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Filling the void: how real life health information builds better services
- Author:
- SUE RYDER CARE
- Publisher:
- Sue Ryder Care
- Publication year:
- 2007
- Pagination:
- 12p.
- Place of publication:
- London
The report has revealed a ‘hidden population’ of people living with conditions including multiple sclerosis, Huntington’s disease, Motor Neurone disease and stroke who are unknown to health bodies. Crucially a lack of data is creating a very real barrier to ensuring they receive appropriate, effective and cost-efficient care.
Living with...
- Authors:
- ADCOCK Jeannie, et al
- Publisher:
- Whitehall
- Publication year:
- 2005
- Pagination:
- 240p.
- Place of publication:
- Leicester
The 34 contributors describe their medical conditions in moving, funny, inspirational and powerful ways. They write about their personal experiences of living with conditions from diabetes to deafness, multiple sclerosis to Parkinson's disease, from stroke to "something no one's ever heard of". One of the themes uniting these accounts is the battle to overcome obstacles placed in their way by the attitude of others, including the many health and social care professionals.
Feeling controlled or being in control? Apps for self-management among older people with neurological disability
- Authors:
- WINBERG C., et al
- Journal article citation:
- Disability and Rehabilitation: Assistive Technology, 16(6), 2021, pp.603-608.
- Publisher:
- Taylor and Francis
- Place of publication:
- London
Purpose: The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson’s disease and stroke reason regarding using apps to facilitate self-management in everyday life. Material and methods: A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51–80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson’s disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns. Results: The results formed two themes. The first theme “using apps to have control of my health” comprises two subthemes; “monitor and take responsibility for a healthy lifestyle” and “compensate to facilitate everyday life”. The second theme “using the app as a tool and means for communication” also comprised two subthemes; “dare to trust the app” and “feeling safe when sharing information with health care professionals”. Conclusions: The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered. (Edited publisher abstract)
Do caregivers who connect online have better outcomes? A systematic review of online peer-support interventions for caregivers of people with stroke, dementia, traumatic brain injury, Parkinson’s disease and multiple sclerosis
- Authors:
- WALLACE Sarah J., et al
- Journal article citation:
- Brain Impairment, early cite 15 March 2021,
- Publisher:
- Cambridge University Press
Background and Objectives: This systematic review aimed to identify and appraise the evidence for online peer-support interventions for caregivers of stroke survivors (with and without aphasia), and people with dementia, traumatic brain injury (TBI), Parkinson’s disease and multiple sclerosis. Research Design and Methods: Systematic review conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Five databases were systematically searched up until September 2020: EMBASE, PubMed, CINAHL, Scopus and Web of Science. Two reviewers independently screened titles, abstracts and full-text articles. The methodological quality of included studies was assessed using Physiotherapy Evidence Database (PEDro) and Mixed-Methods Appraisal Tool (MMAT) scales. Interventions were described using the Template for Intervention Description and Replication (TIDieR) checklist. Results: A total of 3026 records were identified from database searches. Following screening, 18 studies reporting 17 interventions were included in this review. Most studies (n = 13) reported interventions for caregivers of people with dementia. All studies incorporated an element of peer support as part of the intervention, however, most interventions (n = 15) comprised both psychosocial and educational elements. Statistically significant changes were reported for 11 interventions in one or more of the following domains: caregiver knowledge, mental health, stress, depression, distress, burden, self-efficacy, mastery, helplessness and perceived support. Qualitative outcomes included perceived reductions in stress and increased emotional and informational support. Discussion and Implications: Positive changes in caregiver outcomes were identified in response to multi-component online interventions (i.e., peer support in addition to education). Peer support was often poorly described, limiting the conclusions that could be drawn about the intervention components which result in better outcomes. Online interventions may provide an accessible and effective means of supporting caregivers. (Edited publisher abstract)
Understanding disability: causes, characteristics and coping
- Author:
- STOPFORD Victoria
- Publisher:
- Edward Arnold
- Publication year:
- 1987
- Pagination:
- 171p., illus., bibliogs.
- Place of publication:
- London