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
- Conditions
- Palliative CarePublic Health - Health service research
- Registration Number
- ACTRN12616001083482
- Lead Sponsor
- Professor Jane Phillips
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Completed
- Sex
- All
- Target Recruitment
- 40
Patient inclusion criteria
(a)Adult patient aged over 18 years who have been admitted to a participating specialist palliative inpatient facility within the last 7 days;
(b)Have a terminal illness (a prognosis of less than 12 months, but expected to live at least 14 days i.e. the average length of the protocol);
(c)Able to identify a family member (or equivalent person) who consents to participate in the study involving attendance at the Patient-Centred Family Meeting or standard family meeting if convened;
(d)Are classified in accordance with the Palliative Care Outcomes Collaboration (PCOC) palliative care phases at time of recruitment as being either ‘Stable’, ‘Unstable’ or ‘Deteriorating’;
(e)Able to physically participate in a Patient-Centred Family Meeting assessed using the Australian Modified Karnofsky Performance Score and obtaining a score of greater than or equal to 30;
(f)Be able to read and speak English (patients who are visually impaired will be offered assistance with the consent forms and surveys);
(g)Be able to provide valid, informed consent.
Family inclusion criteria
(a)18 years of age or older;
(b)Invited by the patient to participate in a Patient-Centred Family Meeting;
(c)English language and cognitive skills are sufficient to complete baseline information and validated questionnaires and who are able to contribute effectively in the Patient-Centred Family Meeting or standard family meeting if convened;
(d)Be able to provide valid, informed consent and participate in the Patient-Centred Family Meeting.
Patient exclusion criteria
a)Terminal phase (Phase 4 measured by the PCOC Phase assessment) or imminently dying;
b)Presence of delirium measured by validated tool e.g. NuDESC (Leonard et al.);
c)Be cognitively impaired measured by the Mini-Mental State Examination assessment with a score < 24/30;
d)Not able to identify a family member (or equivalent person) who agrees to participate in the Patient-Centred Family Meeting or standard family meeting if convened;
e)Not able to read and speak English;
f) Patients who experience significant family conflict such as an abusive family relationship or history of domestic violence.
Family exclusion criteria
(a)Less than 18 years of age;;
(b)Has been excluded by the patient to participate in the Patient-Centred Family Meeting;
(c)English language or cognitive skills are not sufficient to complete baseline information and validated questionnaires and who are unable to contribute effectively in the Patient-Centred Family Meeting or a standard family meeting if convened.
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method