Exploring altered body perception and comfort after stroke: An interpretive phenomenological analysis

Background: After stroke, changes to body perception are common. However, little is known about what these disturbed perceptions feel like to the stroke survivor. This study took a phenomenological approach to explore experiences ofaltered body perception, whether these perceptions were uncomfortable, and whether participants indicated a need for clinical interventions.Method: A purposive sample of 16 stroke survivors were predominantly recruited from community support groups for stroke. All participants were at least six months post-stroke, experiencing motor and sensory impairments and able to communicate verbally. In-depth, semi-structured interviews were conducted in participants’ homes. Interviews were audio-recorded, transcribed verbatim, and analysed alongside reflexive notes using an interpretativephenomenological approach. Ethical approval was obtained from University of the West of England.Results/Findings: Four themes emerged. Participants described a body which did not exist; a body hindered by strange sensations and distorted perceptions; an uncontrollable body; and a body isolated from health professionals and clinical interventions. Participants expressed discomfort and feelings of conflict towards the body. They found their experiences difficult to understandand hard to describe.Discussion: Altered body perceptions left survivors feeling disembodied: their bodies perceived as strange, uncooperative, uncomfortable, and isolated from support. This is the first study to look at altered body perceptions in terms of patient comfort.Conclusion: These findings highlight the need for health professionals to recognize and support the communication of stroke survivors’ experiences of altered body perceptions and discomfort. Further research is needed to determine new ways to communicate about altered body perception and develop interventions to improve body comfort

Critical Thinking, Critical Theory: Cross-School First Year Module in Critical Analysis

The objective of the project was threefold. Firstly, to propose a first year module entitled “Developing Critical Skills”, to be available across Technological University Dublin (DIT), which would promote, through the analysis of cultural artefacts, the analytical and rhetorical skills of first year students across different disciplines. Secondly, to test and evaluate appropriate assessment procedures for such a module. Thirdly, to explore innovative methods of curriculum design process for interdisciplinary learning. The anticipated benefits of such a module were originally imagined to be the development of students who would possess critical competences with broad application, who would be reflective and analytical, and who would develop awareness of the public responsibilities of knowledge. Further to this, the authors hoped to encourage a greater understanding among students of the value and complexity of culture, cross-disciplinary cooperation among staff teaching the module, and to consolidate the benefits of the modular system within the DIT

The work of older people and their informal caregivers in managing an acute health event in a hospital at home or hospital inpatient setting.

BACKGROUND: There is limited understanding of the contribution made by older people and their caregivers to acute healthcare in the home and how this compares to hospital inpatient healthcare. OBJECTIVES: To explore the work of older people and caregivers at the time of an acute health event, the interface with professionals in a hospital and hospital at home (HAH) and how their experiences relate to the principles underpinning comprehensive geriatric assessment (CGA). DESIGN: A qualitative interview study within a UK multi-site participant randomised trial of geriatrician-led admission avoidance HAH, compared with hospital inpatient care. METHODS: We conducted semi-structured interviews with 34 older people (15 had received HAH and 19 hospital care) alone or alongside caregivers (29 caregivers; 12 HAH, 17 hospital care), in three sites that recruited participants to a randomised trial, during 2017-2018. We used normalisation process theory to guide our analysis and interpretation of the data. RESULTS: Patients and caregivers described efforts to understand changes in health, interpret assessments and mitigate a lack of involvement in decisions. Practical work included managing risks, mobilising resources to meet health-related needs, and integrating the acute episode into longer-term strategies. Personal, relational and environmental factors facilitated or challenged adaptive capacity and ability to manage. CONCLUSIONS: Patients and caregivers contributed to acute healthcare in both locations, often in parallel to healthcare providers. Our findings highlight an opportunity for CGA-guided services at the interface of acute and chronic condition management to facilitate personal, social and service strategies extending beyond an acute episode of healthcare

Development of an item pool for a patient reported outcome measure of resilience for people living with dementia

Abstract Background and objectives Policies to support people living with dementia increasingly focus on strengths-based approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable resilience measure for people with dementia. It develops a pool of items to inform a new measure of resilience for this population. Methods A conceptual model and associated data informed the item generation of the draft resilience measure. Regular meetings with professionals (n = 7) discussed response-scale formatting, content and face validity, leading to refinement and item reduction. Cognitive interviews with people living with dementia (n = 11) then examined the face and content validity of items and the suitability of response-scale formatting. These two phases informed subsequent revision and further item reduction of the resilience measure. Results The first item generation exercise led to 140 items. These were independently assessed by the professionals and this refinement reduced the measure to 63 items across 7 domains of the conceptual model (psychological strengths; practical approaches for adapting to life with dementia; continuing with hobbies, interests and activities; strong relationships with family and friends; peer support and education; participating in community activities; the role of professional support services). Cognitive interviews explored the 63 items with people living with dementia. Detailed feedback led to items removed due to difficulty with (a) understanding (N = 7); (b) answering (n = 11); (c) low preference for that item (n = 6); and (d) presence of a preferred item within a cluster of similar questions (n = 4). Items were amended to enhance clarity/conciseness (n = 19) leading to a final 37-item pool. Conclusion Established methods for measurement development included the expertise of people with dementia and led to the generation of a set of items for a new resilience measure that were understandable and acceptable to this target population. This 37-item pool reflects the conceptual understanding of resilience in dementia as being derived across individual, community and societal level resources

