• DOI:10.1177/1367493515624008
• Corpus ID: 27563308

Parenting children with complex needs

@article{McCann2015ParentingCW,
  title={Parenting children with complex needs},
  author={Damhnat McCann},
  journal={Journal of Child Health Care},
  year={2015},
  volume={25},
  pages={179 - 181}
}

• D. McCann
• Published 30 December 2015
• Psychology, Medicine
• Journal of Child Health Care

Home care is now the expected model of care for children with complex needs. For the parents who assume the majority of the care for these children, the role requires extraordinary physical, emotional, social and financial resources (Murphy et al., 2007; Strunk, 2010). This special issue of Journal of Child Health Care recognizes the care provided by parents of children with complex needs, through research spanning more than a decade. The research includes parents of children with Down syndrome, life-limiting or -threatening conditions, physical, cognitive and learning disabilities, communicative disability, complex health needs and technology dependence. Six of the studies involve qualitative research with parents (mainly mothers), one study (Hewitt-Taylor, 2005) describes a survey of service providers and the systematic review (McCann et al., 2012) includes 32 studies involving parents caring for a child with complex needs. The parents describe their experiences of caring for their child with complex needs, the daily struggles and challenges, maintaining family life and relationships, the impact on siblings, the constant need for planning and the time demands – aspects of caring widely reported in research in this area. A key finding from the systematic review is the often considerable time commitment required by the parents, including time spent supervising or monitoring. The constant monitoring is highlighted by Nicholl (2015), with the mothers in that study literally needing to keep their child within sight at all times. Vigilance is also a key factor in parents of children with complex needs experiencing sleep deprivation and chronic exhaustion (McCann et al., 2015). But the parents also describe the positives associated with caring for a child with complex needs and how having the child as part of their family enriches all their lives – another theme common to research outside these studies. The qualitative studies originate from Ireland, England, Canada and Sweden. Despite the differences in health service provision between these countries, there are similarities in the parents’ experiences that raise important questions regarding the support, or lack of support, that parents receive. Three studies (Avis and Reardon, 2008; Johnson et al., 2006; Whiting, 2013) include descriptions of parents having to battle or fight to obtain the supplies or services their child needs. This navigating of the system takes a substantial amount of time (McCann et al., 2012) compounded by the time and energy parents spend attending appointments and coordinating care for their child (Nicholl, 2015; Pelchat et al., 2003). Parents of children with complex needs cannot sustain the level of care required by their child if they do not receive regular breaks, with research highlighting the physical and mental health costs Journal of Child Health Care