, 1964, et al.
(författare)
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Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology
- 2020
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 109:5, s. 1040-1048
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Tidskriftsartikel (refereegranskat)abstract
- Aim To explore Swedish healthcare professionals' (HCPs) clinical experiences of the informed consent process (ICP) and to compare experiences between the professions. Methods In this nationwide study six paediatric oncologists (POs) and eight research nurses (ReNs) from all Swedish paediatric oncology centres were interviewed. The material was analysed using Grounded theory, a qualitative constant comparative method. Results The participants' main concern was how to fulfil research obligations without putting too much strain on a family in acute crisis, which led to the core category of balancing values and obligations of both healthcare and research. To handle the challenges the participants' struggled to safeguard the families from psychological harm, tried to adjust to the families, and gradually introduced research while building trust. The conceptual model developed in the study highlights potential consequences of this balancing act with a risk of diminishing the family's autonomy through HCPs acting authoritatively (in particular POs) or with overprotection (in particular ReNs). Conclusion Paediatric oncology is a research integrated healthcare environment. The HCPs need personal, professional and institutional support regarding ICP-related ethical issues, decisions and implications in this intertwined context. Furthermore, HCPs need to be aware of the potential long-term risk of developing professional moral distress.
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| 3. |
- Stenmarker, Emelie, et al.
(författare)
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Health-related quality of life, culture and communication: a comparative study in children with cancer in Argentina and Sweden.
- 2018
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Ingår i: Journal of patient-reported outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 2:1
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Tidskriftsartikel (refereegranskat)abstract
- Malignant disorders in childhood are life-threatening conditions, and issues regarding the children's health-related quality of life (HRQOL) are crucial in paediatric oncology. The overall aim of this study was to explore HRQOL in children with cancer in two countries, Argentina and Sweden, which have different cultural contexts. The specific aims were: to determine HRQOL by gender, age, diagnosis, treatment modality, time since diagnosis, and parental education/employment across cultures. Further aims were to assess the child/parent relationship in HRQOL and the influence of demographic variables in psychosocial and physical HRQOL in each country.A cross-sectional study was performed in 2014, including 58 children (24 females, 34 males) and 62 parents/guardians. The instrument, the Pediatric Quality of Life Inventory™ (PedsQL™, generic, cancer and fatigue modules), and medical records were used. The response rate was 97%.The mean age of the children was 8.67years (SD 5.1, range 2-18years) and the mean time on treatment was 10.7months (SD 8.7, range 1-30months). The most common diagnosis was leukaemia (57%). In Argentina, in comparison with Sweden, a higher estimation of generic HRQOL was reported among adolescents (p=0.022) and more cancer-related problems among school-age children (p<0.0001). Children and parents in both countries confirmed the major problem with fatigue and multimodality therapy regimes, but lower levels of fatigue were reported in Argentina. Adolescents and children with solid tumours appeared as vulnerable groups. In Sweden, children whose mothers had post-secondary education reported less cancer-related problems (p=0.031). Good relationships were found between child/parent reports in Argentina regarding the fatigue module (p=0.034) and physical subscale (p=0.014), and in Sweden regarding generic health (p=0.004), including psychosocial (p=0.006) and physical subscales (p=0.042), and cancer (p=0.001), and fatigue (p<0.0001) modules. In Sweden, psychosocial health (OR 7.5; p=0.007) and physical health (OR 6.2; p=0.011) were positively influenced by being a school-age child.Fatigue is as a major problem across cultures. Still, being in school facilitates recovery. Good relationships in psychosocial HRQOL highlight professional challenges regarding severe issues and open communication, and the need of performing comparative studies of HRQOL of children with cancer from different cultural backgrounds.
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