A scoping review of the literature on benefits and challenges of participating in patient education programs aimed at promoting self-management for people living with chronic illness

Stenberg, Una; Haaland‐Øverby, Mette; Fredriksen, Kari; Westermann, Karl Fredrik; Kvisvik, Toril

doi:10.1016/j.pec.2016.07.027

Cited by 121 publications

(133 citation statements)

References 95 publications

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“…Compared with existing evidence for other chronic illness populations, the number of studies about self-management among cancer patients is limited 10–13. However, in recent years some cancer-specific concepts for self-management support have also been developed 14–16.…”

Section: Introductionmentioning

confidence: 99%

Complexity of care and strategies of self-management in patients with colorectal cancer

Ose¹,

Winkler²,

Berger³

et al. 2017

PPA

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PurposeGiven the inherent complexity of cancer care, in which personal, social, and clinical aspects accumulate and interact over time, self-management support need to become more comprehensive. This study has the following two aims: 1) to analyze and describe the complexity of individual patient situations and 2) to analyze and describe already established self-management strategies of patients to handle this complexity.MethodsA qualitative study was conducted. Ten focus groups were performed collecting perspectives of the following three user groups: patients with colorectal cancer (n=12) and representatives from support groups (n=2), physicians (n=17), and other health care professionals (HCPs; n=16). Data were analyzed using qualitative content analysis.ResultsThe results showed that cancer patients are struggling with the complexity of their individual situations characterized by the 1) “complexity of disease”, 2) “complexity of care”, and 3) “complexity of treatment-related data”. To deal with these multifaceted situations, patients have established several individual strategies. These strategies are “proactive demanding” (eg, to get support and guidance or a meaningful dialog with the doctor), “proactive behavior” (eg, preparation of visits), and “proactive data management” (eg, in terms of merging treatment-related data and to disseminate these to their health care providers).ConclusionPatients with colorectal cancer have to handle a high complexity of individual situations within treatment and care of their disease. Private and social challenges have a culminating effect. This complexity increases as patients experience a longer duration of treatment and follow-up as patients have to handle a significantly higher amount of data over time. Self-management support should focus more on the individual complexity in a patient’s life. This includes assisting patients with strategies that have already been established by themselves (like preparation of visits).

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Section: Introductionmentioning

confidence: 99%

Complexity of care and strategies of self-management in patients with colorectal cancer

Ose¹,

Winkler²,

Berger³

et al. 2017

PPA

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“…The analyses revealed how the informants related their actions and behaviors to the information learned in the nurse-led PE intervention to live a good life. According to the literature on health promotion (Lindstrom & Eriksson, 2005) and underpinned by several studies on PE for patients with inflammatory polyarthritis (Barlow et al, 2009;Zangi et al, 2015), diabetes (Anderson & Funnell, 2010) and across different chronic diseases (Stenberg et al, 2016), knowing how to make use of one's own resources and capacity is essential to create good health. Supporting patients to live good lives by deliberating how to manage their illness is also in line with the overarching goal of patient education started decades ago (WHO, 1986), and a key task, function, and goal for clinical nurses (Henderson, 2006).…”

Section: Having a Good Lifementioning

confidence: 99%

“…Another strength is the transferability of the findings. A rich description of the context and the participants is provided (Malterud, 2001), and the knowledge is applicable to patients with other chronic diseases as well (Stenberg et al, 2016). The themes in this nurse-led PE intervention are similar to those delivered in PE interventions targeting patients with other chronic illnesses.…”

Section: Sharing Experiencesmentioning

confidence: 99%

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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“…At the same time, they believe on the benefits of interaction between patients and expert patient trainers by strengthening social support, communication and empathy (4)(5)(6) . In 2008, the Ministry of Health launched the Escuela de Pacientes (School of Patients) in Andalusia.…”

Section: Introductionmentioning

confidence: 99%

Cronicidad y uso de servicios sanitarios: la formación entre iguales de la Escuela de Pacientes

Danet

Rodríguez

Peña

et al. 2017

Rev. esc. enferm. USP

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Objective:To evaluate the impact of the training strategy of the Escuela de Pacientes (School of Patients) on the use of health services among people with chronic diseases. Method: Quantitative design study of pretest and posttest evaluation with a population of 3,350 chronic patients of the Escuela de Pacientes (Andalusia, 2013(Andalusia, -2015. A questionnaire adapted from the Stanford University was used. It measured the selfperceived health, number of health visits, and level of trust and communication with health personnel. A descriptive and bivariate study, a correlation study and a pretest/ posttest net gain analysis were performed. Results: Participation of 964 patients (28.8% of the population), of which 18.8% were men, mean age 56 years. Training increased trust in Primary Care (PC) and Hospital Care (HC) professionals (0.44 and 0.65 points), medical visits decreased by 25%, and hospital admissions fell by 51% with statistically significant differences by sex and disease. The correlation index between trust in professionals and use of health services was -0.215. Conclusion: The training strategy had a positive impact on the use of health services and trust in health professionals, and were identified areas of improvement from which recommendations are established.

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A scoping review of the literature on benefits and challenges of participating in patient education programs aimed at promoting self-management for people living with chronic illness

Cited by 121 publications

References 95 publications

Complexity of care and strategies of self-management in patients with colorectal cancer

Complexity of care and strategies of self-management in patients with colorectal cancer

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

Cronicidad y uso de servicios sanitarios: la formación entre iguales de la Escuela de Pacientes

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