Dr Jo Taylor

Background Incarcerated mothers are a marginalised group who experience substantial health and social disadvantage and routinely face disruption of family relationships, including loss of custody of their children. To support the parenting role, mothers and children's units (M&Cs) operate in 97 jurisdictions internationally with approximately 19 000 children reported to be residing with their mothers in custody-based settings. Aim This rapid review aims to describe the existing evidence regarding the models of service delivery for, and key components of, custodial M&Cs. Method A systematic search was conducted of four electronic databases to identify peer-reviewed literature published from 2010 onwards that reported quantitative and qualitative primary studies focused on custody-based M&Cs. Extracted data included unit components, admission and eligibility criteria, evaluations and recommendations. Results Of 3075 records identified, 35 met inclusion criteria. M&Cs accommodation was purpose-built, incorporated elements of domestic life and offered a family-like environment. Specific workforce training in caring for children and M&Cs evaluations were largely absent. Our systematic synthesis generated a list of key components for M&C design and service delivery. These components include timely and transparent access to information and knowledge for women, evaluation of the impact of the prison environment on M&C, and organisational opportunities and limitations. Conclusion The next generation of M&Cs requires evidence-based key components that are implemented systematically and is evaluated. To achieve this, the use of codesign is a proven method for developing tailored programmes. Such units must offer a net benefit to both mothers and their children.

Objective: The objective of this study was to explore the experiences of distressed people calling helplines regarding offer and uptake of financial services after cancer diagnosis. Methods: Cancer patients and caregivers reported whether they had discussed then used financial services and perceptions surrounding service uptake. Associations between being offered services and demographic, clinical and financial characteristics were explored. Results: Of the 508 patients and caregivers in this sample, 107 (21%) people who recalled discussing financial support used the service. Of those, 34 (32%) participants actioned a financial support referral, of which 32 (94%) reported that the support was helpful. Of the 401 (79%) who did not recall discussing financial support, 26 (6%) would have liked to do so. The following characteristics were significantly associated with a greater likelihood of discussing financial support: younger age, being married, metastatic disease, higher out-of-pocket costs, not having private health insurance, being on leave and being absent for more days from work. Conclusions: Although users of financial supports find them helpful, there is need for more structured approaches to referral to achieve equitable access. Implications for public health: A pro-active, structured approach to assessing financial toxicity and offering support is warranted in community-based organisations that offer cancer information and support.

Background: A comprehensive understanding of temporal trends in the disease burden in Australia is lacking, and these trends are required to inform health service planning and improve population health. We explored the burden and trends of diseases and their risk factors in Australia from 1990 to 2019 through a comprehensive analysis of the Global Burden of Disease Study (GBD) 2019. Methods: In this systematic analysis for GBD 2019, we estimated all-cause mortality using the standardised GBD methodology. Data sources included primarily vital registration systems with additional data from sample registrations, censuses, surveys, surveillance, registries, and verbal autopsies. A composite measure of health loss caused by fatal and non-fatal disease burden (disability-adjusted life-years [DALYs]) was calculated as the sum of years of life lost (YLLs) and years of life lived with disability (YLDs). Comparisons between Australia and 14 other high-income countries were made. Findings: Life expectancy at birth in Australia improved from 77·0 years (95% uncertainty interval [UI] 76·9¿77·1) in 1990 to 82·9 years (82·7¿83·1) in 2019. Between 1990 and 2019, the age-standardised death rate decreased from 637·7 deaths (95% UI 634·1¿641·3) to 389·2 deaths (381·4¿397·6) per 100 000 population. In 2019, non-communicable diseases remained the major cause of mortality in Australia, accounting for 90·9% (95% UI 90·4¿91·9) of total deaths, followed by injuries (5·7%, 5·3¿6·1) and communicable, maternal, neonatal, and nutritional diseases (3·3%, 2·9¿3·7). Ischaemic heart disease, self-harm, tracheal, bronchus, and lung cancer, stroke, and colorectal cancer were the leading causes of YLLs. The leading causes of YLDs were low back pain, depressive disorders, other musculoskeletal diseases, falls, and anxiety disorders. The leading risk factors for DALYs were high BMI, smoking, high blood pressure, high fasting plasma glucose, and drug use. Between 1990 and 2019, all-cause DALYs decreased by 24·6% (95% UI 21·5¿28·1). Relative to similar countries, Australia's ranking improved for age-standardised death rates and life expectancy at birth but not for YLDs and YLLs between 1990 and 2019. Interpretation: An important challenge for Australia is to address the health needs of people with non-communicable diseases. The health systems must be prepared to address the increasing demands of non-communicable diseases and ageing. Funding: Bill & Melinda Gates Foundation.

