Janin Madeleine Marie Hortense, Ellis Sarah Jane, Lum Alistair, Wakefield Claire Elizabeth, Fardell Joanna Elizabeth
Kids Cancer Centre, Sydney Children's Hospital, Randwick 2031, NSW, Australia; School of Women's and Children's Health, UNSW Medicine, Sydney 2052, NSW, Australia.
J Pediatr Nurs. 2018 Sep-Oct;42:e10-e18. doi: 10.1016/j.pedn.2018.06.010. Epub 2018 Jul 7.
Many children suffer from a serious chronic illness. These children have greater risks of developing psychosocial difficulties, associated with school absenteeism and missed social opportunities. Through parents' perspectives, this study aimed to gain a holistic understanding of children's social experience in the context of chronic illness.
We conducted semi-structured interviews with parents of a child with a serious chronic illness exploring their child's school experience. Two researchers coded social experiences using an iterative process, involving regular team discussions. Theoretical thematic analysis and content analysis were both performed, using the social ecological model as a theoretical framework.
Forty-nine parents participated (43 mothers, 6 fathers; child mean age 11.51 years; 21 female children, 28 male children; 6 different chronic illness groups). According to parents, the main facilitators to the social experience of their children involved parents themselves, the school, social networks and peers, as they were all able to provide social support and opportunities for social development. However, peers were also a source of bullying and peer pressure, and sometimes lacked understanding and empathy.
As shown by the social ecological model, social functioning between chronically-ill children and their peers can be influenced by many factors. More specifically, parents have expressed their ability for promoting positive experiences between their children and their peers. Practice Implications Considering the complexity of social functioning, future research and interventions should provide holistic support for children with chronic illnesses.
许多儿童患有严重的慢性疾病。这些儿童出现心理社会问题的风险更高,与缺课和错过社交机会有关。本研究旨在通过家长的视角,全面了解慢性病背景下儿童的社交经历。
我们对患有严重慢性病儿童的家长进行了半结构化访谈,探讨他们孩子的学校经历。两名研究人员采用迭代过程对社交经历进行编码,包括定期的团队讨论。使用社会生态模型作为理论框架,同时进行了理论主题分析和内容分析。
49名家长参与了研究(43名母亲,6名父亲;孩子平均年龄11.51岁;21名女童,28名男童;6个不同的慢性病组)。根据家长的说法,孩子社交经历的主要促进因素包括家长自身、学校、社交网络和同龄人,因为他们都能够提供社会支持和社交发展机会。然而,同龄人也是欺凌和同伴压力的来源,有时还缺乏理解和同理心。
正如社会生态模型所示,慢性病儿童与其同龄人之间的社会功能可能受到多种因素的影响。更具体地说,家长已经表达了他们促进孩子与同龄人之间积极经历的能力。实践意义考虑到社会功能的复杂性,未来的研究和干预措施应该为慢性病儿童提供全面的支持。