Stefan Mitterer successfully defended his thesis on 07 March 2024
Stefan Mitterer’s dissertation entitled “Specialised Paediatric PAlliativE CaRe: Assessing Economic outcomes in a multi-site context of various care settings (SPhAERA-E)” aimed to enhance our understanding of the financial burden experienced by families of children with life-limiting conditions (LLC). Its second aim was to investigate the funding of Specialised Paediatric Palliative Care (SPPC) programmes in Switzerland.
In recent decades, the prevalence of LLCs – conditions for which there is no reasonable hope of cure and where premature death is likely – in children has been increasing. As parenting a child with an LLC is an enormously challenging and demanding experience, parents of these children are at an increased risk of profound caregiver burden. Besides physical, psychological, emotional and social burdens, this also includes financial burden from out-of-pocket medical and non-medical expenses and employment-related income loss. While a growing body of literature has explored the physical, psychological, emotional and social burdens, evidence on the financial burden remains limited. Moreover, inconsistencies in cost measures, definitions and methodological approaches are likely constraining efforts to precisely measure families’ financial burden. Yet, such evidence is pivotal for identifying and addressing the unmet financial support needs of parents through effective interventions delivered by SPPC teams. In Switzerland, however, funding issues may impede the provision of SPPC.
In a first step, Stefan Mitterer’s dissertation provides an overview of cost indicators and outcome measures used to measure financial burden in families of children with LLCs. Based on this overview a framework for measuring families’ out-of-pocket medical and non-medical expenses was developed, and clear recommendations for assessing income loss and financial support were provided. This can help to generate robust evidence for developing effective, evidence-based interventions aimed at the prevention and relief of financial burden in affected families.
Secondly, the dissertation proceeds with a cohort study investigating hospitalisation- and death-related financial and employment implications experienced by families of children with LLCs. Over care and bereavement follow-up assessments of 330 and 300 days, respectively; a broad range of out-of-pocket non-medical expenses and employment-related outcomes were analysed. The results showed that families incur higher travel and accommodation expenses during hospitalisation than during non-hospitalised periods. In addition, during the first 120 days of bereavement, more than one-fifth of grieving parents increased their work commitments.
Thirdly, the dissertation conceptualised the funding of SPPC programmes in Switzerland. The results revealed that current funding structures are complex and fragmented, combining funding from public, private and charitable sources. In addition, in consultation with an expert panel, 23 obstacles to and 29 priorities for funding these programmes sustainably were identified. The highest level of consensus was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and the sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients.
This dissertation underscores the significance of providing financial support to families of children with LLCs. In addition to the provision of medical care and psychosocial support, SPPC programmes can support families by addressing their financial support needs. To enable these programmes to provide proactive support, it is essential that they are equipped with sufficient financial and personnel resources.