Same storm, different boat: The global impact of COVID-19 on palliative care.

OBJECTIVE: The COVID-19 pandemic has had a complex and profound impact on the provision of palliative care globally. To support learning from palliative care providers and researchers worldwide, the Education Subcommittee of International Psycho-Oncology Society (IPOS) Palliative Care Special Interest Group developed a webinar with presentations by and discussion with eight international palliative care leaders. METHODS: Presentations were content rich; the speakers used both quantitative (e.g., sharing recent statistical findings) and qualitative (e.g., narrative storytelling, anecdotal experiences) approaches to portray the effect of COVID-19 in their region. Subsequent to the webinar, the committee collectively identified five themes conveyed by the presenters through consensus. RESULTS: The themes included: (1) altered accessibility to palliative care, with socio-economic status impacting virtual health availability; (2) reduced opportunities to preserve dignity, as survival has been prioritized over preserving the humanity of patients and their loved ones; (3) complicated grief and bereavement arising from social distancing requirements; (4) greater awareness of the importance of sustaining health provider well-being; and (5) the development of valuable innovations across nations, institutions, disciplines, and communities. CONCLUSIONS: Overall, the webinar facilitated valuable connection for global learning and identified opportunities for research and clinical interventions. In an ongoing crisis that has exacerbated isolation, we will need to continue to learn and lean on one another as a global community to navigate ongoing challenges of the COVID-19 pandemic.

Inception of a pediatric cancer caregiver support group guided by parental needs.

BACKGROUND: Survivorship in childhood cancers has steadily improved and increased the need for caregivers to provide a longer duration of care both in the hospital and at home. Involving parents and caregivers to voice their unmet needs could significantly impact and direct the institution of support groups. AIMS: To ascertain the need for a pediatric caregiver support group based on a survey that explored the unmet needs of caregivers of children with cancer. METHODS: Caregivers of pediatric patients (n = 17) undergoing treatment at the hospital were requested to complete our Pediatric Caregiver Psycho-social Needs Survey. The survey encompassed questions on different aspects of caregiving and the caveats felt by the caregivers. The needs were categorized into seven main domains (physical, emotional, family-related issues, spiritual, social, logistics, and information) that focused on understanding the importance and the perceived level of professional support that was expected. The data was analyzed using SPSS. RESULTS: The most often reported needs were (i) emotional concerns with the majority reporting fear (58.8%), (ii) logistics-related needs for play/art-based activities (58.8%), (iii) informational needs focusing on understanding diagnosis/prognosis (47.1%), side-effects of treatment and physical changes (41.2%). Family-related needs escalated when caregivers (23.5%) looked after other ill family members at home. Caregivers (23.5%) also reported Spiritual concerns suggesting the need for religious/spiritual support in the hospital. Majority of caregivers (82.4%) expressed interest to be part of a pediatric caregiver support group. However, professional support sought for was much lesser compared to the percentage of needs/concerns expressed. CONCLUSION: Our study highlighted the unmet needs of caregivers which included emotional, logistics-related needs, and concerns about information. Hence, the goal is to provide a unified platform through a support group that holistically can address needs and empower caregivers.

'Patients with Cancer are Distressed!' Indian Healthcare Provider Perspectives on Distress Screening and Referrals to Psycho-oncology Services - A Mixed Methods Study.

OBJECTIVES: Routine screening for distress is a guideline prescribed by the National Comprehensive Cancer Network (NCCN) to adequately assess distress in a cancer setting. Our centre conducted routine screening but failed to utilize psycho-oncology services. Our aim was to assess the extent of self-reported distress, referrals to psycho-oncology services and healthcare provider perspectives about the existing distress management system and psycho-oncology services. MATERIALS AND METHODS: We conducted a record review of adult patients (n=372) who reported to the Out-patient department of the tertiary cancer centre. Semi-structured interviews were conducted with fourteen healthcare providers. We used a concurrent mixed methods study design. Adult patients were screened for distress using NCCN-Distress Thermometer and problem checklist. Healthcare providers from different oncology specialties were interviewed and the data was analysed using descriptive thematic analysis. RESULTS: Patients screened for distress were found to report moderate to extreme levels of distress (53.5%). The total referrals to psycho-oncology support services were low (8.6%). Interviews with healthcare providers revealed three major themes: Enablers, barriers and solutions for utilization of distress management system and psycho-oncology services. CONCLUSIONS: Moderate to extreme distress was found among patients routinely screened for distress, although there was poor utilization of distress management system and psycho-oncology support services due to time constraints, patient's negative attitudes towards mental health referrals, generic screening tools and use of own clinical judgement to make referrals by healthcare providers. Future research warrants implementation of strategies to integrate psycho-oncology services into routine cancer care by focusing on improving visibility of services.