Specialised paeditric palliative care: assessing economic outcomes in a multi-site context of various care settings (SPhAERA-E)

Over the last decades, the prevalence of life limiting conditions (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. However, there is an absence of literature on how illness related events, such as a child’s hospitalisation or even death, contribute to these costs. Moreover, inconsistencies in the outcome measures and methodological approaches used to quantify financial burden limit the interpretation and comparability of research findings, making it inherently difficult to draw conclusions about the magnitude of the financial burden experienced by affected families.
Nevertheless, robust evidence on the sources and determinants as well as the true magnitude of families’ financial burden is crucial for enabling care and support interventions, such as specialised paediatric palliative care (SPPC), to effectively address families’ financial support needs. SPPC is advocated as a standard of care for children with LLCs and their families. However, despite the acknowledged benefits of SPPC, funding constraints have emerged in Switzerland, which likely limit its accessibility and provision to families in need.
Therefore, this dissertation investigated existing measures of financial burden in families of children with LLCs, explored hospitalisation and death related financial and employment implications for these families and examined current funding structures, obstacles and priorities regarding the funding of SPPC programmes in Switzerland.
In conducting this dissertation, the published literature investigating financial costs incurred by families of children with LLCs was reviewed, economic data from the larger ‘Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings (SPhAERA)’ study was analysed, and an expert panel on the provision and funding of SPPC in Switzerland was consulted.
Overall, this dissertation encompasses five chapters:
The first chapter of this dissertation provides an overview of the definition and prevalence of LLCs in children and embeds financial burden within the wider context of parental caregiving, including the multiple caregiver burdens experienced by parents. This sets the stage for an introduction of the conceptual framework guiding this research. This, in turn, is followed by a description of SPPC and a brief presentation of the SPhAERA study. A presentation of the rationale and aims concludes Chapter 1.
The scoping review presented in Chapter 2 provides an overview of cost indicators and outcome measures used to measure financial burden in families of children with LLCs. The retrieved cost indicators and outcome measures were categorised into three broad groups: direct costs, that is, out of pocket medical and non-medical expenses; indirect costs and financial support. The review suggests that not all key components of families’ financial burden were consistently measured across reviewed studies. To facilitate future investigations of financial burden, a framework for comprehensively measuring families’ out of pocket medical and non medical expenses was developed, and clear recommendations for assessing income loss, opportunity costs, and financial support were provided.
Chapter 3 reports the results of a cohort study that investigated hospitalisation and death related financial and employment implications experienced by parents 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 using descriptive statistics and fixed effects regressions. The analysis included 59 mothers and 51 fathers of 61 children. 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.
In the research presented in Chapter 4, a four step conceptualisation process, including a document analysis was used to conceptualise the funding of hospital based consultative 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, a wide range of obstacles to and priorities for funding these programmes sustainably were identified. Overall, 21 experts participated in the modified Delphi study and identified 23 obstacles and 29 priorities. The highest level of consensus (>90%) 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.
Chapter 5 provides a synthesis and discussion of the findings of this dissertation. The chapter starts with a discussion of the sources and determinants of financial burden in families of children with LLCs. This is followed by a discussion of how SPPC programmes can detect and actively address families’ financial burdens. In this regard, the chapter also discusses potential implications of funding shortfalls on the provision of support aimed at addressing families’ financial support needs. This in turn is followed by a brief discussion of contextual factors. Furthermore, the strengths and limitations of this research are examined while also presenting implications for future research, policy and practice.
In conclusion, SPPC programmes can help to address the financial support needs of families of children with LLCs. To enable these programmes to provide proactive support, it is essential that they are equipped with sufficient financial and personnel resources. In Switzerland, where SPPC programmes face major funding challenges, policy makers should establish an adequate financial and regulatory framework that facilitates the widespread implementation and provision of SPPC.