Marie Edwards

Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs.

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.

Nurses’ Responses to Initial Moral Distress in Long-Term Care

While researchers have examined the types of ethical issues that arise in long-term care, few studies have explored long-term care nurses’ experiences of moral distress and fewer still have examined responses to initial moral distress. Using an interpretive description approach, 15 nurses working in long-term care settings within one city in Canada were interviewed about their responses to experiences of initial moral distress, resources or supports they identified as helpful or potentially helpful in dealing with these situations, and factors that hindered nurses in their responses. Using a thematic analysis process, three major themes were identified from the nurses’ experiences: (i) the context of the situation matters; (ii) the value of coming together as a team; and (iii) looking for outside direction. The work of responding to initial moral distress was more fruitful if opportunities existed to discuss conflicts with other team members and if managers supported nurses in moving their concerns forward through meetings or conversations with the team, physician, or family. Access to objective others and opportunities for education about ethics were also identified as important for dealing with value conflicts.

The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families

Abstract This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the ‘embodied space of care’. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision‐making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family‐based decision‐making and enhanced social inclusion of families and the importance of the renegotiation of power. HighlightsGeography concepts were used to understand the experiences of families of children with complex care needs (CCN) in the ‘embodied space of care’.Navigating the embodied space of the child within systems of care was a strong reality for families of children with CCN.Families of children with CCN often spoke of their roles as carers as being socially limiting.The socially constructed ‘embodied space of care’ affects family well‐being, decision‐making, and power negotiations.Enhanced social inclusion and the renegotiation of power differentials are critical for enhancing a family’s well‐being.