Review: mothers of children with physical or mental disabilities experience emotional compromise between acceptance and denial.

Main findings 12 studies were included. The process of mothering entailed 4 steps. (1) Becoming the mother of a disabled child. Timing: mothers of newborns with obvious anomalies held diminished roles as staff cared for their infants. Mothers felt frustrated when staff made decisions about their ability to cope and when staff provided a false protection. When a child’s disability was discovered, mothers had to deal with the loss of the “normal” child and acceptance of a different child. Emotions: emotions commonly expressed by mothers were injustice, fear, anxiety, grief, shock, disappointment, despair, and guilt. (2) Negotiating a new kind of mothering. The learning curve: mothers learnt the “extras” of caregiving through self education, trial and error, or education provided by healthcare staff. Relationship with the healthcare system: initially, mothers held a naïve trust in physicians and medicine. Over time they became proactive in their child’s care. Mothers sometimes felt that the medical staff was insensitive and disrespectful of their child’s humanity. Mother-child relationship:mothers devised unique ways to communicate with their child and reported an intensity in the mother-child relationship because of the child’s dependency. Intrafamily relationships: there were positive and negative familial responses to the presence of a disabled child. Lack of family support or critical relatives led to strain and emotional pain. Awareness of societal judgment: mothers felt guilt or blame for their child’s disability and were aware of the lack of societal acceptance of their child. (3) Dealing with daily life: it will never be the same.Caregiver burden:mothers’ lives were the most changed because they were the primary caretakers and had little daily help. Alteration in employment status: many mothers chose to stop or reduce their work outside the home to meet their caring demands. Social isolation: mothers expressed psychological and physical isolation as a result of adhering to strict medical regimens, a perceived lack of acceptance of their child by others, and feelings of great responsibility for their child’s wellbeing, all making it difficult to get out alone. Uncertainty: uncertainty was related to the susceptibility, instability, and unpredictability of their child’s condition. They often second guessed their efforts, fearing doing something wrong. (4) The process of acceptance/denial. The significance of “normalcy”: mothers wished their child could be “normal” and looked for signs of normalcy. They perceived that children were treated differently if they looked “normal”. The embrace of paradox: mothers came to an emotional compromise between acceptance and denial. They accepted their children as they were but never gave up hope for improvement.