Children's and Parents' Experiences and Expectations of their Roles in Hospital-A Constructivist Grounded Theory study

Abstract

Background: Family-centred care (FCC) is the preferred model of care for hospitalised children and their families, both in Ireland (Coyne, 2013) and internationally (Feeg et al, 2016). There is no internationally agreed definition for FCC for hospitalised children. This lack of definition has been cited as contributing to an inconsistent application of FCC in practice (Coyne et al, 2011; Feeg et al, 2016; Coats et al, 2018). A concept analysis identified that increased day-case activity, early discharge and increased patient throughput results in reduced time spent in hospital and increased patient acuity. An extensive literature review revealed that parents wish to participate in the care of their child in hospital, but the degree to which they wish to do so varies and must be negotiated between the nurse and the individual child and parent (Coyne, 2013; Watts et al, 2014; Feeg et al, 2016). There is also evidence that children's nurses have been applying some elements of FCC to their practice for decades, albeit inconsistently. The evidence indicates that children's nurses have been applying some elements of FCC to their practice for decades, albeit inconsistently. There is no hard evidence to inform healthcare professionals if the application of a family-centred approach to care makes a difference to the families' healthcare experience. Furthermore the voice of the child is noticeably absent from existing research on the topic. Aim: To explore children's and parents' experiences and expectations of their roles while in hospital and develop a theory to explain the involvement of the child and parent in care in hospital. Methodology: This research study used a constructivist grounded theory approach (Charmaz, 2006; 2014). Ethical approval was obtained. Data were collected during the Coronavirus 2019 (COVID-19) pandemic, through semi-structured, face-to-face interviews with hospitalised children (n=9) aged 9-12 years and with adolescents (n=14) aged 13-16 years. Parents (n=24) of hospitalised children were also interviewed. Initially purposeful sampling was used. Data collection and analysis occurred simultaneously. Following analysis of the data from initial interviews, theoretical sampling was employed until data saturation was achieved. Findings: The three main concerns of children and adolescents were: a) my parent keeping me company and providing emotional support, b) my parent helping me/advocating for me and c) doing my own personal care. The parents' key concerns were a) keeping my child company, b) advocating for my child, c) parental roles evolving with limited guidance from nurses, d) parents helping nurses and e) parents "making do with" inadequate facilities. The emergent grounded theory that explains the parents' roles and responsibilities while being with their sick child in hospital during the COVID-19 pandemic is: "An advocating companion with parental roles evolving in an ad hoc manner". Conclusion: Ongoing education for registered nurses must include child- and family-centred care and advocacy. Parents helping nurses in the context of the nurses being constantly busy was a recurring concern of parents. Parents clearly need better support, and clear negotiation of care. The development of the role of the Healthcare Assistant may be another way of supporting nurses in the delivery of safe and effective child- and family-centred care.