Euan Sadler

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.

Identifying the long-term needs of stroke survivors using the International Classification of Functioning, Disability and Health

Objectives: To investigate how contextual factors, as described by the World Health Organisation’s International Classification of Functioning, Disability and Health (ICF), impact on stroke survivors’ functioning and how needs are perceived in the long term after stroke. Methods: Semi-structured interviews were conducted with 35 participants between 1 and 11 years after stroke. Data were analysed thematically using the ICF conceptual framework. Results: Long-term needs related to activities of daily living, social participation, mobility aids, home adaptations, housing, financial support, rehabilitation, information and transport. Participants identified a range of ICF environmental and personal factors including ‘support and relationships,’ ‘products and technology,’ ‘services, systems and policies,’ ‘attitudes,’ life experiences, social position and personal attitudes. Interactions between these contextual factors shaped functioning and how long-term needs were perceived. Social support from family and friends was a key facilitator of functioning for most participants, buffering the impact of disabilities and mediating perceived needs. Needs were not always stroke specific as many participants experienced other health problems. Discussion: The ICF framework was useful to investigate how contextual factors shaped functioning and mediated perceived long-term needs. Development of services to meet long-term needs among stroke survivors should consider the range of environmental and personal factors affecting how needs are perceived.

EXPLORING THE LINKS BETWEEN SPIRITUALITY AND ‘SUCCESSFUL AGEING’

In this paper we examine the relationship between ‘successful ageing’ and spirituality. Whilst the former has received considerable attention both as a state and as a process, the latter has been virtually ignored as a source of well‐being in later life. Here we critically examine the relationship between these two concepts, based on a review of the literature, and draw conclusions for policy and practice.

Lay and health care professional understandings of self-management: A systematic review and narrative synthesis:

Objectives: Self-management is widely promoted but evidence of effectiveness is limited. Policy encourages health care professionals to support people with long-term conditions to learn self-management skills, yet little is known about the extent to which both parties share a common understanding of self-management. Thus, we compared health care professional and lay understandings of self-management of long-term conditions. Methods: Systematic review and narrative synthesis of qualitative studies identified from relevant electronic databases, hand-searching of references lists, citation tracking and recommendations by experts. Results: In total, 55 studies were included and quality was assessed using a brief quality assessment tool. Three conceptual themes, each with two subthemes were generated: traditional and shifting models of the professional–patient relationship (self-management as a tool to promote compliance; different expectations of responsibility); quality of relationship between health care professional and lay person (self-management as a collaborative partnership; self-management as tailored support) and putting self-management into everyday practice (the lived experience of self-management; self-management as a social practice). Conclusion: Self-management was conceptualised by health care professionals as incorporating both a biomedical model of compliance and individual responsibility. Lay people understood self-management in wider terms, reflecting biomedical, psychological and social domains and different expectations of responsibility. In different ways, both deviated from the dominant model of self-management underpinned by the concept of self-efficacy. Different understandings help to explain how self-management is practised and may help to account for limited evidence of effectiveness of self-management interventions.

Implementing a training intervention to support caregivers after stroke: a process evaluation examining the initiation and embedding of programme change

BackgroundMedical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings.ResultsContextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified.ConclusionsWhere implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory’s constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions.

Introducing structured caregiver training in stroke care: findings from the TRACS process evaluation study

Objective To evaluate the process of implementation of the modified London Stroke Carers Training Course (LSCTC) in the Training Caregivers After Stroke (TRACS) cluster randomised trial and contribute to the interpretation of the TRACS trial results. The LSCTC was a structured competency-based training programme designed to help develop the knowledge and skills (eg, patient handling or transfer skills) essential for the day-to-day management of disabled survivors of stroke. The LSCTC comprised 14 components, 6 were mandatory (and delivered to all) and 8 non-mandatory, to be delivered based on individual assessment of caregiver need. Design Process evaluation using non-participant observation, documentary analysis and semistructured interviews. Participants Patients with stroke (n=38), caregivers (n=38), stroke unit staff (n=53). Settings 10 of the 36 stroke units participating in the TRACS trial in four English regions (Yorkshire, North West, South East and South West, Peninsula). Results Preparatory cascade training on delivery of the LSCTC did not reach all staff and did not lead to multidisciplinary team (MDT) wide understanding of, engagement with or commitment to the LSCTC. Although senior therapists in most intervention units observed developed ownership of the LSCTC, MDT working led to separation rather than integration of delivery of LSCTC elements. Organisational features of stroke units and professionals’ patient-focused practices limited the involvement of caregivers. Caregivers were often invited to observe therapy or care being provided by professionals but had few opportunities to make sense of, or to develop knowledge and stroke-specific skills provided by the LSCTC. Where provided, caregiver training came very late in the inpatient stay. Assessment and development of caregiver competence was not commonly observed. Conclusions Contextual factors including service improvement pressures and staff perceptions of the necessity for and work required in caregiver training impacted negatively on implementation of the caregiver training intervention. Structured caregiver training programmes such as the LSCTC are unlikely to be practical in settings with short inpatient stays. Stroke units where early supported discharge is in place potentially offer a more effective vehicle for introducing competency based caregiver training. LINKED TRACS Cluster randomised controlled trial number ISRCTN49208824.

