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

Abstract

Abstract Background 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. Methods 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. Discussion 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. Trial registration Australian New Zealand Clinical Trials Registry ACTRN12616001083482 on 11 August 2016

Keywords

• Palliative care
• Family
• Meeting
• Conference
• Terminal care