Table 2 main and final themes of mothers’ experience of caring a child with IEAAMs
From: Mothers’ lived experience of caring for children with inborn errors of amino acid metabolism
Main themes | Final themes | |
|---|---|---|
1 | Confused skein of diagnosis and treatment | Future tied to past |
2 | Ambiguous future capture to disease | |
3 | Mothers’ mental disturbance | Mentally disturbed in the shadow of lost ideal child |
4 | Lost ideal child | |
5 | Child’s rebellion, Mother’s helplessness | Rebellion and blaming, the ways of escaping difficulties |
6 | Suffering decrease by blaming | |
7 | Motherhood in the shadow of disease, fear, and self-forgetting | Self-forgetting in the shadow of full time care |
8 | Full time care dependent to lots of restrictions | |
9 | Tiny candle of hope in the duality of denial-belief | Passing difficulties in the duality of hope-hopelessness |
10 | Passing the storm of difficulties riding the boat of time, patience, and believes | |
11 | Self-wanted isolation | Caring in a continuum of isolation-socialization |
12 | Reliving in the duality of hiding-finding sympathy |