Facing and dealing with emotional turbulence : Living with newly diagnosed Parkinson's disease
(2024) In Scandinavian Journal of Caring Sciences 38(3). p.701-710- Abstract
Introduction: The experiences of living with Parkinson's disease (PD) from the perspective of newly diagnosed persons with PD (PwPD) have not been previously described. Aim: This study aimed to gain a better understanding of the impact of living with the early stages of PD. Methods: A qualitative interview study was conducted among nine persons, seven men and two women, from southern Sweden. Participants had a median age of 71 (min–max, 64–77) years and had been diagnosed with PD for a median of 5 (min–max, 2–12) months. Interviews were recorded and analysed using systematic text condensation. Results: The analysis resulted in one core category, Facing and dealing with emotional turbulence, and four categories with 2–3 subcategories... (More)
Introduction: The experiences of living with Parkinson's disease (PD) from the perspective of newly diagnosed persons with PD (PwPD) have not been previously described. Aim: This study aimed to gain a better understanding of the impact of living with the early stages of PD. Methods: A qualitative interview study was conducted among nine persons, seven men and two women, from southern Sweden. Participants had a median age of 71 (min–max, 64–77) years and had been diagnosed with PD for a median of 5 (min–max, 2–12) months. Interviews were recorded and analysed using systematic text condensation. Results: The analysis resulted in one core category, Facing and dealing with emotional turbulence, and four categories with 2–3 subcategories each: Something is wrong (Vague signs of change; Losing control); The going gets tough (Recalling; Lack of motivation); Losing direction (Uncertainties; Frightened of disease progression) and Dealing with life (Avoiding social situations; Hope and despair; Ease worries). Conclusion: Newly diagnosed PwPD face emotional turbulence with increasing challenges in managing everyday basic needs. Impaired functioning affects self-esteem and identity, which calls for strategies to overcome emotional reactions of embarrassment, frustration and worry. A sense of lost control and direction increased as the future became more uncertain. The participants’ emotional burden and struggle to find a reason to go on or some solution to their new situation left them with both hope and despair. Our results suggest that a person-centred needs-based approach may help newly diagnosed PwPD deal with their new life situation.
(Less)
- author
- Hammarlund, Catharina Sjödahl LU ; Khalaf, Atika ; Westergren, Albert ; Hagell, Petra Lilja and Hagell, Peter
- organization
- publishing date
- 2024
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- de novo, impact, newly diagnosed, Parkinson's disease, qualitative research
- in
- Scandinavian Journal of Caring Sciences
- volume
- 38
- issue
- 3
- pages
- 701 - 710
- publisher
- Wiley-Blackwell
- external identifiers
-
- scopus:85189558959
- pmid:38533792
- ISSN
- 0283-9318
- DOI
- 10.1111/scs.13258
- language
- English
- LU publication?
- yes
- id
- cc8ee1ed-a6c0-4128-8f66-58cd2bab7c32
- date added to LUP
- 2024-04-22 12:49:40
- date last changed
- 2024-11-19 10:35:12
@article{cc8ee1ed-a6c0-4128-8f66-58cd2bab7c32,
abstract = {{<p>Introduction: The experiences of living with Parkinson's disease (PD) from the perspective of newly diagnosed persons with PD (PwPD) have not been previously described. Aim: This study aimed to gain a better understanding of the impact of living with the early stages of PD. Methods: A qualitative interview study was conducted among nine persons, seven men and two women, from southern Sweden. Participants had a median age of 71 (min–max, 64–77) years and had been diagnosed with PD for a median of 5 (min–max, 2–12) months. Interviews were recorded and analysed using systematic text condensation. Results: The analysis resulted in one core category, Facing and dealing with emotional turbulence, and four categories with 2–3 subcategories each: Something is wrong (Vague signs of change; Losing control); The going gets tough (Recalling; Lack of motivation); Losing direction (Uncertainties; Frightened of disease progression) and Dealing with life (Avoiding social situations; Hope and despair; Ease worries). Conclusion: Newly diagnosed PwPD face emotional turbulence with increasing challenges in managing everyday basic needs. Impaired functioning affects self-esteem and identity, which calls for strategies to overcome emotional reactions of embarrassment, frustration and worry. A sense of lost control and direction increased as the future became more uncertain. The participants’ emotional burden and struggle to find a reason to go on or some solution to their new situation left them with both hope and despair. Our results suggest that a person-centred needs-based approach may help newly diagnosed PwPD deal with their new life situation.</p>}},
author = {{Hammarlund, Catharina Sjödahl and Khalaf, Atika and Westergren, Albert and Hagell, Petra Lilja and Hagell, Peter}},
issn = {{0283-9318}},
keywords = {{de novo; impact; newly diagnosed; Parkinson's disease; qualitative research}},
language = {{eng}},
number = {{3}},
pages = {{701--710}},
publisher = {{Wiley-Blackwell}},
series = {{Scandinavian Journal of Caring Sciences}},
title = {{Facing and dealing with emotional turbulence : Living with newly diagnosed Parkinson's disease}},
url = {{http://dx.doi.org/10.1111/scs.13258}},
doi = {{10.1111/scs.13258}},
volume = {{38}},
year = {{2024}},
}