By Zainab A Jasem (originally published on ehospice International Children’s edition).
In this article written for ehospice, PhD candidate at the University of Southampton, Zainab Jasem, writes about her investigations into the features of a supportive play environment for children living with life-threatening/limiting conditions. A link to the full review article is provided at the end.
Play is a synonym of childhood (James 1998). It is about fun and happiness. It is every child’s right and a fundamental building block for children’s physical, cognitive and psychosocial growth (Parham 2008). Unfortunately, children living with life-threatening/limiting conditions (LTC/LLC) experience disruption in their play (Amery 2016). This, as a consequence, negatively affects their health and well-being (Boucher, Downing and Shemilt 2014).
Supporting their participation in play is essential to fill their lives with meaningful experiences and give them the best quality of life possible. For this reason, we have reviewed empirical studies discussing play for those children, to explore the nature of their play and to investigate barriers to their play.
After a comprehensive search in different data sources in almost all related topics that could be factors, only 13 studies were obtained discussing the play of children with LTC/LLC in their middle childhood and receiving palliative or end-of-life care. By reviewing these studies, a number of concerns regarding the play of children living with LTC/LLC were identified (Jasem et al. 2018). Those findings can be classified into three key concepts:
1) Influence of the condition on children’s play
LTC/LLC places limitations on children’s active play and leaves children weakened, with limited physical abilities. In addition, medical interventions or precautions shape their play. Some authors stated that children mainly used electronic devices as a form of entertainment, as they could easily play with them in bed. This is because, for instance, of difficulties in balancing or being attached to infusions, which may limit their play.
2) Continuity of play
Play aids children’s feelings of normality, and it adds fun and happiness during hospitalisation. Having the opportunity to play the games they have at home, when hospitalised, make their stays more enjoyable. Thus, children’s continuous participation in their routines, particularly in terms of their preferred play, is important to their wellbeing.
3) Limited availability of play opportunities
This issue can be considered a major reason leading to play deprivation for children living with LTC/LLC. This point includes limitations in play equipment, play spaces and playmates.
Children complained about the limited availability of toys, including age- and gender-appropriate activities, maintenance and replacement of play equipment (e.g. inaccessibility when play equipment was kept on high shelves or in locked cabinets). There was also inaccessibility to playrooms due to specific opening hours. However, the reviewed studies demonstrated that shared places such as corridors and gardens allowed for pleasant social interaction and play. Having playmates was reported as being important to make hospitals less restricting as places to play and making the situation more bearable. It was generally found that children enjoyed talking about friendships. Despite this, children’s limited physical abilities during play led to isolation and loss of friends. Nevertheless, being labelled as an unwell child in some communities caused other children to avoid making contact with that child. Last but not least, playing with grown-ups was a factor. Although children enjoyed playing with them, adults felt that it placed a burden on them because it required time and energy to facilitate play.
To summarise, living with LTC/LLC may prevent children from fully experiencing their childhood as it challenges and changes the type of play in which they can participate. Those children deserve optimal care to the last days of their lives. Therefore, facilitating their access to a childhood that is, as far as possible, equitable to that of their peers in their communities is a responsibility. “When children are having difficulty in play … this is the time for immediate attention of a professional” (Florey 1971, p. 280). The limited number of studies discussing this issue is an alarming sign of an urgent need to investigate this area further and act upon enhancing children’s participation in their preferred play modes and types.
About the author: Zainab A Jasem is a PhD candidate at the University of Southampton. She is investigating the features of a supportive play environment for children living with life-threatening/limiting conditions. Should you wish to contact her, please email: firstname.lastname@example.org
The full review article can be read at the following https://eprints.soton.ac.uk/422181/