The experience of living with rheumatoid arthritis: A qualitative metasynthesis

Parenti, Giulia; Tomaino, Silvia Caterina Maria; Cipolletta, Sabrina

doi:10.1111/jocn.15428

Cited by 11 publications

(5 citation statements)

References 48 publications

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“…Physical deterioration and functional losses also affect patients’ health [ 46 ]. Independence was crucial for patients’ health, supported by findings from a previous meta-synthesis indicating that independence was essential in conducting a normal life [ 8 ].…”

Section: Discussionmentioning

confidence: 69%

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Belonging, happiness, freedom and empowerment—a qualitative study of patients’ understanding of health in early rheumatoid arthritis

Landgren,

Mogard,

Bremander

et al. 2024

BMC Rheumatol

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Background Rheumatoid arthritis (RA) is a chronic, systemic, inflammatory joint disease, that influences patients’ health in different ways, including physical, social, emotional, and psychological aspects. The goal of rheumatology care is to achieve optimal health and personalised care and therefore, it is essential to understand what health means for patients in the early course of RA. The aim of this study was to describe the understanding of health among patients with early RA. Methods The study had a descriptive qualitative design with a phenomenographic approach. Phenomenography is used to analyse, describe, and understand various ways people understand or experience a phenomenon, in this study, patients’ understandings of health. Individual semi-structured interviews were conducted with 31 patients (22 women and nine men, aged (38–80) with early RA, defined as a disease duration of < 1 year, and disease-modifying anti-rheumatic drugs (DMARDs) for 3–7 months. The phenomenographic analysis was conducted in 7 steps, and the outcome space presents the variation in understanding and the interrelation among categories. In accordance with the European Alliance of Associations for Rheumatology’s (EULAR) recommendations, a patient research partner participated in all phases of the study. Results The analysis revealed four main descriptive categories: ‘Health as belonging’ was described as experiencing a sense of coherence. ‘Health as happiness’ was understood as feeling joy in everyday life. ‘Health as freedom’ was understood as feeling independent. ‘Health as empowerment’ was understood as feeling capable. Essential health aspects in early RA are comprised of a sense of coherence, joy, independence, and the capability to manage everyday life. Conclusions This study revealed that patients’ perception of health in early RA encompasses various facets, including a sense of belonging, happiness, freedom, and empowerment. It highlighted that health is multifaceted and personal, emphasizing the importance of acknowledging this diversity in providing person-centred care. The findings can guide healthcare professionals to deepen patients’ participation in treatment goals, which may lead to better treatment adherence and health outcomes.

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Section: Discussionmentioning

confidence: 69%

“…Even though effective treatments are accessible, the disease can affect patients’ health in different ways, including physical, social, emotional, and psychological aspects [ 8 ]. Symptoms can lead to an inability to participate in desired activities and fulfil social roles [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

Belonging, happiness, freedom and empowerment—a qualitative study of patients’ understanding of health in early rheumatoid arthritis

Landgren,

Mogard,

Bremander

et al. 2024

BMC Rheumatol

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“…The results of the present study show that the mean level of the reported empowerment in patients with RA was comparable with earlier presented data for other chronic diseases (eg, diabetes, which also requires high levels of self‐management) (32–34). Patient empowerment is particularly relevant for patients with chronic disease (eg, RA), given that patients are expected to self‐manage the majority of their care (1,26,27,35). This is of importance because empowerment emphasizes the patient’s own internal resources, which can be negatively affected by RA‐related symptoms and by external factors, such as a lack of social support (36).…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, patient empowerment–based care and education aim to enhance autonomy and enable patients to identify needs, make informed decisions, solve problems, and master their life situations (3). Commonly reported needs in patients with RA include how to manage pain and impaired physical function that affects their life situation (1,26). In the present study, patients with low empowerment were slightly older, more often women, and reported worse pain‐related factors, physical function, and health‐related quality of life.…”

Section: Discussionmentioning

confidence: 99%

“…Most patients with rheumatoid arthritis (RA) are challenged in their self‐management of symptoms such as pain, fatigue, and impaired functioning, all of which affect general health and quality of life (1). Patient‐centered standards of care have been developed for patients with RA, with the purpose of empowering this patient group to develop responsibility for their disease (2), in line with the theory of person‐centered care (3).…”

Section: Introductionmentioning

confidence: 99%

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Patient Empowerment and Associations with Disease Activity and Pain‐Related and Lifestyle Factors in Patients With Rheumatoid Arthritis

Larsson

Bremander

Andersson

2021

ACR Open Rheumatology

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Background. Empowerment is important to patients with rheumatoid arthritis (RA) because most care is in the form of self-management. The aim was to study levels of empowerment and associated variables in patients with RA and to investigate longitudinal clinical data in patients with low and high empowerment.Methods. A postal survey was sent in 2017 to patients with RA from the BARFOT (Better Anti-Rheumatic Pharmacotherapy) cohort that included questions about disease activity, pain-related factors, lifestyle habits, and contained the Swedish Rheumatic Disease Empowerment Scale (SWE-RES-23). The 844 patients who answered the SWE-RES-23 made up the cohort of the present study. Differences in level of empowerment between groups (low, moderate, and high empowerment) were analyzed with ANOVA. Logistic regression analysis was used to study variables associated with low empowerment. Thirdly, we performed comparisons in longitudinal data (15 years) of disease activity, pain, and physical function between the three empowerment groups (low, moderate, and high empowerment).Results. Patients with low empowerment (n = 282) were significantly older, more often women, and reported worse pain-related factors and physical function and lower moderate and vigorous physical activity compared with those with high empowerment (n = 270). An analysis of longitudinal data found that patients with low empowerment had worse pain and physical function at all time points. Conclusion.Patients with low empowerment have more pain-related symptoms, poorer physical function, and are less physically active. To promote patient empowerment in rehabilitation interventions it is important to identify and support self-management.Health Organization states that empowerment is a process to gain greater control over decisions and actions influencing health and to obtain the ability to control one's life. The empowerment process entails involving patients to understand their role, receive adequate individual patient education, and receive encouragement to become co-actors in shared decisionmaking and make informed decisions regarding their health and life (5). For patients with RA, being empowered means that patients have a belief in their own capacity to manage everyday life, which could cover managing fatigue, pain, and physical functioning. Managing a chronic disease, such as RA, entails patients being able to make informed decisions and change their priorities, with a view to optimizing their quality of life (6). Among patients with RA, it has been seen that the focus on No funding was received for this article.

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Rheumatische Erkrankungen

Kapfhammer¹

2022

Depression, Angst, Traumatischer Stress Und Internistische Erkrankungen

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The experience of living with rheumatoid arthritis: A qualitative metasynthesis

Cited by 11 publications

References 48 publications

Belonging, happiness, freedom and empowerment—a qualitative study of patients’ understanding of health in early rheumatoid arthritis

Belonging, happiness, freedom and empowerment—a qualitative study of patients’ understanding of health in early rheumatoid arthritis

Patient Empowerment and Associations with Disease Activity and Pain‐Related and Lifestyle Factors in Patients With Rheumatoid Arthritis

Rheumatische Erkrankungen

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