Health professionals perspectives of care for seriously ill children living at home

Abstract

IntroductionGlobal advances in medical knowledge and technology have resulted in increased survival of neonates with complex illnesses. Many of these neonates now live into childhood, however their care requirements have become more complex (Elias & Murphy, 2012; Maddox & Pontin, 2013; Schuster, Chung, & Vestal, 2011). Previously these children remained in a hospital setting, however the contemporary care setting is the family home with parents the primary carers and providers of their child's technical and personal cares (Dybwik, Tollali, Nielson, & Brinchmann, 2011; Elias & Murphy, 2012; Hewitt-Taylor, 2012; Maddox & Pontin, 2013; McCann, Bull, & Winzenburg, 2012). Parents/ families are now required to learn how to safely and effectively deliver technical interventions, following instruction from community nurses. Some examples of these interventions are: oxygen and ventilation therapy, tracheotomy care, suctioning, feeding-tube care, intravenous nutrition and intravenous drug regimens (Eilas & Murphy, 2012; Maddox & Pontin, 2013; Shuster et al., 2011; Whiting, 2013).Shuster and colleagues (2011) described care provided by parents/families as a 'shadow health care' (p. 91) system upon which health care services rely. Publically funded child health care systems would be unable to function without this level of parental support (Shuster et al., 2011). Buhler-Wilkerson (2007) argued home care could be the cornerstone of a system to meet the needs of the chronically ill. However, the management of technical, physical and emotional care for children at home has a direct impact on the parent/family in terms of physical, mental health and emotional resilience. Parents often have been found to experience altered roles, financial burden, marital strain, psychological distress (Carnevale, Alexander, Davis, Rennick, & Troini, 2006; Ling, 2012; Santacroce, 2003; Schuster et al., 2011; Whiting, 2013) and low quality of life (Al-Gamal, 2013). There continues to be the question of how to deliver funded care that has the potential to reduce the physical, emotional and financial burden for parent/family carers (BuhlerWilkerson, 2007; Shuster et al., 2011).It is important that home care for seriously ill children with complex medical needs is provided in the context of a child health model of care that is family-centred and that a partnership forms between the child, family and health professionals. Fowler et al. (2012) highlight that nurse partnership activities are not new to nurses who work with parents. Fowler and colleagues (2012) argue that partnership requires nurses to skilfully create the conditions for an effective relationship to emerge. This then provides opportunity for optimal collaboration and coordination to enhance better outcomes in care (Barnes & Rowe, 2008; Denboba, McPhearson, Kenney, Strickland, & Newacheck, 2006; Fowler et al., 2012; Kenny, Denboba, Strickland, & Newacheck, 2011; Price & McNeilly, 2009; Simkiss, 2011; Yarwood, 2008).The research reported here aims to contribute to the body of knowledge on the topic of health related care for seriously ill children living at home and health service evaluation. This has significance for medical, nursing and allied health professionals who care for seriously ill children and their families.BackgroundIt has been well established that families benefit from health care that is provided in an integrated and co-ordinated way, particularly when the child is being treated in their home (American Academy of Pediatrics: Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee, 2014; Association for Children with LifeThreatening or Terminal Conditions and their Families, & Royal College of Paediatrics and Child Health, 2003; Ministry of Health, 2010). Many of these children have complex and disabling health needs, sometimes requiring palliation. …