Beyond Multi-morbidity: Patient Perceptions of the Impact of Illness

Produced by the Health System Performance Research Network.In this report, we discuss findings from a qualitative study focusing specifically on social complexity (i.e., how illness affects the daily lives of people). The intent is to open up dialogue on what health care systems can do to better manage patient complexity. We report findings from a secondary analysis of a sub-set of interviews with adults receiving care in a Complex Continuing Care and Rehabilitation facility in Toronto, Ontario. Complex Continuing Care and Rehabilitation is a post-acute care designation for people with high care needs who require additional support to stabilize their health before returning home. The interviews were collected originally for a mixed-methods study that explored the characteristics, needs and experiences of people in this care setting.Supported by the Ontario Ministry of Health and Long-Term Care

‘Confidence and fulfillment’: a qualitative descriptive study exploring the impact of palliative care training for long-term care physicians and nurses

Objective: To explore the impact of a 2-day, in-person interprofessional palliative care course for staff working in long-term care (LTC) homes. Methods: A qualitative descriptive study design was employed. LTC staff who had participated in Pallium Canada’s Learning Essential Approaches to Palliative Care LTC Course in Ontario, Canada between 2017 and 2019 were approached. Semi-structured interviews were conducted, using an online videoconferencing platform in mid-2021 in Ontario, Canada. These were done online, recorded, and transcribed. Data were coded inductively. Results: Ten persons were interviewed: four registered practical nurses, three registered nurses, one nurse practitioner, and two physicians. Some held leadership roles. Participants described ongoing impact on themselves and their ability to provide end-of-life (EOL) care (micro-level), their services and institutions (meso-level), and their healthcare systems (macro-level). At a micro-level, participants described increased knowledge and confidence to support residents and families, and increased work fulfillment. At the meso-level, their teams gained increased collective knowledge and greater interprofessional collaboration to provide palliative care. At the macro level, some participants connected with other LTC homes and external stakeholders to improve palliative care across the sector. Training provided much-needed preparedness to respond to the impact of the COVID-19 pandemic, including undertaking advance care planning and EOL conversations. The pandemic caused staff burnout and shortages, creating challenges to applying course learnings. Significance of results: The impact of palliative care training had ripple effects several years after completing the training, and equipped staff with key skills to provide care during the COVID-19 pandemic. Palliative care education of staff remains a critical element of an overall strategy to improve the integration of palliative care in LTC

A qualitative descriptive study on the alignment of care goals between older persons with multi-morbidities, their family physicians and informal caregivers

Abstract Background Goal setting is a recommended approach in clinical care that can help individuals with multi-morbidities and their caregivers manage chronic conditions. In this paper, the types of goals that were important for older persons with multi-morbidities were explored from the perspectives of patients, their caregivers and physicians. Comparisons of goals were made across each patient, caregiver and physician triad to determine alignment. Methods The study was a qualitative descriptive study facilitated through semi-structured one-on-one interviews. The study took place between May and October 2012 at a Family Health Team located in Ontario, Canada. The sample included 28 family medicine patients, their informal caregivers and family physicians. Socio-demographic data were analyzed via descriptive statistics in SPSS Version 17. Open ended questions pertaining to patient goals of care were analyzed thematically using NVivo9. Themes were derived on patient care goals for each of the participant groups (patients, caregivers and family physicians). Following this, alignment of goals across each of the triads was examined. Goal alignment was defined as concurrence on at least one goal by all three parties in a particular triad (i.e., patient, caregiver and family physician). Results Just over half of the patients were male (56%); they had an average age of 82.3 years and 4.61 health conditions. Most of the caregivers were female (82%); and 61% were a spouse of the care recipient. At the aggregate level, common goals expressed among patients, caregivers and family physicians were the maintenance of functional independence of patients and the management of their symptoms or functional challenges. Despite these common goals at the aggregate level, little alignment of goals was found when looking across patient-caregiver and physician triads. Lack of alignment tended to occur when patients had unstable or declining functional or cognitive health; when safety threats were noted; and when enhanced care services were required. Conclusions The data suggest that goal divergence tends to occur when patients are less medically stable. While goal divergence may be expected due to the different roles and responsibilities of each of the players involved, these perspectives should be illuminated when building care plans. Further research is required to observe the extent to which goal setting occurs in family practice as well as how it can be embedded as a standard of practice

sj-docx-2-pcr-10.1177_26323524241235180 – Supplemental material for ‘Confidence and fulfillment’: a qualitative descriptive study exploring the impact of palliative care training for long-term care physicians and nurses

Supplemental material, sj-docx-2-pcr-10.1177_26323524241235180 for ‘Confidence and fulfillment’: a qualitative descriptive study exploring the impact of palliative care training for long-term care physicians and nurses by Ashlinder Gill, Lynn Meadows, Jessica Ashbourne, Sharon Kaasalainen, Sandy Shamon and José Pereira in Palliative Care and Social Practice</p

sj-docx-1-pcr-10.1177_26323524241235180 – Supplemental material for ‘Confidence and fulfillment’: a qualitative descriptive study exploring the impact of palliative care training for long-term care physicians and nurses

Supplemental material, sj-docx-1-pcr-10.1177_26323524241235180 for ‘Confidence and fulfillment’: a qualitative descriptive study exploring the impact of palliative care training for long-term care physicians and nurses by Ashlinder Gill, Lynn Meadows, Jessica Ashbourne, Sharon Kaasalainen, Sandy Shamon and José Pereira in Palliative Care and Social Practice</p

“You’ve got to look after yourself, to be able to look after them” a qualitative study of the unmet needs of caregivers of community based primary health care patients

Abstract Background There is growing reliance on unpaid caregivers to provide support to people with care needs. Integrated care approaches that aim to coordinate primary care with community care known as community based primary health care (CBPHC) has been a key policy initiative across health systems; however most attention has been paid to the needs of patients and not caregivers. The objective of this paper was to explore the unmet needs of caregivers of older adults with complex care needs receiving CBPHC. Methods This qualitative descriptive study entailed one-to-one interviews with 80 caregivers from Canada and New Zealand where roles, experiences and needs were explored. Interview text related to unmet need was reviewed inductively and core themes identified. Results Three themes were identified across CBPHC sites: unrecognized role; lack of personal resources; and no breaks even when services are in place. Conclusions To support caregivers, models of care such as CBPHC need to look beyond the patient to meaningfully engage caregivers, address their needs and recognize the insight they hold. This knowledge needs to be valued as a key source of evidence to inform developments in health and social care