Living with Parkinson's disease – perceptions of invisibility in a photovoice study

Roger, Kerstin; Wetzel, Monika; Penner, Leslie

doi:10.1017/s0144686x16001562

Cited by 8 publications

(12 citation statements)

References 18 publications

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“…We have suggested [32] that the nature of the research reported here extends original forms of photo voice research [33,34,35,36]. Here we add smart technology in the form of the Discovery Tool application to underscore the critical opinions of older adults who not only identify their needs and assets but also offer real-world, real-time solutions to their identified problem(s) [37].…”

Section: Discussionmentioning

confidence: 99%

Older Adults Using Our Voice Citizen Science to Create Change in Their Neighborhood Environment

Tuckett

Freeman

Hetherington

et al. 2018

IJERPH

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Physical activity, primarily comprised of walking in older adults, confers benefits for psychological health and mental well-being, functional status outcomes and social outcomes. In many communities, however, access to physical activity opportunities are limited, especially for older adults. This exploratory study engaged a small sample (N = 8) of adults aged 65 or older as citizen scientists to assess and then work to improve their communities. Using a uniquely designed mobile application (the Stanford Healthy Neighborhood Discovery Tool), participants recorded a total of 83 geocoded photos and audio narratives of physical environment features that served to help or hinder physical activity in and around their community center. In a facilitated process the citizen scientists then discussed, coded and synthesized their data. The citizen scientists then leveraged their findings to advocate with local decision-makers for specific community improvements to promote physical activity. These changes focused on: parks/playgrounds, footpaths, and traffic related safety/parking. Project results suggest that the Our Voice approach can be an effective strategy for the global goals of advancing rights and increasing self-determination among older adults.

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Section: Discussionmentioning

confidence: 99%

Older Adults Using Our Voice Citizen Science to Create Change in Their Neighborhood Environment

Tuckett

Freeman

Hetherington

et al. 2018

IJERPH

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“…This included issues faced, such as insufficiencies in healthcare and access to rehabilitation services, indicating a view that people with neurological conditions may be treated differently. In a number of papers, the complicated health system left people living with a neurological condition confused as to why care stopped suddenly and no more services were available (Gunton et al, 2021; LaDonna et al, 2015; Maratos et al, 2016; Roger et al, 2018; Tornbom et al, 2019; van Heijningen et al, 2021). Tornbom et al (2019) also found that many years after a stroke, participants still experienced improvements through persistent rehabilitation, and wished for more interactive rehabilitation training, including collaborative forms of rehabilitation being suggested in the long-term phase of stroke.…”

Section: Discussionmentioning

confidence: 99%

Exploring the Use of Photovoice in Understanding the Lived Experience of Neurological Conditions: A Scoping Review and Reflexive Thematic Analysis

Smith

Nels

Emery

et al. 2023

International Journal of Qualitative Methods

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People living with neurological conditions such as multiple sclerosis, Parkinson’s disease and dementia may experience physical impairment, social disengagement, cognitive issues, and emotional disturbances. While qualitative research utilising in-depth interviews can access lived experience perspectives, the use of photovoice has the potential to obtain rich insights that include images and raise community awareness. The purpose of this scoping review was to document salient themes relating to the lived experience of neurological conditions as reported in photovoice studies. Following established scoping review methods of the Joanna Briggs Institute, a comprehensive search of five electronic databases, including MEDLINE, EMBASE, PSYCHINFO, CINAHL, and SCOPUS was conducted, as well as relevant journals and reference lists of retrieved studies. References were sorted, screened, and evaluated for inclusion using Endnote and Rayyan. The search results and the study inclusion process were reported in full in the final scoping review and presented in a PRISMA-ScR flow diagram. Reflexive thematic analysis was managed through NVivo to identify and synthesise findings, as well as identify themes. Following the removal of duplicates, the search identified 109 articles for title and abstract screening. The final dataset consisted of 25 studies published between 2007 and 2021. Two themes were identified: 1) ‘Losses and benefit finding’ focuses on the lived experience of people with neurological conditions including being pushed aside by society, a progressive decline of self and growing as a result of losses; 2) ‘Challenges of using photovoice in neurological research’ covers the confusion of terminology and implementation complexities and adaption. Societal change is needed for greater inclusion of people living with neurological conditions. Future studies using photovoice need to pay attention to methodological issues and include the recommended final step of the photovoice process to hold gallery exhibits to disseminate findings to raise awareness and initiate social change.

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“…To our knowledge, this is the first study to utilize photovoice in ALS. Studies of photovoice in other neurological diseases such as Huntington’s, myotonic dystrophy, and Parkinson’s disease have concentrated on quality of life, and have served to remind health care professionals to refocus their efforts on disease aspects which are of greatest concern to the patients and their caregivers [ 12–14 ]. A study of photovoice in stroke survivors demonstrated three phases of coping; initial physical and emotional impacts, coping with barriers including physical disability, and long-term adaption [ 15 ].…”

Section: Discussionmentioning

confidence: 99%

“…In this research method, participants take photographs that illustrate their circumstances with respect to the topic in question, which is then followed by individual and/or group discussion with researchers [ 11 ]. Photovoice has been used as a pilot research tool in a number of neurological disorders, including Parkinson’s [ 12 ], Huntington’s [ 13 ], myotonic dystrophy [ 14 ], and stroke [ 15 ], but no studies have utilized the photovoice method in ALS to date.…”

Section: Introductionmentioning

confidence: 99%

Photovoice as a Participatory Research Tool in Amyotrophic Lateral Sclerosis

Gunton

Hansen²,

Schellenberg

2021

JND

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Background: Photovoice is a qualitative research tool increasingly utilized in the healthcare field to understand the illness experience from the patient and caregiver perspective. This is the first study to evaluate photovoice in the context of amyotrophic lateral sclerosis (ALS). Objective: A patient and caregiver centered research tool was utilized to gain a greater understanding of challenges faced when living with ALS. Methods: Eight patients and three corresponding caregivers participating by taking photographs, writing descriptive text, and participating in individual and group interviews. Inductive thematic analysis was employed to uncover recurring themes. Results: Five main themes were identified; 1) facing the diagnosis, 2) loss of function, 3) isolation, 4) health system challenges, and 5) hope. Despite the devasting impact of ALS, the majority of participants reported a surprising amount of positivity in the face of receiving this difficult diagnosis, and demonstrated incredible creativity and adaptability to meet the ensuing loss of function. However, patients and caregivers discussed feelings of isolation and health care system challenges. The importance of hope was a strong and recurring theme. Conclusions: The photovoice research tool demonstrates the profound resilience of these participants, and challenges the medical community to find ways of fostering positivity and hope throughout the ALS disease course. Further clinic and community resources, education, and supports are needed to combat the sense of isolation and health care system challenges experienced by patients and their caregivers.

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Living with Parkinson's disease – perceptions of invisibility in a photovoice study

Cited by 8 publications

References 18 publications

Older Adults Using Our Voice Citizen Science to Create Change in Their Neighborhood Environment

Older Adults Using Our Voice Citizen Science to Create Change in Their Neighborhood Environment

Exploring the Use of Photovoice in Understanding the Lived Experience of Neurological Conditions: A Scoping Review and Reflexive Thematic Analysis

Photovoice as a Participatory Research Tool in Amyotrophic Lateral Sclerosis

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