Sophie Sarre

A systematic review of qualitative studies on adjusting after stroke: lessons for the study of resilience

Abstract Purpose: To synthesize qualitative studies on adjusting after stroke, from stroke survivors’ and carers’ perspectives, and to outline their potential contribution to an understanding of resilience. Methods: A systematic review of qualitative studies in peer reviewed journals from 1990 to 2011 was undertaken. Findings from selected studies were summarized and synthesized and then considered alongside studies of resilience. Results: Forty studies were identified as suitable. These suggested that the impact of stroke was felt on many dimensions of experience, and that the boundaries between these were permeable. Nor was stroke as an adverse “event” temporally bounded. Adjustment was often marked by setbacks and new challenges over time. Participants identified personal characteristics as key, but also employed practical and mental strategies in their efforts to adjust. Relationships and structural factors also influenced adjustment after stroke. Conclusions: The impacts of stroke and the processes of adjusting to it unfold over time. This presents a new challenge for resilience research. Processes of adjustment, like resilience, draw on personal, inter-personal and structural resources. But the reviewed studies point to the importance of an emic perspective on adversity, social support, and what constitutes a “good” outcome when researching resilience, and to a greater focus on embodiment. Implications for Rehabilitation Stroke is a sudden onset condition which for around a third of people has long-term consequences. Stroke can cause a variety of physical and cognitive impairments, some of which may not be obvious to an outsider. As well as physical functioning, stroke can have a profound effect on survivors’ sense of self and on their relationships. Stroke survivors’ accounts suggest that relationships (including relationships with health care professionals) and structural factors (such as access to health services, employment possibilities and welfare systems) mediate efforts to adjust after stroke. While there is considerable overlap between notions of adjustment and resilience, the experiences of stroke survivors suggest further issues that need to be addressed in order to gain a more comprehensive understanding of resilience.

The ethics of socio-cultural risk research

In socio-cultural risk research, an epistemological tension often follows if real hazards in the world are juxtaposed against the essentially socially constructed nature of all risk. In this editorial, we consider how this paradox is manifest at a practical level in a number of ethical dilemmas for the risk researcher. (1) In terms of strategies for seeking informed consent, and for addressing the power inequalities involved in interpretative and analytical work, researchers can find themselves pushing at the boundaries of standard understandings of ethical practices and ways of engaging informants in their studies. (2) Impact on participants is another key area of concern, since the subject matter on which data are collected in risk research may be a source of uncertainty, anxiety or unwanted self knowledge. (3) Risk researchers also face the possibility of institutional repercussions of raising risk issues with people who usually normalize the risks, thereby stimulating distrust in the institutions or organizations with formal responsibilities for risk management. There are no simple formulae to guide the researcher in dealing with such ethical issues and paradoxes. It is important, though, to recognize their specificity in risk studies, including the ambiguous status of questions about vulnerability since judgements about ‘who is vulnerable’ and ‘in what ways’ are themselves influenced by the situational framings and understandings of participants and researchers.

Parental Regulation of Teenagers’ Time Processes and meanings

Parental regulation of teenagers’ time is pervasive. Parents attempt to constrain, well into adolescence, what their children do with their time, when they do it and how long they do it for. This article draws on interviews with 14- to 16-year-olds in the UK to explore teenagers’ experiences of parents’ temporal regulation, and whether their perceptions are affected by the processes and meanings attached to it. Where values, meanings and rationalities around temporalities are shared, regulation can be relatively unproblematic. Sometimes however, there is a clash of frames, which impacts on teenagers’ subjective experiences and can lead to strategies to escape parental regulation of time.

Dependence and independence: Perceptions and management of risk in respect of children aged 12-16 in families with working parents

The contributions that adult men and women make to households in terms of paid and unpaid work have undergone substantial change, particularly in respect of womens responsibility for income generation, and have been seen as part of the processes of individualization. Recent contributions to the literature have suggested that children are now acquiring independence earlier as part of those same processes. The paper uses qualitative methods to explore the way in which parents in two-parent families, where both are employed, perceive the risks attached to childrens exercise of greater independence, how they seek to ‘manage’ those risks and how far the perceptions of parents accord with those of children. We find parents’ perceptions of risk to be strong, but to have little to do with working patterns. In addition, they are often at odds with the actual behaviour of the child. Risks are managed by negotiation, in which children played an active part. We are also able to make some preliminary comments on the difficulties of interpreting scale measures in relation to interview evidence.

Developing a novel peer support intervention to promote resilience after stroke

Abstract Stroke can lead to physical, mental and social long‐term consequences, with the incidence of stroke increasing with age. However, there is a lack of evidence of how to improve long‐term outcomes for people with stroke. Resilience, the ability to ‘bounce back’, flourish or thrive in the face of adversity improves mental health and quality of life in older adults. However, the role of resilience in adjustment after stroke has been little investigated. The purpose of this study is to report on the development and preliminary evaluation of a novel intervention to promote resilience after stroke. We applied the first two phases of the revised UK Medical Research Council (UKMRC) framework for the development and evaluation of complex interventions: intervention development (phase 1) and feasibility testing (phase 2). Methods involved reviewing existing evidence and theory, interviews with 22 older stroke survivors and 5 carers, and focus groups and interviews with 38 professionals to investigate their understandings of resilience and its role in adjustment after stroke. We used stakeholder consultation to co‐design the intervention and returned to the literature to develop its theoretical foundations. We developed a 6‐week group‐based peer support intervention to promote resilience after stroke. Theoretical mechanisms of peer support targeted were social learning, meaning‐making, helping others and social comparison. Preliminary evaluation with 11 older stroke survivors in a local community setting found that it was feasible to deliver the intervention, and acceptable to stroke survivors, peer facilitators, and professionals in stroke care and research. This study demonstrates the application of the revised UKMRC framework to systematically develop an empirically and theoretically robust intervention to promote resilience after stroke. A future randomised feasibility study is needed to determine whether a full trial is feasible with a larger sample and wider age range of people with stroke.

Time in reconstructing the (school) child

Policies and practices around school work, operating within and beyond the family, are fundamentally rooted in and perpetuate a particular generational order. Working from a temporal perspective this article focuses on ‘school work’ in order to demonstrate how time operates across spheres as a key means of constructing generation, making not only children, but school children. Outlining UK policies on school children’s time-use, and employing findings from a study of families with teenagers, the article examines how the temporal entanglement of school work and family life contributes to the ongoing (re)construction of generation during this key period of ‘growing up’.

The volunteering activities of children aged 8 - 15

Despite policies to encourage childrens sense of citizenship and to increase young peoples participation in the voluntary sector, there has been very little research on volunteering by the under-16s, and scant attention has been paid to existing evidence. This paper uses the United Kingdom Time Use Survey, 2000 to explore the formal and informal volunteering of children aged 8 to 15: their participation rates; the time they spend volunteering; the volunteering activities they do; and the characteristics of child volunteers. It is shown that children are a core group of active volunteers who should no longer be sidelined in voluntary or fourth sector research and policy, and nor should research on children ignore volunteering as an aspect of their lives. The conceptualisation of volunteering can be enriched by a better understanding of childrens experience, and the ways in which current conceptions of volunteering may themselves obscure childrens contribution.