Patricia McNeilly

The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.

Opioid-induced constipation in children's palliative care.

Accurate assessment and management of childrens symptoms at the end of life is a vital part of the childrens nurse role. Most children experience pain at this stage and opioids are the drug of choice in those requiring a palliative approach to care. Opioids are, however, not without side effects; the most common is constipation. This can cause additional stress and anxiety for children and their parents at what is already a difficult time. A number of assessment tools are available to assist nurses and other members of the care team to work with children and parents in identifying risk factors for constipation and its severity. Conventional management of opioid-induced constipation consists of stool softening or peristalsis stimulating laxatives, and often this is effective; however, laxatives also have side effects which can be distressing. This article looks at novel approaches to managing opioid-induced constipation that are beginning to come to the fore, although there is limited reference to their use in childrens palliative care.