"I'm still me - I'm still here!" Understanding the person's sense of self in the provision of self-management support for people with progressive neurological long-term conditions.

PURPOSE: There is increasing interest in tailoring self-management support, but little detail is available on the relevance and impact of such approaches for people with progressive neurological conditions. The aim of this study was to draw on individuals' experiences to inform the practice of self-management support for these groups. METHOD: Community rehabilitation service users were purposively recruited and took part in in-depth qualitative interviews. Interviews were audio-recorded and transcribed. Data analysis was iterative and interpretative, taking a phenomenological approach. Strategies to enhance rigor were auditability, peer review, and researcher reflexivity. RESULTS: The sample consisted of 10 adults (age 20-79 years) who were living with a range of progressive neurological conditions. Individuals demonstrated resourcefulness in developing practice-based self-management strategies. Beyond practical strategies, interviewees' experiences were signified by reflecting on and upholding a sense of identity and a desire for purpose against the background of losses and gains over time. Linking with this overarching theme of "Sense of self" were aspects of "My body and mind", "Time", "Space", "Relationships", and "What I do". CONCLUSIONS: Self-management approaches for individuals with progressive neurological conditions will benefit from incorporating ways of recognizing, articulating, and supporting the person's sense of identity and purpose. Implications for rehabilitation Self-management approaches for people with progressive neurological conditions need to take account of individuals' wishes to contribute, connect with others, and be valued as a person. Person-centred self-management support can be realized through a broader approach than solely managing disease progression. The experiences and words of people with progressive neurological conditions can be used to inform meaningful evaluation of self-management support to drive service delivery by measuring what really matters. Rehabilitation practitioners need to adapt their conceptualisations of goal setting to account for how people with progressive neurological conditions themselves interpret "progress" and "improvement". Person-centred conversation that values who the person is can be an effective starting point for self-management interventions in people with progressive neurological conditions

Managing the severely impaired arm after stroke: a mixed-methods study with qualitative emphasis.

Purpose: There is a paucity of research into self-management strategies employed by stroke survivors outside of formal rehabilitation. This study aimed to explore stroke survivors' experiences of, and strategies for self-managing their severely impaired upper limb.Materials and methods: English-speaking stroke survivors whose upper limb had been non-functional at 3 months post-stroke took part in interviews (n = 16), a focus group (n = 6) and a survey (n = 20). Quantitative data were analysed descriptively. Qualitative data were analysed through thematic framework analysis using NVivo© software.Results: Participants' median (range) age group was 50-59 years (30-39, 70+). Median (range) time post-stroke was 39 months (4 months, 46 years). The overarching theme across the data was "choosing and expanding." Participants enacted professionally driven management strategies for their affected arm, and then chose to continue with what worked for them. Strategies were expanded through self-discovery and interaction with peers. There were sadness and frustration at the loss of arm function, but also satisfaction and self-confidence when progress was being made. Participants described an attitude of not giving up and remaining hopeful.Conclusions: These findings extend our understanding about how individuals manage their severely impaired upper limb and can be used to inform a novel stroke self-management intervention.Implications for rehabilitationStroke survivors' experiences of managing the severely affected upper limb may inform rehabilitation practice to foster self-management.Rehabilitation professionals may actively support stroke survivors in choosing from, and expanding on professionals' advice and guidance.Maintaining a positive and hopeful outlook is important to many stroke survivors. Professionals should be mindful of the potential impact of their interactions and negative predictions.Stroke survivors' experiences of managing the severely affected upper limb may inform the development of a novel tailored self-management intervention

The problem with self-management: Problematising self-management and power using a Foucauldian lens in the context of stroke care and rehabilitation.

Self-management is a concept which is now firmly established in Western healthcare policy and practice. However, the term remains somewhat ambiguous, multi-faceted and contentious. This is evident in stroke care and rehabilitation, in which a self-management approach is increasingly adopted and advocated, yet interpreted in different ways, resulting in contradictions and tensions around control, responsibility, power and discipline. This paper aims to further our understanding of tensions and contradictions in stroke self-management, by critically examining contemporary self-management practices. We use a Foucauldian theoretical lens to explore the various power dynamics in the operationalisation of self-management, in addition to the complexity of the term self-management itself. Conducting a secondary analysis of interview and focus group data from the Self-Management VOICED study, supplemented with analysis of relevant documentary evidence from policy and practice, we describe the multiple aspects of power in operation. These include rhetorical, hierarchical, personal and mutual forms of power, representing interweaving dynamics evident in the data. These aspects of power demonstrate underlying agendas and tacit and explicit understandings of self-management which exist in clinical practice. These aspects of power also give insight into the multiple identities of 'self-management', acting as a simultaneous repressor and liberator, directly in keeping with Foucauldian thinking. The findings are also consistent with Foucault's notions of bodily docility, discussions around governance and biopower, and contemporary discipline. Our analysis positions self-management as a highly nuanced and complex concept, which can fluctuate in its conceptualisation depending on the structures, routines, and the individual. We encourage healthcare professionals, policymakers and commissioners in the field of self-management to reflect on these complexities, to make transparent their assumptions and to explicitly position their own practice accordingly

Doing nothing? An ethnography of patients' (In)activity on an acute stroke unit.

Health research has begun to pay increasing attention to inactivity in its broadest sense as lack of meaningful activity and boredom. Few studies however have taken a critical look at this phenomenon. We explore (in)activity drawing on ethnographic data from observations in an acute stroke unit and post-discharge interviews with stroke survivors and their families. Four themes emerged that explain patients' (in)activity: (i) planned activities; (ii) 'doing nothing', (iii) the material environment of the unit; (iv) interactions with staff. Considering these themes, we seek to problematise received conceptual and methodological approaches to understanding (in)activity. We argue that (in)activity is best conceived not as lack of action or meaning, but as a situated practice encompassing both bodily and mental activities that reflect and reproduce the way in which life is collectively organised within a specific healthcare setting

Confidence and willingness among laypersons in the UK to act in a head injury situation: a qualitative focus group study.

