Going down a different road: first support and information needs of families with a baby with Down syndrome

Abstract

Objective: To explore the experiences of families with a baby with Down syndrome at the time of diagnosis, and their preferences for information and support in the early period after diagnosis. Design, setting and participants: A qualitative, interview‐based study of 18 families living in Victoria with a child with Down syndrome born between 2002 and 2004 who had not been diagnosed with the syndrome before birth. Interviews were transcribed verbatim and interpretive content analysis was undertaken. Results: Parental coping with the unexpected diagnosis of Down syndrome in their infant was influenced by the time interval between birth and disclosure of clinical suspicion of Down syndrome, the level of certainty of the attending physician at the time of disclosure, and the time interval between disclosure of clinical suspicion and confirmation of karyotype. Initial uncertainty and a delay in the diagnosis were detrimental to parental coping, as was premature communication of the news. Perinatal complications increased parental anxiety regarding their child's condition and future. Individual communication style of midwives and physicians was a powerful predictor of parental adaptation. Parental needs for support and information were facilitated through normalising postnatal care, ensuring privacy, and providing early access to peer support and up‐to‐date written information. Many parents would have appreciated access to a liaison worker. Conclusion: The experiences of parents in this study provide practice points for improving postnatal care with minimal changes to formal service systems.

An Integrated Literature Review of the Knowledge Needs of Parents With Children With Special Health Care Needs and of Instruments to Assess These Needs

“…The knowledge needs varied greatly between the individuals (Hummelinck & Pollock, 2006;Jackson et al, 2008), and knowledge needs vary over time (Aite et al, 2006;Chuacharoen, Ritthagol, Hunsrisakhun, & Nilmanat, 2009;Hummelinck & Pollock, 2006;Joffe, 2001;Kuttenberger, Ohmer, & Polska, 2010;Lanners & Lamert, 1999;Muggli, Collins, & Marraffa, 2009;Nuutila & Salanterä, 2006;Stinson & McKeever, 1995;Young et al, 2001). The findings show that parents of children with special health care needs have needs for knowledge about the condition or illness, support, treatment, daily care of the child, the future, how to explain the illness to others, equipment, organizational issues, and the effect of the illness on the family.…”

“…The parents' ability to cope was strengthened if they could contact a health care professional or a liaison worker who knew their children and family at any time (Koshti-Richman, 2009;Muggli et al, 2009;Nuutila & Salanterä, 2006;Wiberg et al, 2007). Guidance and advice adapted to the family's daily life were appreciated the most (Nuutila & Salanterä, 2006), and a specialist nurse, a liaison, or key worker who supports the parents in the individual care for their children can help the parents cope with the care of their children (Chow, 2001;Diehl et al, 1991;Jackson et al, 2008;Pain, 1999).…”

“…Parents of children with special health care needs have many knowledge needs, but not all parents have the same needs for knowledge and these knowledge needs change over time (Aite et al, 2006;Chuacharoen et al, 2009;Graves & Hayes, 1996;Hummelinck & Pollock, 2006;Joffe, 2001;Kuttenberger et al, 2010;Lanners & Lamert, 1999;Muggli et al, 2009;Nuutila & Salanterä, 2006;Stinson & McKeever, 1995;Young et al, 2001). Therefore, nurses must have instruments that can assess these needs at various times in the child's life (Hummelinck & Pollock, 2006;Joffe, 2001).…”

Clinical practice

“…The conversation must take place with both parents in a quiet setting as soon as the diagnosis of DS is suspected, in the presence of a paediatrician, an obstetrician and the child with DS. The timing of the disclosure of specific DS-related problems must be balanced with respect for the opportunity for parents to welcome their child (Table 2) [19, 26]. …”

Cesarean delivery rates in Down syndrome pregnancies

“…The three major phenotypic manifestations of Down syndrome children include (i) Intellectual impairment [3]; (ii) a primary immune deficiency with increased risk for infections, lympho-proliferative disorders, and autoimmune diseases [4][5][6][7][8], and (iii) dysmorphic features and in some cases congenital abnormalities mostly involving the heart and gastrointestinal tract [9][10][11]. Although the majority of Down syndrome pregnancies can be detected prenatally [12,13], not all pregnant women opt for antenatal diagnostic testing [14][15][16][17] and some make the decision to continue their affected pregnancy.…”