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Abstract
Objectives Disease self-management and medication therapy can cause burden to patients that can influence adherence. The conceptual model ‘patients’ lived experience with medicine’ (PLEM) brings new insights into medication-related burden (MRB) from patient perspective. This study aimed to test the applicability of the PLEM model by interviewing chronically ill patients in Finland and to investigate the MRB experienced by the Finnish patients.
Design Focus group discussion study conducted online via Zoom. Directed qualitative content analysis guided by the PLEM model.
Setting Outpatient primary care in Finland.
Participants Chronically ill outpatients (n=14) divided into five focus groups according to their chronic condition: asthma (n=3), heart disease (n=3), diabetes (n=6), intestinal disease (n=2).
Results Our findings were mainly in line with the PLEM model although some new contributing factors to MRB emerged. In general, the participants were satisfied with their medication, and that it enabled them to live normal lives. The most common causes of MRB were medication routines and the healthcare system. The participants introduced two new aspects contributing to MRB: medication-related environmental anxiety associated with the waste resulting from medicine use, and the effect of medication use on their working life. Our findings are consistent with previous findings that a higher level of MRB may lead to independently modifying the medication regimen or not taking the medicine.
Conclusions Our findings provide further evidence that the PLEM model is an applicable tool also in the Finnish context for gaining better understanding of MRB in chronically ill patients self-managing their long-term medications. The model provides a promising tool to understand the connection between MRB and the rationale for not always taking medicines as prescribed. Further research is needed to explore the potential of the model in extending patient perspectives in chronic disease management.
- HEALTH SERVICES ADMINISTRATION & MANAGEMENT
- Organisation of health services
- Patient-Centered Care
- Primary Health Care
- QUALITATIVE RESEARCH
Data availability statement
No data are available.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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- HEALTH SERVICES ADMINISTRATION & MANAGEMENT
- Organisation of health services
- Patient-Centered Care
- Primary Health Care
- QUALITATIVE RESEARCH
STRENGTHS AND LIMITATIONS OF THIS STUDY
This study was based on a conceptual model synthesised from a systematic review and meta-synthesis of qualitative studies, allowing a patient-centred, novel approach to explore medication-related burden as a factor influencing medicine taking.
Patients from four different condition groups and with varying durations of chronic illness participated in the focus group discussions, generating rich and diverse data.
The participants were recruited through patient organisations, which generated lively discussions. Some selection bias may have been introduced, as members of patient organisations may be more vocal than patients in general.
In this study, testing the applicability of the patients’ lived experience with medicine model, we sought rich data from patients with different chronic conditions rather than saturation and generalisability.
Introduction
Medication therapy is an essential part of many chronic conditions, especially for patients suffering from major non-communicable diseases, such as diabetes, asthma and cardiovascular diseases.1 In these conditions, long-term, even lifelong medications are common, which highlights the importance of patients’ commitment to treatments.2–4 When trying to understand medicine-taking behaviours of people with chronic conditions, patient involvement and empowerment, and shared decision-making have been emphasised as crucial factors for medication adherence.5–7 However, research has not shifted sufficiently to study medication self-management from patient perspectives, and so attain better understanding of contributing factors that influence medicine taking.3 There is growing evidence that medication therapy can be burdensome to patients, affecting medicine taking practices, and thus the general well-being, functional ability and quality of life of the patients.8–10
A remarkable and promising opening towards understanding the medicines-attributed burden was the conceptual model describing patients’ lived experience with medicine (PLEM) published in 2016 by Mohammed et al.9 The PLEM model is based on a meta-synthesis of 34 qualitative studies from 12 countries, offering a robust starting point for forming a conceptual model. The experiences of 1090 patients and 54 healthcare providers (HCPs) were merged in the model, which depicts how medication can contribute to the burden experienced by the patients, their related beliefs, and the ways in which medicines are taken. The model suggests that medication-related burden (MRB) is an antecedent factor impacting the medication-related beliefs of patients and their medication-taking practices. The PLEM model provides an innovative patient-centred approach, as it aims to understand how patients perceive their medication and the different aspects of medication use that can impact their daily lives.9 As the PLEM model seems to provide new insights into understanding and measuring patients’ experience of MRB, it is important to test the applicability of the model in different contexts.
Following the publication of the PLEM model in 2016, it has been operationalised to measure the effects of MRB on functioning and well-being.11 To our knowledge, the model has been tested and validated in Australia, but not beyond. The objective of this study was to test the applicability of the PLEM model among chronically ill outpatients in Finland and to investigate the MRB experienced and articulated by them.
