Keep going forward with the memory—xploring the re-adjustment of the parents who lose their child with rare disorders
Date Issued
2009
Date
2009
Author(s)
Su, Ling-Jie
Abstract
The purpose of this study is to explore the experiences that parents nurture their child with rare disorders and how they adjust his/her death. At the same time, to propose some suggestions for professional helpers. The study adopts a descriptive qualitative approach. Hence, I took the depth interview as the main method of data-collecting, sampling 8 parents who lost their child with rare disorders. Besides, these samples also include a professional staff who is charged with psychological services to supplement the research data. After analyzing the data collecting from 10 interviewees, the results of this study present as followings: First of all, during the process of fighting against the rare disorder, parents would change their perceptions through the struggle they suffered and children’s conditions. Also, it increased their potential energy and coping methods. Most of the families were bored with care stress nearly and didn’t seek others’ help until burning themselves out. Moreover, the parents would ask their relatives and friends for help. However, they knew quite a few about formal services and resources. Secondly, bereaved parents would use some coping methods to face the misery, including life inspiration, religion supporting, altruistic activities, and rearranging life. In doing so, they were able to reduce the grief, reconstruct the meaning , infuse hope into their life, and change the attitude towards it, then, helping them to readjust the new life with without the deceased child. Finally, bereaved parents would interact with families, social networks, and customs in different time and space. All experiences would influence their actions about how to readjust new life without the deceased child. Considering all the above, this study bring up some suggestions:) About the services providers, they should provide family-oriented services and spiritual resources as soon as possible, and set up the model of professional cooperation.) Regarding service policy and systems, to increase the resources’ visibility and flow them freely without obstructions is necessary, especially in remote regions. Furthermore, revising the policy which is about the rare disorders is the most important way to fit in with the new law. Last but not least, enhancing professionals’ training about knowing rare disorders can lead patients and their family get suitable services.
Subjects
Child with rare disorders
Bereavement
Reconstruct the meaning
Readjustment
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