A systematic review of interventions to improve knowledge and self-management skills concerning contraception, pregnancy and breastfeeding in people with rheumatoid arthritis

Background:The course of rheumatoid arthritis (RA) differs from patient to patient, and each patient has a unique story. The disease condition affects psychological and social aspects, greatly affecting the quality of life. The disease course is unpredictable, and each patient’s story can be seen as a lifelong journey, full of ups and downs. Therefore, it is crucial to know what kind of support is required during the course of their life.Objectives:The aim of this study is to examine the life story of patients with RA and clarify a common situation in their stories in order to consider what kind of support is needed.Methods:This is a qualitative study using life story interview for patients with RA in Japan. Interview included disease history, patients’ behaviors, effects on daily life, the patients’ perspectives regarding psychological considerations and useful support. Data were analyzed using content analysis. This study was approved by the ethics committee and informed consent was obtained.Results:Eight patients participated in this study. They were all females and the average age was 57 years old. As a result of the categorization, we extracted the following eight situations: (1) Emergence of symptom; patients thought joint pain would go away, however, the symptom did not improve and began to affect their daily life and work, (2) Choose a hospital to visit; pain and anxiety have continued and decided to visit a hospital, (3) Encounter with their doctors; patients expected their doctor to relieve their pain, while they were afraid of being told that they were suffering from a serious disease. (4) Diagnosis of RA; patients were shocked when diagnosed and anxious about what would happen and wondered why they had such a disease, (5) Choice of treatment; patients were afraid of the side effects. They wanted to make a decision discussing with their doctor, but they could not understand the explanation about drugs well and, therefore, followed the doctor’s opinion. (6) Change of treatment; a biological agent was often recommended. Patients were also worried about side effects and the financial burden. (7) Remission or stable phase; they felt better mentally too, however, they often felt anxiety about disease flare, side effect of drugs and financial burden, and (8) Flare and remission; patients felt shocked and disappointed when RA flared, and then, they noticed that patients with RA had alternating periods of relapse and remission and they had to live with RA.These interviews revealed repeated worsening and improvement of symptoms and many similar repeated psychological reactions such as anxiety, shock, denial, conflict, acceptance, giving up and relief. To cope with these fluctuating disease and mental conditions, patients were supported by educational and psychological assistance, timely consultations, social life help from nurses and support from their family. The patients considered a trusting relationship with their doctors is necessary. The patients had also realized through their experience the importance of enhancing their own abilities, such as decision-making, prevention of infections and self-management skills. Moreover, they noticed that it is important to have their own goals including hobbies and work.Conclusion:This study elucidated the common behaviors of patients with RA, the impact of RA on their psychological state and daily and social life, and the required support. The psychological condition and daily and social life also had a great influence on medical behavior. Therefore, psychosocial support and establishment of trust between healthcare professionals and patients are crucial. In addition, improving patients’ self-management skills including self-efficacy and empowerment is also necessary. As patients with RA often feel anxious in various situations and expect nurses’ support, nurses should listen to patients, pay attention to their concerns and anxieties, and show a solution-oriented attitude. In order for patients to feel at ease in their Patient Journey, nurses should sail with them while maintaining a patient-centered perspective.Disclosure of Interests:None declared

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Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review

Journal of Medical Internet Research ◽

10.2196/13579 ◽

2019 ◽

Vol 21 (11) ◽

pp. e13579 ◽

Cited By ~ 6

Author(s):

Yisselle Ilene Virella Pérez ◽

Sharon Medlow ◽

Jane Ho ◽

Katharine Steinbeck

Keyword(s):

Systematic Review ◽

Chronic Illness ◽

Young People ◽

Physical Health ◽

Chronic Illnesses ◽

Self Management ◽

Management Skills ◽

Adult Care ◽

Web Based ◽

Care Services

Background More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. Objective This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. Methods We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. Results A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. Conclusions There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. Trial Registration PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=104611

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Follow-Up Support for Effective type 1 Diabetes self-management (The FUSED Model): A systematic review and meta-ethnography of the barriers, facilitators and recommendations for sustaining self-management skills after attending a structured education programme

BMC Health Services Research ◽

10.1186/s12913-018-3655-z ◽

2018 ◽

Vol 18 (1) ◽

Cited By ~ 6

Author(s):

Fiona Campbell ◽

Julia Lawton ◽

David Rankin ◽

Mark Clowes ◽

Elizabeth Coates ◽

...

Keyword(s):

Systematic Review ◽

Type 1 Diabetes ◽

Education Programme ◽

Self Management ◽

Management Skills ◽

Structured Education

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Use of Teach-Back Methodology to Promote Self-management and Treatment Adherence in Children With Chronic Illness: a Systematic Review and Meta-analysis Protocol

10.21203/rs.3.rs-247424/v1 ◽

2021 ◽

Author(s):

Patrick McCrossan ◽

Kathryn Ferris ◽

Michael Shields ◽

Dara O'Donoghue

Keyword(s):

Systematic Review ◽

Chronic Illness ◽

Meta Analysis ◽

Young Person ◽

Self Management ◽

Management Skills ◽

Levels Of Care ◽

Meta Analyses ◽

Care Worker ◽

Analysis Protocol

Abstract Introduction Chronic disease in childhood is becoming more prevalent worldwide. Self-management skills can only be taught with effective communication between the health care worker and the patient or primary care provider. ‘Teach-back’ is one proposed method for providing this education which has yielded success in adult populations but is not yet fully employed in the paediatric setting. Aims To determine whether the ‘teach-back’ technique is effective and feasible at all levels of care (primary, secondary and tertiary) to improve the self-management skills and knowledge required for a young person, or their parent/guardian, to control their chronic illness. Methods We have developed a protocol for a systematic review and meta-analyses in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol (PRISMA-P) statement and have registered it with Prospero [CRD42021229025].

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Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review (Preprint)

10.2196/preprints.13579 ◽

2019 ◽

Cited By ~ 1

Author(s):

Yisselle Ilene Virella Pérez ◽

Sharon Medlow ◽

Jane Ho ◽

Katharine Steinbeck

Keyword(s):

Systematic Review ◽

Chronic Illness ◽

Young People ◽

Physical Health ◽

Chronic Illnesses ◽

Self Management ◽

Management Skills ◽

Adult Care ◽

Web Based ◽

Care Services

BACKGROUND More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. OBJECTIVE This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. METHODS We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. RESULTS A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. CONCLUSIONS There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs.

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