Renegotiating dimensions of the self: A systematic review and qualitative evidence synthesis of the lived experience of self‐managing rheumatoid arthritis

Donnelly, Susie; Manning, Molly; Mannan, Hasheem; Wilson, Anthony G.; Kroll, Thilo

doi:10.1111/hex.13122

Cited by 15 publications

(25 citation statements)

References 80 publications

(913 reference statements)

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“…42 Selfesteem and relations with others are the two dimensions most profoundly impacted by chronic illness, having effects on personal and social vulnerability. This reinforces previous work on self-efficacy, 43 or on 'renegotiating the self' (like in Donnelly's meta-analyses) 44 or on F I G U R E 1 Study process. CDSMP, Chronic Disease Self-Management Programme social isolation.…”

Section: Discussionsupporting

confidence: 83%

The chronic disease Self‐Management Programme: A phenomenological study for empowering vulnerable patients with chronic diseases included in the EFFICHRONIC project

Fracso

Bourrel

Jørgensen

et al. 2022

Health Expectations

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Introduction:The Chronic Disease Self-Management Programme (CDSMP) has resulted in improved health outcomes for patients. However, research has focused mainly on those with chronic conditions and has not extensively explored prevention programmes targeting individuals with specific vulnerability profiles.Aim: This study aimed to understand the effects of the CDSMP on the lived experience of vulnerable patients included in the EFFICHRONIC project in France, based on their needs and expectations before and after participation.Methods: We conducted a qualitative phenomenological semio-pragmatic study based on 37 in-depth interviews with 20 patients (20 before/17 after CDSMP).Results: By transforming existential dimensions (identity, relationship with others and bodily experience), chronic illness generates new needs in the vulnerable person.By resonating with the expectations and needs of participants, the CDSMP induces motivation and a sense of belonging to a community of peers. It has enabled the participants to become actors of their own health until empowerment. Although some limitations are reported, the programme has awakened a desire in the participants to take better care of their health and to develop personal skills with, for some, a desire to become involved in health education. Conclusion:Our phenomenological approach highlighted the resonance between the programme (its design and implementation) and the lived experience of patients, as an effective element of empowerment. This necessitates training the facilitators to elicit the lived experience of patients. Furthermore, as a patient-centred approach is required, the facilitators need to learn how to adapt the design of the programme to the singularity of the patient.

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Section: Discussionsupporting

confidence: 83%

The chronic disease Self‐Management Programme: A phenomenological study for empowering vulnerable patients with chronic diseases included in the EFFICHRONIC project

Fracso

Bourrel

Jørgensen

et al. 2022

Health Expectations

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“…To the best of our knowledge, this is the first academic study of rheumatoid arthritis using the photovoice method [ 36 ]. Photovoice proved to be an effective tool for actively engaging individuals in reflecting and communicating the lived experience of self-managing RA as evidenced in the richness of the data presented here.…”

Section: Discussionmentioning

confidence: 99%

“…Since the 1980s, health and social researchers have increasingly using qualitative methods to explore the subjective, experiential aspects of chronic illness in order to improve care, understanding, and public policy [ 30 , 31 ]. Thus far, qualitative studies have generated rich, deep knowledge of the lived experience of RA and offer valuable frameworks and themes to demonstrate how people living with RA maintain a functional role in society [ 32 – 36 ]. However, it is still unclear how themes such as disease symptoms, control of one’s body, and emotional challenges, are applied in everyday life.…”

Section: Introductionmentioning

confidence: 99%

“…However, it is still unclear how themes such as disease symptoms, control of one’s body, and emotional challenges, are applied in everyday life. Narrative methods have provided good insights into the perceptions, beliefs, attitudes and reported behaviours of individuals living with arthritis and other long-term conditions [ 36 ]. However, data and information obtained through interviews alone may miss some of the nuances of lived experience that either may be less salient in a person’s mind or cannot easily be expressed by verbal means alone [ 37 – 40 ].…”

