Our results reveal that burnout and psychological morbidity are significant in the palliative care community and demonstrate a need to look at managing long working hours and promoting the use of coping mechanisms to reduce burnout and psychological morbidity.

BackgroundAround the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service’s longitudinal impact.MethodA structured impact and cost evaluation of Singapore-based HCA Hospice Care’s Star PALS (Paediatric Advance Life Support) programme was conducted over a three-year period, employing both retrospective and prospective designs with two patient groups.ResultsCompared to the control group (n = 67), patients receiving home-based paediatric palliative care (n = 71) spent more time at home than in hospital in the last year of life by 52 days (OR = 52.30, 95% CI: 25.44–79.17) with at least two fewer hospital admissions (OR = 2.46, 95% CI: 0.43–4.48); and were five times more likely to have an advance care plan formulated (OR = 5.51, 95% CI: 1.55–19.67). Medical costs incurred by this group were also considerably lower (by up to 87%). Moreover, both patients’ quality of life (in terms of pain and emotion), and caregiver burden showed improvement within the first year of enrolment into the programme.DiscussionOur findings suggest that home-based paediatric palliative care brings improved resource utilization and cost-savings for both patients and healthcare providers. More importantly, the lives of patients and their caregivers have improved, with terminally ill children and their caregivers being able to spend more quality time at home at the final stretch of the disease.ConclusionsThe benefits of a community paediatric palliative care programme have been validated. Study findings can become key drivers when engaging service commissioners or even policy makers in appropriate settings.

Background: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child's chronic life-threatening illness, there is no such study within the Asian context. Methods: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018. Results: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants' lived experience of their child's chronic life-threatening illness and death, starting from the diagnosis of their child's chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child's death and the losses which accompanied the death (Theme 3) and participants' experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or 'rituals' that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7). Conclusion: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.

Background: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore. Methods: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment.Results: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed. Conclusion:The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.

Paediatric palliative care services have increased both in numbers and capacity around the world in response to the needs of children living with life-limiting conditions. Members of the Asia Pacific Hospice Network, who render care to children, have increasingly realised the need to map existing services for enhanced collaborative, educational and advocacy efforts. An online survey was conducted over 2 months among professionals in the region to document current service provision, and at the same time to explore individual training needs and practice challenges. A questionnaire crafted through consensus by members of a new special interest group within the network was used to collect data. 59 distinct responses from 16 countries were obtained to build a directory, which has already been circulated. Content analyses of narrative responses yield further findings. Half of these services catered to adults as well as to children. Staffing and service provision varied across the region but most members worked in teams consisting of multidisciplinary professionals. Numerous service and funding models were found, reflecting wide differences in local conditions and responses to diverse patient populations unique to paediatric palliative care. The highest training needs centred around bereavement and spiritual care. Capacity and funding issues were expected, but significant lack of support by paediatricians was found to be alarming and warrants further study. Amid the heterogeneity, these services share common struggles and face similar needs. Identifying individual profiles of different services potentially helps to draw everyone together, towards a common vision, and towards creating opportunities for sharing of expertise and experience.