Materials and methods
We conducted the study as a qualitative focus group study based on the PLEM model9 and involving patients with different kinds of chronic conditions that were selected by purposive sampling. We selected the chronic conditions due to their high prevalence in the Finnish population and due to medication therapy being an integral part of the treatment. Participants were recruited through five national patient organisations (Diabetes Association, Heart Association, Asthma and Allergy Association, Crohn’s and Colitis Association, and Migraine Association).
The contact persons of the patient organisations distributed information about the study through mailing lists or Facebook groups to recruit participants from across Finland. We selected participants in order of enrolment according to their condition to form five discussion groups, each with 2–4 participants from the same patient organisation. The inclusion criteria for participation were at least one diagnosed chronic condition and one regular medication.
Interview guide
We based the thematic interview guide on the PLEM model (online supplemental table 1). The interview guide covered the core contents of the model with special emphasis on the dimensions of the MRB. The model itself was not shown to participants. We designed the questions concerning the core contents of the model after comprehensively studying the PLEM model9 and discussing it within the research team. A wide array of key interview questions and probing questions were prepared under each theme to be discussed to ensure appropriate depth and coverage of information obtained from the focus group discussions (FGDs). We piloted the interview guide in two interviews (the first involving one patient with diabetes and the second involving two patients with intestinal disease), after which we made minor changes to the interview guide. Data from the pilot interviews were not included in the study.
Supplemental material
Data collection
We collected the data in the summer of 2020 through FGDs that were held online due to the ongoing COVID-19 pandemic. The FGDs were organised and recorded via the Zoom video messaging service with the participants’ permission. The target duration of each FGD was an hour. At the beginning of each FGD, the moderator (HM) instructed the participants to consider their entire medication regimen, not only the treatment of the condition in focus of the discussion group. The discussion proceeded in the order in which the topics arose, giving space for the participants’ interaction and expressions.
All FGDs were moderated solely by one researcher (HM, a female pharmacist with a Bachelor of Science in Pharmacy degree, working on her Master’s thesis at the time of study). While having no prior practical experience from FGDs, she had an in-depth understanding of the purpose, theory-base and methodology of the study, as she was responsible for planning the study design, developing the interview guide, and carrying out FGDs under supervision of her senior-level supervisors (MA, MD, KH-A, all pharmacists as their background). As supervisors, they were intensively involved in every phase of the research process and had a shared vision and understanding of the objectives of the study. One of the researchers (EL) has a nursing background bringing her scientific approach and clinical practice experience to the research group. All the senior researchers are experienced in using qualitative research methods. As the main researcher of the study, only HM’s qualifications and research interest in the area were shared with the participants in the recruitment letter.
Data analysis
The study data consisted of recordings of FDGs that were transcribed verbatim and background information of the FGD participants that was collected in a structured form via telephone prior to the FGDs. We analysed the data deductively using directed qualitative content analysis with the PLEM model as a conceptual framework (see analysis process in online supplemental figure 1).9 12 13 A structured analysis matrix was developed using the description of the PLEM model.9 14 15 We collected essential participant expressions (meaningful units) on Microsoft Excel spreadsheets according to the themes (MRB, medication-related beliefs, and medication-taking practices) and burden dimensions of the PLEM model (analysis matrix). In the first stage, transcripts from all FGDs were analysed separately and participant expressions were classified into main categories (dimensions) under the related themes of the PLEM model (see examples in online supplemental table 2). The same expression could be classified in more than one category if it was seen to reflect several categories (eg, an adverse effect and how it had affected the participant’s beliefs). In the second stage, the participant expressions were condensed and subsequently classified into subcategories (called component for the burden dimensions, and factor for the subcategories of beliefs or medication-taking practices). In the third stage, the condensed expressions from different focus groups were pooled in a single file and the topics were further abstracted. No participant feedback was sought. The data were also quantified to illustrate the prevalence of similar experiences across groups.
