“It is as if you were taking a shot in the dark”: Experiencing ambiguity in the pharmacological treatment of rheumatoid arthritis

Rheumatoid arthritis (RA) is a chronic disease that compromises patients’ quality of life and it demands an indispensable and complex pharmacological treatment. The aim of the present study was to understand patients’ experiences with the pharmacological treatment of RA. In order to explore this area, interviews were conducted with patients with RA followed at an outpatient clinic. Merleau-Ponty’s theoretical framework was applied to understand the investigated phenomenon by using the essential structures of the experience (time, space, relationships with other people, and sexuality, all of which are anchored in the body). These were used to describe the central meanings of the patients’ medication experience. The data showed that patients experienced ambiguity during the RA treatment and that it pervaded all the essential structures of the experience. The experiences that emerged from data analysis were: “waiting for the proper treatment”; “hoping for its effectiveness and safety”; “rediscovering spaces lost because of the disease”; and “self-management in controlling symptoms”. Understanding these experiences allows for the healthcare team to offer more comprehensive, holistic and effective care, contributing to better health outcomes.

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Health-related quality of life in rheumatoid arthritis: therapeutic education plus pharmacological treatment versus pharmacological treatment only

Rheumatology International ◽

10.1007/s00296-005-0071-6 ◽

2005 ◽

Vol 26 (8) ◽

pp. 752-757 ◽

Cited By ~ 27

Author(s):

Montserrat Núñez ◽

Esther Núñez ◽

Carmen Yoldi ◽

Llorenç Quintó ◽

Mª Victoria Hernández ◽

...

Keyword(s):

Quality Of Life ◽

Rheumatoid Arthritis ◽

Pharmacological Treatment ◽

Therapeutic Education ◽

Health Related Quality ◽

Related Quality ◽

Health Related

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Comparisons of Body Image Perceptions of a Sample of Black and White Women with Rheumatoid Arthritis and Fibromyalgia in the US

The Open Rheumatology Journal ◽

10.2174/1874312901409010001 ◽

2015 ◽

Vol 9 (1) ◽

pp. 1-7 ◽

Cited By ~ 8

Author(s):

Josephine E.A Boyington ◽

Britta Schoster ◽

Leigh F Callahan

Keyword(s):

Quality Of Life ◽

Rheumatoid Arthritis ◽

Health Care ◽

Body Image ◽

White Women ◽

The Body ◽

Activity Limitations ◽

Body Parts ◽

Mental Function

Objective : To explore the disease-related, body image (BI) perceptions of women diagnosed with, rheumatoid arthritis (RA) and fibromyalgia (FM). Methods : A purposive sample of twenty-seven females participated in individual semi-structured phone interviews to elicit BI perceptions relative to pain, activity limitations and coping measures. Sessions were digitally recorded, transcribed verbatim, and content analyzed. Results : Body image perceptions relative to 5 major themes emerged in the analysis. They focused on Pain, Disease Impact on Physical and Mental Function, Weight, Diseased-Induced Fears and, Coping measures. Pain was a common experience of all participants. Other troubling factors verbalized by participants included dislike and shame of visibly affected body parts, and disease-induced social, psychological and physical limitations. RA participants thought that manifested joint changes, such as swelling and redness, undergirded their prompt diagnosis and receipt of health care. Contrarily, women with fibromyalgia perceived that the lack of visible, disease-related, physical signs led to a discounting of their disease, which led to delayed health care and subsequent frustrations and anger. All but one participant used prayer and meditation as a coping measure. Conclusion : The body image perceptions evidenced by the majority of participants were generally negative and included specific focus on their disease-affected body parts (e.g. joints), mental function, self-identity, health care experiences, activity limitations and overall quality of life. Given the global effect of RA and FM, assessment and integration of findings about the BI perceptions of individuals with FM and RA may help define suitable interdisciplinary strategies for managing these conditions and improving participants’ quality of life.

