None listed
Conditions
Brief summary
Stroke is a disease with severe consequences for the survivor and the unexpected carer. Carers experience tremendous changes and challenges from role reversal to financial struggle and subsequent increased burden, low mood, and poor overall health. In Australia, there are approximately 60,000 new strokes per year; a decrease in stroke mortality as a result of improvements in medical and surgical management mean people are living longer with the residues of stroke, and that carers increasingly face long-term burden. Eighty percent of individuals who experience stroke return home with varying degrees of neurological, behavioural and psychological symptoms. At home, they often rely on informal carers for their physical and emotional support. Previous psychosocial interventions to support informal carers of stroke survivors have shown promising results; however none have sought to integrate carer interventions with care coordination. To address this, the Australian Care Coordination program (ACCORD) has combined a 12-week individualised Collaborative Therapy with 3-month, 6-month and 12-month follow-up and care coordination in a 4-year study. This research will assess the feasibility and cost-effectiveness of improving the mental and physical health, social connectedness and health service utilisation of the carers of stroke as well as stroke survivors. This model will be designed with the intention of being readily adapted and applied in the context of other physical and also mental diseases. The findings of this randomised control trial will investigate the impact of ACCORD on reducing carer depression, burden and emotional stress.
Interventions
The self-management program called ACCORD will utilise the Collaborative Therapy Framework delivered by a clinical care coordinator (CLT). ACCORD is composed of three core components adapted to suit the specific needs of the carer: a) The framework utilises a modular format. Each module encompasses a manualised discrete skill development intervention run over 12 weeks, one hour in duration, one on one, conducted by a trained health professional, involving: health promotion, interagency collaboration, accessible support care coordinator, information about stroke and resources, understanding stress, family and community support and caring relation to stroke. The modular format allows for tailoring of the intervention to suit the needs of carers of stroke survivors at various stages of the illness. Similarity across modules in terms of the core intervention, plus overlap between modules, enhances implementation through familiarity with the methods and style. This also addresses efficiency and cost-effectiveness with respect to training staff. b) Self-efficacy of the carer is a pivotal part of the process and is taught using a systematic approach to both clinicians and consumers with each module, regardless of content, delivers education, coping strategies, skills development and adaptation paradigms. This supports the philosophy that a person’s illness should not be ‘dependent on’ but ‘supported by’ the services they need to utilise. c) Smooth integration from acute through to community care is paramount. Therapeutic and systemic collaboration with consumers and clinicians will be an integral part of the process. These parties will inform both the content of the group intervention and its integration into existing service structures. Post-intervention focus groups, with clinicians (nurses, physicians, GP’s and mental health workers) and with consumers will be conducted to assist in the evaluation of ACCORD. The focus groups will be for two hours facilitated by two investigators exploring the views of health professionals, carers and survivors of stroke. There will be an opportunity for the investigators to report the findings of the project as well as record the opinions and experiences of the participants. The individualised Collaborative Therapy program (ACCORD) will involve 3-month, 6-month and 12-month follow-up and care coordination over a 4-year period.
Sponsors
Study design
Eligibility
Inclusion criteria
Patients aged 18 years and older with transient ischaemic attack (TIA) or completed stroke (cerebral infarction or parenchymal haemorrhage), as confirmed by CT scan. To enter this study, all stroke patients must have an informal carer. The carer will be an unpaid support person who offers at least 10 hours of care a week and is nominated by the stroke survivor.
Exclusion criteria
Carers who: 1) are non-English speaking and 2) unable to consent.