Participation in everyday occupations and life satisfaction in the stroke-caregiver dyad

In order to develop knowledge that can be used within rehabilitation after stroke, the general aim was to explore participation in everyday occupations and the relation to life satisfaction in persons with stroke and within the caregiver dyad. Furthermore, the aim was to understand and describe the lived experience of persons enacting agency in everyday occupations during the first year after stroke. The aim of study I was to understand the lived experience of enacting agency (i.e. making things happen by ones’ actions in everyday life) and to describe the phenomenon of agency during the year after stroke. This was done with a phenomenological approach. Studies I and II had a prospective, longitudinal design and the aim of study II was to explore the extent of and the factors associated with restrictions in participation in everyday occupations i.e. occupational gaps, 12 months after stroke and to identify factors at 3 months that predicted occupational gaps 12 months after stroke. Studies III-IV used a cross-sectional design and study III described the combined life satisfaction of the stroke-caregiver dyad and investigated the association of the combined life satisfaction with the perceived impact of the stroke and the caregivers’ caregiver burden one year after stroke. The aim of study IV was to explore and describe persons’ with stroke and their caregivers’ restrictions in participation in everyday occupations three months after study inclusion and to depict this in relation to their life satisfaction, the dyads combined life satisfaction, caregiver burden, perceived impact of stroke and ADL ability. The findings in study I showed that persons after a stroke experienced the process of enacting agency as complex negotiations of varied and changing aspects in different situations. The four characteristics that described how the participants enacted agency concerned how they managed their perturbed bodies, took into account the past and envisioned the future, dealt with the world outside themselves, and negotiated through internal dialogues. Restrictions in participation i.e. occupational gaps, were perceived by 83% of persons with stroke and almost half of the caregivers, three months after study inclusion (study IV), and 45% of the persons with stroke, one year after the incident (study II). Three months after stroke, ADL ability, social participation and not being born in Sweden predicted occupational gaps at 12 months (study II). Occupational gaps were associated with life satisfaction one year after stroke (study II) but there was a low correlation between the number of occupational gaps for the persons with stroke and their life satisfaction, 3 months after study inclusion. This also regarded the caregivers (study IV). Almost two-thirds of the stroke-caregiver dyads gave congruent responses regarding their global life satisfaction. Dyads, where both persons had a low life satisfaction; 26% and 38%, respectively (studies III-IV), experienced caregiver burden, stroke impact, and occupational gaps to a greater extent, compared with those dyads where both persons were satisfied (study III-IV). Persons use complex negotiations to participate in everyday occupations after stroke and may need client-centered support. Their process of enacting agency challenges existing definitions of agency. Also, determining predictors of occupational gaps may facilitate identification of persons risking participation restrictions. A dyadic perspective regarding life satisfaction and life after stroke can provide information about potential vulnerable persons or dyads. This knowledge can be used clinically to prevent restrictions in participation in everyday occupations for both individuals and dyads affected by stroke

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

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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).</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>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.</p

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 peopl