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Perceived Effects of a Somatic Psychopedagogy (SPP) Program in Nurse Training: An Exploratory Study

International Journal of Whole Person Care ◽

10.26443/ijwpc.v1i1.57 ◽

2014 ◽

Vol 1 (1) ◽

Author(s):

Josée Lachance ◽

Pierre Paillé ◽

Jean-François Desbiens ◽

Marianne Xhignesse

Keyword(s):

Health Care ◽

Sense Of Self ◽

Health Care Team ◽

The Body ◽

Healthcare Team ◽

Second Phase ◽

Nurse Training ◽

Structured Interviews ◽

Care Giving

Background: Developed in Europe in the 1980’s, somatic psychopedagogy (SPP) is a formative practice geared toward care giving and support. Characterized as a type of mind-body medicine, it examines how the use of the body and its movement allows for the development of one’s conscience, one’s sense of self and of others, which are all desirable qualities for professionals within the health care sector.Purpose: To explore if and how SPP training followed by nurses modifies their perception of the quality of their self awareness, their presence in regard to others, as well as their relationship with respect to health and their professional practice.Methods: Qualitative research based on two types of semi-structured interviews: comprehensive and elicitation. Exploratory interviews with three nurses trained (or in training) in SPP. The content of the interviews was first analyzed thematically then grouped by categories.Findings: The three participants perceived a change in the quality of their presence with respect to themselves and to others as well as changes within the nature of their relationships with their patients, colleagues and healthcare team members. Content analysis of the interviews has allowed us to conclude that relationships with the health care team evolved into a better ability to give recognition and a better quality of interaction between members. Participants also reported an increased ability to express their opinions in both their personal and professional lives. A second level of analysis has allowed for the identification of differences between nurses just finishing their first year of training and those having completed the full four-year course.Conclusion: Interesting transformations are reported at different levels confirming the relevance of a second phase of the project. The latter will permit to identify whether physicians trained in SPP experience changes similar to those of the nurses, and if so, whether they perceive these as having an impact on their practice.

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From the experience of planning a life with diabetes to the mechanisms of the management of illness

European Journal of Public Health ◽

10.1093/eurpub/ckz186.207 ◽

2019 ◽

Vol 29 (Supplement_4) ◽

Author(s):

M M Mathilde ◽

W A André ◽

K N P Paul

Keyword(s):

Quality Of Life ◽

Improve Patient Care ◽

Lessons Learned ◽

The Body ◽

Therapeutic Education ◽

Self Management ◽

Diabetic Patients ◽

Sources Of Information ◽

Forms Of Knowledge

Abstract Background In the context of chronic diseases, it is now recognized that experiences of planning a new life with diabetes are very informative, and are a source of knowledge that can be used to improve patient care and quality of life. However, the professionals in health and the patients’ therapeutic education are still struggling to translate this knowledge into their practices or to make use of it, as long as its forms remain largely unknown and it is not known how to identify these. Objective: The study aims to identify these knowledges and to report on how it is produced, based on an analysis of the experiences of diabetic patients in Yaoundé, Cameroon. Methods The study combines a phenomenographic approach aiming at ethnographing the form and contents of lessons learned from life experiences with diabetes; and an operation of reflexive ethnography centered on the patient, apprehending the process of elaboration or production of these teachings. It includes six diabetics selected from the typical sampling method. The data collected were analysed using paradoxical analysis and interpreted in a pragmatic perspective. Results The results reveal various mechanisms of self-management of the disease and stigma, developed by patients, such as: identity recomposition; valorization of treatment by promoting its benefits to others; control of information about one’s illness oscillating between concealment and disclosure; therapeutic adjustments according to the life situations or interactions; rearrangement of individual and family habits; listening and decoding of the language of illness, body and the effects of food on the body; learning of conceptualized knowledge about diabetes and nutrition through various sources of information. Conclusions the study suggests that these mechanisms should be considered as relevant forms of knowledge; and the should be used to improve both preventive, therapeutic and educational practices and the quality of life of the diabetics. Key messages The mechanisms of self-management of diabetes and stigma develop by diabetics trough their experience of planning a new life with diabetes should be considered as relevant forms of knowledge. These mechanisms should be used by health professionnals and patients’ education professionals to improve their practices and the quality of life of diabetics.

