Models of Care
Hospice Care Delivery for Patients with Life-limiting Illness Inclusive of Advanced Cancer: Post-COVID-19 Gaps and Steps View Digital Media
Paper Presentation in a Themed Session Rosemary Frey
During the COVID-19 pandemic, restrictions to hospice visiting and limitations in bereavement support increased psychosocial distress for patients and families. Hospice care delivery was scaled back, leading to gaps in continuity of care and failure to provide relief from the physical, psychological, social, and spiritual needs of cancer patients and caregivers at a time when they most required it. However, there were also extraordinary adaptive healthcare responses to these unprecedented challenges, and hospice/palliative care was no exception. There is a critical need to harness the lessons learned, evaluate policy, and practice changes to benefit cancer patients, their families, and service providers. A Transdisciplinary Action Research (TDAR) approach is utilized. Phase One involves a telephone survey with key stakeholders across the sector, including hospice leaders, partnering community groups, non-governmental organizations, community care providers, and representatives from the NZ Ministry of Health. Phase Two consists of two Think Aloud sessions (2-3 hours) with 6-8 stakeholders (each session). Participants from Phase One engage with the results and themes developed from Phase One to co-produce appropriate recommendations to increase the accessibility of services for patients with palliative care needs and their caregivers both locally and potentially across the country. This study provides data to inform changes in practice and organizational policy with the potential to increase the accessibility of palliative care services within New Zealand, which will also have relevance to other hospices across the world. This paper covers Phase One results.
Applied Health Humanities for the Aging: Activities for the Home and Institutional Caregivers
Paper Presentation in a Themed Session Lorna Segall, Trini Stickle
This paper focuses on highlighting the needs of the aging population specifically relating to persons with dementia, their caregivers, and how the arts empower families and communities to care within their own homes and communities creatively and meaningfully. A revolutionary perspective that connected medical training and treatment with lessons from the humanities earnestly began in the mid-20th century to emphasize the treatment and care of disease as the “science of the human''. As the field continued to develop, also added were social science methodologies that employed humanistic approaches: e.g., narrative inquiry, discourse analysis, storytelling. These methods promised insightful approaches to medical procedures in which skills such as active listening could provide in-roads to patient experiences and creative approaches to ameliorate pain and suffering. While medical humanities as a movement focused initially on medical education as a way for physicians to see and treat the human being rather than the disease or injury, the application of these methods within treatment naturally followed and the broader concept of health humanities arose. Our presentation provides a collection that draws out researchers’ and clinicians’ health humanities experiences within the context of geriatric care focusing particularly on interactions with persons diagnosed with dementia, staff within traditional residential care facilities, senior centers, and those institutions not originally envisioned or designed as places of aging (e.g., prisons). We bring this research to life by providing an understanding of the practices, research, and activities suitable for the home or institutional context.
Comparing ICECAP-O Dimensions to Quality of Life Profile Dimensions in Understanding Overall Quality of Life Perceived by Older People Living in Continuing Care Residences in Canada
Paper Presentation in a Themed Session Helen Kelley, Carla Carnaghan
ICECAP-O is a five-item instrument measuring quality of life, normally used in economic valuation. It reflects respondents’ perspectives on their ability to: have love and friendship; think positively about the future; feel valued; have enjoyment; and have independence. Our study uses the Quality of Life Profile Seniors Version (QOLP-SV) comprising 71 items in nine dimensions (physical, psychological, and spiritual functioning; physical, social, and community environments; and practical, leisure, and growth activities) to better understand the explanatory power of QOLP-SV versus ICECAP-O dimensions in explaining overall quality of life. Data from the QOLP-SV and ICECAP-O instruments as well as an overall quality of life question were collected from older people or their proxies (n = 119; age mean = 84.9 years) living in continuing care in western Canada. Dominance analysis using separate multivariate regression modes for each instrument finds enjoyment and pleasure, friendship and love, and being valued as the most important predictors of overall quality of life when using ICECAP-O variables, and the physical environment, community access, and spiritual health as the most important predictors of overall quality of life when using QOLP-SV variables. Dominance analysis combining ICECAP-O and QOLP-SV finds that four of the five most important predictors (physical belonging, community belonging, spiritual being, and physical being) of overall quality of life are from the QOLP-SV dimensions, with enjoyment and pleasure being the most important predictor from the ICECAP-O model. The above results generally hold even when a proxy for respondents’ health status is also included.
