Title

The Gastrostomy Tube: A Mother’s Blessing and Curse

Start Time

21-10-2011 12:25 PM

End Time

21-10-2011 12:55 PM

Session Type

Event

Abstract

Background: A greater number of women are being challenged with feeding their children by alternative means such as gastrostomy tubes (g-tube) as medical care advances have allowed a shift to care for medically fragile children in the home. There is limited research that examines mothers’ experiences around caring for their children after receiving a g-tube and its impact on daily occupation. The purpose of this research was to explore mothers’ experiences of feeding and caring for children with a g-tube.

Methods: Seven mothers with children, who all received the majority of their nutrition through a g-tube, participated in the qualitative study. The families were selected for participation to achieve maximum variation providing an opportunity for observing and discovering commonalities across a diverse group of experiences. Narrative interviewing techniques were used to collect data through interviews in the mothers’ preferred settings with each of the two to four interviews lasting up to two hours. Narrative and thematic analysis building on a phenomenological approach were used to analyze the data.

Results: Through their stories, mothers expressed gains and unanticipated challenges after the placement of a g-tube. Three primary themes were identified: mixed blessings, hidden blessings, and unrealized promises. Stories expressed the deeply intertwined benefits and disappointments associated with the g-tube placement further complicating the role of the g-tube in the child and mother’s daily life. Subtle benefits, beyond what is typically described in the literature, were revealed through stories surrounding everyday mothering occupations.

Conclusions: Although the g-tube may often be considered medically necessary, the full impact may reach well beyond the narrow bio-medical complications currently considered in the literature. The exhaustive work mothers do on daily basis to care for their child and how that care is not necessarily made easier with the insertion of a g-tube needs to be considered. Children continued to struggle with certain complications even after the g-tube was placed continuing to impact their overall participation and engagement. The findings also supported providing an individualized approach to allow mother’s to adapt and modify the child’s care in order to better suit the child and mother’s daily activities creating the possibilities for hidden benefits the g-tube can also provide.

Objectives for Discussion:

  1. Discuss the impact of mothering a child with a g-tube on daily occupations, including implications relevant for the decision making process.
  2. To what extent does the transaction of mother and child occupations around nutritional intake further support or interfere with the mother-child relationship?

References

Craig, G., & Scambler, G. (2005). Negotiating mothering against the odds: Gastrostomy tube feeding, stigma, governmentality and disabled children. Social Science & Medicine, 62(2006), 1115-1125.

Guerriere, D., McKeever, P., Llewellyn-Thomas, H., & Berall, G. (2003). Mother's decisions about gastrostomy tube insertion in children: Factors contributing to uncertainty. Developmental Medicine & Child Neurology, 45, 470-476. http://dx.doi.org/10.1111/j.1469-8749.2003.tb00942.x

Judson, L. (2004). Protective care: Mothering a child dependent on parenteral nutrition. Journal of Family Nursing, 10 (1), 93-120. http://dx.doi.org/10.1177/1074840703260907

Larson, E. (2000b). The orchestration of occupation: The dance of mothers. The American Journal of Occupational Therapy, 54(3), 269-280. http://dx.doi.org/10.5014/ajot.54.3.269

Riessman, C. (1993). Narrative analysis (Vol. 30). Newbury Park, CA: Sage Publications.

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Research paper

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Oct 21st, 12:25 PM Oct 21st, 12:55 PM

The Gastrostomy Tube: A Mother’s Blessing and Curse

Background: A greater number of women are being challenged with feeding their children by alternative means such as gastrostomy tubes (g-tube) as medical care advances have allowed a shift to care for medically fragile children in the home. There is limited research that examines mothers’ experiences around caring for their children after receiving a g-tube and its impact on daily occupation. The purpose of this research was to explore mothers’ experiences of feeding and caring for children with a g-tube.

Methods: Seven mothers with children, who all received the majority of their nutrition through a g-tube, participated in the qualitative study. The families were selected for participation to achieve maximum variation providing an opportunity for observing and discovering commonalities across a diverse group of experiences. Narrative interviewing techniques were used to collect data through interviews in the mothers’ preferred settings with each of the two to four interviews lasting up to two hours. Narrative and thematic analysis building on a phenomenological approach were used to analyze the data.

Results: Through their stories, mothers expressed gains and unanticipated challenges after the placement of a g-tube. Three primary themes were identified: mixed blessings, hidden blessings, and unrealized promises. Stories expressed the deeply intertwined benefits and disappointments associated with the g-tube placement further complicating the role of the g-tube in the child and mother’s daily life. Subtle benefits, beyond what is typically described in the literature, were revealed through stories surrounding everyday mothering occupations.

Conclusions: Although the g-tube may often be considered medically necessary, the full impact may reach well beyond the narrow bio-medical complications currently considered in the literature. The exhaustive work mothers do on daily basis to care for their child and how that care is not necessarily made easier with the insertion of a g-tube needs to be considered. Children continued to struggle with certain complications even after the g-tube was placed continuing to impact their overall participation and engagement. The findings also supported providing an individualized approach to allow mother’s to adapt and modify the child’s care in order to better suit the child and mother’s daily activities creating the possibilities for hidden benefits the g-tube can also provide.

Objectives for Discussion:

  1. Discuss the impact of mothering a child with a g-tube on daily occupations, including implications relevant for the decision making process.
  2. To what extent does the transaction of mother and child occupations around nutritional intake further support or interfere with the mother-child relationship?