Background: Patient-centered cancer care includes emotional, informational, and practical support that is personalised to the needs of patients and inclusive of family and friends. However, when supportive care referrals are offered in hospital settings, distressed patients and carers do not consistently act on those referrals, which can prolong patient suffering. The degree to which sub-optimal referral uptake also occurs in Australian telephone support services is unknown. Aims: To report, among a sample of distressed patients and caregivers who called a cancer information and support service: 1) the types of services used; 2) proportion who received and actioned a referral (uptake); 3) associations between referral to a service and callers' characteristics); and, 4) associations between uptake of a referred service and callers' characteristics. Methods: This study used cross-sectional data collected at 3-month post-baseline from control participants (usual care group) enrolled in the Structured Triage and Referral by Telephone (START) trial. The START trial recruited distressed adult cancer patients and caregivers from the Cancer Council Information and Support Service (CIS). A research assistant conducted a 30¿45 min telephone interview with participants, which included recall of referrals provided by CIS staff and reported uptake of referral(s) to the offered service types. Results: Most patients (98%) and caregivers (97%) reported receiving a referral to a service. For patients and caregivers respectively, information materials (71%, 77%), CIS call-back (51%, 43%), practical services (52%, 45%), and group peer support (49%, 51%) were the services most frequently offered. For callers receiving a referral, uptake was highest for information materials (91%) and CIS call-backs (89%) and lowest for specialist psychological services (30%). Significant association was found between older age and reduced uptake of services (p = 0.03). Conclusion: The high uptake rate of CIS call-backs suggests it is a potentially more acceptable form of support compared to specialist psychological services. Efforts to reduce the barriers to telephone-based psychological services are required. Specifically, older age peoples' and caregivers' preferences for support and priorities who may benefit from a referral coordinator.

Purpose: People affected by chronic diseases such as cancer report high levels of distress and a need for psychosocial support. It is unclear whether telephone-based services for people affected by chronic disease are a practical setting for implementing distress screening, referral protocols and rescreening to direct supportive care where it is needed. This systematic review aimed to describe the published literature regarding distress screening and supportive care referral practices in telephone-based services for people affected by chronic diseases such as cancer. Methods: A systematic literature search of MEDLINE, Embase, PsycInfo, CINAHL, Cochrane and Scopus was conducted in February 2018. Included quantitative studies involved: patients or caregivers affected by chronic diseases including cancer and describe a health service assessing psychosocial needs or distress via telephone. Extracted data included the type of cancer or other chronic disease, sample size, screening tool, referral or rescreening protocols, and type of health service. Results: The search identified 3989 potential articles with additional searches returning 30 studies (n = 4019); fourteen were eligible for full-text review. Of the 14 studies, 13 included cancer patients. Studies were across multiple settings and identified nine distress screening tools in use. Conclusion: The reviewed studies indicate that validated distress-screening tools are being used via telephone to identify distress, particularly in relation to cancer. Screening-driven supportive care referrals are also taking place in telephone-based services. However, not all services use an established referral protocol. Ongoing rescreening of callers' distress is also limited despite it being an important recommendation from psycho-oncology guidelines.

Purpose: Caring for a person diagnosed with cancer is associated with elevated distress that may impact on caregiver health and patient outcomes. However, caregivers' distress is relatively under-researched. This Australian study explored a range of caregivers' reported sources of distress. Methods: The grounded theory approach informed semi-structured interviews that were conducted with a purposive and broad range sample of distressed caregivers identified through the 'Structured Triage And Referral by Telephone' (START) trial. A grounded theory framework was used to generate themes with data analysed by two independent coders using the NVivo software. Results: Caregivers (n = 14) were aged from 25 to 80 years, including two bereaved caregivers. The relationships of the caregivers to the patients were as follows: partner (n = 8), parent (n = 1), child (n = 3), sibling (n = 1), and friend (n = 1). Six major themes emerged in relation to sources of distress: (1) a lack of sufficient and timely information; (2) uncertainty; (3) the role and duties of caregiving; (4) lack of family-centred services; (5) practical challenges; and (6) impact of distress. Conclusion: Caregivers face a number of specific challenges beyond those experienced by patients. It is essential to ensure that caregivers are actively well-informed and well-supported alongside the person who is diagnosed with cancer.