Green, A, Jerzmanowska, N, Thristiawati, S, Green, M & Lobb, EA 2019, 'Culturally and linguistically diverse palliative care patients' journeys at the end-of-life.', Palliative and Supportive Care, vol. 17, no. 2, pp. 227-233.View/Download from: Publisher's site
To understand the clinical and psychosocial journey of culturally and linguistically diverse (CALD) palliative care patients.This study was conducted at a subacute hospital with a specialist palliative care unit and a community palliative care service in a metropolitan region of New South Wales, Australia. Medical records of 100 deceased patients from CALD backgrounds over a 12-month period from 2014 to 2015 were recorded on a data mining tool. The cohort had transitioned to either community or inpatient palliative care services with a life-limiting illness. We used descriptive statistical analyses to identify the patients' end-of-life journeys in the physical, psychological, spiritual, and social palliative care domains. Staff case notes were used to enrich the quantitative data.ResultThe most common symptoms burdening the patients were decreased mobility (82%), pain (76%), and poor appetite (60%). The majority of patients (87%) were diagnosed with cancer. Language was a major barrier to the assessment and management of symptoms. The vast majority of patients were born in Europe and Asia. Twenty-nine percent of the patients preferred to use English. However, among patients who required an interpreter on admission, only 9% used professional interpreters. Family distress around patients' lack of food consumption was prominent, along with provider concern when this led to families "force feeding" patients. Only 5% of files documented patients', and 21% of files documented families', cultural wishes or needs. Care of the body after death was only documented in 20% of files.Significance of resultsThe increasing cohort of older people from CALD backgrounds will have significant implications for the planning and delivery of palliative care services. There is an emerging need to address the physical, psychological, spiritual, and social palliative care domains in the end-of-life journeys of patients from CALD backgrounds to ensure the provision of quality care.
Phillips, JL, Lobb, EA, Bellemore, F, Hays, T & Currow, DC 2019, ''Through the eyes of the dying'—Identifying who may benefit from bereavement follow-up: A qualitative study', Collegian, vol. 26, no. 6, pp. 615-620.View/Download from: Publisher's site
© 2019 Introduction: Bereavement support is an integral element of palliative care. Emerging evidence stipulates that bereavement support should be reserved for those most at risk of poor outcomes. While this evidence makes identifying those at risk of experiencing a complex bereavement a necessary first step, it has been difficult to arrive at a consensus as to whom that should be. Aim: To explore whether palliative care in-patients with advanced disease are concerned about the bereavement needs of others and, if so, is it their next-of-kin. Design: A qualitative study using semi-structured interviews, and thematic analysis using a constant comparative method. Setting/participants: Patients identified by their physicians as being aware of their limited prognosis (n = 19) in a specialist palliative care service in Sydney, Australia. Findings: Three key themes emerged: 1) Families considered close and supportive may not require bereavement follow-up; 2) Families with previous significant losses or who have more complex lives are perceived by patients as having greater risk; and 3) Asking palliative care patients about whom they are most concerned in their network after their death is difficult but possible. Conclusions: There are potentially people in the palliative patients' networks who may be in need of bereavement support, but who are unlikely to be informed about available bereavement services. New strategies are needed to identify people who may benefit from bereavement support.
Green, A, Jerzmanowska, N, Green, M & Lobb, EA 2018, '"Death is difficult in any language': A qualitative study of palliative care professionals' experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds', PALLIATIVE MEDICINE, vol. 32, no. 8, pp. 1419-1427.View/Download from: Publisher's site
Cahill, PJ, Sanderson, CR, Lobb, EA & Phillips, JL 2018, 'The VOICE Study: Valuing Opinions, Individual Communication and Experience: building the evidence base for undertaking Patient-Centred Family Meetings in palliative care - a mixed methods study.', Pilot and Feasibility Studies, vol. 4, pp. 51-51.View/Download from: Publisher's site
Despite family meetings being widely used to facilitate discussion among patients, families, and clinicians in palliative care, there is limited evidence to support their use. This study aims to assess the acceptability and feasibility of Patient-Centred Family Meetings in specialist inpatient palliative care units for patients, families, and clinicians and determine the suitability and feasibility of validated outcome measures from the patient and family perspectives.The study is a mixed-methods quasi-experimental design with pre-planned Patient-Centred Family Meetings at the intervention site. The patient will set the meeting agenda a priori allowing an opportunity for their issues to be prioritised and addressed. At the control site, usual care will be maintained which may include a family meeting. Each site will recruit 20 dyads comprising a terminally ill inpatient and their nominated family member. Pre- and post-test administration of the Distress Thermometer, QUAL-EC, QUAL-E, and Patient Health Questionnaire-4 will assess patient and family distress and satisfaction with quality of life. Patient, family, and clinician interviews post-meeting will provide insights into the meeting feasibility and outcome measures. Recruitment percentages and outcome measure completion will also inform feasibility.Descriptive statistics will summarise pre- and post-meeting data generated by the outcome measures. SPSS will analyse the quantitative data. Grounded theory will guide the qualitative data analysis.This study will determine whether planned Patient-Centred Family Meetings are feasible and acceptable and assess the suitability and feasibility of the outcome measures. It will inform a future phase III randomised controlled trial.Australian New Zealand Clinical Trials Registry ACTRN12616001083482 on 11 August 2016.
Phillips, JL, Lobb, E, Mohacsi, P, Heneka, N & Currow, D 2018, 'Identifying systems barriers that may prevent bereavement service access to bereaved carers: A report from an Australian specialist palliative care service', Collegian, vol. 25, no. 1, pp. 39-43.View/Download from: Publisher's site
© 2017 Australian College of Nursing Ltd. Background: Bereavement follow up is an integral element of palliative care. However, little is known about the systems that link bereavement services with bereaved carers. Aim: To map how effectively a specialist palliative care service linked bereavement service to bereaved carers. Methodology: A retrospective medical audit, using process mapping was undertaken within one Australian specialist palliative care service to identify the systems that linked bereavement services to a consecutive cohort of palliative care decedents (n=60) next of kin. Results: Bereavement records were located for 80% of decedents. Nearly all (98%) had a nominated next of kin, with just over half (54%) of those nominated contacted by bereavement services. Incomplete or missing contact details was the main reason (75%) that the bereavement service was unable to contact the decedents' next of kin. Conclusion: Having access to a designated bereavement service can ensure that bereaved next of kin are contract routinely and in a timely way. However the effectiveness of this type of service is dependent upon the bereavement service having access to all relevant contact information. There are numerous opportunities to refine and strengthen the recording of palliative care next of kin details to optimize follow up.
Sanderson, CR, Cahill, PJ, Phillips, JL, Johnson, A & Lobb, EA 2017, 'Patient-centered family meetings in palliative care: a quality improvement project to explore a new model of family meetings with patients and families at the end of life', ANNALS OF PALLIATIVE MEDICINE, vol. 6, pp. S195-S205.View/Download from: Publisher's site