Parenting a child with Down syndrome: A qualitative study of everyday practices in Danish families

Abstract

Down syndrome is a commonly encountered condition within genetic counseling. In contrast to other, rarer genetic causes of intellectual disability, public narratives about Down syndrome exist (Thomas, 2021). In addition, the syndrome stands out as one of few genetic conditions for which prenatal screening has been widely adopted in recent decades (Boyd et al., 2008).Guidelines for communicating a diagnosis of Down syndrome recommend the genetic counseling to include the potential future family life (Sheets, Crissman, et al., 2011). Studies suggest that both parents and genetic counselors believe that information about the

“It Was Such a Different Experience”: a Qualitative Study of Parental Perinatal Experiences When Having a Subsequent Child After Having a Child Diagnosed with Autism

“…Having a child diagnosed with autism appears to intensify some of the common experiences of parenting throughout the process of pregnancy and the accompanying anticipation and uncertainty; the process of adjusting and finding balance with the addition of a new child; and the process of moving forwards and managing uncertainty and challenges as a parent. The findings of the current study lend support to broader research in the field of parenting experiences of parents of a child diagnosed with autism (Depape & Lindsay, 2015;Hoogsteen & Woodgate, 2013;Navot et al, 2016;Nicholas et al, 2016;Woodgate et al, 2008), as well as work in the field of parenting experiences of parents of children with chronic health conditions (Ray, 2002;Rempel & Harrison, 2007), and genetic disorders such as Down Syndrome (Steffensen et al, 2022).…”

“…Themes of "parenting plus" and "extraordinary parenting" have been previously identified-described as the additional demands of parents and the additional expectations parents place upon themselves in the context of providing additional support and monitoring for their child in the context of additional needs and uncertainty (Ray, 2002;Rempel & Harrison, 2007), with parallels to the "uncertainty" and "vigilant parenting" identified in this study. Similarly, themes around parents sense of a need to be present and focussed, similar to the "finding balance" theme identified here, have been identified in qualitative research examining parents of children with Down Syndrome (Steffensen et al, 2022). Recognising the parallels between the experiences of parents of children with chronic conditions or genetic disorders and parents of autistic children lends reinforcement for applying similar standards of care to support parents regardless of the unique nature of the child's condition.…”

Considerations for the use of qualitative methodologies in genetic counseling research

“…The process consists of six sequential and recursive phases of analysis: familiarization with the data; coding; generating initial themes; reviewing themes; refining; writing up. One example is a study by Steffensen et al (2022), who used reflexive thematic analysis to explore the impact of parenting a child with Down syndrome on everyday practices. Reflexive thematic analysis has been designed to be rigorous in its approach to the analysis but flexible in its application and can be used in combination with a range of theoretical frameworks.…”

“…One example is a study by Steffensen et al (2022), who used reflexive thematic analysis to explore the impact of parenting a child with Down syndrome on everyday practices. Reflexive thematic analysis has been designed to be rigorous in its approach to the analysis but flexible in its application and can be used in combination with a range of theoretical frameworks.…”

Adaptation at the Family Level in Families of Individuals With Down Syndrome: A Scoping Review

“…x Steffensen et al, 2022 Thus, the aim of this study was to qualitatively explore parents' experiences of everyday life in families with a child with DS focusing on how parents understand their everyday practice.…”