Background: Living with a child who has a life-limiting condition (LLC) is likely to have a major impact on all family members. There is a need to have a clearer understanding of the nature and extent of this impact on parents and well-siblings. The current study aimed to investigate the psychosocial functioning of well-siblings and parents living with a child with an LLC. Further, the study aimed to assess the resilience resources of both well-siblings and parents, giving consideration to how these relate to psychosocial functioning. Methods: Participants included 48 well-siblings (6-21 years) and 42 parents of children with LLCs. Parents and well-siblings independently completed validated measures of child and adult functioning and personal resilience. Parents provided demographic information about the patient and family.Results: The emotional, social and school functioning of well-siblings in the current study was found to be significantly poorer than published norms (all p's < .01). Parental self-reported depression, anxiety and stress scores were also all significantly poorer than published norms (all p's < .01). There was negligible agreement between well-sibling self-reported functioning and parental proxy-report of the well-siblings functioning (all r's < .126, all p's > .464). Sibling self-reported resilience was positively correlated with each of the measures of psychosocial functioning (all r's > .318, p's < .05). Parental resilience was significantly negatively correlated with depressive symptoms (r = À.369, p < .05) and anxiety symptoms (r = À.473, p < .01) but not stress scores (r = À.074, p = .644). Conclusion:Family members living with a child who has an LLC were found to have significantly poorer psychosocial functioning than published norms. Although one cannot infer a causal direction from the current study, greater self-reported wellsibling and parental resilience were associated with aspects of better self-reported psychosocial functioning. Future studies should assess the impact of psychosocial interventions aimed at enhancing the resilience and functioning of both well-siblings and parents.

The rising prevalence of children with chronic conditions has made quality of life an increasingly important outcome measure in paediatric practice. The discrepancy between doctors' and patients' perceptions of quality of life makes formal assessment necessary. In this paper we use a case scenario to answer commonly asked questions. What is quality of life and who can assess it? Why assess quality of life in the clinical setting? Is it feasible to measure in routine clinical practice? How is quality of life formally assessed? We provide a basic outline of the language and methods of quality of life assessment and use the case scenario to discuss the process of choosing an appropriate instrument. We conclude that quality of life assessment in clinical practice is feasible and provides benefits for both patients and doctors. The benefits include better informed doctors, improved patient doctor communication and a means to effectively monitor quality of life as a treatment outcome.

ARS-COV-2, the virus that causes COVID-19, was first reported in December 2019 in China. 1,2 It has since spread around the world, with the first case reported in Australia on 25 January 2020. 3 Those at increased risk of contracting the virus and developing the disease include international travellers, people in contact with COVID-19 positive cases, older people with comorbidities, people in aged care facilities, and those in correctional and detention facilities. [4][5][6] In countries where the healthcare system has been inundated with cases, the population mortality rate has been as high as 7.2%. 7 Australia recorded a mortality rate of 3.2% up to 6 December 2020, with 28,049 cases and 908 deaths. 8

Caring for a child in hospital who is approaching death, in the terminal phase, requires a focus on caring for the physical, emotional, and spiritual needs of the child and family. Health professionals caring for these children and families may need to shift their focus from a treatment-focused approach aimed at cure or maintaining life to a comfort-focused approach. The Comfort Care Case (CCC) is a collection of resources designed for use in hospital to ease suffering and facilitate comfort within a pediatric end-of-life (EOL) context. The resources are intended to support the child, the family, and the health professionals involved in EOL care. This article describes the development, implementation, and education associated with the CCC in a tertiary pediatric hospital.