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Potential role of bioactive lipids in rheumatoid arthritis

Current Pharmaceutical Design ◽

10.2174/1381612827666210525164734 ◽

2021 ◽

Vol 27 ◽

Author(s):

Wheeler Torres ◽

Mervin Chávez-Castillo ◽

José L. Peréz-Vicuña ◽

Rubén Carrasquero ◽

María P. Díaz ◽

...

Keyword(s):

Rheumatoid Arthritis ◽

Potential Role ◽

The Body ◽

Omega 3 ◽

Bioactive Lipids ◽

Dietary Interventions ◽

Complex Disorder ◽

Inflammatory Autoimmune Disease

: Rheumatoid arthritis (RA) is a chronic inflammatory autoimmune disease, which involves a pathological inflammatory response against articular cartilage in multiple joints throughout the body. It is a complex disorder associated with comorbidities such as depression, lymphoma, osteoporosis and cardiovascular disease (CVD), which significantly deteriorate patients’ quality of life and prognosis. This has ignited a large initiative to elucidate the physiopathology of RA, aiming to identify new therapeutic targets and approaches in its multidisciplinary management. Recently, various lipid bioactive products have been proposed to have an essential role in this process; including eicosanoids, specialized pro-resolving mediators, phospholipids/sphingolipids, and endocannabinoids. Dietary interventions using omega-3 polyunsaturated fatty acids or treatment with synthetic endocannabinoids agonists have been shown to significantly ameliorate RA symptoms. Indeed, the modulation of lipid metabolism may be crucial in the pathophysiology and treatment of autoimmune diseases.

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The Burden of Pharmacological Treatment on Health-Related Quality of Life in People with a Urea Cycle Disorder – A Qualitative Study

10.21203/rs.3.rs-133654/v1 ◽

2020 ◽

Author(s):

Gillian Yeowell ◽

Danielle Burns ◽

Francis Fatoye

Keyword(s):

Quality Of Life ◽

Psychological Health ◽

Pharmacological Treatment ◽

Urea Cycle ◽

The Body ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

The Impact

Abstract Background Urea cycle disorders (UCD) are a group of conditions of inborn errors of metabolism, typically presenting neonatally. Excess ammonia builds rapidly within the body, risking hyperammonemic episodes and potentially death. Long-term management of the condition includes restrictive protein consumption, pharmacological interventions and, in extreme cases, liver transplantation. Pharmacological treatments such as sodium benzoate and sodium phenylbuturate have proven effective but not without a multitude of negative attributes including poor taste, elevated volume and associated gastrointestinal discomfort that impacts on health-related quality of life. Glycerol phenylbutyrate (GPB) has recently become a widely available pharmacological treatment with early reports of improved qualities. The following study aims to explore the burden of pharmacological treatment on health-related quality of life in people with a UCD. Results 9 carers of people living with a UCD were interviewed regarding their experiences of pharmacological treatment in relation to their, and their dependent’s health-related quality of life after transitioning to GPB. Three main themes were identified following data analysis: psychological health, physical health and social participation. Carers struggled with anxiety surrounding their dependent’s condition and the relentless battle of administering medication. Medication administration was perceived to have improved since the transition to GPB, alleviating distress for both carer and dependent. Issues involving schooling were commonly described, ranging from difficulties integrating their dependent into mainstream schooling and the impact of treatment on participation in school and extracurricular activities. Based upon participant’s experiences, it could be suggested that some burden had been relieved by the transition to GPB. However, it appeared that the burden would persist despite treatment, owing to the continuing nature of the condition. Conclusions Adhering to a strict pharmacological regime caused immense stress for both carers and dependents, severely impacting on typical social activities such as eating at a restaurant or going on holiday. GPB was perceived to have alleviated some burden in terms of administration. Practitioners should consider these findings when making clinical decisions for UCD patients and the effect of pharmacological treatment on health-related quality of life. Emotional support resources should be made readily available to families to assist with daily living.

