Whiting Mark
Peace Children's Centre, Watford, Nursing Children and Young People.
Nurs Child Young People. 2014 May;26(4):24-7. doi: 10.7748/ncyp2014.05.26.4.24.e389.
To investigate the experiences of parents of children with complex health needs in relation to the help and support they receive when caring for their child.
A series of in-depth semi-structured interviews undertaken with the parents of 34 children (33 families) with a disability or a complex health need. Families were categorised into one of three subgroups: children with a disability, children with a life-limiting or life-threatening illness, or children with technology dependence.
In relation to parental experience of the need for help and support, two major categories were identified, namely 'people', and 'processes and resources', as well as a series of subcategories. Respite care was identified as the greatest unmet need.
Parents identified a range of helping behaviours among key professional staff involved in support provision. The greatest area of unmet needs is for respite care.
调查有复杂健康需求儿童的家长在照顾孩子时所获得的帮助与支持方面的经历。
对34名有残疾或复杂健康需求儿童的家长（33个家庭）进行了一系列深入的半结构化访谈。家庭被分为三个亚组之一：残疾儿童、患有危及生命或有生命危险疾病的儿童、技术依赖儿童。
关于家长对帮助和支持的需求体验，确定了两个主要类别，即“人员”和“流程与资源”，以及一系列子类别。临时护理被确定为最未得到满足的需求。
家长们确定了参与提供支持的关键专业人员的一系列帮助行为。未得到满足的最大需求领域是临时护理。
