Evidence map›Paper›PMID 38924637›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2024

Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.

Laura J Smith, Jerri Callis, Shannon Bridger-Smart, Olivia Guilfoyle

Abstract read
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Review
  2. Making Room for Every Voice: Reimagining Person-Centred Care in the Neurosciences.Health expectations : an international journal of public participation in health care and health policy · 2025
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors.

Laura J SmithPreventive Neurology Unit, Wolfson Institute of Population Health, Queen Mary University of London, London, UK.ORCID 0000-0003-3275-1530
Jerri CallisSchool of Psychology, Keynes College, University of Kent, Canterbury, UK.ORCID 0000-0002-2589-0201
Shannon Bridger-SmartSchool of Psychology, Keynes College, University of Kent, Canterbury, UK.
Olivia GuilfoyleSchool of Psychology, Keynes College, University of Kent, Canterbury, UK.

Funding

Faculty of Social Sciences, University of Kent
6 · The paper itself

Abstract

backgroundNonmotor 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.

objectiveThe 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.

methodUsing 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.

resultsFour 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.

conclusionFindings 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.

Indexed as

Adaptation, PsychologicalParkinson DiseasePhotographyQuality of LifeActivities of Daily LivingAgedAged, 80 and overFemaleHumansMaleMiddle AgedQualitative ResearchSelf ConceptSocial Supportactivities of daily livingnonmotor symptomsParkinson's diseaseparticipatory actionphotovoicequality of life

Identifiers

PMID38924637
PMCPMC11199325

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.