‘Somebody stuck me in a bag of sand’: Lived experiences of the altered and uncomfortable body after stroke

Objective: This study explored stroke survivors’ experiences of altered body perception, whether these perceptions cause discomfort, and the need for clinical interventions to improve comfort. Design: A qualitative phenomenological study. Setting: Participants’ homes. Participants: A purposive sample of 16 stroke survivors were recruited from community support groups. Participants (median: age 59; time post stroke >2 years), were at least six-months post-stroke, experiencing motor or sensory impairments and able to communicate verbally. Interventions: Semi-structured, face-to-face interviews were analysed using an interpretive phenomenological approach and presented thematically. Results: Four themes or experiences were identified: Participants described (1) a body that did not exist; (2) a body hindered by strange sensations and distorted perceptions; (3) an uncontrollable body; and (4) a body isolated from social and clinical support. Discomfort was apparent in a physical and psychological sense and body experiences were difficult to comprehend and communicate to healthcare staff. Participants wished for interventions to improve their comfort but were doubtful that such treatments existed. Conclusion: Indications are that altered body perceptions cause multifaceted physical and psychosocial discomfort for stroke survivors. Discussions with patients about their personal perceptions and experiences of the body may facilitate better understanding and management to improve comfort after stroke

Development of an item pool for a patient reported outcome measure of resilience for people living with dementia

BACKGROUND AND OBJECTIVES: Policies to support people living with dementia increasingly focus on strengths-based approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable resilience measure for people with dementia. It develops a pool of items to inform a new measure of resilience for this population. METHODS: A conceptual model and associated data informed the item generation of the draft resilience measure. Regular meetings with professionals (n = 7) discussed response-scale formatting, content and face validity, leading to refinement and item reduction. Cognitive interviews with people living with dementia (n = 11) then examined the face and content validity of items and the suitability of response-scale formatting. These two phases informed subsequent revision and further item reduction of the resilience measure. RESULTS: The first item generation exercise led to 140 items. These were independently assessed by the professionals and this refinement reduced the measure to 63 items across 7 domains of the conceptual model (psychological strengths; practical approaches for adapting to life with dementia; continuing with hobbies, interests and activities; strong relationships with family and friends; peer support and education; participating in community activities; the role of professional support services). Cognitive interviews explored the 63 items with people living with dementia. Detailed feedback led to items removed due to difficulty with (a) understanding (N = 7); (b) answering (n = 11); (c) low preference for that item (n = 6); and (d) presence of a preferred item within a cluster of similar questions (n = 4). Items were amended to enhance clarity/conciseness (n = 19) leading to a final 37-item pool. CONCLUSION: Established methods for measurement development included the expertise of people with dementia and led to the generation of a set of items for a new resilience measure that were understandable and acceptable to this target population. This 37-item pool reflects the conceptual understanding of resilience in dementia as being derived across individual, community and societal level resources

'I have never bounced back': resilience and living with dementia

OBJECTIVE: This work responds to the limited research about resilience when living with dementia and develops a conceptual model to inform service development and healthcare practices for this population. METHODS: An iterative process of theory building across four phases of activity (scoping review n = 9 studies), stakeholder engagement (n = 7), interviews (n = 11) generated a combined sample of 87 people living with dementia and their carers, including those affected by rare dementias to explore their lived experiences. An existing framework of resilience developed in other populations served as the starting point to analyse and synthesise the findings, inspiring a new conceptual model of resilience unique to the experience of living with dementia. RESULTS: The synthesis suggests resilience encompasses the daily struggles of living with a dementia; people are not flourishing, thriving or 'bouncing back', but are managing and adapting under pressure and stress. The conceptual model suggests resilience may be achieved through the collective and collaborative role of psychological strengths, practical approaches to adapting to life with dementia, continuing with hobbies, interests and activities, strong relationships with family and friends, peer support and education, participating in community activities and support from healthcare professionals. Most of these themes are not reflected in resilience outcome measures. CONCLUSIONS: Practitioners adopting a strengths-based approach utilising the conceptual model at the point of diagnosis and post-diagnosis support may help individuals achieve resilience through appropriately tailored services and support. This 'resilience practice' could also extend to other degenerative or debilitating chronic conditions a person faces in their life course

Dementia in rural settings: A scoping review exploring the personal experiences of people with dementia and their carers

Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities