Empowerment Ladder - Climbed by Change Makers in Health

By Mark Barone, PhD

It is common sense that individuals living with chronic conditions should be empowered to selfcare. Health education is a key component for providing knowledge and developing skills that allow individuals to gain health literacy and understand their condition to engage in their self-management. According to Soresen et al. (2012), the most frequently cited definitions for health literacy "focus on individual skills to obtain, process and understand health information and services necessary to make appropriate health decisions". Health education comes as an indispensable partner with its different techniques and tools to promote health. While health literacy is fundamental for everyone to stay healthy, through specialized health education individuals with a specific health condition develop the skills they need for selfcare. 

Health education has empowerment as a goal, which according to Anderson and Funnell (2010) means to “increase the capacity of patients to think critically and make autonomous, informed decisions”. We do not disagree, but we believe that individuals living with a health condition, such as a noncommunicable disease (NCDs), can be further empowered to act for improving health in their community or the entire society. After fouding and managing leadership training for individuals with diabetes and other NCDs for more than a decade, we published the Empowerment Ladder (EL) offering a framework to map and plan empowerment initiatives. It is composed of three stages, each one with two to three steps. The first or self stage goes from diagnosis to self-leadership, the other following two EL stages (community and society) focus on the capacity to acts on broader groups and environments and influence groups (Ugliara Barone et al. 2021).

The EL was tested in youth with diabetes who took a leadership training in Brazil, and had their position on the EL pre and post training analysed. While the study is limited geographically and by a single homogenous group, the framework was built thinking of different groups, especially of people with a variety of NCDs (Barone et al. 2019). Nonetheless, our experience with capacity building for gender equity suggests that a similar EL would be climbed by the girls that are empowered to influence policies. It is also worth mentioning that individuals from different countries and chronic health conditions have already contacted the authors acknowledging its apparent usefulness and declaring that they find that it fitted their “climbing story”, as leaders living with NCDs. In the published test of the EL, all individuals moved to higher levels in the EL. Even the three cases cited as individuals that remained, clearly climbed to a higher step in the same stage (self, community of society).

The highest value of the EL is presumably its utility to plan the interventions for empowering individuals and allow them to achieve different steps in higher stages of the latter. As explored in the article, in the past - and still in certain cultures - the active participation of individuals living with a health condition in the decision making table was not welcome. At the same time, this has been rapidly changing. While in most countries the claim “nothing about me without me” is loudly heard, the seat belonging to individuals with NCDs or other health conditions with vote power is usually not there. Thus, the EL framework, where individuals who propose innovations/solutions and advocate (society stage) can be identified and plans for climbing from the previous (self and community) to higher stages can be developed, may be of good use to prepare the so needed individuals with capacity to represent their peers, fight for their seats in all decision tables and advocate for better health policies and programs. It is worth reminding that individuals with health conditions are always the final decision makers. They, at the end, decide to join a health program or not, follow medical recommendations or not, take the incorporated drug or not. Therefore, it is a mistake to leave them apart from the decision processes from the beginning. Their needs and views must be considered and we believe that the EL is useful to identify and prepare them for this key active role. 

References

Anderson RM, Funnell MM. Patient empowerment: myths and misconceptions. Patient Educ Couns. 2010 Jun;79(3):277-82. doi: 10.1016/j.pec.2009.07.025. Epub 2009 Aug 13. PMID: 19682830; PMCID: PMC2879465.

Barone MTU, Galastri LL, Pineda-Wieselberg RJ, et al. (2019) Empowerment Ladder: The path experienced by activated leaders with diabetes and other noncommunicable diseases (NCDS). Diabetes Technology & Therapeutics 21(s1): 154.

Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, Brand H; (HLS-EU) Consortium Health Literacy Project European. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012 Jan 25;12:80. doi: 10.1186/1471-2458-12-80. PMID: 22276600; PMCID: PMC3292515.

Ugliara Barone MT, Chaluppe M, Ripoli P, et al. The Empowerment Ladder: Understanding transition across leadership stages in individuals with type 1 diabetes and other noncommunicable diseases. Health Education Journal. January 2021. doi:10.1177/0017896920983837