‘Caring for the Carer’: implementing a comprehensive support service model for family caregivers looking after persons with age-related macular degeneration.

The intervention is a comprehensive support service comprising: 1) mail-delivered cognitive behavioural therapy (M-CBT), designed to improve psychological adjustment and adaptive coping skills; 2) telephone-delivered group counselling sessions - allows carers to explore the impacts of caring and share their experiences; and 3) education on available community services/resources, financial benefits, and respite services. The M-CBT will be delivered by mail plus weekly telephone contact by appropriately trained staff from our partner organisation - Macular Disease Foundation Australia (MDFA). The M-CBT will be conducted over 10 weeks with CBT modules mailed every 2 weeks. Each module will target a specific stressor and/or train a new adaptive coping method, and will be supported by targeted homework assignments for the caregiver to practice between sessions. Duration of these homework assignments is between 15-20 mins per week. These will draw upon standard CBT practice and on a number of additional sources including published trials, empirical studies, and treatment guides. The brief CBT program will consist of components shown to have beneficial impacts of psychological morbidity. These components will include: psycho-education on stress and arousal; slow breathing skills; adaptive coping skills like mindfulness relaxation, evidence based thinking, problem solving skills, and developing pleasant life event schedules. The educational materials provided include age-appropriate case stories and examples of skill use. All material will be presented in both a didactic form (text based instructions/information) and a case-enhanced learning form (i.e., where educational stories are used to demonstrate the application of skills and problem resolution). The material sent out to participants will aim to increase their knowledge about support and respite services, and financial entitlements and benefits, how best to access them, which has been previously shown to increase carer sense of competence and reduce depression. MDFA staff will notify participants of new material, prompt them to view unread materials, encourage progress through the CBT modules and normalise the difficulties in learning new skills and managing symptoms. This will help maintain fidelity to the intervention. The intervention also includes the Talk-Link counselling sessions; an existing service offered by our other partner organisation - Carers NSW. Participants will be asked to complete a form before the sessions to identify the issues they might want to discuss. These will then be developed into weekly topics to guide group discussions. Information/ newsletters are also provided by the facilitators. Using teleconferencing, a group of 6-8 caregivers and two trained facilitators will get together over the telephone, at the same time each week, to explore issues around caring for someone with AMD. Carers NSW have used this approach previously in older carers e.g. carers of people with dementia. These sessions will run for 6 consecutive weeks (starting in week 1 of the 10-week program), each weekly session lasts for 1 hr, and will be concurrent with the M-CBT program. At the start of the program; guidelines; recommended timetable of the program, and the first intervention module will be mailed out to the intervention arm. In that first week, participants will receive a telephone call by MDFA staff encouraging them to participate and carry out the activities and skills in the module. Telephone calls will also be conducted each week of the program, and additional telephone calls may be made by MDFA staff if particular participants are experiencing difficulties in symptoms or have difficulties practising skills. Telephone calls will also assist monitoring of the participants activities and program achievements. The program will be written and designed to (1) remind participants about unread materials; (2) reinforce progress and skills practice; (3) normalise the challenges of learning new skills; and (4) emphasise that symptom reduction requires gentle, but consistent, practice of the skills over time. Costs for study participants will be reduced by providing reply paid envelopes, and the MDFA and Carers NSW already have toll free numbers that participants can contact them on. Calls will be logged for each participant.