OBJECTIVES: To explore factors influencing confidence and willingness among laypersons in the UK to act in a head injury situation, in order to inform first aid education offered by the British Red Cross. DESIGN: Qualitative focus group study. SETTING: South East England. PARTICIPANTS: Forty-four laypersons (37 women, 7 men) were purposively recruited from the general public using snowball sampling, into one focus group each for six population groups: parents of young children (n=8), informal carers of older adults (n=7), school staff (n=7), sports coaches (n=2), young adults (n=9) and 'other' adults (n=11). The median (range) age group across the sample was 25-34 years (18-24, 84-95). Participants were from Asian (n=6), Black (n=6), Mixed (n=2) and White (n=30) ethnic backgrounds. RESULTS: The majority of participants described being confident and willing to act in a head injury scenario if that meant calling for assistance, but did not feel sufficiently confident or knowledgeable to assist or make decisions in a more involved way. Individuals' confidence and willingness presented as fluid and dependent on an interplay of situational and contextual considerations, which strongly impacted decision-making: prior knowledge and experience, characteristics of the injured person, un/observed head injury, and location and environment. These considerations may be framed as enablers or barriers to helping behaviour, impacting decision-making to the same extent as-or even more so than-the clinical signs and symptoms of head injury. An individual conceptual model is proposed to illustrate inter-relationships between these factors. CONCLUSIONS: Our findings show that confidence and willingness to act in a head injury scenario are dependent on several contextual and situational factors. It is important to address such factors, in addition to knowledge of clinical signs and symptoms, in first aid education and training to improve confidence and willingness to act

Configurations and outcomes of acute hospital care for frail and older patients with moderate to major trauma: a systematic review.

OBJECTIVE: To systematically review research on acute hospital care for frail or older adults experiencing moderate to major trauma. SETTING: Electronic databases (Medline, Embase, ASSIA, CINAHL Plus, SCOPUS, PsycINFO, EconLit, The Cochrane Library) were searched using index and key words, and reference lists and related articles hand-searched. INCLUDED ARTICLES: Peer-reviewed articles of any study design, published in English, 1999-2020 inclusive, referring to models of care for frail and/or older people in the acute hospital phase of care following traumatic injury defined as either moderate or major (mean or median Injury Severity Score ≥9). Excluded articles reported no empirical findings, were abstracts or literature reviews, or referred to frailty screening alone. METHODS: Screening abstracts and full text, and completing data extractions and quality assessments using QualSyst was a blinded parallel process. A narrative synthesis, grouped by intervention type, was undertaken. OUTCOME MEASURES: Any outcomes reported for patients, staff or care system. RESULTS: 17 603 references were identified and 518 read in full; 22 were included-frailty and major trauma (n=0), frailty and moderate trauma (n=1), older people and major trauma (n=8), moderate or major trauma (n=7) 0r moderate trauma (n=6) . Studies were observational, heterogeneous in intervention and with variable methodological quality.Specific attention given to the care of older and/or frail people with moderate to major trauma in the North American context resulted in improvements to in-hospital processes and clinical outcomes, but highlights a relative paucity of evidence, particularly in relation to the first 48 hours post-injury. CONCLUSIONS: This systematic review supports the need for, and further research into an intervention to address the care of frail and/or older patients with major trauma, and for the careful definition of age and frailty in relation to moderate or major trauma. INTERNATIONAL PROSPECTIVE REGISTER OF SYSTEMATIC REVIEWS PROSPERO: CRD42016032895

"I'm still me - I'm still here!" Understanding the person's sense of self in the provision of self-management support for people with progressive neurological long-term conditions

Purpose: There is increasing interest in tailoring self-management support, but little detail is available on the relevance and impact of such approaches for people with progressive neurological conditions. The aim of this study was to draw on individuals' experiences to inform the practice of self-management support for these groups. Method: Community rehabilitation service users were purposively recruited and took part in in-depth qualitative interviews. Interviews were audio-recorded and transcribed. Data analysis was iterative and interpretative, taking a phenomenological approach. Strategies to enhance rigor were auditability, peer review, and researcher reflexivity. Results: The sample consisted of 10 adults (age 20-79 years) who were living with a range of progressive neurological conditions. Individuals demonstrated resourcefulness in developing practice-based self-management strategies. Beyond practical strategies, interviewees' experiences were signified by reflecting on and upholding a sense of identity and a desire for purpose against the background of losses and gains over time. Linking with this overarching theme of 'Sense of self' were aspects of 'My body and mind', 'Time', 'Space', 'Relationships', and 'What I do'. Conclusions: Self-management approaches for individuals with progressive neurological conditions will benefit from incorporating ways of recognizing, articulating, and supporting the person's sense of identity and purpose. Implications for rehabilitation: Self-management approaches for people with progressive neurological conditions need to take account of individuals' wishes to contribute, connect with others, and be valued as a person. Person-centred self-management support can be realized through a broader approach than solely managing disease progression. The experiences and words of people with progressive neurological conditions can be used to inform meaningful evaluation of self-management support to drive service delivery by measuring what really matters. Rehabilitation practitioners need to adapt their conceptualisations of goal setting to account for how people with progressive neurological conditions themselves interpret 'progress' and 'improvement'. Person-centred conversation that values who the person is can be an effective starting point for self-management interventions in people with progressive neurological conditions