An integrative review of information and communication technology based support interventions for carers of home dwelling older people.

BACKGROUND: A growing number of studies of informal carers of older people reveal positive results concerning support via Information and Communication Technologies (ICT). Systematic examination of factors that have a potential impact on carer outcomes are needed to inform future research. OBJECTIVE: To explore studies concerning ICT support of adult carers of older people and to identify study characteristics that have a potential impact on carer outcomes. METHODS: This integrative review includes 123 studies published since 2005. Fundamental questions for designing sensitive support interventions; 'who, what, and how' were applied to a synthesis of the results. RESULTS: Identified characteristics from the studies responding to the who question included variables of the carers, such as their relationship with the care recipient or their ethnicity. Characteristics related to the what question related to the types of interventions, and the how question concerned the different services or programs offered, the idiosyncratic needs of the carers, and the types of technologies used. CONCLUSION: Results are discussed according to micro, meso and macro levels of analysis. This extensive review can inform future studies and highlight the evidence in the area for decision makers, practitioners and/or NGOs working with innovative forms of support for carers of older people.

Participation in everyday life and life satisfaction in persons with stroke and their caregivers 3-6 months after onset.

OBJECTIVE: To explore and describe persons with stroke and their caregivers' restrictions in participation in everyday occupations, i.e. occupational gaps, 3-6 months post-stroke, in relation to life satisfaction, combined life satisfaction, care-giver burden, perceived impact of stroke, and activities of daily living. DESIGN: Cross-sectional study. SUBJECTS: Persons with stroke and their caregivers (105 dyads). METHODS: The Occupational Gaps Questionnaire, Life Satisfaction Checklist, Caregiver Burden Scale, Stroke Impact Scale and Barthel Index were used. Correlations were analysed with Spearman's rank, and regression analyses used life satisfaction as the dependent variable. RESULTS: At least one person in 86% of the dyads perceived restrictions in participation, with the most common gap in travelling for pleasure. Correlations were low between the numbers of occupational gaps and life satisfaction (R = -0.33, R = -0.31); however, life satisfaction accounted for occupational gaps both for persons with stroke and for caregivers. A greater number of occupational gaps were perceived in the dyads with combined low levels of life satisfaction compared with those with combined high levels of life satisfaction. CONCLUSION: Participation in everyday occupations is related to life satisfaction even for caregivers of persons with stroke. The results of this study add to our knowledge about the stroke-caregiver dyad and will help to inform family-centred approaches within stroke rehabilitation.

Complex negotiations: the lived experience of enacting agency after a stroke.

OBJECTIVE: This qualitative, longitudinal, descriptive study aimed to understand the lived experience of enacting agency, and to describe the phenomenon of agency and the meaning structure of the phenomenon during the year after a stroke. Agency is defined as making things happen in everyday life through one's actions. METHODS: This study followed six persons (three men and three women, ages 63 to 89), interviewed on four separate occasions. Interview data were analysed using the Empirical Phenomenological Psychological method. RESULTS: The main findings showed that the participants experienced enacting agency in their everyday lives after stroke as negotiating different characteristics over a span of time, a range of difficulty, and in a number of activities, making these negotiations complex. The four characteristics described how the participants made things happen in their everyday lives through managing their disrupted bodies, taking into account their past and envisioning their futures, dealing with the world outside themselves, and negotiating through internal dialogues. CONCLUSIONS: This empirical evidence regarding negotiations challenges traditional definitions of agency and a new definition of agency is proposed. Understanding clients' complex negotiations and offering innovative solutions to train in real-life situations may help in the process of enabling occupations after a stroke.

Perceived occupational gaps one year after stroke: an explorative study.

OBJECTIVE: To explore and describe factors associated with occupational gaps and to identify factors at 3 months that predict occupational gaps one year post-stroke. A gap, a restriction in participation, is considered to be present when there is a discrepancy between what the individual wants to do and what they actually do in everyday life. DESIGN: Prospective longitudinal study. SUBJECTS: Two hundred persons with stroke. METHODS: Data from the Occupational Gaps Questionnaire, one year post-stroke, was used as the dependent variable in 3- and 12-month regression analyses. Domains of the Stroke Impact Scale, global life satisfaction, demographic and medical factors were used as independent variables. RESULTS: At 3 months, activities of daily living abilities, social participation and not being born in Sweden predicted occupational gaps at 12 months. Stroke severity and not being born in Sweden and 3 factors at 12 months: social participation, self-rated recovery, and global life satisfaction were associated with occupational gaps. CONCLUSION: Activities of daily living ability at 3 months predicted occupational gaps after stroke. Thus, it is possible to identify early on, and provide interventions for, those that risk participation restrictions. Not being born in the country might be an indicator of a risk for participation restrictions.

Combined life satisfaction of persons with stroke and their caregivers: associations with caregiver burden and the impact of stroke.

BACKGROUND: Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. METHODS: In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS). RESULTS: The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. CONCLUSIONS: Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings support the importance of a dyadic perspective and add to the understanding of the reciprocal influences between the caregiver and recipient. This knowledge has clinical implications and contributes to the identification of possible vulnerable dyads in need of tailored support.

Evaluation of manual wheelchairs by individuals with spinal cord injuries.

PURPOSE: The aim of this study was to investigate how adults with spinal cord injury assess their satisfaction regarding various aspects and use of their manual wheelchair. METHOD: The Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0) together with seven additional questions was sent to 205 adults with SCI. RESULTS: One hundred and twenty-four responses were available. The QUEST 2.0 showed a high level of satisfaction with manual wheelchair properties. However, the respondents were less satisfied with the services offered. Ease of use and comfort were identified as most important. Eighty-nine percent of the respondents rated their level of satisfaction as 'quite satisfied' or 'very satisfied' in ease of using a manual wheelchair compared with 68% of the respondents that were 'quite satisfied' or 'very satisfied' with the level of comfort. A greater satisfaction of ease in propulsion indoors compared with sitting comfort in various activities was found. CONCLUSIONS: A discrepancy was shown between users not being as satisfied with comfort in sitting in various activities opposed to satisfaction with propulsion. This indicates the need for increased knowledge and developments concerning individual solutions, incorporating comfort as well as ease of use of a manual wheelchair.