Gaining perspective on own illness – the lived experiences of a patient education programme for women with treated coeliac disease

Jacobsson, Lisa Ring; Milberg, Anna; Hjelm, Katarina; Friedrichsen, Maria

doi:10.1111/jocn.13123

Cited by 6 publications

(6 citation statements)

References 33 publications

(64 reference statements)

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“…They used the knowledge, experienced that learning new things was motivating, and it helped the patients to make choices that felt right for the individual patient. Findings in this study also confirm already existing knowledge about the value of patients sharing their experiences about managing chronic illness (Ring Jacobsson, Milberg, Hjelm, & Friedrichsen, 2016). Particularly the dialogs on how others managed their disease and what composed normal symptoms in arthritis were valued in this study.…”

Section: Discussionsupporting

confidence: 76%

Patients’Perceptions of Having a Good Life One Year after Arthritis Patient Education: A Qualitative Study Nested within a Randomized Controlled Trial

Grønning

Bratås

Steinsbekk

2017

Nurs. Med. J. Nursing

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Background: Patients with inflammatory polyarthritis have various degrees of diseaserelated challenges such as joint pain, stiffness, fatigue, and physical limitations. Despite these challenges, patients strive for a good life using their personal resources, often taught in patient education. The effect of patient education in polyarthritis is well studied; however, long-term studies on what patients perceive as a good life after participating in arthritis patient education are scarce. Purpose: The aim of this study was to explore patients' perceptions of having a good life one year after attending a nurse-led patient education intervention. Methods: This was a qualitative study nested within a randomized controlled trial (RCT) studying the effect of nurse-led patient education. Fifteen individual semistructured interviews were conducted among those who attended the nurse-led patient education intervention. The intervention focused on the consequences of living with chronic inflammatory arthritis. The interviews explored how and whether the intervention had made any changes in the informants perceived health, well-being, arthritis, flares, and treatment regimes. The data were analyzed thematically using systematic text condensation. Results: The findings showed that the informants' perceptions of having a good life were related to a stable disease with few symptoms, effective treatment regimes, discovering new opportunities and perspectives in life, as well as making choices that felt right. Creating a good life was something the informants had acquired knowledge about in the nurse-led patient education intervention, particularly in the part where they had discussed and shared experiences with each other on how they managed their arthritis in different ways and settings. Conclusion: Participating in a nurse-led patient education intervention in arthritis helped the informants to discover new opportunities and perspectives on creating a good life, especially through exchanging experiences with fellow patients.

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Section: Discussionsupporting

confidence: 76%

Patients’Perceptions of Having a Good Life One Year after Arthritis Patient Education: A Qualitative Study Nested within a Randomized Controlled Trial

Grønning

Bratås

Steinsbekk

2017

Nurs. Med. J. Nursing

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“…Our results suggest that the use of an educational programme could improve the categories described in the qualitative interviews, so one of the future lines of research could be to reinterview women after completing an educational programme on coeliac disease (Ring Jacobsson et al . ).…”

Section: Discussionmentioning

confidence: 97%

“…Confirmability was ensured by providing quotes from the interviews as examples of explicated meanings, and to show transferability, a rich description of the context of participants is provided (Ring Jacobsson et al . ). All the authors were involved in the validation of the results, questioning each step of the analysis to check for the possible alternative interpretations.…”

Section: Methodsmentioning

confidence: 97%

Using mixed‐methods research to study the quality of life of coeliac women

Rodríguez‐Almagro

Martínez

Solano-Ruiz

et al. 2016

Journal of Clinical Nursing

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AimsTo research the quality of life of Spanish women with coeliac disease Background Coeliac women express lower quality of life than male coeliacs. DesignExplanatory sequential approach using mixed methods and with a gender perspective. MethodsThe research was carried out between May and July 2015. In its quantitative stage it aims to determine the health-related quality of life (HRQoL) in a representative sample (n=1097) of Spanish adult women with coeliac disease using a specific questionnaire named CD-QOL. In its qualitative phase it aims to describe the life experiences of a woman with coeliac disease in a qualitative manner by means of interviews (n=19) with a semi-structured script. Quantitative data were analysed using SPSS 20 and presented in descriptive statistics. Qualitative data were analysed using directed content analysis. ResultsThe quantitative process gave us values on the four aspects studied: dysphoria, disease limitations, health problems, and inadequate treatment. These aspects allowed us to create a qualitative process, based on which we generated an interview, from which four lager categories emerged. These categories were: feelings at diagnosis, limitations in day-to-day life, social perceptions of the disease, and personal meanings of coeliac disease. Thus both phases of our project are totally connected. There was a high level of congruence between quantitative scores and narratives. ConclusionThis study shows us the strong points of mixed methods in health sciences. The mixed-method strategy gave us a wider view of the experience of women living with coeliac disease. In our case, a strength and not a limitation is having performed the quality of life study in coeliac women using a mixed methodology, approaching the experience of being a coeliac woman in Spain in two different but complementary ways. The quantitative and qualitative data allowed us to interpret the experiences of our participants.

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“…Face-to-face nutrition counseling is provided by RDNs or nutritionists, and involves tailoring or personalizing nutrition information to the patients’ requirements and lifestyle with the target of facilitating behavior change [ 37 ]. Face-to-face nutritional interventions are known to be effective in weight and dietary changes [ 38 ], and research has also shown that face-to-face nutrition care is important for feeling empowered, connected, and supported [ 39 ]. However, face-to-face nutrition counseling can be expensive and time consuming and may not be accessible to everyone [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

Telenutrition: Changes in Professional Practice and in the Nutritional Assessments of Italian Dietitian Nutritionists in the COVID-19 Era

et al. 2022

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The COVID-19 pandemic has brought about various restrictions around the world, and its impact on healthcare has been enormous: RDNs have had to shift from in-person interactions with clients to telenutrition consultations, encountering obstacles. We designed the first survey to investigate the changes in RDN practices related to telenutrition provision after the onset of the pandemic through an online survey in Italy. Four hundred and thirty-six responses were analyzed. Before the pandemic, only 16% of Italian RDNs provided telenutrition; this percentage increased significantly up to 63% (p < 0.001). Among patients, the lack of interest in accessing telenutrition (30.9%) and the Internet (16.7%) were the most frequently reported barriers. Among RDNs, one of the main obstacles was their inability to conduct nutritional evaluation or monitoring activities (24.4%). Our survey indicated that increased adoption of telenutrition can be a valid, safe alternative to face-to-face visits. Telenutrition was mainly used by young RDNs (20–39 years) with fewer years of professional experience (0–20 years) and master’s degrees. Remote nutrition can enable RDNs to maintain normal workloads and provide patients with uninterrupted access to nutritional healthcare. It is important that RDNs using telemedicine resources possess the ability to provide high-quality, efficient, and secure services using evidence-based guidance.

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Gaining perspective on own illness – the lived experiences of a patient education programme for women with treated coeliac disease

Abstract: When designing a patient education programme it seems important to consider the needs of persons to meet others with the same disease, and to ask them about their need for knowledge, rather than simply assuming that health care professionals know what they need.

Cited by 6 publications

References 33 publications

Patients’Perceptions of Having a Good Life One Year after Arthritis Patient Education: A Qualitative Study Nested within a Randomized Controlled Trial

Patients’Perceptions of Having a Good Life One Year after Arthritis Patient Education: A Qualitative Study Nested within a Randomized Controlled Trial

Using mixed‐methods research to study the quality of life of coeliac women

Telenutrition: Changes in Professional Practice and in the Nutritional Assessments of Italian Dietitian Nutritionists in the COVID-19 Era

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