Towards person-centred rehabilitation in dementia – a narrative synthesis

Thuesen, Jette; Ravn, Maiken Bay; Petersen, Kristian Kjær

doi:10.1080/09638288.2019.1709910

Cited by 7 publications

(9 citation statements)

References 48 publications

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“…Rehabilitation in connection with dementia has been defined as a genuinely person-centred approach ( Clare, 2017 ; Thuesen et al, 2020 ). This includes an individualized, goal-oriented approach that entails working with people to achieve the goals that are important to them ( Clare et al, 2010 ; Thivierge et al., 2014 ; Thuesen et al, 2020 ), and collaboratively developing positive prospects, goals and plans for the future ( Brueggen et al, 2017 ; Thuesen et al, 2020 ). Rehabilitation goals have been defined as “a future state that is desired and/or expected” ( Levack et al, 2015 , p. 9) and rehabilitation may thus be considered a future-oriented practice.…”

Section: Introductionmentioning

confidence: 99%

Ageing, dementia and the future – ambivalent futurework in rehabilitation-focused dementia care

Thuesen

Graff

2022

Dementia

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Due to its goal-orientation, rehabilitation may be considered a future-oriented practice. As rehabilitation is increasingly recognized as contributing to dementia care it is important to explore how rehabilitation corresponds with the future orientation of older people with dementia. The aim of this study was to explore the futurework of home-dwelling people with mild to moderate dementia in the context of rehabilitation-focused municipal dementia care, that is, their thinking and practices regarding their future and how these correspond with institutionalized practices. The study was conducted as a case-study inspired by the methodology of Institutional Ethnography (IE). The study setting was two Danish municipalities sampled as a paradigmatic case. Eight older people living with early-stage dementia (mean age: 78 years, age range: 65–91) were strategically sampled and each interviewed recurringly within a period of six through 15 months. In total, 29 interviews were completed. An abductive analysis was subsequently conducted based on these interviews. Findings included three dimensions of futurework: Extending the present state into the near future; avoiding being confronted with an anticipated future; and adjusting to decline and preparing for future losses. Based on these findings, a notion of ‘ambivalent futurework’ is suggested. The futurework of older people did not always correspond with the institutional arrangements in a rehabilitation-focused dementia care. Findings show that the institutional arrangements in dementia care may support as well as challenge the futurework of the participants. Paying attention to the ambivalences of older people living with dementia and recognizing the ambivalent futurework may be essential in rehabilitation-focused dementia care.

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Section: Introductionmentioning

confidence: 99%

Ageing, dementia and the future – ambivalent futurework in rehabilitation-focused dementia care

Thuesen

Graff

2022

Dementia

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“…According to Leplege et al, person-centeredness in rehabilitation has various historical origins and this implies diverse understandings ( 1 ). Person-centeredness in rehabilitation may imply paying specific attention to the person's subjective experiences, emotions and personal history ( 1 , 7 , 8 ), and may entail involving the person and families in goal setting and decision-making, individualizing and tailoring interventions to respond to the individual's needs, and viewing the person as an expert regarding their own needs ( 1 ). Person-centered rehabilitation has also been associated with empowerment and autonomy and with the recognition of careers and family members as crucial actors in rehabilitation ( 5 ).…”

Section: Introductionmentioning

confidence: 99%

Goals and Action Plans Across Time and Place—A Qualitative Study Exploring the Importance of “Context” in Person-Centered Rehabilitation

Eggen

Thuesen²

2022

Front. Rehabilit. Sci.

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BackgroundPerson-centeredness is increasingly addressed in relation to rehabilitation interventions. Collaborative goal setting and action plans are key measures in person-centered rehabilitation. There is a lack of knowledge about how person-centered goals and action plans developed away from the patient's everyday life are experienced by patients after discharge.PurposeThis aim of the study is to explore how patients with rheumatic diseases experience the relevance of goals and action plans after discharge from inpatient rehabilitation hospital stay.MethodsIndividual narrative interviews were conducted with eight patients with rheumatic diseases, aged between 40 and 60. A convenience sampling strategy was applied. Data collection, analysis and interpretation of data were performed within a phenomenological-hermeneutic framework inspired by Paul Ricoeur's interpretative philosophy.ResultsThe analysis derived one core theme, “The relevance of goals and action plans is contextual” and three subthemes: “Admission—a protected bubble,” “Back home—a harsh reality,” and “Need for post-discharge support.”ConclusionThis study indicates that the relevance of goals and action plans to patients with rheumatic diseases is context specific. On the basis of the study, it is suggested that the context should be considered in rehabilitation practice, including the social network of the patients. This is in order to support patients in rehabilitation interventions to manage everyday life with disease after discharge to their own homes. Moreover, the concept of context in person-centered rehabilitation should be reconsidered. The study also concludes that there is a need for further development and research in follow up programs, as it is not clear what may constitute an optimal design of follow up support.

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“…However, rehabilitation and support services are not always sensitive to the context, expertise and autonomy of adults with CP ( 12 ). Person-centered rehabilitation addresses patients' needs, preferences, experiences or knowledge and cultural values, as well as their history and biography ( 23 ). To optimize person-centered rehabilitation and support services for adults with CP, the present study aims to gain insight into what constitutes citizenship for middle-aged and older adults with CP and how they experience their citizenship.…”

Section: Introductionmentioning

confidence: 99%

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship

et al. 2021

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Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process.Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis.Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44–79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of “meanings of citizenship.” The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively.Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship.

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Towards person-centred rehabilitation in dementia – a narrative synthesis

Cited by 7 publications

References 48 publications

Ageing, dementia and the future – ambivalent futurework in rehabilitation-focused dementia care

Ageing, dementia and the future – ambivalent futurework in rehabilitation-focused dementia care

Goals and Action Plans Across Time and Place—A Qualitative Study Exploring the Importance of “Context” in Person-Centered Rehabilitation

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship

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