Section: Introductionmentioning

confidence: 99%

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(In)Visible illness: A photovoice study of the lived experience of self-managing rheumatoid arthritis

et al. 2021

Self Cite

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Background Chronic illnesses, such as Rheumatoid Arthritis (RA), are a growing burden on health care systems worldwide. Self-management emphasises the patient’s central role in managing their illness. This is pertinent given the majority of care is provided by the individual themselves; yet how individuals make sense of self-management in everyday life is largely unseen. Objective The purpose of this study was to capture the strengths and concerns of individuals with RA in self-managing their illness, raise awareness of their lived experience and spark a dialogue among stakeholders. Methods A community-based participatory approach, Photovoice, was adopted. A purposive sample of participants were tasked with taking photographs to represent the challenges and solutions to living with RA. Group workshops and semi-structured interviews were conducted to facilitate reflection, dialogue and analysis. Data analysis followed Braun and Clarke’s thematic analysis. Public exhibitions were held throughout the Autumn of 2019. Results Eight women and three men (n = 11) across suburban and urban regions of Ireland were recruited (mean age 57 years, disease duration 4–21 years). Participants identified four main themes which reflected the lived experience of self-managing RA: (i) I’m Here but I’m Not, (ii) Visible Illness, (iii) Medicine in All its Forms, (iv) Mind Yourself. These themes captured the challenge of reduced agency, limited contribution and participation, and a complex relationship between visible and invisible illness. Solutions focused on improving psychological and emotional resilience, particularly through personal reflection and increased agency. Conclusions Our findings suggest that RA is experienced as a fluid relationship between states of masking and surfacing of illness shaped by contextual and situational factors. Photovoice was a highly effective tool to capture and communicate this complexity. Supporting increased agency among individuals with RA to control the (in)visibility of illness and disability can inform the development of future self-management support.

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“…Out of these publications, 1 article on structure ( 31 ), 7 articles on process ( 24 , 32 – 37 ) and 2 articles on outcome quality ( 31 , 38 ) were identified. For the WHO-defined health goals, 1 article on physical ( 39 ), no article on psychological and 1 article on social issues ( 40 ) were identified. One for the role of nursing ( 41 ), for polypharmacy 1 ( 42 ), and for treat to target ( 43 ) 1 publication was found in each case.…”

Section: Resultsmentioning

confidence: 99%

Identification of Five Quality Needs for Rheumatology (Text Analysis and Literature Review)

Pallua

Schirmer

2021

Front. Med.

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Background: While the use of the term “quality” in industry relates to the basic idea of making processes measurable and standardizing processes, medicine focuses on achieving health goals that go far beyond the mere implementation of diagnostic and therapeutic processes. However, the quality management systems used are often simple, self-created concepts that concentrate on administrative processes without considering the quality of the results, which is essential for the patient. For several rheumatic diseases, both outcome and treatment goals have been defined. This work summarizes current mainstreams of strategies with published quality efforts in rheumatology.Methods: PubMed, Cochrane Library, and Web of Science were used to search for studies, and additional manual searches were carried out. Screening and content evaluation were carried out using the PRISMA-P 2015 checklist. After duplicate search in the Endnote reference management software (version X9.1), the software Rayyan QCRI (https://rayyan.qcri.org) was applied to check for pre-defined inclusion and exclusion criteria. Abstracts and full texts were screened and rated using Voyant Tools (https://voyant-tools.org/). Key issues were identified using the collocate analysis.Results: The number of selected publications was small but specific (14 relevant correlations with coefficients >0.8). Using trend analysis, 15 publications with relative frequency of keywords >0.0125 were used for content analysis, revealing 5 quality needs. The treat to target (T2T) initiative was identified as fundamental paradigm. Outcome parameters required for T2T also allow quality assessments in routine clinical work. Quality care by multidisciplinary teams also focusing on polypharmacy and other quality aspects become essential, A global software platform to assess quality aspects is missing. Such an approach requires reporting of multiple outcome parameters according to evidence-based clinical guidelines and recommendations for the different rheumatic diseases. All health aspects defined by the WHO (physical, mental, and social health) have to be integrated into the management of rheumatic patients.Conclusion: For the future, quality projects need goals defined by T2T based initiatives in routine clinical work, secondary quality goals include multidisciplinary cooperation and reduction of polypharmacy. Quality indicators and standards in different health systems will provide new information to optimize patients' care in different health systems.

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Renegotiating dimensions of the self: A systematic review and qualitative evidence synthesis of the lived experience of self‐managing rheumatoid arthritis

Abstract: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 15 publications

References 80 publications

The chronic disease Self‐Management Programme: A phenomenological study for empowering vulnerable patients with chronic diseases included in the EFFICHRONIC project

The chronic disease Self‐Management Programme: A phenomenological study for empowering vulnerable patients with chronic diseases included in the EFFICHRONIC project

(In)Visible illness: A photovoice study of the lived experience of self-managing rheumatoid arthritis

Identification of Five Quality Needs for Rheumatology (Text Analysis and Literature Review)

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