ORCID Profile
0000-0003-4115-7875
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Publisher: SAGE Publications
Date: 13-11-2017
Abstract: Early involvement of palliative care improves patient quality of life however, quantitative studies have not yet demonstrated a similar effect for caregivers, for whom the construct of quality of life is less well developed. To conceptualise quality of life of caregivers from their own perspective and to explore differences in themes between those who did or did not receive an early palliative care intervention. Qualitative grounded theory study. Tertiary comprehensive cancer centre. Following participation in a cluster-randomised trial of early palliative care, 23 caregivers (14 intervention and 9 control) of patients with advanced cancer participated in semi-structured interviews to discuss their quality of life. The core category was ‘living in the patient’s world’. Five related themes were ‘burden of illness and caregiving’, ‘assuming the caregiver role’, ‘renegotiating relationships’, ‘confronting mortality’ and ‘maintaining resilience’. There was thematic consistency between trial arms, except for the last two themes, which had distinct differences. Participants in the intervention group engaged in open discussion about the end of life, balanced hope with realism and had increased confidence from a range of professional supports. Controls tended to engage in ‘deliberate ignorance’ about the future, felt uncertain about how they would cope and lacked knowledge of available supports. Caregiver quality of life is influenced profoundly by the interaction with the patient and should be measured with specific questionnaires that include content related to confronting mortality and professional supports. This would improve delineation of quality of life for caregivers and allow greater sensitivity to change. clinicaltrials.gov NCT01248624
Publisher: CSIRO Publishing
Date: 13-10-2022
DOI: 10.1071/AH22103
Abstract: Objectives This study describes the model of care provided by an integrated respiratory and palliative care service for patients with advanced lung disease, and assesses the potential impact of the service on acute hospital utilisation and cost. Methods This study implemented an integrated specialist care service at a single tertiary teaching hospital in Melbourne, Victoria, Australia. The service provided disease-orientated care, alongside symptom management and advance care planning, and comprised both outpatient clinic (OPC) and home visit (HV) capacity for those with barriers to accessing OPC. Acute hospital utilisation and hospital cost were analysed with a paired t-test 90 days before/after the first physician review. Results Between April 2017 and 2019, 51 patients received 59 HVs, whereas between July 2018 and 2020, 58 patients received 206 OPC reviews. Acute hospital admissions decreased by 51% in the HV cohort (P 0.05) and by 46% in the OPC cohort (P = 0.01) total bed days of acute admissions decreased by 29% in the HV cohort (P = n.s.), and by 60% in the OPC cohort (P 0.05) and specialist outpatient clinic attendances decreased in the OPC cohort by 55% (P 0.01). There was a decrease in hospital cost for the HV cohort by 3% (cost savings of A$18 579), and in the OPC cohort by 23% (cost savings of A$109 149). Conclusions This model of care provided specialist respiratory management with seamless integration of palliative care, with the capacity for home visits. There was a decrease in acute hospital utilisation and overall cost savings observed in both HV and OPC cohorts.
Publisher: CSIRO Publishing
Date: 06-07-2023
DOI: 10.1071/AH23076
Abstract: Objectives Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care – the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals – who spoke of ‘growing this plan together’ the delivery of person-centred care – where physicians ‘actually listen and you are not treated like a number’ the reality of action plan use in serious illness – while many found plans ‘certainly’ do help, others described when they were simply ‘too ill to do the action plan’ and finally, ergent preferences for discussions about future care – while some patients felt this subject was ‘better left alone’, caregivers consistently reported their preference was to ‘make a plan.’ Conclusion Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential erging preferences of the patient and caregiver when discussing future care.
Publisher: Frontiers Media SA
Date: 04-07-2013
DOI: 10.1111/TRI.12137
Publisher: Springer Science and Business Media LLC
Date: 07-10-2016
DOI: 10.1007/S00520-016-3433-6
Abstract: The purposes of the study were to assess awareness and prevalence of advance directives (ADs) among patients with advanced cancer undergoing active outpatient care and to determine factors associated with AD completion before and after the diagnosis of cancer. Patients with advanced solid tumor malignancy receiving treatment at the Chemotherapy Day Unit were approached for recruitment. They completed an onsite questionnaire about completion and timing of ADs, demographic information, and perceived health a review of their medical records was conducted to document their cancer care and co-morbidities. Multinomial logistic regression analysis identified factors associated with the timing of AD completion (pre-cancer, post-cancer, or not at all). Two hundred patients were enrolled, with 193 surveys available for analysis. ADs were completed in 55 % (106/193) of patients, including a living will in 33 % (63/193), a power of attorney in 49 % (95/193), and a do-not-resuscitate (DNR) designation in 18 % (35/193). Most patients (53 %) had completed an AD before being diagnosed with cancer. Higher income (p = 0.02) and age (p = 0.004) were associated with AD completion pre-cancer diagnosis discussion of end-of-life care (p = 0.02) and palliative care referral (p < 0.0001) were associated with AD completion post-cancer diagnosis. This study demonstrates that different factors may influence the completion of ADs before and after a diagnosis of cancer and highlights the potential for early palliative care to impact the completion of ADs in patients with advanced cancer who are undergoing active cancer treatment.
Publisher: Elsevier BV
Date: 04-2015
Publisher: Wiley
Date: 31-03-2016
Publisher: Wiley
Date: 29-09-2023
DOI: 10.1111/IMJ.16233
Publisher: Elsevier BV
Date: 2017
Abstract: Early palliative care improves the quality of life (QoL) and satisfaction with care of patients with advanced cancer, but little is known about its effect on caregivers. Here, we report outcomes of caregiver satisfaction with care and QoL from a trial of early palliative care. Twenty-four medical oncology clinics were cluster-randomised, stratified by tumour site (lung, gastrointestinal, genitourinary, breast and gynaecological), to early palliative care team referral, or to standard oncology care with palliative care only as needed. Caregivers of patients with advanced cancer (clinical prognosis of 6-24 months, Eastern Cooperative Oncology Group 0-2) in both trial arms completed validated measures assessing satisfaction with care (FAMCARE-19) and QoL [SF-36v2 Health Survey Caregiver QoL-Cancer (CQoL-C)], at baseline and monthly for 4 months. We used a multilevel linear random-intercept mixed-effect model to test whether there was improvement in the intervention group relative to the control group over 3 and 4 months. A total of 182 caregivers completed baseline measures (94 intervention, 88 control) 151 caregivers (77 intervention, 74 control) completed at least one follow-up assessment. Satisfaction with care improved in the palliative intervention group compared with controls over 3 months (P = 0.007) and 4 months (P = 0.02). There was no significant improvement in the intervention group compared with controls for CQoL-C (3 months: P = 0.92, 4 months: P = 0.51), Physical Component Summary of the SF-36v2 Health Survey (3 months: P = 0.83, 4 months: P = 0.20), or Mental Component Summary of the SF-36v2 Health Survey (3 months: P = 0.87, 4 months: P = 0.60). Early palliative care increased satisfaction with care in caregivers of patients with advanced cancer. NCT01248624.
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