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Quality of Life Research

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04.12.2017 | Review

The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis

verfasst von: Ammarah Y. Soofi, Vanina Dal Bello-Haas, Michelle E. Kho, Lori Letts

Erschienen in: Quality of Life Research | Ausgabe 4/2018

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Abstract

Background

The nature of amyotrophic lateral sclerosis (ALS) is progressive and degenerative, thus influencing individuals physically, emotionally, and socially. A broad review of qualitative studies that describe the personal experiences of people with ALS with physiotherapy, occupational therapy and speech and language pathology interventions, and how those affect QoL is warranted.

Purpose

This study synthesizes qualitative research regarding the potential that rehabilitation interventions have to maintain and/or improve QoL from the perspective of people with ALS.

Methods

The SPIDER search strategy was applied and five articles met inclusion criteria addressing the perceived impact of rehabilitation on QoL for individuals with ALS.

Results

Four themes emerged: the concept of control; adapting interventions to disease stage; struggles with interventions; and barriers between healthcare providers and patients.

Conclusions

Rehabilitation interventions were perceived to have potential to support QoL by people with ALS. Advantages and limitations of rehabilitation services within this population were identified.

Nur mit Berechtigung zugänglich

Francis, K., Bach, J., & DeLisa, J. (1999). Evaluation and rehabilitation of patients with adult motor neuron disease. Archives of Physical Medicine and Rehabilitation. https://doi.org/10.1016/s0003-9993(99)90089-8.PubMed

Lewis, M., & Rushanan, S. (2007). The role of physical therapy and occupational therapy in the treatment of Amyotrophic Lateral Sclerosis. NeuroRehabilitation, 22, 451–461.PubMed

Mitsumoto, H., & Bene, M. (2000). Improving the quality of life for people with ALS: The challenge ahead. Amyotrophic Lateral Sclerosis. https://doi.org/10.1080/146608200300079464.

Ng, L., Khan, F., & Mathers, S. (2009). Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD007425.pub2.

World Health Organization (WHO). (2005). Disability, including prevention, management and rehabilitation. Geneve: World Health Assembly.

Foley, G., Timonen, V., & Hardiman, O. (2014). Exerting control and adapting to loss in amyotrophic lateral sclerosis. Social Science & Medicine. https://doi.org/10.1016/j.socscimed.2013.11.003.

Hughes, R., Sinha, A., Higginson, I., Down, K., & Leigh, P. (2005). Living with motor neurone disease: Lives, experiences of services and suggestions for change. Health and Social Care in the Community. https://doi.org/10.1111/j.1365-2524.2005.00530.x.

Murphy, J. (2004). I prefer contact this close: Perceptions of AAC by people with motor neurone disease and their communication partners. Augmentative and Alternative Communication. https://doi.org/10.1080/07434610400005663.

McNaughton, D., Light, J., & Groszyk, L. (2001). Don’t give up: Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication. Augmentative and Alternative Communication. https://doi.org/10.1080/714858088.

10.

Elsworth, C., Dawes, H., & Sackley, C., et al. (2009). A study of perceived facilitators to physical activity in neurological conditions. International Journal of Therapy Rehabilitation. https://doi.org/10.12968/ijtr.2009.16.1.37936.

11.

Cooke, A., Smith, D., & Booth, A. (2012). Beyond PICO: The SPIDER tool for qualitative evidence synthesis. Qualitative Health Research. https://doi.org/10.1177/1049732312452938.PubMed

12.

Mikulic, M., DeLisa, J. A., & Miller, R. M. (1979). Rehabilitate the patient with ALS? Rehabilitation nursing. https://doi.org/10.1002/j.2048-7940.1979.tb00940.x.

13.

Bondas, T., & Hall, E. O. (2007). Challenges in approaching metasynthesis research. Qualitative Health Research. https://doi.org/10.1177/1049732306295879.PubMed

14.

Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement. https://doi.org/10.1177/001316446002000104.

15.

Letts, L., Wilkins, S., Law, M., Stewart, D., Bosch, J., & Westmorland, M. (2007). Critical review form—Qualitative studies (version 2.0). Resource document. McMaster University. http://www.srs-mcmaster.ca/Portals/20/pdf/ebp/ qualguidelines_version2.0.pdf.

16.

Henderson, R., & Rheault, W. (2004). Appraising and incorporating qualitative research in evidence-based practice. Journal of Physical Therapy Education, 18(3), 35–45.CrossRef

17.

Guba, E. G. (1981). Criteria for assessing the trustworthiness of naturalistic inquiries. Educational Resources Information Center Annual Review Paper, 29, 75–91.

18.

Sandelowski, M., & Barroso, J. (2002). Finding the findings in qualitative studies. Journal of Nursing Scholarship. https://doi.org/10.1111/j.1547-5069.2002.00213.x.PubMed

19.

Noblit, G., & Hare, R. (1988). Meta-Ethnography. Newbury Park, CA: Sage Publications.CrossRef

20.

Tong, A., Flemming, K., McInnes, E., Oliver, S., & Craig, J. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology. https://doi.org/10.1186/1471-2288-12-181.PubMedPubMedCentral

21.

Bello-Haas, D. V. (2002). A framework for rehabilitation in degenerative diseases: Planning care and maximizing quality of life. Neurology Report. https://doi.org/10.1097/01253086-200226030-00003

22.

Swash, M. (2010). Coping with motor neuron disease: How do people adapt to the devastating reality? Journal of Neurology, Neurosurgery & Psychiatry. https://doi.org/10.1136/jnnp.2010.21058.

23.

Feinstein, A., & Cicchetti, D. (1990). High Agreement Low Kappa I. Problems of two paradoxes. Journal of Clinical Epidemiology. https://doi.org/10.1016/0895-4356(90)90158-L.

Titel: The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis
verfasst von: Ammarah Y. Soofi
Vanina Dal Bello-Haas
Michelle E. Kho
Lori Letts
Publikationsdatum: 04.12.2017
Verlag: Springer International Publishing
Erschienen in: Quality of Life Research / Ausgabe 4/2018
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-017-1754-7

Live-Webinar: Aktuelle Leitlinien bei Herz-Kreislauf-Erkrankungen

Springer Medizin

The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis

Abstract

Background

Purpose

Methods

Results

Conclusions

Live-Webinar: Aktuelle Leitlinien bei Herz-Kreislauf-Erkrankungen

Springer Medizin

Abstract

Background

Purpose

Methods

Results

Conclusions

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