An analysis of the impact on the quality of life of mothers who have a child with a cleft lip and palate

Bhabha, Zaheda
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A descriptive study was undertaken on mothers who have children with non-syndromic cleft lip and palate. It involved 42 mothers from one public and one private hospital in Johannesburg during the period starting January 2009 and finishing in December 2009. A self-administered questionnaire was used to determine the Impact on the Quality of Life exerted by these children on their mother’s lives. The majority of the mothers in the study are African or White, comprising 11 African, 17 White, seven Indian and four Coloured mothers. Thirty-five (35) were married, one was single, and five chose not to respond. Twenty-one (21) of the mothers interviewed had high school education and 19 tertiary education. Thirty-one (31) were employed; seven unemployed and two gave no response. Sixty-five percent (65%) of the children are male and 35% are female of whom 48.8% were diagnosed prenatally and 51.2% postnatally. Only forty-seven percent (47%) of participants received adequate counselling during prenatal and postnatal care while 53% did not. Seventy-eight percent (78%) of the women in the study said they would attend prenatal care for their subsequent children. Impact on Family Scale This study examined the difference in quality of life for the family after the birth of the affected child as compared to before the birth assuming that parents lived a near normal life before the birth of their child. It can be seen that the majority of the women identified the following five items: being overtired and exhausted; managing to cope with the condition; family becoming closer as a result of the illness; partners analysing problems together; and treating the child as normally as possible as affecting their quality of life. There is no significant difference in most of the items across the four races. That is, African, White, Indian and Coloured mothers assessed the items similarly, except when considering the question of additional income being required to cover medical expenses: here African and Coloured mothers found that more income was required to cover medical expenses while Indian and White mothers disagreed. When comparing the relationship between the level of education of mothers and the impact on the family there is a similar trend as regards race. There is no significant difference in the items between the two levels of education, except for the need to reduce time spent at work to care for the sick child, and travelling to hospital which both add to the mental and a physical strain. Mothers with a tertiary education found that this was not a problem; however those with a high school education found that it impacted badly on their lives. Most parents said they would have preferred an antenatal diagnosis and adequate counselling prior to the birth as well as post-delivery, and they will access this service for subsequent children. The research highlights important factors affecting parents whose children have cleft lip and palate. Among the most important of these are that a prenatal diagnosis is preferred in most cases, also that counselling—both in the prenatal and postnatal period—plays a vital part in managing the sick infant. Other important findings highlighted were that mothers with a tertiary education had lower-impact scores than mothers with a high school education; also that families found themselves drawn together and helping one another manage circumstances better.