Thomlinson Elizabeth H
Faculty of Nursing, University of Calgary, Alberta, Canada.
J Adv Nurs. 2002 Sep;39(6):537-45. doi: 10.1046/j.1365-2648.2002.02322.x.
This study was conducted to explore the experience of families of children who were failing to thrive. The aim of the study was not to generalize the findings but to generate a rich description of the phenomenon of living with children who were not growing as expected.
Although failure to thrive has been found to have long-term negative implications for children there is little information available on how families experience this phenomenon.
A purposive sample of 12 families with children who were failing to thrive from multiple known and unknown reasons were interviewed (21 participants: mothers, fathers, and grandmothers).
Twenty-seven subthemes emerged from the descriptions provided by the participants and these were then grouped into seven themes. Families spoke of an all-encompassing fear with which they lived. They were affected by the comparisons of the children made by others and themselves. In the process of seeking care for the children, the families described how their concerns often were not heard by the professionals. They felt blamed for their children's growth failure and this added to a sense of isolation and helplessness. Nurses and doctors who listened and acknowledged that they trusted the family were respected and valued. Families felt they were then valuable members of the care team. Regardless of the difficulties, families described how they adapted and persevered in their attempt to provide as normal a life as possible for the children. They considered themselves the experts who best knew the children and continued to provide the complex care that was needed.
The research suggests that health care professionals need to be more aware of the impact of their words and actions on families.
本研究旨在探索那些孩子发育迟缓的家庭的经历。该研究的目的并非对研究结果进行概括，而是对与发育未达预期的孩子共同生活这一现象进行丰富的描述。
尽管已发现发育迟缓对儿童有长期负面影响，但关于家庭如何经历这一现象的信息却很少。
对12个因多种已知和未知原因导致孩子发育迟缓的家庭进行了有目的抽样访谈（21名参与者：母亲、父亲和祖母）。
从参与者提供的描述中出现了27个次主题，然后将这些次主题归纳为7个主题。家庭成员表示他们生活在一种无所不在的恐惧之中。他们受到他人以及自己对孩子进行比较的影响。在为孩子寻求护理的过程中，家庭成员描述了他们的担忧往往未被专业人员倾听。他们因孩子生长发育不良而感到自责，这加剧了他们的孤立感和无助感。倾听并认可他们且信任家庭的护士和医生受到尊重和重视。家庭成员觉得自己当时是护理团队中有价值的成员。尽管困难重重，但家庭成员描述了他们如何适应并坚持努力为孩子提供尽可能正常的生活。他们认为自己是最了解孩子的专家，并继续提供所需的复杂护理。
该研究表明，医疗保健专业人员需要更加意识到自己的言行对家庭的影响。
