Life interrupted and life regained? Coping with stroke at a young age

Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the strategies that they use to recover and cope. Directed content analysis was conducted from interviews with 17 community-dwelling stroke survivors aged 55 years and younger across the United Kingdom. The sample was drawn from a larger maximum variation sample of stroke survivors. Using the sociological concepts of biographical disruption and biographical repair as a guide, excerpts from the interviews pertaining to aspects of the patients’ life that were interrupted, in addition to how they coped with the changes, were selected and analysed. All individuals described an ‘‘altered sense of self,’’ a theme that included loss of identity, family disruption, and/or loss of valued activities. Individuals sought to adapt their sense of self by seeking external support, by restoring normality, and/or through positive reflection. Despite the adapted self that emerged, most individuals continued to experience impairments. While young stroke survivors adapt to their illness over time, they continue to experience impairments and disruptions in their personal and work lives.Aholistic model of rehabilitation that helps individuals regain the capacity for everyday activities related to work, family life, and leisure can begin to address the emotional ramifications of diseases such as stroke, restore wellness, and work towards minimizing the burden felt by family caregivers and children

Life interrupted and life regained? Coping with stroke at a young age

Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the strategies that they use to recover and cope. Directed content analysis was conducted from interviews with 17 community-dwelling stroke survivors aged 55 years and younger across the United Kingdom. The sample was drawn from a larger maximum variation sample of stroke survivors. Using the sociological concepts of biographical disruption and biographical repair as a guide, excerpts from the interviews pertaining to aspects of the patients’ life that were interrupted, in addition to how they coped with the changes, were selected and analysed. All individuals described an ‘‘altered sense of self,’’ a theme that included loss of identity, family disruption, and/or loss of valued activities. Individuals sought to adapt their sense of self by seeking external support, by restoring normality, and/or through positive reflection. Despite the adapted self that emerged, most individuals continued to experience impairments. While young stroke survivors adapt to their illness over time, they continue to experience impairments and disruptions in their personal and work lives.Aholistic model of rehabilitation that helps individuals regain the capacity for everyday activities related to work, family life, and leisure can begin to address the emotional ramifications of diseases such as stroke, restore wellness, and work towards minimizing the burden felt by family caregivers and children

How does it feel to be a problem? Patients' experiences of self-management support in New Zealand and Canada

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Reclaiming and redefining the Fundamentals of Care: Nursing's response to meeting patients' basic human needs

Executive Summary: A group of nurse leaders, health policy, health care researchers and clinicians attended a seminar at Green Templeton College, University of Oxford in June 2012 to debate and draw up an action plan around integrating the fundamentals of care (FOC) into the patient centred care (PCC) agenda. Participants at the seminar acknowledged that despite significant improvements in delivering more compassionate and patient-centred care, health systems continue to face challenges in meeting the basic needs of many of our most vulnerable patients due to a range of complex factors. The invitational group, over the course of two days, discussed a number of initiatives being used by health systems to improve patient care in this area. These included issues around regulation of care; preparation and training of nurses; ways that factors such as dignity, compassion and kindness can be promoted in health systems; the use of techniques such as hourly rounding, patient involvement in systems redesign and a number of other innovations required to build and redesign the health system around the patient. A framework to guide and shape the ongoing debate has emerged from the meeting. This framework, called The Fundamentals of Care (FOC) Framework comprises three core dimensions: statements about the nature of the relationship between the nurse and the patient within the care encounter; the way the nurse and the patient negotiate and integrate the actual meeting of the fundamentals of care; and the system requirements that are needed to support the forming of the relationship and the safe delivery of the fundamentals of care. The group has produced an implementation plan which is meant to stimulate discussion and debate within key stakeholder groups. These suggested actions are an attempt to turn the more abstract parts of the framework into practical actions at the level of the care encounter between any nurse and any patient in any health system where nursing takes place. There are proposed actions for clinicians and managers; the educators of nurses; and for researchers and policy makers. The framework will be further refined as part of the ongoing work of the International Learning Collaborative (ILC),one of the core groups of nurse leaders and academics who are leading this international agenda. Feedback is welcomed on this position paper.Alison Kitson, Tiffany Conroy, Kerry Kuluski, Louise Locock, Renee Lyon

The impact of mental health recovery narratives on recipients experiencing mental health problems: Qualitative analysis and change model.

