McAndrew I
Child Care Health Dev. 1976 Jul-Aug;2(4):213-8. doi: 10.1111/j.1365-2214.1976.tb00245.x.
The mothers' perceptions of the emotional and social stresses experienced by families who have children suffering from spina bifida, cerebral palsy or a limb deficiency, and the mothers' suggestions for easing situations that were causing them concern are recorded in this study. One hundred and sixteen mothers were interviewed. The children were between the ages of five and ten years at the time of the interview and were patients at the Royal Children's Hospital, Melbourne. The study investigates the problems of attending a public hospital and draws attention to the difficulties in communication between the hospital staff and parents. It emphasizes the physical demands made on the parents, particularly the mothers, in caring for a handicapped child and indicates the lack of supporting services in the home, such as home help and child minding services. The effect on the parental relationship and on brothers and sisters is studied and attention is drawn to the need for ongoing social work support to the parents, and that brothers and sisters should be included in the counselling services. Some of the difficulties encountered by the child with a handicap are recorded, in particular the problems of socialization and leisure time occupation. The parents' difficulties in rearing a handicapped child are discussed including their problem in talking to the child about his handicap. The mothers' comments about community attitudes to their child, and ways of alleviating these are also mentioned.
本研究记录了母亲们对患有脊柱裂、脑瘫或肢体残疾孩子的家庭所经历的情感和社会压力的看法，以及母亲们对缓解令她们担忧的情况的建议。对116位母亲进行了访谈。访谈时，孩子们年龄在5至10岁之间，均为墨尔本皇家儿童医院的患者。该研究调查了在公立医院就诊的问题，并提请注意医院工作人员与家长之间沟通的困难。它强调了家长，尤其是母亲在照顾残疾儿童时所面临的身体需求，并指出家庭中缺乏诸如家政帮助和儿童照料服务等支持性服务。研究了对亲子关系以及对兄弟姐妹的影响，并提请注意需要持续为家长提供社会工作支持，而且兄弟姐妹也应纳入咨询服务。记录了残疾儿童所遇到的一些困难，特别是社交和休闲时间安排方面的问题。讨论了家长在抚养残疾儿童时遇到的困难，包括他们在与孩子谈论其残疾情况时的问题。还提到了母亲们对社区对其孩子态度的看法以及缓解这些看法的方法。
