Understanding the views of parents of children with special needs about the nursing care their child receives when in hospital: a qualitative study

Abstract

This article reports a qualitative study designed to explore parents' views on how their child with additional needs had been cared for by hospital nursing staff, focusing on how well their own and their child's needs had been identified and met. Twelve interviews with parents of children with additional needs and a thematic analysis of the interview data was conducted. Four themes were developed to provide an insight into parents' views about their experiences: their prior experiences of hospital care, including the process of being told the original diagnosis; communication with staff; nurse-parent relationships; and perceptions of nurses and nursing care. It concludes that parents experience some difficulties in developing a trusting relationship with the nurses caring for their child with additional needs. Parents perceive that nurses are not always able to recognize and respond to their needs when caring for their child. Failure to address these needs can interfere with the development of effective nurse-parent relationships.

Roles of nurses and parents caring for hospitalised children

“…Although negotiation is a high priority for some nurses (Young et al 2006), parents still reported that barriers between nurses and parents are not addressed (Roden 2005, Coyne and Cowley 2007, Coyne 2008, Avis and Reardon 2008. However, nurses who were interviewed in the study by Young et al (2006) cared for children with acute medical needs, whereas Avis and Reardon (2008) interviewed the parents of children with special needs. Those who cared for the latter group of children may have assumed that the parents were more competent to provide care for them, and that negotiation was unnecessary.…”

“…In these respects their expectations appear to be aligned with those of nurses (Paliadelis et al 2005, Roden 2005, Lam et al 2006, Coyne and Cowley 2007, Avis and Reardon 2008, Sousa et al 2013. Indeed, 97% of the parents who were interviewed in a study by Sousa et al (2013) said that if they were staying overnight with their children, they should participate fully in their care throughout the night, alongside the nurses.…”

“…However, in the study by Paliadelis et al (2005), nurses said that they discourage parents from taking responsibility for any roles except that of basic parenting during their children's hospitalisation. Failure to engage in negotiation could give rise to feelings of anxiety and stress for parents and nurses, due to the uncertainty about roles and conflicting expectations (Coyne and Cowley 2007, Coyne 2008, Avis and Reardon 2008.…”

“…Avis and Reardon (2008), who interviewed parents of children with special needs, highlight parents' concerns about being expected to provide their children with R C N i P r o o f medicine, food and personal care. In the absence of negotiation, it seems that parents think they are powerless and so comply with nurses' requests (Espezel and Canam 2003, Roden 2005, Reeves et al 2006, Coyne and Cowley 2007, Avis and Reardon 2008, Sousa et al 2013. Coyne and Cowley (2007) suggest that parents are not confident that nurses will be available when they need them due to competing demands on their time.…”

Exploring the Perceived Met and Unmet Need of Life-Limited Children, Young People and Families

“…The need for good communication that prepares parents or legal guardians for the eventuality that their child might or will die has been identified as an important factor in coping with the situation (Avis & Reardon, 2008;Coad et al, 2014;Midson & Carter, 2010). The importance of good communication within families has also been highlighted as a significant factor in how well they cope with a life-threatened or life-limited child (Coad et al, 2014).…”