Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study
Abstract 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...
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| Format: | Article |
| Language: | English |
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Wiley
2024-06-01
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| Series: | Health Expectations |
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| Online Access: | https://doi.org/10.1111/hex.14124 |
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| author | Laura J. Smith Jerri Callis Shannon Bridger‐Smart Olivia Guilfoyle |
| author_facet | Laura J. Smith Jerri Callis Shannon Bridger‐Smart Olivia Guilfoyle |
| author_sort | Laura J. Smith |
| collection | DOAJ |
| description | Abstract 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. |
| format | Article |
| id | doaj-art-aec49c0ed6514e9faf66e504460fe2fd |
| institution | Kabale University |
| issn | 1369-6513 1369-7625 |
| language | English |
| publishDate | 2024-06-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj-art-aec49c0ed6514e9faf66e504460fe2fd2025-08-20T03:47:21ZengWileyHealth Expectations1369-65131369-76252024-06-01273n/an/a10.1111/hex.14124Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice StudyLaura J. Smith0Jerri Callis1Shannon Bridger‐Smart2Olivia Guilfoyle3Preventive Neurology Unit, Wolfson Institute of Population Health Queen Mary University of London London UKSchool of Psychology, Keynes College University of Kent Canterbury UKSchool of Psychology, Keynes College University of Kent Canterbury UKSchool of Psychology, Keynes College University of Kent Canterbury UKAbstract 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.https://doi.org/10.1111/hex.14124activities of daily livingnonmotor symptomsParkinson's diseaseparticipatory actionphotovoicequality of life |
| spellingShingle | Laura J. Smith Jerri Callis Shannon Bridger‐Smart Olivia Guilfoyle Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study Health Expectations activities of daily living nonmotor symptoms Parkinson's disease participatory action photovoice quality of life |
| title | Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study |
| title_full | Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study |
| title_fullStr | Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study |
| title_full_unstemmed | Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study |
| title_short | Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study |
| title_sort | experiences of living with the nonmotor symptoms of parkinson s disease a photovoice study |
| topic | activities of daily living nonmotor symptoms Parkinson's disease participatory action photovoice quality of life |
| url | https://doi.org/10.1111/hex.14124 |
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