BackgroundIncreased 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.MethodsTo 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.ResultsIntense 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.ConclusionsOverall, 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.
BACKGROUND Nurses working night shifts are at risk for sleep deprivation, which threatens patient and nurse safety. Little nursing research has addressed napping, an effective strategy to improve performance, reduce fatigue, and increase vigilance.OBJECTIVE To explore nurses' perceptions, experiences, barriers, and safety issues related to napping/not napping during night shift.METHODS A convenience sample of critical care nurses working night shift were interviewed to explore demographics, work schedule and environment, and napping/ not napping experiences, perceptions, and barriers. Transcripts were constantly compared, and categories and themes were identified. RESULTS Participants were 13 critical care nurses with an average of 17 years' experience. Ten nurses napped regularly; 2 avoided napping because of sleep inertia. The need for and benefits of napping or not during night shift break were linked to patient and nurse safety. Ability to nap was affected by the demands of patient care and safety, staffing needs, and organizational and environmental factors.CONCLUSIONS Nurses identified personal health, safety, and patient care issues supporting the need for a restorative nap during night shift. Barriers to napping exist within the organization/work environment. (Critical Care Nurse. 2011;31[2]: e1-e11)
Siblings prioritized the relationship with their sisters and brothers with CCN in their life, and a great deal of their participation was chosen with their sibling in mind. Sibling-to-sibling relationships were distinct and meaningful and, as a result, participation was always done mindfully and with the family needs at the forefront. Nonetheless, clinicians caring for children with CCN must keep in mind the challenges that siblings of children with CCN experience and provide strategies to siblings that will help to promote their participation in everyday life.
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