title: Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs.
abstract: 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.
authors.affiliation: College of Nursing, Faculty of Health Sciences, University of Manitoba, 89 Curry Place, Winnipeg, MB, R3T 2N2, Canada. Roberta.Woodgate@umanitoba.ca.
authors.forename: Roberta L
authors.initials: RL
authors.lastname: Woodgate
authors.affiliation: College of Nursing, Faculty of Health Sciences, University of Manitoba, 89 Curry Place, Winnipeg, MB, R3T 2N2, Canada. Marie.Edwards@umanitoba.ca.
authors.forename: Marie
authors.initials: M
authors.lastname: Edwards
authors.affiliation: College of Rehabilitation Sciences, Faculty of Health Sciences, University of Manitoba, R106 - 771 McDermot Avenue, Winnipeg, MB, R3E 0T6, Canada. Jacquie.Ripat@umanitoba.ca.
authors.forename: Jacquie D
authors.initials: JD
authors.lastname: Ripat
authors.affiliation: Rehabilitation Centre for Children, 633 Wellington Crescent, Winnipeg, MB, R3M 0A8, Canada. bborton@rccinc.ca.
authors.forename: Barbara
authors.initials: B
authors.lastname: Borton
authors.affiliation: College of Medicine, Faculty of Health Sciences, University of Manitoba, 260 Brodie Centre - 727 McDermot Avenue, Winnipeg, MB, R3E 3P5, Canada. GRempel@exchange.hsc.mb.ca.
authors.forename: Gina
authors.initials: G
authors.lastname: Rempel
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D019988:Children with Disabilities / Q000534:rehabilitation*; D005260:Female; D006301:Health Services Needs and Demand / Q000458:organization & administration*; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D016487:Parenting / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D013315:Stress, Psychological; D055815:Young Adult