Alsem M W, Siebes R C, Gorter J W, Jongmans M J, Nijhuis B G J, Ketelaar M
Rudolf Magnus Institute of Neuroscience and Center of Excellence for Rehabilitation Medicine Utrecht, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, the Netherlands; Partner of NetChild, Network for Childhood Disability Research in the Netherlands, Utrecht, the Netherlands.
Child Care Health Dev. 2014 Jul;40(4):498-506. doi: 10.1111/cch.12093. Epub 2013 Jul 30.
Valid tools to assess family needs for children with physical disabilities are needed to help tune paediatric rehabilitation care processes to individual needs of these families. To create such a family needs inventory, needs of families of children with a physical disability (age 0-18 years) were identified. We examined differences in the number and type of needs listed by families when asked for by means of an interview compared with using an inventory.
Forty-nine families of children with a wide variety of physical disabilities (mean age 7.7 years; SD 4.6) participated in semi-structured interviews, focusing on family needs. They also checked an inventory of 99 items (based on a previously conducted literature review), regarding their family needs. In addition, individual interviews with healthcare professionals, and panel meetings with healthcare professionals and parents were held to further identify relevant family needs for the inventory.
The individual parent and healthcare professional interviews raised 41 needs that were not included in the original inventory of 99 items. Moreover, the panel meetings raised a further 49 needs. After restructuring and reformulating several items, a 187-item Family Needs Inventory - Paediatric Rehabilitation (FNI-PR) was created. The parent interviews revealed significantly less family needs (mean number of needs = 10.8; SD = 6.0) compared with using the inventory (mean number of needs = 31.7; SD = 19.7) (P < 0.0001). Most expressed family needs were related to both general and specific information concerning the child's development and treatment, aids and information about legislation and to rules relating to compensation of costs.
Based on responses of parents and healthcare professionals the FNI-PR has been developed, a comprehensive inventory for family needs that can be used in paediatric rehabilitation. An inventory checked by parents resulted in more family needs than a single open-ended question. The inventory may facilitate the implementation of family-centred care.
需要有效的工具来评估残疾儿童家庭的需求，以帮助使儿科康复护理流程符合这些家庭的个性化需求。为了创建这样一个家庭需求清单，我们确定了身体残疾儿童（0至18岁）家庭的需求。我们研究了通过访谈询问家庭时列出的需求数量和类型与使用清单时的差异。
49个患有各种身体残疾儿童的家庭（平均年龄7.7岁；标准差4.6）参与了半结构化访谈，重点是家庭需求。他们还检查了一份基于先前文献综述的99项清单，内容涉及他们的家庭需求。此外，还对医疗保健专业人员进行了个别访谈，并与医疗保健专业人员和家长举行了小组会议，以进一步确定清单中相关的家庭需求。
家长和医疗保健专业人员的个别访谈提出了41项需求，这些需求未包含在最初的99项清单中。此外，小组会议又提出了49项需求。在对若干项目进行重组和重新表述后，创建了一个187项的《儿科康复家庭需求清单》（FNI-PR）。与使用清单相比，家长访谈显示的家庭需求明显更少（需求平均数 = 10.8；标准差 = 6.0），而使用清单时需求平均数 = 31.7；标准差 = 19.7（P < 0.0001）。大多数表达的家庭需求与有关儿童发育和治疗的一般及具体信息、辅助器具以及有关立法和费用补偿规则的信息有关。
根据家长和医疗保健专业人员的反馈，已制定了FNI-PR，这是一份可用于儿科康复的全面家庭需求清单。家长检查清单得出的家庭需求比单一的开放式问题更多。该清单可能有助于以家庭为中心的护理的实施。
