Dataset Information

Experienced Respiratory Symptoms and the Impact on Daily Life from the Perspective of People with Parkinson's Disease: A Grounded Theory.

ABSTRACT:

Background

Abnormal respiratory function tests can be observed early in the course of Parkinson's disease (PD). A better understanding of the impact of respiratory dysfunction on daily life in PD is needed to prevent later occurring complications as a (aspiration) pneumonia.

Objective

To explain which respiratory symptoms people with PD or a form of atypical parkinsonism experience and how these symptoms impact on their daily lives.

Methods

This qualitative study used a grounded theory approach. A purposeful sample strategy was used to capture information-rich cases. Data were collected in semi-structured interviews with participants diagnosed with either PD (n = 11) or atypical parkinsonism (n = 3), all of whom had confirmed respiratory symptoms. Data were analyzed using grounded theory analysis by creating codes, categories, theoretical themes, and, ultimately, a conceptual model.

Results

Four respiratory profiles emerged, describing different types of respiratory dysfunction, with various positive and negative influencing factors. First, a loss of breathing automatism was experienced. Second, episodes of breathlessness or a rapid, shallow breathing pattern were triggered by either physical exertion, fatigue, or postural deformities. Third, stress and anxiety also triggered episodes of breathlessness. Fourth, a decreased cough strength and frequent coughing. Based on these findings, we constructed a conceptual model that visualizes the relations between these four types of respiratory dysfunction and their impact on daily life, with 'discomfort' and 'avoidance of social activities' as crucial elements.

Conclusion

A tailored approach for each profile of respiratory dysfunction is recommended to improve respiratory dysfunction and to reduce its social impact in people with PD.

SUBMITTER: van de Wetering-van Dongen VA

PROVIDER: S-EPMC9398081 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature

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Publications

Experienced Respiratory Symptoms and the Impact on Daily Life from the Perspective of People with Parkinson's Disease: A Grounded Theory.

van de Wetering-van Dongen Veerle A VA Nijkrake Maarten J MJ Koenders Niek N van der Wees Philip J PJ Bloem Bastiaan R BR Kalf Johanna G JG

Journal of Parkinson's disease 20220101 5

<h4>Background</h4>Abnormal respiratory function tests can be observed early in the course of Parkinson's disease (PD). A better understanding of the impact of respiratory dysfunction on daily life in PD is needed to prevent later occurring complications as a (aspiration) pneumonia.<h4>Objective</h4>To explain which respiratory symptoms people with PD or a form of atypical parkinsonism experience and how these symptoms impact on their daily lives.<h4>Methods</h4>This qualitative study used a gro ...[more]

PMID: 35634852

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Project description:BackgroundWhere available, Parkinson's Nurse Specialists (PNS) provide a range of care, support, guidance, and advocacy for people with Parkinson's (PwP), and, where appropriate, their care partners (CP). Parkinson's is a complex and progressive condition. Consequently, evaluating health outcomes is not a reliable method to understand the value and impact of PNS. Previous research has identified PNS can improve the subjective well-being of PwP in the community, also that barriers to care include heavy caseloads and a lack of time. Yet little is known about the value of the role of the PNS, particularly about the impact of pharmacological management and review. This research aims to close this research gap by providing explanatory theories of the impact and value of PNS to PwP, their CP, and other professionals.MethodsA social constructivist grounded theory approach was used. Semi-structured interviews were conducted with three groups, PNS, PwP, and CP. Interviews were analysed using NVivo for coding and categorising and Word for memo-writing. Data was analysed inductively and iteratively to identify contexts, social processes, actions, and behaviours, before final emergent theories were identified.Results46 semi-structured interviews (PNS 18, PwP 19, CP 9) led to four data categories and 13 sub-categories that delineated PNS value. (1) Expert Counsel; provision of emotional support, education, and lifestyle guidance; CP inclusion; provision from diagnosis; and across all stages of Parkinson's. (2) Conduit of Care; signposting, referral, and connection to PwP, CP, others; PNS barriers and facilitators; (3) Team/Partnership; continuity and partnership, 'working together'; (4) Pharmacological Support, PNS prescribing; concordance; speed of treatment. Where PNS were accessible they could offer personalised support and partnership, so providing person-centred care that improves health and well-being.ConclusionWhere a PNS is accessible due to service availability and manageable caseloads, to provide person-centred care, they deliver several benefits to PwP and CP which improve health and perceived well-being. Where PNS are not available, PwP and CP often struggle to manage their Parkinson's with negative impacts on health and well-being.

Project description:BackgroundDigital inclusion of older people is an important agenda for the future and well-being of the older population, as it represents a form of social inclusion with significant gains for healthy aging. The present study aimed to understand the experiences of Brazilian older adults who use smartphones and the implications in their daily lives.MethodA qualitative study was developed using a constructivist grounded approach. Older people (≥60 years) with prior access to a smartphone were invited to participate in the study. Participation took place through semi-structured, audio-recorded interviews. Data collection and analysis occurred simultaneously using a constant comparative approach. Data management and analysis used the Atlas.ti® software.ResultsOverall, 37 older people participated, with an average age of 70.60 ± 6.95 years, predominantly female (n = 33), white (n = 25), married (n = 26) and retired (n = 27). The first sample group included 27 older people with family support and the second group included 10 older people without family support (who lived alone in their homes). A core category emerged from the data analysis-"Expanding the personal and social development of older adults through smartphone communication"-around which three main categories emerged: 1) The smartphone as "a window to the world"; 2) The problem of misinformation and fake news on virtual networks; 3) Technological paradoxes in the use of smartphones.ConclusionsThe digital transition associated with smartphone use brings unimaginable benefits to older adults who adopt positive habits to improve their well-being and expand their social connections, following efforts proposed by the Decade of Healthy Aging. However, older adults still face disparities and experience a significant digital divide, which represents a major challenge. Barriers to access are further aggravated in developing countries. We hope this study contributes to public health policies on digital inclusion and healthy aging.

Dataset Information

Experienced Respiratory Symptoms and the Impact on Daily Life from the Perspective of People with Parkinson's Disease: A Grounded Theory.

Background

Objective

Methods

Results

Conclusion

Publications

Experienced Respiratory Symptoms and the Impact on Daily Life from the Perspective of People with Parkinson's Disease: A Grounded Theory.

Similar Datasets

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