Using a six-step co-design model to rapidly respond to cancer carers support and information needs during a global pandemic.

OBJECTIVES: The COVID-19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support. METHODS: The Santin 2019 6-step co-design model was used to rapidly modify an existing online cancer carers resource. Draft content of a COVID-19 module was created via two workshops and six meetings with an expert advisory team (Step 1). This content was then produced into videoed testimonials (Step 2). A module prototype was reviewed by volunteers (Step 3) and modified based on feedback (Step 4). User-testing occurred via two online feedback sessions (Step 5) and modifications were made (Step 6). All steps were audio recorded, transcribed verbatim and analysed thematically. RESULTS: A COVID-19 support, and information module was rapidly co-designed by n = 45 stakeholders (n = 11 workshop 1 and 2 (3 carers/14 professionals), n = 6 advisory committee (1 carer/5 professionals), n = 4 video content (1 carer/3 professionals) and n = 24 feedback sessions (5 carers/19 professionals). The module contained vaccination information, infection control and how to manage the psychosocial impact of restrictions. Information was delivered in 4 short videos with links to up-to-date guidance and information services. Participants identified that the module included all key information for carers in an accessible and informative way. The use of videos was viewed as an emotive and reassuring. CONCLUSIONS: During a global pandemic, cancer carers urgently required tailored information. Co-designed online resources allow service providers to rapidly respond to emerging and unprecedented issues and provide urgent information and support.

Supporting someone with cancer during the COVID-19 pandemic: A mixed methods analysis of cancer carer's health, Quality of Life and need for support.

The COVID-19 pandemic has greatly affected the delivery of cancer care. Due to social restrictions and reductions in health service contact, it is expected that the burdens experienced by informal carers have risen. This study provides an analysis of cancer carer's experiences and needs as a consequence of the pandemic. An online mixed method design was used. The survey included open-ended responses to explore carer's experiences and measures of health status (EQ-5D-5L), Quality of Life (WHOQoL-BREF) and impact of COVID-19. Open-ended responses were analysed thematically according to Miles and Huberman techniques and quantitative data were analysed descriptively. One hundred and ninety-six cancer carers participated in the online survey. Mixed method analysis demonstrated that carers were experiencing major difficulties. Of these n = 142/72.4% experienced challenges related to anxiety and depression; 35.2% rated these problems as slight with 25% rating these as moderate and 11.2% as severe. Qualitative analysis identified significant and sustained negative impacts of the pandemic on psychological health, social isolation, finance and access to health services with carers requiring urgent information and support. Carer's challenges have deepened throughout the COVID-19 pandemic. There is an urgent need to develop innovative ways to provide support for carers to provide palliative and supportive care at home now and during recovery from the pandemic. Due to the need for infection control meaningful development and integration of urgent digital technology might be the most feasible solution.

Codesigning a supportive online resource for Australian cancer carers: a thematic analysis of informal carers' and healthcare professionals' perspectives about carers' responsibilities and content needs.

OBJECTIVE: To gather preliminary qualitative data that will assist in the codesign and development of a new informational and supportive website to assist informal cancer carers in Australia. DESIGN AND SETTING: Utilising a previously tested codesign process, informal carers' experiences and perspectives, including those of healthcare professionals', were examined via focus groups and/or interviews. Data were analysed via thematic analysis. PARTICIPANTS: Rural (n=9) and urban (n=11) carers', and healthcare professionals' (n=8) perspectives were collected. Carers participated in a focus group (n=9) or telephone interview (n=11). Healthcare professionals completed an interview (n=6) or online survey (n=2). RESULTS: Rural and urban carers typically felt ill prepared for their multitudinal caregiving responsibilities. Supporting patient-to-healthcare professional liaisons could especially challenge. Carers' biopsychosocial and fiscal strains were affected by patients' hardships and available informal supports. Rural carers described greater social support than urban carers. Both rural and urban carers also described discontentment related to a carer neglecting healthcare system. Both carers and healthcare professionals endorsed the need for a user-friendly, carer-specific website encompassing practical information and resources, peer-driven advice and evidence-based illness information, tailored to the Australian context. CONCLUSIONS: Carers and healthcare professionals recognise the pressing need for an Australian, cancer carer-specific online resource. Findings will inform the next phase, where a resource will be designed, developed and tested.

Fatigue, anxiety, depression and sleep quality in patients undergoing haemodialysis.

OBJECTIVE: Patients undergoing haemodialysis may experience troubling symptoms such as fatigue, anxiety, depression and sleep quality, which may affect their quality of life. The main objective of this study is to determine the prevalence of fatigue, anxiety, depression and sleep quality among patients receiving haemodialysis during the coronavirus disease 2019 (COVID-19) pandemic, and to explore the contributing predictors. METHODS: A cross-sectional and descriptive correlational design using Qualtrics software was performed. Data were collected using the Functional Assessment of Cancer Therapy-Fatigue (FACT-F), the Hospital Anxiety and Depression Scale (HADS) and the Pittsburgh Sleep Quality Index (PSQI). Logistic regression analyses were used to explore the predictors that were associated with fatigue, anxiety, depression and sleep quality. RESULTS: Of the 123 patients undergoing haemodialysis who participated, 53.7% (n = 66) reported fatigue, 43.9% (n = 54) reported anxiety, 33.3% (n = 41) reported depression and 56.9% (n = 70) reported poor sleep. Fatigue, anxiety and sleep quality (P < .05) were significantly associated with being female, and whether family members or relatives were suspected or confirmed with COVID-19. Logistic regression showed that being within the age group 31-40, having a secondary education level, anxiety, depression and sleep quality were the main predictors affecting the fatigue group. CONCLUSION: Fatigue, anxiety, depression and sleep quality are significant problems for patients receiving haemodialysis during the COVID-19 pandemic. Appropriate interventions to monitor and reduce fatigue, psychological problems and sleep quality amongst these patients are needed. This can help to strengthen preparations for responding to possible future outbreaks or pandemics of infectious diseases for patients receiving haemodialysis.