BACKGROUND: Mental health recovery narratives are stories of recovery from mental health problems. Narratives may impact in helpful and harmful ways on those who receive them. The objective of this paper is to develop a change model identifying the range of possible impacts and how they occur. METHOD: Semi-structured interviews were conducted with adults with experience of mental health problems and recovery (n = 77). Participants were asked to share a mental health recovery narrative and to describe the impact of other people's recovery narratives on their own recovery. A change model was generated through iterative thematic analysis of transcripts. RESULTS: Change is initiated when a recipient develops a connection to a narrator or to the events descripted in their narrative. Change is mediated by the recipient recognising experiences shared with the narrator, noticing the achievements or difficulties of the narrator, learning how recovery happens, or experiencing emotional release. Helpful outcomes of receiving recovery narratives are connectedness, validation, hope, empowerment, appreciation, reference shift and stigma reduction. Harmful outcomes are a sense of inadequacy, disconnection, pessimism and burden. Impact is positively moderated by the perceived authenticity of the narrative, and can be reduced if the recipient is experiencing a crisis. CONCLUSIONS: Interventions that incorporate the use of recovery narratives, such as peer support, anti-stigma campaigns and bibliotherapy, can use the change model to maximise benefit and minimise harms from narratives. Interventions should incorporate a diverse range of narratives available through different mediums to enable a range of recipients to connect with and benefit from this material. Service providers using recovery narratives should preserve authenticity so as to maximise impact, for example by avoiding excessive editing

Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis

Background: Health care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models. Methods: Iterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n-13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n=11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included. Results: We included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM. Conclusions: To embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved

Perceived risk factors of health decline: a qualitative study of hospitalized patients with multimorbidity

Kerry Kuluski,1,2 C Shawn Tracy,1 Ross E Upshur1–3 1Bridgepoint Collaboratory for Research and Innovation, Bridgepoint Active Healthcare, Toronto, ON, Canada; 2Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada; 3Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada Background: Effectively preventing and managing chronic illness are key goals for health systems worldwide. A growing number of people are living longer with multiple chronic illnesses, accompanied by a high degree of treatment burden and heavy use of health care resources. People with multimorbidity typically have to manage their care needs for a number of years, and from this experience may offer valuable perspectives on factors that influenced their health outcome. Purpose: The purpose of this study was to explore factors that may serve as tipping points into poor health from the perspective of hospitalized patients with multimorbidity. Participants and methods: Patient interview data were analyzed from 43 hospitalized patients with multimorbidities who indicated that something could have been done to either avoid or slow down their health decline. The study used qualitative description as the analytic method to generate themes from a specific question collected through one-on-one interviews. Two reviewers independently analyzed and thematically coded the data and reached consensus on the final themes after a series of meetings. Results: According to patient accounts, factors at the personal level (eg, personal behaviors), provider level (eg, late diagnoses), and health care system level (eg, poor care transitions) contributed to their health decline. Conclusion: This paper focuses on prevention in the context of multimorbidity. While some respondents indicated personal behaviors that impacted health, many pointed to factors outside themselves (providers and the broader health system). The orientation of health care systems, historically designed to support acute and episodic care and not multimorbidity, places patients, at least in some cases, at additional risk of decline. The patient accounts suggest that the notion of prevention should evolve throughout the course of illness. A successful health system would embrace this notion and see the goal as forestalling not only mortality (as achieved for the most part in high socioeconomic nations) but morbidity as well. High rates of multimorbidity and health system challenges suggest that we have not yet achieved this latter aim. Keywords: Canada, chronic illness, multimorbidity, determinants of health, health service settings, patient

The role of caregivers in interfacility care transitions: a qualitative study

Lianne Jeffs,1 Marianne Saragosa,1 Madelyn P Law,2 Kerry Kuluski,3 Sherry Espin,4 Jane Merkley5 1Keenan Research Centre of the Li Ka Shing Knowledge Institute, St Michael’s Hospital, Toronto, 2Department of Health Science, Brock University, St Catharines, 3Lunenfeld-Tanenbaum Research Institute, Sinai Health System, 4Daphne Cockwell School of Nursing, Ryerson University, 5Executive Offices, Sinai Health System, Toronto, ON, Canada Abstract: A qualitative design was used to explore the nature of caregiver involvement in care transitions of patients being transferred from an acute care hospital to a rehabilitation hospital. Participants included older adults (n=13), informal caregivers (n=9), and health care professionals (n=50) from inpatient orthopedic units in two academic health science centers and one orthopedic inpatient rehabilitation unit. Semistructured interviews were conducted, audiotaped, and transcribed. Directed content analysis revealed the following four themes: watching, being an active care provider, advocating, and navigating the health care system. Participants described being actively involved in the care of their family member, yet they were not actively engaged by health care professionals to be involved in the care of their family member. There is a need to reconcile the tension between the level of involvement of caregivers in the care of family members who are patients and the level of engagement throughout the care transition. By providing relevant information and authentically engaging caregivers as equal partners in the care transition, they are better able to navigate the health care system post-transfer to the rehabilitation setting and discharge to home. Keywords: caregiver, care transitions, elderly, qualitative&nbsp