Managing uncertainty in life after stroke: A qualitative study of the experiences of established and new informal carers in the first 3 months after discharge

St George's University of London and Kingston University, London SW17 0RE, United Kingdom.
International journal of nursing studies (Impact Factor: 2.9). 04/2009; 46(8):1122-33. DOI: 10.1016/j.ijnurstu.2009.02.011
Source: PubMed


Caring for stroke survivors at home can have an enormous impact on informal carers and past research has tended to focus on the negative emotional consequences of caring, with few identifying any positive outcomes. Despite an awareness that the experiences of these carers change over time, there is a dearth of qualitative studies investigating carers' experiences over time.
To investigate the experiences of informal carers of stroke survivors over time.
Qualitative study.
Carers of stroke survivors from one acute and two rehabilitation units in South-West London.
A purposive sample of 31 informal carers of stroke survivors discharged from inpatient treatment and rehabilitation returning home were interviewed. The majority of participants' were spouses but they also included adult sons and daughters. Most participants were post-retirement age.
Audio-taped in-depth interviews of 30-90 min duration were undertaken at three time points-close to discharge, 1 month and 3 months post-discharge. Interviews were transcribed immediately after each interview. Analysis was an ongoing process starting during data collection and ending with themes. As themes emerged they were identified and discussed with other members of the team so that any patterns across the interviews were noted. Themes were followed up at subsequent interviews. This process enabled progressive focusing of ideas and also validated respondents' accounts.
There were a total of 81 interviews and these carers were similar demographically to other carers in stroke research. A central theme of uncertainty with a number of other interconnected themes were identified. Other themes including adopting routines and strategies, absolute and relative positives and questioning the future could be seen to both influence and be influenced by uncertainty. These themes can all be related to the changes in carers' lives or the management of uncertainty around stroke. Differences in experiences and coping strategies were identified between new carers and those with prior caring experience.
Carers experience considerable uncertainty when caring for stroke survivors. Living with uncertainty is central to these carers' experiences and this should be acknowledged by clinicians when supporting stroke survivors and carers. Encouraging the identification of the positive aspects of caring may help carers manage the challenges and uncertainties created by stroke.

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    • "In a long-term journey of rehabilitation, stroke survivors and caregivers' care needs are personalized and influenced by different stages of recovery, pre-existing health conditions , their goals and expectations of rehabilitation (Greenwood et al. 2009a, Reed et al. 2012). However, the current healthcare system is lacking client-centredness and coordination although numerous rehabilitation programmes and care services to enable the rehabilitation are available in many developed countries (Greenwood et al. 2009b, Egan et al. 2010, O'Brien et al. 2014). This indicates that firsttime stroke survivors and caregivers, who just experienced a major life-changing event and have limited health literacy, are likely to face enormous challenges in stroke rehabilita- tion. "
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    ABSTRACT: AimTo explore community-dwelling first-time stroke survivors and family caregivers’ perceptions of being engaged in stroke rehabilitation.Background Stroke is recognized as a worldwide common healthcare problem and the leading cause of adult disability. An holistic approach to rehabilitation can only be achieved by engaging stroke survivors and caregivers in all stages of recovery and by providing ongoing coordinated rehabilitation programmes.DesignAn interpretive study design was applied to the study.Method In-depth semi-structured interviews with 22 community-dwelling first-time stroke survivors and caregivers were conducted in 2013. The interviews were audiotaped, transcribed and analysed using a thematic analysis.FindingsFour major themes were identified. First, participants demonstrated low health literacy in stroke and their needs to learn about the disease and rehabilitation were usually ignored in busy clinical settings prior to discharge from hospital. Second, there was a lack of communication and continuity of treatment when the stroke survivors were transferred from one institution to another. Third, challenged with fragmented post-discharge rehabilitation services, the participants perceived that nurse-led coordination of rehabilitation was desirable. Fourth, participants perceived ongoing changing of rehabilitation goals in different stages of recovery. They expected to be engaged in ongoing rehabilitation planning and programmes.Conclusion The findings of this study challenge service providers to realize a true partnership with stroke survivors and caregivers by working with them as one team that is led by nurses. Making the necessary changes requires mutual effort at both the systemic and individual levels with rehabilitation nurse-led coordination of rehabilitation programmes.
    Full-text · Article · Sep 2015 · Journal of Advanced Nursing
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    • "Our reports, and those of others, have additionally shown the importance of coping abilities for dealing with caregiving demands [22] [23]. Qualitative studies have shown that a carer's experience may change over time, along with skills development, the establishment of new routines, incorporating care responsibilities into daily life and developing coping strategies [19] [24]. Therefore, one can posit that the burden may lessen with the passing of time. "
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    ABSTRACT: To assess the prevalence of considerable burden among caregivers of stroke survivors at 6 months (Time 1) and 5 years after stroke (Time 2), to analyse changes in burden severity over time and to identify factors associated with the burden. Eighty eight patient/caregiver pairs were assessed. Caregiver burden was measured with the Caregiver Burden Scale. Socio-demographic, stroke-related and psychological characteristics were analysed as potential determinants of the burden. Exact multiple logistic regression was used to identify the predictive factors. Considerable burden was reported by 44% of the caregivers at Time 1 and 30% at Time 2. The burden was independently associated with caregivers' sense of coherence and amount of time spent caregiving at Time 1, and with caregivers' anxiety at Time 2. A significant proportion of the caregivers experienced considerable burden in the post-acute and chronic phases of stroke, although this proportion declined over time. Several characteristics were associated with the increased burden at different time points. All the independent predictors related to aspects of the carers. Programmes including education about coping strategies and time management, as well as respite care provision, could be beneficial and might help to reduce the burden of caregiving. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.
    Full-text · Article · Apr 2015 · Patient Education and Counseling
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    • "In chronic illness care, uncertainty pervaded the entire experience. Although it varied over time, uncertainty (and possibly suffering) might never completely go away (Brown & Powell-Cope, 1991;Greenwood et al., 2009;Harrow et al., 2008;Murray et al., 2010;Navab et al., 2012;Valimaki et al., 2012). "
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    ABSTRACT: Family caregiving is a significant rite of passage experienced by family caregivers of individuals with protracted illness or injury. In an integrative review of 26 studies, we characterized family caregiving from the sociocultural perspective of liminality and explored associated psychosocial implications. Analysis of published evidence on this dynamic and formative transition produced a range of themes. While role ambiguity resolved for most, for others, uncertainty and suffering continued. The process of becoming a caregiver was transformative and can be viewed as a rebirth that is largely socially and culturally driven. The transition to family caregiving model produced by this review provides a holistic perspective on this phenomenon and draws attention to aspects of the experience previously underappreciated. Published 2014. This article is a U.S. Government work and is in the public domain in the USA.
    Full-text · Article · Oct 2014 · Research in Nursing & Health
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