Background: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health-related quality of life (QoL) in PD.
Objective: The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodology.
Method: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach.
Results: Four interrelated themes were identified. Emotional well-being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self-esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood.
Conclusion: Findings demonstrated the far-reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person-centred and comprehensive approaches to care.
Patient Or Public Contribution: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11199325 | PMC |
| http://dx.doi.org/10.1111/hex.14124 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Early prediction of functional impairment at hospital discharge in patients with osteoporotic vertebral fracture: a machine learning approach.
Sci Rep
December 2024
Department of Pharmacoepidemiology, Graduate School of Medicine and PublicHealth, Kyoto University, Kyoto, Japan.
Although conservative treatment is commonly used for osteoporotic vertebral fracture (OVF), some patients experience functional disability following OVF. This study aimed to develop prediction models for new-onset functional impairment following admission for OVF using machine learning approaches and compare their performance. Our study consisted of patients aged 65 years or older admitted for OVF using a large hospital-based database between April 2014 and December 2021.
View Article and Find Full Text PDFEffectiveness of rehabilitation programmes targeting quality of life, psychological wellbeing, and functional capacity in pulmonary embolism survivors; a systematic review and best evidence synthesis.
Thromb Res
December 2024
School of Public Health, Physiotherapy & Sports Science, Health Sciences Building, University College Dublin, D04 V1W8, Ireland. Electronic address:
Background: Half of people post pulmonary embolism (PE) experience ongoing symptoms such as dyspnoea, anxiety and depression, exercise limitation and fatigue. These symptoms can reduce their quality of life (QoL), psychological wellbeing, and functional capacity. The efficacy of rehabilitation interventions to prevent and manage these symptoms has not been established.
View Article and Find Full Text PDFLiving with acuteness in chronic illness: The temporal underpinnings of endometriosis.
Med Anthropol Q
December 2024
Helsinki Collegium for Advanced Studies, University of Helsinki, Helsinki, Finland.
This article explores how acuteness is experienced by people with endometriosis in Finland. Drawing on in-depth interviews as well as anonymous written endometriosis stories, we trace instances when the sense of chronicity and cyclicality of endometriosis is disrupted by a possibility of risk to life. These instances include when endometriosis tissue grows in unanticipated and aggressive ways, when medical interventions lead to unexpected complications or medications raise concerns about a gradually developing risk, and when endometriosis diagnosis becomes a catch-all category that could mask the onset of a life-threatening condition.
View Article and Find Full Text PDFA Podcast on Patient and Physician Perspectives in the Holistic Care of Heart-Related Challenges of Type 2 Diabetes.
Diabetes Ther
December 2024
Patient Author, Heart Sistas, North Lauderdale, FL, USA.
Type 2 diabetes (T2D) frequently coexists with cardiorenal complications. Therefore, a holistic approach to patient management is required, with specialists such as primary care physicians, cardiologists, endocrinologists, and nephrologists working together to provide patient care. Although glycemic control is important in the management of T2D, patients with T2D and acceptable glycemic control are still at risk from cardiovascular (CV) events such as stroke, heart attack, and heart failure (HF).
View Article and Find Full Text PDFReal-world experience of diagnosis, disability, and daily management in parents of children with different genetic developmental and epileptic encephalopathies: a qualitative study.
Ann Med
December 2025
Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.
Purpose: This study describes the experience of parents of children with developmental and epileptic encephalopathies (DEE) and how the disease impacts their daily lives.
Materials And Methods: A descriptive qualitative study was conducted using purposeful sampling. Twenty-one parents of children with DEEs caused by SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!