Children with Down syndrome are less likely to be breastfed than typically developing children, and breastfeeding has a lower duration compared to recommendations of the World Health Organization. The aim of this study was to understand the breastfeeding experiences of mothers of children with Down syndrome, including their perceptions of the breastfeeding process and their specific practices. This is a qualitative study with 10 participants, mothers of children aged between 2 months and 9 years. Snowball sampling was used for participants' selection, and semi-structured interviews conducted in participants' households. Three categories emerged: "the breastfeeding experience," involving the process of breastfeeding, the breast milk, feelings, and difficulties of this practice; "experiences of health care," encompassing the support received by health professionals, dissatisfaction with health services, lack of support in breastfeeding, and discontent with health professional behavior; and "learning about Down syndrome," with search for information by parents and advice to health professionals. In this study, we found evidence that breastfeeding success relies very much on mothers' willingness and support of health professionals, namely, nurses. Findings from this study suggest that support of a multidisciplinary team is essential to the success of breastfeeding. Greater awareness is needed regarding the unique rewards and challenges of breastfeeding these infants, as well as how families cope with the ongoing challenges. Therefore, this research is relevant to understand the experiences of mothers of children with DS about breastfeeding, identifying the inhibiting factors, in order to create more appropriate strategies to intervene and implement practices that contribute to the support and promotion of breastfeeding. Results will also influence the education of health professionals, emphasizing the importance of multidisciplinary teams for a comprehensive care and contributing to increasing evidence available about this topic.
The concept of guided participation is central to theory for supporting families in developing competencies for care of their low birth-weight infants. Guided participation is a process through which an experienced person helps another person who has less experience to become competent in practices that are personally and socially meaningful practices of everyday life. A practice is made up of socially formed activities directed to accomplishing a recurring goal. For a parent, infant care-giving encompasses protecting, comforting and nurturing activities, including feeding. For premature infants, a mother's care-giving begins during the neonatal intensive care unit stay and continues, after the infant's discharge from hospital, in the home. Care-giving competencies are addressed through guided participation of a mother in her care-giving practice. In this process, her working model of herself as parent, her infant, and feeding is constructed and revised through the guided participation process. In this paper, a general theory of guided participation that could be used to promote care-giving competencies is described. Two cases from a pilot study are presented to illustrate the application of the theory to a mother's feeding practice with infants who were born prematurely and who developed problems with feeding during the first year of life. These cases indicate that guided participation offers a means of precisely tailoring support for care-giving to the mother's needs and goals for development of competencies. Further research on how guided participation is best introduced to families of varying resources and life circumstances, how it is best implemented across settings as the infant moves from hospital to home, and how nurses can apply its principles with available resources and opportunities is needed.
The purpose of this research was to examine relationships among family demands, family resources, family problem-solving communication, family coping, and sibling well-being in 41 families of children with Down syndrome. The guiding framework for this research was the resiliency model of family stress, adjustment, and adaptation. Mailed questionnaires were completed by mothers and siblings closest in age to the children with Down syndrome. Results indicate that, as a group, the siblings in this study had favorable self-concepts. In addition, maternal reports typically indicated that these siblings were socially competent, with a low incidence of behavior problems. All four family variables were significantly associated with at least one of the indicators of sibling well-being. This research adds a critical piece, the sibling piece, to a fascinating puzzle concerning how families respond to the multiple challenges associated with raising a child with Down syndrome.
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