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Cardiovascular interventions for immigrant women : a scoping review

10.32920/14669082.v1 ◽

2021 ◽

Author(s):

Suzanne Fredericks ◽

Sepali Guruge

Keyword(s):

Cardiovascular Disease ◽

Scoping Review ◽

Immigrant Women ◽

The Body ◽

Self Management ◽

Trained Research Assistant ◽

Culturally Sensitive Interventions ◽

Cardiovascular Interventions ◽

Management Behaviors

The purpose of this scoping review is to identify cardiovascular interventions that are designed to address the needs of immigrant women across North America and Europe. The articles retrieved were reviewed independently by both the first author and a trained research assistant. Although the search revealed many articles and resources related to supporting cardiovascular self-management behaviors among individuals, few focused on interventions designed for immigrant women who were diagnosed and living with cardiovascular disease. Also, it was difficult to determine the quality of the literature retrieved, as the main goal of this scoping review was to assess the body of literature and categorize materials by common themes and topics. A more in-depth structured systematic review is needed to determine the quality of evidence being presented and to serve as a rationale for the design and implementation of future culturally sensitive interventions delivered to immigrant women diagnosed with cardiovascular disease.

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HUBUNGAN SELF MANAGEMENT DENGAN KUALITAS HIDUP PASIEN RHEUMATOID ARTHRITIS DI RUMAH SAKIT GRANDMED LUBUK PAKAM TAHUN 2021

JURNAL KEPERAWATAN DAN FISIOTERAPI (JKF) ◽

10.35451/jkf.v4i1.811 ◽

2021 ◽

Vol 4 (1) ◽

pp. 28-33

Author(s):

Anita Gandaria Purba ◽

Kuat Sitepu ◽

Arfah May Sara ◽

Jesiska Yolanda Sirait ◽

Nur Hamida Pohan

Keyword(s):

Quality Of Life ◽

Rheumatoid Arthritis ◽

Research Method ◽

Quantitative Research ◽

Design Research ◽

Self Management ◽

P Value ◽

Chi Square ◽

Cross Sectional

Rheumatoid arthritis is a autoimmune that causes a long period of inflammation in the joints. This might cause a deprcrease in the quality of life of a person resulting in limited activity and depression. The purpose of this study was to determine the relationship between self management and the quality of life of patients with rheumatoid arthritis . the research method uses quantitative research by using descriptive correlation research methods. Then this research uses a Cross sectional approach design research method and correlation design with a sampling total sampling, and the number of sample in this study was 25 respondents. The measuring instrument used in this research in a questionnaire. Data analysis was carried out using the chi-square tets, the result of this study showed that 18 people (51%) had a good self management and 17 people (49%) had a good quality of life. This show that there is a relationship between self managemnet and quality of life of rheumatoid arthritis patient at Grandmed Lubuk Pakam hospital in 2021 with the result of the chi-square test (p Value 0,001). Therefore, it is hoped that patients will be able to further improve self management so that the quality of life is getting better.

