Anne-Kathrin Gerber successfully defended her thesis on 16 September 2024
Anne-Kathrin Gerber’s thesis is entitled “Specialised Paediatric PAlliativE CaRe: Assessing Clinical and Service outcomes in multi-site care settings using real world data (SPhAERA-CS)” and seeks to expand the existing evidence on specialized paediatric palliative care’s impacts, particularly on QoL and to lay the groundwork for a robust system of conceptualisation and a unified programme theory.
The prevalence of life-limiting conditions (LLCs) children has been increasing. LLCs are conditions either for which curative treatments may be feasible but can fail, or for which there is no reasonable hope of a cure, and which lead inevitably to death. This prevalence rise very likely results from prolonged survival due to advancements in medical treatment options and technology. Parenting, living with, caring for, and otherwise supporting a child with an LLC profoundly impacts both family members and involved professionals. Faced with their child's complex care needs and confronted by altered family reality, parents encounter major psychological health-related challenges. In addition to reduced physical and psychological well-being, siblings experience shifting family dynamics and caregiving responsibilities. Care professionals are also exposed to suffering, leading to considerable emotional burden. Families and professionals have unique care and support needs spanning various dimensions. Paediatric Palliative Care (PPC) addresses these specific care needs and aims to improve the Quality of Life (QoL) of patients, their families and their caregivers. Current weak evidence suggests that PPC improves affected children’s QoL, reduces their symptom burden, decreases their healthcare utilisation and costs, and decreases their need for intense End-of-Life (EoL) care. Still, while it is widely accepted as the gold standard of care for children with LLCs and their families, access to and provision of PPC are inadequate or non-existent in many parts of the world, including Switzerland. And its implementation, provision and sustainability are hindered everywhere by the shortage of scientific evidence on its effectiveness. Likewise, outcome data on parents, siblings and professionals is sparse. For families and professionals who provide care and support over long periods, PPC and bereavement support is commonly either severely limited or unavailable.
In a first step, Anne-Kathrin Gerber’s dissertation reports on significant challenges to the development, evaluation and implementation of PPC programmes, e.g., gaps in its programme theory, its conceptualisation, and empirical evidence of its effectiveness; and highlights how these issues hinder progress in the field, then proposes solutions to overcome them.
Secondly, the dissertation proceeds with the results of a non-randomised prospective longitudinal comparative-effectiveness study aiming both to evaluate the impact of an SPPC programme on caregiver QoL and to longitudinally describe caregiver QoL through the palliative care and bereavement phases. The intervention showed no statistically significant effect on parental QoL during the palliative or bereavement phases. However, parental QoL in the IG increased slightly during the palliative phase. Factors such as family hardiness and resilience, the child’s place of care and illness duration influenced parental QoL significantly.
Thirdly, the dissertation reports the results of a prospective multicentre cohort study that describes QoL longitudinally in siblings of children with LLCs through the palliative care and bereavement phases, as well as their perceived research burden. Participants’ health-related QoL was above the Swiss population norm for all assessed health-related QoL domains except psychological well-being. All participants’ QoL scores varied over time. Most deemed the questionnaire length and time required for study participation adequate and the research burden low.
In a next step the dissertation shows the findings of a repeated cross-sectional comparative effectiveness study that evaluated whether the availability of an SPPC team impacted the work-related QoL of professionals not specialised in PPC. It also explored the work-related QoL of professionals working in PPC without specialised training. Overall, the 301 non-specialised professionals had low to moderate work-related QoL levels. Regarding professionals who are not specialised in PPC, but who care for children through PPC or EoL phases, the impact of an SPPC team’s availability on that group’s work-related QoL remains unclear.
This dissertation underscores the significance of assessing SPPCs effectiveness in this vulnerable population. Further, to enhance SPPC research, it will be imperative both to develop a consistent conceptual framework and programme theory, and to select appropriate outcome measures. The observed variability in QoL trajectories and their influencing factors warrants further investigation, e.g., to determine the role resilience plays in how parents, siblings, and professionals manage, cope and adapt to the demands of caring for a child with a life-limiting condition.