None listed
Conditions
Brief summary
The Enhanced Advance care planning and life Review Longitudinal Intervention (EARLI) aims to enable older adults to effectively engage with Advance Care Planning (ACP), in the home care setting. Advance care planning is the process by which older adults, or people who are experiencing chronic disease, terminal illness (including cancer) and/or are at risk of dementia and similar conditions can provide instructions to their carer/s about their main preferences and goals for future care, should they reach a stage where they may not be able to make these decisions on a day-to-day basis. Who is it for? You may be eligible for this study if you are aged 65 years or older (50 years or older for Aboriginal or Torres Strait Islander people), you have had a previous aged care assessment team (ACAT) assessment, you are living in a private residence (own or rented dwelling, including retirement village or other co-operative housing, but NOT a residential aged care facility) and you are receiving home care services from one of the participating aged care provider study sites (Home Care Package Level 1-4, or commensurate self-funded service). Participants who meet these criteria and have been diagnosed with cancer will also be eligible. Study details Participants who choose to enrol in this study will be allocated to one of two groups. The first group will receive the EARLI program which involves meeting with a member of the research team every fortnight for up to 10 weeks. Each meeting is expected to last up to 1 hour and these participants will be guided through the ACP process and given an opportunity to discuss their goals and preferences with members of their aged care and primary care (GP or other specialist) teams. The second group will be given one 30 minute session which provides a brief introduction to ACP and directs participants to available resources. The allocation into the first or second group is randomised (like flipping a coin) - each aged care provider study site will be randomly allocated to recruit for the first or second group for 2 months, before swapping over. Each participant will be invited to participate in just one of the groups, with the allocation depending on which stage of the process the aged care organisation is in at the time the participant is recruited to the study. The overall duration of participation in this study will be 3 months from the date of enrolment. It is hoped this research will determine whether it is possible to deliver the EARLI program in the Australian home care setting and gather initial details on the effect of these modules on participants' confidence in making decisions. If the current study is positive, these results will be used to guide a larger clinical trial that may enrol participants across multiple sites in Australia.
Interventions
EARLI intervention The modular EARLI intervention is delivered by a trained interventionist (nurse, social worker or allied health practitioner). Training in the intervention will be designed by the EARLI investigator team, and delivered by the Chief Investigator, with input from investigators with specific expertise (clinical psychology, palliative care, geriatrics) as relevant. The training will be delivered face to face where possible, or by video-conference in situations where the interventionist is not based in Sydney. It is anticipated that the duration of the training will be approximately 8 hours (full day), undertaken in multiple sessions as required. Attendance and completion of the training activities will be monitored by the research team. For each participant, the intervention is delivered over four, approximately fortnightly sessions in the participant's home, supplemented by fortnightly (~15 minute, alternate week) phone follow up with the interventionist, to provide follow up support in undertaking the life story work. The intervention culminates in a meeting (visit 4) with the participant's home care coordinator (or delegated staff with ongoing role in managing the participant's home care services) and a member of the participant's primary care team (e.g. General Practitioner or General Practice nurse, by telehealth). Scheduled visit sessions are planned to be delivered in person, however if video-conference options are used this will be documented. The contents of the EARLI intervention study visits are described below: Session 1 (Life Review Interview): in an approximately 60 minute session, the interventionist builds rapport and activates meaning-based coping through a structured reminiscence intervention (Life Review Interview) which focuses on valued domains from the participant's life story (roles, places, relationships, qualities), leading to identification of a tangible memento or 'life story project' to work on during the remainder of the intervention period. Session 2 (My Wishes Part 1): in an approximately 60 minute session, the interventionist provides follow up support on the life story project, in addition to exploring the participant's key life values and thoughts on 'living well', now and in the future. The concept of advance care planning will be explained and explored using a values clarification aid (discussion starter card set). Session 3 (My Wishes Part 2): in an approximately 60 minute session, the interventionist provides follow up support on the life story project, and provides facilitated advance care planning for the participant, focusing on developing goals for future care into more specific care and treatment preferences. Session 4 (Care Provider Review Meeting): in an approximately 60 minute session, the interventionist assists the participant to summarise their discussions and communicate their goals and values for future care to key members of their aged care and primary care teams. The second half of this session includes a 30 minute facilitated discussion, involving the study interventionist, care recipient (participant), care partner (participant), aged care provider home care coordinator and general practitioner (GP) or general practice nurse (GPN) (Anticipated that GP/GPN will attend by telehealth). A follow up fifth session (up to 30 minutes, telehealth) is available to intervention participants if they experience a sentinel event (assessment of higher care needs, unplanned hospital admission or residential respite stay, residential aged care facility admission) or otherwise request the follow up session. The purpose of this session is to enable follow up support, review/revision of previous advance care planning documentation. In a situation in which the care recipient participant has deteriorated significantly and is unable to participate, this fifth session may focus on supporting the care partner in their role as a substitute decision-maker (if relevant). A post-visit review form will be used to monitor intervention adherence for every completed visit. In addition, a random sub-sample of intervention audio recordings (collected with participant consent) will be assessed by the Chief Investigator and other members of the Investigator group, with feedback on intervention adherence provided as part of ongoing clinical supervision for the interventionist. This more detailed monitoring will be undertaken for 10/10 intervention participants during the pilot feasibility trial phase.
Sponsors
University of New South Wales
Study design
Allocation
Randomised controlled trial
Intervention model
Crossover
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
65 Years to No maximum
Healthy volunteers
No
Inclusion criteria
1. aged 65 years or older (50 years or older for Aboriginal or Torres Strait Islander people); 2. a previous aged care assessment team (ACAT) assessment; 3. living in a private residence (own or rented dwelling, including retirement village or other co-operative housing, but NOT a residential aged care facility) with an address within the study region(s); 4. receiving home care services from one of the participating aged care provider study sites (Home Care Package Level 1-4, Commonwealth Home Support Program, or commensurate self-funded service); 5. able to communicate in English, Italian or Mandarin; 6. capable of providing informed consent at initial recruitment and answering baseline questions (successfully completing at least 75% of baseline questions). Care partner inclusion criteria: 1. Aged 18 years or over 2. Able to communicate in English, Italian or Mandarin 3. Capable of providing informed consent at initial recruitment and answering baseline questions (successfully completing at least 75% of baseline questions).
Exclusion criteria
1. the aged care provider study site representative expresses significant concern about home visit safety (either for the care recipient or for the interventionist) which cannot be appropriately managed; 2. a baseline cognitive assessment indicates greater than moderate level of cognitive impairment (Telephone Montreal Cognitive Assessment Score <8); 3. a baseline clinical frailty assessment indicates greater than severe frailty (CFS score >7); 4. it becomes known that the person is expected to die within 'days or weeks' (based on information provided by the aged care provider and/or participant's general practitioner during the recruitment process).
Outcome results
None listed