Optimising Translational Research Opportunities: A Systematic Review and Narrative Synthesis of Basic and Clinician Scientists' Perspectives of Factors Which Enable or Hinder Translational Research

Introduction Translational research is central to international health policy, research and funding initiatives. Despite increasing use of the term, the translation of basic science discoveries into clinical practice is not straightforward. This systematic search and narrative synthesis aimed to examine factors enabling or hindering translational research from the perspective of basic and clinician scientists, a key stakeholder group in translational research, and to draw policy-relevant implications for organisations seeking to optimise translational research opportunities. Methods and Results We searched SCOPUS and Web of Science from inception until April 2015 for papers reporting scientists’ views of the factors they perceive as enabling or hindering the conduct of translational research. We screened 8,295 papers from electronic database searches and 20 papers from hand searches and citation tracking, identifying 26 studies of qualitative, quantitative or mixed method designs. We used a narrative synthesis approach and identified the following themes: 1) differing concepts of translational research 2) research processes as a barrier to translational research; 3) perceived cultural divide between research and clinical care; 4) interdisciplinary collaboration as enabling translation research, but dependent on the quality of prior and current social relationships; 5) translational research as entrepreneurial science. Across all five themes, factors enabling or hindering translational research were largely shaped by wider social, organisational, and structural factors. Conclusion To optimise translational research, policy could consider refining translational research models to better reflect scientists’ experiences, fostering greater collaboration and buy in from all types of scientists. Organisations could foster cultural change, ensuring that organisational practices and systems keep pace with the change in knowledge production brought about by the translational research agenda.

Navigating stroke care: the experiences of younger stroke survivors

Abstract Purpose: Although stroke is associated with ageing, a significant proportion of strokes occur in younger people. Younger stroke survivors have experienced care available as inappropriate to their needs. However, insufficient attention has been paid to how the social context shapes their experiences of care. We investigated this question with younger stroke survivors in Greater London, UK. Method: We conducted in-depth interviews with individuals aged between 24 and 62 years. Interviews were analysed thematically, with interpretation informed by Bourdieu’s concepts of field, capital and habitus. Results: In the acute care setting it was implicit for participants that expertise and guidance was to be prioritised and largely this was reported as what was received. Individuals’ cultural capital shaped expectations to access information, but health care professionals’ symbolic capital meant they controlled its provision. After discharge, professional guidance was still looked for, but many felt it was limited or unavailable. It was here that participants’ social, cultural and economic capital became more important in experiences of care. Conclusions: The field of stroke shaped younger stroke survivors’ experiences of care. Navigating stroke care was contingent on accessing different forms of capital. Differences in access to these resources influenced longer term adjustment after stroke. Implications for Rehabilitation Stroke care can be conceptualised as a temporal field of social activity and relationships which shapes variations in experiences of care among younger stroke survivors, and differences in expectations of support at different time points after stroke. On entering the field of stroke participants reported needing health care professional guidance and expertise to manage the acute event, yet difficulties accessing information in hospital limited the agency of some individuals wanting to take an active role in their recovery. After discharge from hospital variations in experiences of care among participants were more evident, with a number still seeking professional guidance, and requiring the capital and agency to navigate the field of stroke. Despite international efforts to improve the quality of acute care, effective models of community stroke care still need to be developed.

Cosmic transcendence, loneliness, and exchange of emotional support with adult children: a study among older parents in The Netherlands

Gerotranscendence defines a shift in meta-perspective from earlier materialistic and pragmatic concerns, toward more cosmic and transcendent ones in later life. Population-based studies that have empirically examined this concept using Tornstam’s gerotranscendence scale, highlight cosmic transcendence as a core component, which includes a sense of belongingness with past and future generations. Such generative concerns may increase expectations regarding the quality of the bond with one’s children in later life. This study examined whether the association between emotional support exchanged with children and feelings of loneliness later in life varied by the degree of cosmic transcendence of the older parent. Data from 1,845 older parents participating in a population-based study living in The Netherlands were analyzed from the 1995/1996 cycle of the Longitudinal Aging Study Amsterdam. Interviews included self-report measures of cosmic transcendence, loneliness, emotional support exchanged with children, health indicators, and marital status. Results indicated that a negative association between loneliness and level of emotional support exchanged with children was more pronounced among older parents with higher cosmic transcendence scores, in particular among the married. It is argued that cosmic transcendence reflects a sense of generativity and an increased emotional dependency on children in later life. Under favorable social conditions (supportive relationships with children and being married) cosmic transcendent views had a positive impact on social well-being in later life. When children no longer met emotional needs of older parents, cosmic transcendence increased feelings of loneliness.

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.