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The Impact of Living with Parkinson's Disease : Balancing within a Web of Needs and Demands

Sjödahl Hammarlund, Catharina LU ; Westergren, Albert LU ; Åström, Ingrid LU ; Edberg, Anna Karin LU and Hagell, Peter LU (2018) In Parkinson's Disease 2018.
Abstract

This study explores the impact of living with Parkinson's disease (PD). Nineteen persons (11 women) aged 55-84 diagnosed with PD 3-27 years ago participated. Data were collected through semistructured interviews, which were recorded, transcribed verbatim, and analysed by qualitative content analysis. Four categories represented the impact of living with PD: "Changed prerequisites for managing day-to-day demands," "Loss of identity and dignity," "Compromised social participation," and "The use of practical and psychological strategies." There was a shift from an internal to an external locus of control in managing, control, competence, relatedness, and autonomy. According to self-determination theory, a shift towards extrinsically... (More)

This study explores the impact of living with Parkinson's disease (PD). Nineteen persons (11 women) aged 55-84 diagnosed with PD 3-27 years ago participated. Data were collected through semistructured interviews, which were recorded, transcribed verbatim, and analysed by qualitative content analysis. Four categories represented the impact of living with PD: "Changed prerequisites for managing day-to-day demands," "Loss of identity and dignity," "Compromised social participation," and "The use of practical and psychological strategies." There was a shift from an internal to an external locus of control in managing, control, competence, relatedness, and autonomy. According to self-determination theory, a shift towards extrinsically motivated behaviours may occur when these basic needs are thwarted, leading to compensatory strategies or needs substitutes with negative consequences on health and well-being. We suggest a needs-based approach as an important starting point to better understand the consequences of living with PD and to explore the means for people with PD to acquire an improved quality of life on their own terms. In conclusion, our findings suggest for a shift in focus, from a biomedical to a needs-based approach to understand the impact of living with PD and facilitate more person-centred care and person-centred outcome measurement.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Parkinson's Disease
volume
2018
publisher
Hindawi Publishing Corporation
external identifiers
  • scopus:85051574370
ISSN
2042-0080
DOI
10.1155/2018/4598651
language
English
LU publication?
yes
id
70323206-eedb-49e5-ba09-1259cd8da080
date added to LUP
2018-09-13 11:05:47
date last changed
2019-02-20 11:26:51
@article{70323206-eedb-49e5-ba09-1259cd8da080,
  abstract     = {<p>This study explores the impact of living with Parkinson's disease (PD). Nineteen persons (11 women) aged 55-84 diagnosed with PD 3-27 years ago participated. Data were collected through semistructured interviews, which were recorded, transcribed verbatim, and analysed by qualitative content analysis. Four categories represented the impact of living with PD: "Changed prerequisites for managing day-to-day demands," "Loss of identity and dignity," "Compromised social participation," and "The use of practical and psychological strategies." There was a shift from an internal to an external locus of control in managing, control, competence, relatedness, and autonomy. According to self-determination theory, a shift towards extrinsically motivated behaviours may occur when these basic needs are thwarted, leading to compensatory strategies or needs substitutes with negative consequences on health and well-being. We suggest a needs-based approach as an important starting point to better understand the consequences of living with PD and to explore the means for people with PD to acquire an improved quality of life on their own terms. In conclusion, our findings suggest for a shift in focus, from a biomedical to a needs-based approach to understand the impact of living with PD and facilitate more person-centred care and person-centred outcome measurement.</p>},
  articleno    = {4598651},
  author       = {Sjödahl Hammarlund, Catharina and Westergren, Albert and Åström, Ingrid and Edberg, Anna Karin and Hagell, Peter},
  issn         = {2042-0080},
  language     = {eng},
  month        = {07},
  publisher    = {Hindawi Publishing Corporation},
  series       = {Parkinson's Disease},
  title        = {The Impact of Living with Parkinson's Disease : Balancing within a Web of Needs and Demands},
  url          = {http://dx.doi.org/10.1155/2018/4598651},
  volume       = {2018},
  year         = {2018},
}