Lindblad Britt-Marie, Rasmussen Birgit H, Sandman Per-Olov
Department of Health Sciences, University of Borås, Borås, Sweden.
J Pediatr Nurs. 2005 Jun;20(3):214-23. doi: 10.1016/j.pedn.2005.02.010.
The importance of giving professional support to parents who have a child with a disability is well documented in the research literature. Research from parents' perspective shows however that how support is delivered for an entire family's well-being is crucial. The aim of this study was to illuminate the meanings of being a supporter as narrated by nine parent-selected professionals. The findings show that having a personal and professional philosophy on being and doing is crucial when helping parents care for their child. Being confident that it is always possible to help means to seek unique solutions for each child and family. Being a trustworthy partner of parents means to trust in parents as invaluable partners as well as to exert efforts to gain the parents' trust, seeing parents as both persons and the child's carer, and being sensitive to parents' vulnerability. Enabling parents to gain competence and confidence in parenthood embraces the knowledge and skills necessary for the competence as their child's carer and respecting parental authority. The findings are interpreted as being in tune with oneself, children, and parents--which in this study implies freedom from being confined by bureaucracy, prestige, and institutional norms but freedom to be authentic and act according to personal philosophies.
研究文献充分证明了为残疾儿童家长提供专业支持的重要性。然而,从家长角度开展的研究表明,如何为整个家庭的幸福提供支持至关重要。本研究的目的是阐明九位由家长选定的专业人员所讲述的作为支持者的意义。研究结果表明,在帮助家长照顾孩子时,拥有关于为人和行事的个人及专业理念至关重要。相信总是能够提供帮助意味着为每个孩子和家庭寻求独特的解决方案。成为家长值得信赖的伙伴意味着信任家长是非常宝贵的合作伙伴,同时努力赢得家长的信任,将家长视为个体以及孩子的照顾者,并对家长的脆弱性保持敏感。使家长在为人父母方面获得能力和信心包括作为孩子照顾者所需的能力的知识和技能,并尊重家长的权威。研究结果被解释为与自己、孩子和家长协调一致——在本研究中,这意味着不受官僚主义、声望和机构规范的束缚,而是能够真实地按照个人理念行事的自由。