By Margaret H. Vickers (auth.)
Read or Download Working and Caring for a Child with Chronic Illness: Disconnected and Doing It All PDF
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Additional resources for Working and Caring for a Child with Chronic Illness: Disconnected and Doing It All
Sample text
I had no children, so had little understanding of parenting, especially the mother-child bond, the selfless caring that accompanies parenthood, or the need to juggle work and home with children thrown into the time-hungry mix. I also professed no knowledge of the special grief and loss engendered by having a child with chronic illness, nor the fears for the future felt for a child more vulnerable than most. My concurrent proximity and distance to this research was undeniable (Vickers, 2005e). According to Heidegger, the researcher’s influence cannot be underestimated and will determine what phenomena, facts and relations enter their consciousness (Moss and Keen, 1981: 108).
Not for me, and not for these women. The basis of this project was the experiences of respondents (Fricke, 2004), my desire to share those experiences with others (Vickers, 2001a), and the fact that, from the outset, the project was driven by a problem about which not enough was known. The data shared in this chapter is used to portray how data from each stage was used as the project evolved, to demonstrate the knowledge gained along the way, and the actionable knowledge outcomes that resulted.
For example, the major step of a child entering the school system can become imbued with issues surrounding the need for the parent to give up control of the child’s healthcare management during the day to teachers – who, unfortunately, may have little knowledge about childhood chronic illness (Melnyk et al, 2001). Parents still have to pay attention to work roles, often during stressful periods, with colleagues not understanding their experiences. Similarly, day-to-day care for conditions such as cystic fibrosis (CF) can be time-consuming and stressful, on a regular basis (Quittner et al, 1992).