Who is supporting the parents during their child's cancer treatment? A qualitative study through the lens of compassion

被引:2
|
作者
Nielsen, Camilla Littau [1 ,2 ,3 ]
Clemensen, Jane [1 ,2 ,3 ,4 ,5 ,6 ]
Callesen, Michael Thude [1 ]
Jensen, Claus Sixtus [7 ,8 ,9 ]
Smith, Anthony C. [4 ,5 ,6 ]
Holm, Kristina Garne [1 ,2 ]
机构
[1] Odense Univ Hosp, Hans Christian Andersen Childrens Hosp, Odense, Denmark
[2] Univ Southern Denmark, Fac Hlth Sci, Dept Clin Res, Odense, Denmark
[3] Univ Southern Denmark, Fac Hlth Sci, Dept Reg Hlth Res, Ctr Compass Healthcare,Dept Clin Res, Odense, Denmark
[4] Univ Southern Denmark, Odense Univ Hosp, Ctr Innovat Med Technol, Odense, Denmark
[5] Univ Queensland, Ctr Online Hlth, Woolloongabba, Australia
[6] Univ Queensland, Ctr Hlth Serv Res, Herston, Australia
[7] Aarhus Univ Hosp, Res Ctr Emergency Med, Aarhus, Denmark
[8] Aarhus Univ, Dept Clin Med, Aarhus, Denmark
[9] Aarhus Univ Hosp, Dept Paediat & Adolescent Med, Unit Res & Dev Nursing Children & Young People, Aarhus, Denmark
关键词
Childhood cancer; Compassion; Family care; Oncology care; Paediatric oncology; Parental care; Psychosocial care; Qualitative research; HEALTH; FAMILY;
D O I
10.1016/j.ejon.2024.102534
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Purpose: Parents of children/adolescents with cancer are placed in a state of severe suffering due to serious concerns, fears, and radical daily life changes. Human support is an important source of support for successful coping. This study explored fundamental aspects of parents' daily, social, and personal life during their child's treatment to deepen our understanding of 'who' plays a significant role in supporting parents, and how, and to what extent this support is provided. Methods: This qualitative study was undertaken in a compassion paradigm, designed and guided by Heidegger's and Gadamer's philosophy and compassionate methods. Data were generated through ethnographic observations (144 h), focus group interviews (n = 2), and individual/couple interviews (n = 16) at two Danish hospitals. Inductive content analysis was used to analyse data. Results: Overall, support from peers, health professionals, and social networks constituted significant sources of support. Especially peers and health professionals had a continuous support role, which was fundamental for establishing interpersonal closeness and relieving suffering. Sharing responsibilities between parents and among social networks seemed to ease the emotional and practical burden. However, to ensure effectiveness, social networks must be available, outreach, and responsive to needs. Moreover, parents disclosed little self-awareness and resources and options for self-care due to a combination of lack of awareness, time, and space in the hospitals. Conclusion: Safeguarding interpersonal and interparental understanding and closeness in parental care is essential. One way is building resilience and a broader human-to-human-based safety net around the family, including social networks and professional psychosocial support, advantageously using compassion.
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页数:7
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