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Carers' concerns about their older persons (Carees) at risk of falling - a mixed-methods study protocol.

ABSTRACT: BACKGROUND:When dependent older persons (carees) experience a fall at home, their carers worry that they will fall again. This ongoing concern affects the carers' wellbeing, perception of burden and can potentially change care arrangements. Previous research has focused on carers of high fall risk older persons with stroke, dementia or Parkinson's disease. However, little is known about the carers' concerns for carees at risk of falling generally; and there is no validated instrument to measure this concern. This study aims to explore carers' fall concern about carees at risk of falling and the development of an instrument to measure this concern. METHODS:This study utilises an exploratory sequential design in the development of an instrument to measure carers' concerns. Phase One will explore carers' fall concern using a descriptive qualitative approach. Phases Two and Three will involve expert review, pilot testing and field testing of the instrument. Twenty participants will be recruited by purposive sampling in phase one, and convenience sampling of 50 and 250 participants respectively, in Phases Two and Three. The participants will be recruited from research volunteer registers and local hospital outpatient clinics. Participants will be 18 years old and older and the main carer of an older person. Participants will be interviewed about their concerns about falls. Inductive content analysis will be used to analyse interviews and develop items for the instrument. The psychometric properties of the raw instrument will be tested using an online survey. This study has received ethics approval from the Hunter New England Human Health Research Ethics Committee. DISCUSSION:This study aims to provide greater depth of understanding about the psychological concerns and emotional burden related to carees' falls for carers. Quantifying carers' concerns will provide a context for interventions to assist and support carers and in the greater vigilance of monitoring the falling incidence of carees.

SUBMITTER: Ang SGM

PROVIDER: S-EPMC6204035 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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Carers' concerns about their older persons (Carees) at risk of falling - a mixed-methods study protocol.

Ang Seng Giap Marcus SGM O'Brien Anthony Paul AP Wilson Amanda A

BMC health services research 20181026 1

<h4>Background</h4>When dependent older persons (carees) experience a fall at home, their carers worry that they will fall again. This ongoing concern affects the carers' wellbeing, perception of burden and can potentially change care arrangements. Previous research has focused on carers of high fall risk older persons with stroke, dementia or Parkinson's disease. However, little is known about the carers' concerns for carees at risk of falling generally; and there is no validated instrument to ...[more]

PMID: 30367651

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Project description:BACKGROUND:A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period. OBJECTIVE:This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse. METHODS:Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants' hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage. RESULTS:Of the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction). CONCLUSIONS:Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access. TRIAL REGISTRATION:ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387.

Project description:IntroductionMild cognitive impairment (MCI) not only negatively impacts upon a person's life, but it is also seen as an intermediate stage on the progression to Alzheimer's Disease (AD), and therefore warrants early intervention. However, there is currently no effective pharmacological treatment approved for MCI. There is a paucity of evidence that non-pharmacological interventions such as cognitive training could result in improvements in the daily activities functioning of persons with MCI. Growing evidence has shown that mindfulness meditation increases gray matter volume and concentration in brain regions such as the hippocampus and prefrontal cortex, strengthens brain functional connectivity, and enhances psychological well-being which could be beneficial to counteract the memory and cognitive decline of MCI.AimsWe aim to quantitatively investigate whether mindfulness practice can improve the cognitive function, psychological health, mindfulness and functional abilities in activities of daily living of the MCI participants over time; the relationship between the amount of mindfulness practice and degree of improvement in these health outcomes; and the differential effects and interactions of both formal and informal mindfulness practices. We will also qualitatively address the issues about the MCI participants' and familiar support persons' engagement with the program, the nature of group interactions, their program experience, their perceived effects and expectations of mindfulness practice, and the challenges encountered in practicing mindfulness.MethodsOur study is one of the first mixed-methods longitudinal studies with a 1-year follow-up using a pre- and post-intervention design. It involves the MCI participants and their familiar support person in a customized 8-week group-based mindfulness training program. The outcome measures will use the Montreal Cognitive Assessment, Depression Anxiety Stress Scales, Freiburg Mindfulness Inventory and Bayer Activities of Daily Living Scale. The qualitative methods will include participant observation during the program and semi-structured interviews at post-intervention and 1-year follow-up.SignificanceThis customized MCI group mindfulness training program presents as a promising and feasible non-pharmacological therapeutic intervention option for MCI and a possible preventive strategy for Alzheimer's disease. This study has been registered in the Australian New Zealand Clinical Trials Registry (ANZCTR) (URL: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366695) and allocated theActrnACTRN12614000820606.

Project description:BackgroundInformal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.ObjectiveThis study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).MethodsA systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.ResultsFrom a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.ConclusionsThe review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.

Project description:IntroductionInformal carers support persons with dementia to live at home, even with deteriorating physical, social and cognitive issues. This study aims to examine the experiences and impact of Assistive Technology (AT) on carers, providing care for a person with dementia.MethodsThis is an explanatory sequential mixed methods study. The quantitative phase was an online and postal survey using the Carers Assistive Technology Experience Questionnaire and Short Form-12 (SF-12) questionnaire, with carers of persons with dementia in the UK, who used AT. The qualitative phase involved in-depth telephone interviews with a purposive sample of survey respondents and was analysed using hermeneutic phenomenology to develop, compare and explain the findings of the survey.ResultsThe survey included data from 201 carers. Smartphones (45.5%) and tablet computers (45.0%) were the most frequently used AT. Multiple AT were used in the care of persons with dementia predominantly for safety (78.5%), communication (66.0%), and reminders (62.5%). The SF-12 indicated that carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower mental component scores whilst carers who lived with the person with dementia and older carers had lower physical component scores. Twenty-three carers participated in the interviews, and 5 themes with 14 sub-themes were identified. The interviews helped confirm data from the survey on the impact of AT on the physical, mental and social wellbeing of the carers. It helped describe reasons for satisfaction with AT; how AT was used in daily life and strengthened caring relationships and how wider support systems enhanced the care of a person with dementia using AT.ConclusionsThis study describes the use of AT in the real-world context. AT supplements the care provided to people with dementia in the community. Appropriate use, access to AT and abilities of the carer can enhance the support provided through AT to both carers and the person with dementia.

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Carers' concerns about their older persons (Carees) at risk of falling - a mixed-methods study protocol.

Publications

Carers' concerns about their older persons (Carees) at risk of falling - a mixed-methods study protocol.

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