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Background Increased numbers of children with chronic illnesses and/or disabilities who have complex care needs are living at home. Along with the transfer of care to the home setting, parents assume the primary responsibility of their child’s complex care needs. Accordingly, it becomes even more important to understand the evolving roles and challenges faced by parents of children with complex care needs in order to better support them. The aim of this paper is to present research findings that add to our understanding of the roles parents assume in parenting their children with complex care needs. Methods To arrive at a detailed and accurate understanding of families’ perspectives and experiences, the qualitative research design of ethnography was used. In total, 68 parents from 40 families were recruited. Data collection strategies included ethnographic methods of interviewing and photovoice. Several levels of analysis generated a sociocultural theme with subthemes representing how parents experienced raising children with complex care needs within the context of their life situations. Results Intense parenting as the overarching theme refers to the extra efforts parents had to commit to in raising their children with complex care needs. Parenting was described as labour-intensive, requiring a readiness to provide care at any time. This left parents with minimal time for addressing any needs and tasks not associated with caring for their child. The main theme is supported by four sub-themes: 1) the good parent; 2) more than a nurse; 3) there’s just not enough; 4) it takes a toll on the health of parents. Conclusions Overall, parents of children with complex care needs take on more roles as well as work more intensely at these roles than parents of healthy children. This, in turn, has led to the need for additional supports and resources for parents. However, to date, parents of children with complex care needs are still lacking adequate services and supports necessary to help them in their role of intense parenting. The findings sensitize professionals to the issues confronted by parents caring for children with complex care needs. Implications for further research and clinical practice are discussed.

Children of the First Nations and Inuit in Canada have a high propensity for lower respiratory tract infections. Overcrowding, poor housing, passive smoke exposure, and lack of breast feeding (Martens P, Bond R, Jebamani L, Burchill C, et al. http://www.umanitoba.ca/centres/mchp/reports/pdfs/rfn_pdfs/rfn_report.pdf.; MacMillan H, Walsh C, Jamieson E, Crawford A, Boyle M. http://www.hcsc.gc.ca/fnihbdgspni/fnihb/aboriginalhealth/reports_summaries/regional_survey_ch1.pdf.; Wardman AE, Khan NA. Int J Circumpolar Health 2004;63:81–92) have been cited as important contributing factors in the occurrence of lower respiratory tract infections. However, aspiration during swallowing has thus far not been considered as a co-factor in the occurrence of lower respiratory tract infections in these children. We present a retrospective case series of seven typically developing children of the Canadian First Nations and Inuit, in whom aspiration during swallowing was detected in the course of investigating associations with recurrent lower respiratory tract infections. None of the children had any of the known risk factors for aspiration during swallowing such as developmental variation, prematurity, neuromotor problems, or anatomic abnormalities of the upper aerodigestive tract. We speculate that aspiration during swallowing in typically developing children may be an important, previously unrecognized co-factor in the occurrence of lower respiratory tract infections, particularly in the communities of the Canadian First Nations and Inuit. Further prospective studies will be needed to determine whether aspiration during swallowing represents an independent risk factor for the occurrence of lower respiratory tract infections in these children. Pediatr Pulmonol. 2006, 41:912–915. © 2006 Wiley-Liss, Inc.