Patient empowerment: A critique of individualism and systematic review of patient perspectives

Agner, Joy; Braun, Kathryn L.

doi:10.1016/j.pec.2018.07.026

Cited by 46 publications

(65 citation statements)

References 45 publications

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“…It would be interesting to add a measure on shared decision making to determine whether women with higher health literacy, or alters who had higher health literacy, either felt more prepared or had a higher desire to engage in shared decision making. Shared decision making is critical to patient empowerment and engagement [83], but without sufficient information, (or people in their life who can help navigate the process) people tend to take a more passive role in health care encounters [84].…”

Section: Limitations and Future Studiesmentioning

confidence: 99%

Considering Health Literacy, Health Decision Making, and Health Communication in the Social Networks of Vulnerable New Mothers in Hawai‘i: A Pilot Feasibility Study

Sentell

Agner

Pitt

et al. 2020

IJERPH

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Health literacy is understudied in the context of social networks. Our pilot study goal was to consider this research gap among vulnerable, low-income mothers of minority ethnic background in the state of Hawai‘i, USA. Recruitment followed a modified snowball sampling approach. First, we identified and interviewed seven mothers (“egos”) in a state-sponsored home visiting program. We then sought to interview individuals whom each mother said was part of her health decision-making network (“first-level alters”) and all individuals whom the first-level alters said were part of their health decision-making networks (“second-level alters”). Health literacy was self-reported using a validated item. A total of 18 people were interviewed, including all mothers (n = 7), 35% of the first-level alters (n = 7/20), and 36% of the second-level alters (n = 4/11). On average, the mothers made health decisions with 2.9 people (range: 1-6); partners/spouses and mothers/mothers-in-law were most common. One mother had low health literacy; her two first-level alters also had low health literacy. Across the full sample, the average number of people in individuals’ health decision networks was 2.5 (range: 0–7); 39% of those interviewed had low health literacy. This can inform the design of future studies and successful interventions to improve health literacy.

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Section: Limitations and Future Studiesmentioning

confidence: 99%

Considering Health Literacy, Health Decision Making, and Health Communication in the Social Networks of Vulnerable New Mothers in Hawai‘i: A Pilot Feasibility Study

Sentell

Agner

Pitt

et al. 2020

IJERPH

Self Cite

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“…It is important to recall that empowerment as a concept, in general, emerged as a descriptor of a mental state or the process leading to such a mental state in a group of individuals [ 22 ]. The approach to try to understand and describe patient empowerment as a mental state by conducting qualitative patient interviews [ 23 ] is especially compelling in this regard and may also help to circumvent the conceptual uncertainties [ 12 , 24 ] related to the wide variety of different scholarly definitions. Moreover, patient-derived descriptions of patient empowerment reveal a remarkable pool of internal (patient-perceived) dimensions of patient empowerment, which are consistent among the different studies despite their contextual (disease-specificity, health care, and social background) discrepancies.…”

Section: Resultsmentioning

confidence: 99%

“…Based on the previously described conceptual considerations (see the section Theoretical Foundation for Developing the ICT4PEM Framework), constructs of PEM were selected based on qualitative studies aiming to understand the patient perspective in patient empowerment. The review performed by Agner et al [ 23 ] was used as a basis to identify conceptual elements that are common across the incorporated studies, irrespective of a specific disease or health care background. This selection consequently represents the core concept of perceived patient empowerment.…”

Section: Resultsmentioning

confidence: 99%

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Information and Communications Technology–Based Interventions Targeting Patient Empowerment: Framework Development

et al. 2020

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Background Empowerment of patients is often an explicit goal of various information and communications technology (ICT) (electronic, digital) interventions where the patients themselves use ICT tools via the internet. Although several models of empowerment exist, a comprehensive and pragmatic framework is lacking for the development of such interventions. Objective This study proposes a framework for digital interventions aiming to empower patients that includes a methodology that links objectives, strategies, and evaluation. Methods This study is based on a literature review and iterated expert discussions including a focus group to formulate the proposed model. Our model is based on a review of various models of empowerment and models of technology intervention. Results Our framework includes the core characteristics of the empowerment concept (control, psychological coping, self-efficacy, understanding, legitimacy, and support) as well as a set of empowerment consequences: expressed patient perceptions, behavior, clinical outcomes, and health systems effects. The framework for designing interventions includes strategies to achieve empowerment goals using different ICT services. Finally, the intervention model can be used to define project evaluations where the aim is to demonstrate empowerment. The study also included example indicators and associated measurement instruments. Conclusions This framework, which includes definitions, can be useful for the design and evaluation of digital interventions targeting patient empowerment and assist in the development of methods to measure results in this dimension. Further evaluation in the form of interventional studies will be needed to assess the generalizability of the model.

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“…For adolescents, being empowered is an important factor in their recovery and entails being listened to, being understood, taking control and making decisions for themselves [163]. Moreover, young persons have stated they feel empowered when they have the opportunity to see the healthcare providers by themselves and when they can communicate comfortably [160,164].…”

Section: Adolescents' Transition Experiences and Needsmentioning

confidence: 99%

Patient empowerment and its correlates in young persons with congenital heart disease

Mora

Sparud-Lundin

Burström

et al. 2019

European Journal of Cardiovascular Nursing

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Objective: The objective of this study was to measure the level of empowerment and identify its correlates in young persons with congenital heart disease. Study design: Patients aged 14-18 years with congenital heart disease, and under active follow-up in one of four paediatric cardiology centres in Sweden were invited to participate in a cross-sectional study. A total of 202 young persons returned the questionnaires. Patient empowerment was measured with the Gothenburg Young Persons Empowerment Scale that allows the calculation of total and subscale scores. Univariate and multivariate linear regression analyses were undertaken to analyse possible correlates, including: sex, age, health behaviours, knowledge of congenital heart disease, quality of life, patient-reported health, congenital heart disease complexity, transition readiness and illness perception. Results: The mean empowerment score was 54.6±10.6 (scale of 15-75). Univariate analyses showed that empowerment was associated with age, quality of life, transition readiness, illness perception, health behaviours and patient-reported health (perceived physical appearance, treatment anxiety, cognitive problems and communication issues). However, multivariable linear regression analyses identified that only transition readiness (β=0.28, P<0.001) and communication (β=0.36, P<0.001) had a positive association with patient empowerment. These variables were also significantly associated with the subscale scores of the empowerment scale of knowledge and understanding (P<0.001), shared decision-making (P<0.001) and enabling others (P<0.01). The overall models' explained variance ranged from 8% to 37%. Conclusion: Patient empowerment was associated with transition readiness and fewer problems communicating. While it is not possible to establish the directionality of the associations, interventions looking to increase empowerment could benefit from using these variables (or measurements) for evaluation purposes.

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Patient empowerment: A critique of individualism and systematic review of patient perspectives

Cited by 46 publications

References 45 publications

Considering Health Literacy, Health Decision Making, and Health Communication in the Social Networks of Vulnerable New Mothers in Hawai‘i: A Pilot Feasibility Study

Considering Health Literacy, Health Decision Making, and Health Communication in the Social Networks of Vulnerable New Mothers in Hawai‘i: A Pilot Feasibility Study

Information and Communications Technology–Based Interventions Targeting Patient Empowerment: Framework Development

Patient empowerment and its correlates in young persons with congenital heart disease

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