An evaluation of a model of care for children with serious illnesses and their families in New Zealand

Background: Due to advances in knowledge and medical technology, many neonates and children survive pre-term birth and serious illness. They are cared for by their families, predominantly their parents, in the family home. While there is a high demand on health services to provide care to the seriously ill child, the highest burden of care falls on the child’s family. The impact of the child’s complex and highly technical care needs on the family unit is often not understood. Although health service providers can provide high quality care, at times, they do not fully comprehend the issues of importance to the child and the child’s family. A family-centred model of care, with partnership between health clinicians, the child and family, was developed in response to these circumstances. This model of care provided nursing care to children with serious illness and psychological care to the entire family. The child health organisation clinicians worked collaboratively with external health service providers (health professionals) to provide this care. While it has been operational for some time, this model of care had not been fully evaluated. Aim: The aim of this research was to evaluate this model of care, which is provided by a child health organisation (program) in New Zealand, in terms of its capacity to provide care to the child with serious illness, the child’s siblings, their parents, and the child’s external health service providers. Methodology: Pawson and Tilley’s realistic evaluation methodology was used in this qualitative study to understand what worked within the model of care, for whom and in what context. It was critical to understand if the model’s psychological and nursing care interventions were useful in easing the burden of care on families. Methods: Twenty-one participants, namely, one child with serious illness, four healthy siblings, four parents and twelve external health service providers participated in the study. The two methods used for data collection were focus groups with the siblings, parents and external providers, and a semi-structured interview with the child with serious illness. Analysis: A two-step approach was used. The first step, thematic analysis, provided a systematic method to manage the quantity of participants’ data. The identified themes were then analysed in the second step of the analysis—realistic evaluation. The themes were analysed in relation to the realistic evaluation formula of context, mechanism and outcome (C +M = O) in order to understand what mechanisms were triggered, and from what context, inorder to produce an outcome. Findings: Five key themes were identified: ‘coping under pressure’, ‘experience and skill eases the burden’, ‘adjusting to rare health conditions and new circumstances’, ‘advocacy and flexibility make a difference’, and ‘the challenge of asking for help’. Four CMO configurations were identified: ‘burden in care’, ‘psychological distress in care’, ‘a partnership with families’ and ‘a partnership with service providers’. The findings clearly depict what the child with serious illness, parent and sibling participants deemed was critical in order for them to cope as a family. Having skilled knowledgeable clinicians delivering the model of care, which provided both specialist nursing and psychological care, while working in collaboration with external health service providers, reduced psychological distress and the burden of care for families. The child health organisation’s clinicians, through their collaborative work with external health service providers, reduced isolation and burden for these providers in their care delivery to children with serious illnesses. Participants chose to engage with the program due to the trusting and respectful relationships developed in regard to the competency of the program clinicians. These attributes were significant for the family-centred care and partnership model for it to be useful for the child with serious illness, their siblings, parents and external health service providers. The model of care fulfils a societal need for skilled nursing and psychological support within health care services for children with complex health conditions. These findings will contribute to the current literature available in this field, provide opportunity for further development of the current model of care with the potential to inform other similar programs internationally, along with influencing child health policy in New Zealand, to relieve the burden of care on families.