Madeleine Marie Hortense Janin1, Sarah Jane Ellis2, Alistair Lum3, Claire Elizabeth Wakefield4, Joanna Elizabeth Fardell5. 1. 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. Electronic address: m.janin@unsw.edu.au. 2. 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. Electronic address: sarah.ellis@unsw.edu.au. 3. 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. Electronic address: a.lum@unsw.edu.au. 4. 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. Electronic address: c.wakefield@unsw.edu.au. 5. 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. Electronic address: j.fardell@unsw.edu.au.
Abstract
PURPOSE: 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. DESIGN AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
PURPOSE: 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. DESIGN AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.