Jill Davies

Looking for an ordinary life

The number of children who are technology dependent or have complex health needs is increasing worldwide, and in many countries, there is an increased life expectancy with more children living far longer than previously expected into early and middle adulthood. Although there are no accurate data in the United Kingdom to account for this group of children, Glendinning et al. (2001) estimated there were around 6000 children in this group; of these, the number of children who are oxygen and/or ventilator dependent (Ludvisgen and Morrison, 2003) and tube fed (Townsley and Robinson, 2000) is also increasing. Although longer life-expectancy and home-based care is a positive development for children and their families, it does create particular and specific demands on the family as well as health and social care services. Whilst it is a less expensive option than hospital-based care, looking after a child who requires 24-hour care is expensive. Consequently, there is an increasing need for care delivery to make the most efficient use of the resources available, both within the family’s own support network and within the statutory care services. Although families generally welcome the opportunities created by home-based care, the families can and often do come under enormous pressure and family functioning can be effected (Toly et al., 2012). Health and social care professionals need to ensure that they not only support the child’s particular health and social care needs but also try to protect and sustain family life. When care is home-based, the child’s parents have to manage their child’s care from hour to hour. This often involves undertaking many health-care interventions such as giving medications, assessing the child’s clinical status and managing the technology. On top of this, they have to keep track of the many services and individual professionals involved as well as attend multiple clinical and other appointments. Townsley et al. (2004) reported that children with disabilities face multiple barriers to exercising some of their basic human rights such as communication, independence, friendships and leisure opportunities. The families they spoke to had difficulties in finding and organising social activities for their child and the system did not support their desire to do things as a whole family. Poverty compounds these issues. Person-centred approaches can be used to facilitate families to find out what they hope to achieve for themselves and their child so that they can live as ordinary a life as possible. Person-centred approaches have been used for many years in the United Kingdom, particularly for people with learning disabilities, but what does this really mean in practice for this group of Journal of Child Health Care 17(3) 217–218 a The Author(s) 2013 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0267323113503057 chc.sagepub.com

Commentary on “An evaluation of the My Way transition programme”

Purpose – The aim of this paper is to comment on Broadhurst et al.s evaluation of the My Way transition programme.Design/methodology/approach – Reflects on Broadhurst et al.s account in the context of recent and current transition initiatives within the UK.Findings – Transition support remains a problematic area. Successful support needs to include a number of elements.Originality/value – There is a clear role for the kind of facilitation used in the My Way project as a means of providing creative support to young people and their families.

Learning with Families: Involving Families in Staff Training

Valuing People calls for a new relationship between families and staff in learning disability services. It proposes that the voices of family carers be heard, and that they should be treated as partners in policy development and implementation, including their involvement in staff training and development. The Foundation for People with Learning Disabilities has developed a tool to help staff and families to work better together. The result is a training resource called Learning with Families ‐ a training resource with a difference: the contents were developed by family carers, who are also being encouraged to deliver the training, alongside professionals, to staff who work in learning disability services, in order to improve their understanding of the experiences of families.