Dr Olivia Wynne

Aim: To synthesise research describing the long-term unmet needs of carers who are providing care to a stroke survivor at home who is at least 3¿months post-discharge. Methods: A systematic review with a narrative synthesis of the English-language qualitative and quantitative studies identified from MEDLINE, CINAHL, PsycINFO, EMBASE, AMED, and Scopus was undertaken. Results: Five quantitative studies, seven qualitative studies, and one mixed-method study were included in the review. Five themes of unmet needs were identified from the synthesis: (1) Obtaining adequate information, (2) Taking care of oneself, (3) Service accessibility, (4) Emotional and psychological, and (5) Relationship. Commonly reported needs across the 13 final studies included the need for support from health care and/or service providers, help with self-care, and help with coping and managing emotions. Variables associated with unmet needs included the severity of the stroke that the stroke survivor experienced and the length of hospital stay. Conclusions: Evidence from this review suggests that carers are experiencing a range of long-term unmet needs, particularly in education and training, coping and managing their own emotions, and accessing much-needed services. Recommendations to support carers at home include continuing engagement, assessment, and support from health care providers and services to meet the needs of carers throughout the stroke recovery process.IMPLICATIONS FOR REHABILITATION Carers of stroke survivors experience complex long-term unmet needs around managing the recovery process of the stroke survivor when they have been discharged from hospital and returned home. Evidence suggests that continuing engagement and support from health care providers and services may assist carers in meeting their unmet needs. Healthcare professionals should provide help in accessing training and services. Support is required to help carers cope and to manage their emotions.

Content produced by caregivers of stroke survivors on the online video-sharing platform YouTube may be a good source of knowledge regarding caregivers¿ unmet needs. We aimed to examine the content, quantity and quality of YouTube videos that target and discuss the needs and concerns of caregivers of stroke survivors. YouTube was systematically searched using six search strings, and the first 20 videos retrieved from each search were screened against the inclusion criteria. A pre-determined coding schedule was used to report the rate of unmet needs in each video. Twenty-six videos were included in the analysis. In total, 291 unmet needs were reported by caregivers of stroke survivors, an average of 11.2 unmet needs per video. The most common unmet needs domain was ¿Impact of Caregiving on Daily Activities¿ (44%). Most videos were developed in the United States (61.5%) and featured spouses of stroke survivors (65.47%). Content produced by caregivers of stroke survivors on YouTube may be used as a tool for caregivers to provide and receive support through online communication. YouTube videos offer insight into the unmet needs of caregivers of stroke survivors and may be used as an additional resource for stroke services to support caregivers.

Background Stroke events often result in long-term negative health outcomes. People who experience a first stroke event are 30%-40% more likely to experience a second stroke event within 5 years. An online secondary prevention programme for stroke survivors may help stroke survivors improve their health risk behaviours and lower their risk of a second stroke. Objectives This paper describes the development and early iteration testing of the usability and acceptability of an online secondary prevention programme for stroke survivors (Prevent 2nd Stroke, P2S). P2S aims to address six modifiable health risk behaviours of stroke: blood pressure, physical activity, nutrition, depression and anxiety, smoking, and alcohol consumption. Methods P2S was developed as an eight-module online secondary prevention programme for stroke survivors. Modelled on the DoTTI (Design and development, Testing early iterations, Testing for effectiveness, Integration and implementation) framework for the development of online programmes, the following stages were followed during programme development: (1) content development and design; and (2) testing early iteration. The programme was pilot-tested with 15 stroke survivors who assessed P2S on usability and acceptability. Results In stage 1, experts provided input for the content development of P2S. In stage 2, 15 stroke survivors were recruited for usability testing of P2S. They reported high ratings of usability and acceptability of P2S. P2S was generally regarded as easy to use' and relevant to stroke survivors'. Participants also largely agreed that it was appropriate to offer lifestyle advice to stroke survivors through the internet. Conclusions The study found that an online secondary prevention programme was acceptable and easily usable by stroke survivors. The next step is to conduct a randomised controlled trial to assess the effectiveness of the programme regarding behaviour change and determine the cost-effectiveness of the intervention.

Recent statistics released by Alzheimer's Disease International has highlighted how prevalent dementia will become in the next couple of years. Along with the increased incidence of individuals being diagnosed with dementia, there has also been an increment in the number of informal carers for people living with dementia. A recent report highlighted that in Australia, there are an estimated of 200,000 informal carers as of 2011. Caring for people who are living with dementia is not an easy task. Previous studies have highlighted that as much as 65% of caregivers do experience symptoms suggestive of depressive symptoms in the process of care. With the rapid advances in technology, it is of no surprise that information technology and its related innovations have been used in dementia care. A review of the existing literature shows that much of these innovations are focused on the care of patients affiliated with dementia. However, clearly interventions focusing on the needs of the dementia cohort of patient are limited. There are currently more emerging studies demonstrating the efficacy of web-based interventional toolkits for carers who are caring for individuals with dementia. Whilst there are previous studies demonstrating the effectiveness of smartphone interventions for dementia patients, there remains a paucity of smartphone based interventions for caregivers who are living with people with dementia. This technical note describes the conceptualization of an evidence based smartphone intervention for patients living with dementia, as well as for carers of these patients.