Authors:

Abstract

Introduction

Individuals who take medications regularly may experience challenges with making decisions about risks versus benefits, managing side effects, and integrating medication management with other aspects of life such as social and work responsibilities. However, existing medication self-management frameworks are primarily adherence-focused and lack a holistic perspective. This study aimed to explore what Canadian adults, with experience taking daily medication, can contribute to our understanding of medication self-management.

Methods

Concept mapping is a participatory action research approach with three stages: brainstorming, sorting/rating, and mapping. During brainstorming, group discussions were held with participants who generated statements about what matters to them regarding medications in their everyday lives. In sorting/rating, participants individually grouped statements into thematic piles and rated their importance and feasibility. During mapping, a group discussion was held where a subset of participants agreed on a visual map and named the clusters of statements. Following mapping, rating results were analysed and compared by participant characteristics (gender, age, duration of medication use, number of medications and chronic conditions).

Results

Sixty-three participants generated 1044 statements during the brainstorming sessions (n=8), which we synthesized into 94 statements. Statements identified priorities related to medication administration, social impact, and healthcare provider interactions. Fifty-four participants sorted the statements and rated their importance and feasibility. Regardless of participant characteristics, most statements were rated highly on both importance and feasibility. Eight participants attended the final mapping session. The final map had nine thematic clusters of what mattered to individuals about their medications: 1) researching and becoming educated about medications, 2) social support, 3) effectiveness of medication, 4) self-ownership of medication, 5) ease of use, 6) convenience and accessibility, 7) information provided by healthcare provider, 8) personal interactions with healthcare providers, and 9) patient involvement and trust.

Discussions

Participants generated themes that contribute to our understanding of medication self-management and highlight complexities that extend beyond medication adherence (e.g., social support, shared decision-making). Participants’ perceived statements as highly important and feasible, and thus actionable to inform interventions to support self-management and improve medication experiences.

Conclusions

Our results complement and enhance existing self-management frameworks and provide a more holistic perspective than adherence-focused research.

Lessons Learned

We need a more holistic approach, that moves beyond adherence, to research experiences with medication management. There is value in health professionals understanding experiences with managing medication from a holistic lens, especially within integrated care models, to support self-management through person-centered medication education, prescribing, and counselling.

Limitations

We experienced some challenges as this study was conducted during the COVID-19 pandemic. Participant recruitment and data collection had to be done online, with virtual group discussions, to adhere to physical distancing guidelines. Perspectives of persons unable to access and participate in online sessions may differ from our sample.

Suggestions For Future Research

Studies on medication self-management in more specific populations (e.g., older adults) should be done to extend the generalizability of our findings. Medication self-management should also be explored from the perspective of healthcare providers to probe whether and how patient and provider priorities may differ.