Parent and Well-Sibling Communication in Families With a Child Who Has a Life-Limiting Condition: Quantitative Survey Data.

OBJECTIVE: Living with a child with a life-limiting condition (LLC), for which there is no hope of cure and premature death is expected, places much stress on a family unit. Familial communication has the potential to serve as a buffer when children are faced with stressful situations. The overall aim of the study was to learn more about illness-related communication between parents and well-siblings, giving particular consideration to the amount of illness-related communication, and sibling satisfaction with familial communication. METHODS: Participants included 48 well-siblings (aged 6-21 years) of children with LLCs and their parents. Parents and well-siblings independently completed validated measures of familial communication and sibling functioning. Parents also provided demographic information and completed a questionnaire assessing amount of illness-related information provided to well-siblings. RESULTS: Parents reported that 47.8% of well-siblings never or rarely initiated conversations about their sibling's illness. Moreover, 52.2% of well-siblings never or rarely spoke about death. Amount of illness-related communication between parents and well-siblings was most strongly predicted by parental resilience and well-sibling age. Parents engaged in significantly more illness-related communication with girls than boys (t(44)=-2.28, p = .028). Well-siblings (p < .01) and parents (p < .05) rated satisfaction with familial communication significantly higher than published norms. The only significant predictor of well-sibling satisfaction with familial communication was greater familial cohesion. Family communication variables were not significantly correlated with measures of sibling functioning (all p's>.05). CONCLUSIONS: This study provides new information regarding parent and well-sibling communication in families who have a child with a LLC.

Living with a child who has a life-limiting condition: The functioning of well-siblings and parents.

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 = -.369, p < .05) and anxiety symptoms (r = -.473, p < .01) but not stress scores (r = -.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 well-sibling 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.

Audit of the Sydney Local Health District Public Health Unit notification and contact tracing system during the first wave of COVID-19.

OBJECTIVE: To conduct a real-time audit to assess a Continuous Quality Improvement (CQI) activity to improve the quality of public health data in the Sydney Local Health District (SLHD) Public Health Unit during the first wave of COVID-19. METHODS: A real-time audit of the Notifiable Conditions Information Management System was conducted for positive cases of COVID-19 and their close contacts from SLHD. After recording missing and inaccurate data, the audit team then corrected the data. Multivariable regression models were used to look for associations with workload and time. RESULTS: A total of 293 cases were audited. Variables measuring completeness were associated with improvement over time (p<0.0001), whereas those measuring accuracy reduced with increased workload (p=0.0003). In addition, the audit team achieved 100% data quality by correcting data. CONCLUSION: Utilising a team, separate from operational staff, to conduct a real-time audit of data quality is an efficient and effective way of improving epidemiological data. Implications for public health: Implementation of CQI in a public health unit can improve data quality during times of stress. Auditing teams can also act as an intervention in their own right to achieve high-quality data at minimal cost. Together, this can result in timely and high-quality public health data.

Developing the Comfort Care Case: An End-of-Life Resource for Pediatric Patients, Their Families, and Health Professionals.

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.

Assessing quality of life in paediatric clinical practice.

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.