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Transcranial Electro-Psychocorrection in the Complex Treatment of Patients with Chronic Hepatitis C

Journal of New Medical Technologies ◽

10.12737/17038 ◽

2015 ◽

Vol 22 (4) ◽

pp. 132-138

Author(s):

Афонина ◽

E. Afonina ◽

Смекалкина ◽

L. Smekalkina

Keyword(s):

Chronic Hepatitis ◽

Hepatitis C ◽

Chronic Hepatitis C ◽

The Body ◽

Adaptation Level ◽

Complex Treatment ◽

Effective Care ◽

Combined Use ◽

Selection Of

The article presents the results of authors’ study of diagnosis and treatment of 90 patients with chronic hepatitis C. The necessity of an organization of effective care of these patients according to combined mental disadaptation was determined the relevance this study. Hepatitis C and its consequences are powerful physical and mental stress on the body, occupying one of the leading causes of disability among the population. Undetected and uncompensated timely signs of disadaptation may increase and eventually be transformed into forms difficult to treat. The purpose of this work was to investigate the efficacy of complex treatment of patients using the new non‐drug technologies of psychocorrection at the stage of a hospital. For comparative analysis, the psychodiagnostic and electro‐physiological examinations, the study of the adaptation level of and quality of life of patients were carried out. The use of a level approach to the diagnosis of mental status of patients allows to optimize the scheme of conventional treatment by differentiated selection of modern psycho‐methods. The obtained data prove that the combined use of physio‐ and psychotherapy (transcranial electropsychocorrection) is the most effective method to correct the health the health of patients with viral hepatitis C. This method can be recommended for inclusion in the system of medical and psycho‐social support to this contingent.

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A feasibility study on two tailored interventions to improve adherence in adults with haemophilia

Pilot and Feasibility Studies ◽

10.1186/s40814-020-00723-w ◽

2020 ◽

Vol 6 (1) ◽

Author(s):

J. W. Hoefnagels ◽

K. Fischer ◽

R. A. T. Bos ◽

M. H. E. Driessens ◽

S. L. A. Meijer ◽

...

Keyword(s):

Quality Of Life ◽

Rheumatoid Arthritis ◽

Illness Perception ◽

Online Intervention ◽

Self Management ◽

Face To Face ◽

Outcome Parameters ◽

Sf 36 ◽

The Face

Abstract Introduction Haemophilia is a congenital bleeding disorder mainly affecting males. To prevent bleeding, patients need to perform regular intravenous injections (prophylaxis) throughout life. Non-adherence often occurs. Problems with acceptance or self-management appear to be the main reasons for non-adherence in haemophilia. The aim of this study was to test the feasibility and effects of two interventions focussed on acceptance (face-to-face) and self-management (online). Methods Patients with severe haemophilia and acceptance or self-management problems were eligible. The face-to-face group intervention was based on Acceptance and Commitment Therapy (ACT) (8 sessions/6 months, target N = 8 participants). The online intervention was based on a successful online programme in rheumatoid arthritis (5–8 modules/2 months, target N = 8). Both interventions were designed according to the MRC framework in collaboration with the patient society and experts. We compared adherence (VERITAS-Pro, optimum 0), quality of life (SF-36, optimum 100) and illness perception (BIPQ, optimum 0) before start (T0) and after 2 months (T2). Feasibility criteria were as follows: completion of training by > 50% of participants and ability to collect at least 80% of outcome parameters. Results The face-to-face intervention was feasible (89% enrolment and recruitment, 100% retention). One hundred percent of the outcome parameters was collected. Results were promising: although adherence (VERITAS-Pro) was stable (from 64 to 62 points), quality of life (SF-36) showed a clinically relevant improvement (> 5 points) in five of eight domains. Illness perception (BIPQ) showed a clinically relevant increase from 47 to 39 points. Patient evaluation was positive. The online intervention, however, was infeasible: enrolment was only 20% (6/30). Only three patients signed informed consent (recruitment 10%), and none completed more than one module (retention 0%). Consequently, the online intervention was terminated. Conclusion The face-to-face acceptance intervention was considered feasible with promising results. Unfortunately, the online intervention was infeasible and therefore terminated. These findings suggest that adapting effective interventions to other settings does not guarantee success, despite the use of established methodology and patient participation. Population differences (only male participants, congenital disease) could be an explanation for failure of the online intervention in haemophilia despite success in rheumatoid arthritis. Trial registration NL55883.041.16

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