BACKGROUND: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland.
METHODS: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public.
RESULTS: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content.
CONCLUSIONS: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative.
Background: Project ECHO™ (Extension for Community Healthcare Outcomes) is a form of online interactive teaching, which has gained international traction. This project evaluates the effectiveness of an ECHO-delivered palliative care education program for the South Dublin region of Ireland. Our aim was to measure project success by quantifying gains in staff confidence.
Methods: The educational program consisted of 10 interactive sessions over a five-month period on palliative care topics ranging from pain management to advance care planning. Twenty nursing homes took part in the education program. Of these, a subgroup of six nursing homes were randomly selected for assessment. Likert scale-based questionnaires assessed staff confidence before and after each lecture and assessment was repeated at least six weeks postlecture. Five of the 10 sessions were assessed in this way. Other characteristics such as staff role and years of experience were also collected.
Results: Twenty nursing homes and 353 staff participated in the education sessions. Of the 6 nursing homes chosen for assessment, an average of 42 questionnaires were returned per session (n = 211), representing 83% of attendees at these 6 selected nursing homes. Seventy-seven percent of questionnaires were successfully followed up for six weeks. Average confidence increased by 27% pre- to postlecture (6.4 [SD = 1.4] to 8.1 [SD = 2.1], p < 0.005). Confidence gains persisted at six weeks; 8.1 of 10 (SD = 1.4), with no significant drop-off (-0.01/10, p = 0.95). All staff groups (nursing vs. non-nursing) exhibited equal confidence gains (nursing gain of 27%, non-nursing gain 22%, p = 0.16), and all confidence gains persisted at six weeks.
Conclusion: This interactive, novel, training program significantly improved nursing home staff confidence in managing palliative care situations, and this confidence was sustained at least six weeks after the sessions.
Background: Limited evidence exists on the impact of palliative rehabilitation during systemic treatment of advanced cancer.
Aim: To explore the experiences and perceptions of patients and healthcare professionals on the feasibility and acceptability of palliative rehabilitation during advanced lung cancer treatment.
Design: Qualitative design using individual semi-structured interviews transcribed verbatim and analysed thematically.
Setting/participants: Eight patients and six healthcare professionals were recruited from a regional cancer centre in the United Kingdom following completion of a 6-week individualised behaviour change study which combined physical activity and nutritional guidance.
Results: Palliative rehabilitation and study participation were positively viewed by both participants and healthcare professionals. Five themes were identified from patient interviews within an overarching theme of living with and beyond an advanced cancer diagnosis: (1) challenges of living with incurable cancer, (2) personal and altruistic reasons for participating in rehabilitation, (3) applicability of palliative rehabilitation content, (4) barriers and facilitators to adherence and (5) positive impact on self and others. Three themes were identified from healthcare professionals, within an overarching theme of palliative rehabilitation: exploring the concept (1) pre-study-mixed perceptions of palliative rehabilitation, (2) perceived benefits for patients and families and (3) lessons for future research.
Conclusion: Patients described personal benefits associated with setting their own goals for physical activity and dietary intake. Healthcare professionals who initially expressed a negative or indifferent stance towards palliative rehabilitation, displayed a mind-set change and were keen to explore further opportunities to expand the evidence base.