An expert in what?: The need to clarify meaning and expectations in “The Expert Patient”

Tyreman, Stephen

doi:10.1007/s11019-005-2279-3

Cited by 20 publications

(21 citation statements)

References 8 publications

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“…Patients request improvement in long-term rehabilitation [57], the ''expert patient'' and Chronic Disease Self-Management Program (CDSMP) models promote empowering of patients, teaching them skills while seeking to reduce the socioeconomic cost of injury and rehabilitation [8,9,57,58]. The continuous process of rehabilitation requires constant identification of problems that need to be addressed [59], and patients want to know practical information like for their ''bladder and bowel'' problems [18], thus the patients' self-assessment of their function will help them to ''keep an eye'' on any changes while growing older with SCI.…”

Section: Clinical Relevancementioning

confidence: 99%

“…As a consequence of the increase in the survival rate the ''expert patient'' programme, which is the adopted and adapted version of the Stanford Chronic Disease Self-Management Program [5,6], has been promoted by the Department of Health in the UK [7][8][9] with the aim, supported by the International Classification of Impairment and Disability (ICF), to promote patient participation and community rehabilitation [7][8][9][10][11]. Standardised measures and assessment tools have been used widely in research and rehabilitation, promoted in guidelines and discussed in the literature [12][13][14][15][16].…”

Section: Introductionmentioning

confidence: 99%

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Translation into Greek and initial validity and reliability testing of a modified version of the SCIM III, in both English and Greek, for self-use

Migliore

Marston²,

Souza

2015

Disability and Rehabilitation

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Purpose: To translate and culturally adapt the Spinal Cord Injury Measure version III (SCIM III) into Greek (GR-SCIM III). To conduct initial testing of psychometric properties of both measures by self-report. Method: Forward-backward translation was conducted to produce the GR-SCIM III. Participants completed the English or Greek versions in [2008][2009]. Both versions were examined for multidimensionality, internal consistency and concurrent/criterion validity with the EQ-5D. Results: Forty-five Greek adults with spinal cord injury (SCI) (23 males), mean age 61 (SD17) years; mean time since injury 11 (SD9) years, completed the GR-SCIM III. One hundred and seventy four English-speaking adults with SCI (111 males), mean age 47 (SD12) years; mean time since injury 12 (SD11) years, completed the SCIM III. Unidimensionality was confirmed for both versions. Internal consistency was acceptable (a ¼ 0.78 for both). Validity was strong for the ''self-care'' subscale (GR-SCIM III r ¼ À0.78, SCIM III r ¼ À0.75) and moderate for the ''mobility'' subscale (GR-SCIM III r ¼ À0.58, SCIM III r ¼ À0.45). Conclusions: This has been the first function scale translated and validated in Greek for people with SCI. Both the GR-SCIM III and SCIM III are reliable for use by self-report. More studies are needed to further examine their psychometric properties and compare with observation or interview. ä Implications for RehabilitationThe Greek version of the Spinal Cord Independence Measure version III (SCIM) is valid and reliable for self-report. Further testing is needed to assess psychometric qualities not assessed in the present study. Researchers and therapists in Greece can use a specific measure to assess functional independence in people with Spinal Cord Injury (SCI). Consideration needs to be given to the participants' type of injury, which may affect the results of SCIM III.

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Section: Clinical Relevancementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Translation into Greek and initial validity and reliability testing of a modified version of the SCIM III, in both English and Greek, for self-use

Migliore

Marston²,

Souza

2015

Disability and Rehabilitation

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“…Young people (YP) with CF have been self-managing treatments for many years and might be perceived to be "expert patients" (Tyreman 2005). …”

Section: Introductionmentioning

confidence: 99%

Using poetry to explore normalcy as a coping mechanism for young people with cystic fibrosis

MacDonald

2017

Journal of Research in Nursing

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Living with chronic illness can lead to a spiral of losses including social capital, mobility, physical health and self-worth. One method of coping with a long-term condition is normalcy: psychological bracketing of the illness as a means of coping, and may include the embodiment of treatment as part of the norm. This paper explores the concept of normalcy in young people with cystic fibrosis, disseminated through poetry. The theme of normalcy emerged in a study exploring the experiences of young ‘expert patients’ in partnership with their healthcare team. Observations of outpatient consultations between 10 young people with cystic fibrosis (CF), two carers and the CF team ( n = 11) and subsequent interviews were undertaken to explore perceptions of partnership. Once findings emerged from the original study these were recrafted into poems as an alternative means of dissemination. The poetry from ‘what’s in a norm?’ reflects the young people’s voices and the writer’s interpretation of how normalcy has become embedded into their ways of being. Minimising the impact of CF in this sample was commonplace. Normalcy as a concept emerged strongly in young people with CF in this study. Almost exclusively young people viewed the range of treatments and symptoms as not significant. Further probing revealed a very different picture, one of heavy treatment burden and symptom management. Normalcy may serve as a positive means of coping with the burden of disease. Dissemination of research findings through poetry can enhance nurses’ empathic understanding and provide holistic interpretation of events rather than just summative findings.

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“…The trend towards consumerism is not unique for the Netherlands and can also be seen in other Western countries. In the UK, for example, governmental policy documents spanning the last decade clearly envision the patient as a consumer of healthcare [9,16,32,38].…”

Section: Introductionmentioning

confidence: 99%

Dialogue for Air, Air for Dialogue: Towards Shared Responsibilities in COPD Practice

Visse

Teunissen²,

Peters³

et al. 2010

Health Care Anal

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For the past several years patients have been expected to play a key role in their recovery. Self management and disease management have reached a hype status. Considering these recent trends what does this mean for the division of responsibilities between doctors and patients? What kind of role should healthcare providers play? With findings based on a qualitative research project of an innovative practice for people with Chronic Obstructive Pulmonary Disease (COPD) we reflect on these questions. In-depth interviews conducted with people with COPD, physiotherapists and a pulmonologist show that shifting responsibilities require a supportive attitude from healthcare providers and a dialogical communication between patients and professionals. Our findings show more is needed in order to motivate people with COPD to take responsibility and become co-owners in a process of recovery. The case example illustrates that people with COPD need support from fellow patients to learn to accept their disabilities. Awareness that COPD is more than just a lack of air, that mind and body interact, is a first step to investigate other potential problems and to enhance one's quality of life.

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An expert in what?: The need to clarify meaning and expectations in “The Expert Patient”

Cited by 20 publications

References 8 publications

Translation into Greek and initial validity and reliability testing of a modified version of the SCIM III, in both English and Greek, for self-use

Translation into Greek and initial validity and reliability testing of a modified version of the SCIM III, in both English and Greek, for self-use

Using poetry to explore normalcy as a coping mechanism for young people with cystic fibrosis

Dialogue for Air, Air for Dialogue: Towards Shared Responsibilities in COPD Practice

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