RESUMEN
The purpose of this study is to investigate out-of-pocket non-medical expenses and employment-related outcomes in families of children with life-limiting conditions, specifically, to quantify the financial and employment implications of two events: a child's hospitalization and death. This cohort study used panel data collected prospectively for a larger study investigating the effectiveness of specialized pediatric palliative care. Participants were recruited by medical professionals between November 2019 and May 2022 at four Swiss children's hospitals. The care follow-up and bereavement follow-up assessments were 330 and 300 days, respectively. We measured out-of-pocket non-medical expenses, individual full-time equivalent units, and personal income, as well as sick leave and vacation days taken. Analyses included descriptive statistics and two-way linear fixed-effects regressions. The analysis included 110 parents (mothers n = 59, fathers n = 51) of 61 children. Children were hospitalized for a median of 7 days (interquartile range 0-21, range 0-227). The fixed-effects models found a positive association between hospitalization, i.e., length of stay, and travel and accommodation expenses (coefficient 4.18, 95% confidence interval 2.20-6.16). On average, for each week of hospitalization, parents spent an additional 29 Swiss francs on travel and accommodation. During the 300-day bereavement follow-up, six (26%) of 23 parents increased their work commitments, while one reported a decrease. CONCLUSIONS: Families incur higher travel and accommodation expenses during hospitalization than during non-hospitalized periods. Instrumental support, e.g., parking vouchers, can help families minimize these costs. Future studies should investigate whether early return to work during bereavement is driven by economic considerations or a desire for distraction. CLINICAL TRIAL REGISTRATION: Data analyzed in this study were collected as part of a clinical trial, registered on ClinicalTrials.gov, No. NCT04236180, 15 March 2019 What Is Known: ⢠Families of children with life-limiting conditions are at risk of substantial financial burden from high out-of-pocket medical expenses. ⢠It is also known that parents often have to incur out-of-pocket non-medical expenses and reduce their work commitments. Little is known about the economic consequences of losing a child to a life-limiting condition. WHAT IS NEW: ⢠We provide new longitudinal evidence on the hospitalization- and death-related financial and employment implications for families of children with life-limiting conditions. ⢠Child hospitalizations add to families' financial burden through increased travel and accommodation expenses. Work commitments rose during early bereavement.
RESUMEN
Background: Working in pediatric palliative care (PPC) impacts healthcare and allied professionals' work-related quality of life (QoL). Professionals who lack specific PPC training but who regularly provide services to the affected children have articulated their need for support from specialized PPC (SPPC) teams. Objectives: This study had two objectives: (1) to evaluate whether the availability of a SPPC team impacted the work-related QoL of professionals not specialized in PPC; and (2) to explore the work-related QoL of professionals working in PPC without specialized training. Design: Repeated cross-sectional comparative effectiveness design. Methods: One hospital with an established SPPC program and affiliated institutions provided the intervention group (IG). Three hospitals and affiliated institutions where generalist PPC was offered provided the comparison group (CG). Data were collected by paper-pencil questionnaire in 2021 and 2022. The Professional Quality of Life (ProQOL 5) questionnaire was used to assess work-related QoL, yielding separate scores for burnout (BO), secondary traumatic stress (STS) and compassion satisfaction (CS). A descriptive statistical analysis was performed and general estimation equations were modelled. To increase the comparability of the IG and CG, participants were matched by propensity scores. Results: The 301 participating non-PPC-specialized professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. However, none of these scores (BO: p = 0.36; STS: p = 0.20; CS: p = 0.65) correlated significantly with support from an SPPC team. Compared to nurses, physicians showed higher levels of BO (1.70; p = 0.02) and STS (2.69; p ⩽ 0.001). Conclusion: Although the study sample's overall work-related QoL was satisfactory, it showed a considerable proportion of moderate BO and STS, as well as moderate CS. To provide tailored support to professionals working in PPC, evidence regarding key SPPC support elements and their effectiveness is needed. Trial registration: ClinicalTrials.gov ID, NCT04236180.
Work-related quality of life in professionals involved in pediatric palliative care - Why was this study done? Caring for children suffering from life-limiting conditions and their families impacts professionals' work-related Quality of Life (QoL). Professionals without specific training often provide pediatric palliative care (PPC) to children and their families. - What did the researchers do? We aimed to determine whether the work-related the QoL of professionals without specialised PPC training would be positively influenced when they were supported by PPC specialists. We also wanted to explore what person-specific factors might correspond with higher or lower work-related QoL. Work-related QoL was analysed in relation to burnout (BO), secondary traumatic stress (STS), and compassion satisfaction (CS). These variables' levels were assessed with a questionnaire survey in 2021 and 2022. - What did the researchers find? The 301 participating professionals had overall low to moderate levels of BO and STS and moderate to high levels of CS. There was no substantial difference in work-related QoL in the professionals supported by PPC specialists compared to those who did not receive specialist support. Physicians showed higher levels of BO and STS than nurses. - What do the findings mean? Although the studied professionals' overall work-related QoL was satisfactory, there is a considerable proportion of moderate BO and STS scores in professionals working with children suffering from life-limiting conditions. Further research should explore the specific needs of professionals not specialised in PPC.
RESUMEN
BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce. AIMS: The present study's first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably. METHODS: A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC. RESULTS: Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 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 sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients. CONCLUSION: Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.