Supplemental material
Supplemental material
The themes and dimensions are derived from the PLEM model (ie, were theory driven). The subcategories (components, factors) were formed both inductively and by forming subcategories based on how the results were described in the original PLEM article.9 In practice, this means that participant expressions were compared with the model to verify whether the experiences were consistent with the model and whether new aspects arose. Based on these findings, we modified the original PLEM model,9 marking the differences compared with the original model and the topics that were highlighted in the FDGs. Two researchers (HM, EL) analysed the data from two of the FGDs independently, after which they compared the collected expressions and their classification into main and subcategories. Any differences in the analyses were discussed and settled according to the original PLEM model.9 HM analysed the data from the remaining three FGDs supported by the senior researchers. The Consolidated criteria for Reporting Qualitative research Checklist was used to ensure comprehensive reporting.16
Research ethics
The FGDs were conducted in accordance with the Finnish National Board of Research Integrity guidelines17 for the ethical principles of research with human participants. According to the guidelines, ethical pre-evaluation by the Institutional Review Board was not required as this was not a medical intervention study. Other criteria for a waiver from the ethical pre-evaluation were that all the study participants were asked for a written informed consent before starting the study, only adults participated in the FGDs and the discussions did not cover topics that could pose strong stimuli, risk of mental harm or safety threats for the participants.17 Data security and privacy protection of the participants were ensured according to the General Data Protection Regulation (GDPR).18 The participants received written information about the study prior to consent. Study participation was voluntary, and the participants were asked by email for informed consent to participate in the study, record the FGDs, and process their personal data.
Patient and public involvement
No patients or the public were involved in designing this study, recruiting participants or conducting the study. However, the research objectives were chosen to reflect patients’ experiences of chronic conditions and their medication therapy.
Results
Fifteen participants enrolled in the study and gave their informed consent. One of them needed to be excluded during the FGD because of an unstable internet connection, yielding a final number of 14 participants. Altogether five FGDs were held with the participants being divided into the following groups according to the condition in focus: asthma (n=3), diabetes (two groups, both n=3), intestinal diseases (n=2), cardiovascular diseases (n=3). No participants with migraine enrolled, and therefore two diabetes groups were formed. The total length of the five FGDs was 5 hours and 27 min (range 55–72 min).
The mean age of the participants was 44.8 years, ranging between 25 and 69 years (table 1). The majority (n=9/14) of the participants lived in southern Finland. In addition to the four conditions of interest, some of the participants had comorbidities and related medications, such as hypothyroidism and Sjögren’s syndrome. Participants reported a mean of 2.3 diagnosed chronic conditions (range 1–4). The duration of the participants’ chronic illness varied between 2 and 40 years. The average number of medicines in regular use was 4.8 (range 2–10) at the time of the study.
Characteristics of the study participants (n=14)
In general, the experiences of the study participants (n=14) were well in line with the PLEM model.9 Participants described experiences from all the three themes (MRB, medication-related beliefs and medication-taking practices) and the dimensions subject to these themes. Some of the burden dimensions, especially the burden of medication routines and the healthcare-associated medication burden, were emphasised in the discussions. Furthermore, two new components within the burden dimensions emerged: (1) under the dimension of medication characteristics, medication-related environmental anxiety associated with the waste resulting from medicine use; and (2) under the dimension of medication-associated social burden, the effect of medication on working life. We created a modified PLEM model based on these findings (figure 1).
Modified model of patients’ lived experience with medicines (PLEM).9 The texts in bold under the main themes (medication-related burden (MRB), medication-related beliefs and medicine-taking practices) indicate dimensions with most participant expressions related to the theme. Underlined texts indicate a dimension where a new component was added, based on the focus group discussions. DRPs, drug-related problems; HRQoL, health-related quality of life.
MRB experienced and articulated by the study participants
Most of the chronically ill patients in this study reported experiencing a mainly intermittent or light MRB. The experiences described as burdensome were most often related to medication routines and the healthcare system. The spectrum of experiences of the MRB shared in the FGDs is summarised in table 2.
Medication-related burden dimensions as presented in the original model of patients’ lived experience with medicines (PLEM) and components that emerged in this study
The experience of the burden of medication routines was especially noticeable among the diabetes groups. The difference between these and other groups was most discernible in terms of the time and effort required for follow-up and taking the medicines (table 2). Consequently, patients with diabetes described how they needed to constantly monitor their status and adjust insulin doses accordingly. These patients felt that glucose sensors and insulin pumps eased monitoring. However, they viewed the alarms on the pump as a disadvantage since they bleeped regardless of the situation. Similarly, patients with asthma and heart diseases reported a burden related to follow-up and dose adjustments. Another major component was the need for preparation and forward thinking (table 2). This component included, among other things, always keeping medicines and other necessities to hand wherever the patients went and reserving a suitable amount of medicine, for example, for a trip. The challenges of remembering described by patients in most FGDs were related to exceptions in daily routines, varying doses of the medicine, the routinisation of medicine taking, or a dosing schedule that was less often than daily.
The cost of treatment and medication therapy was the most frequently mentioned cause of the healthcare-associated medication burden (table 2). Particularly at the beginning of the year (due to the Finnish reimbursement system, which has an initial deductible at the start of each calendar year, after which the cost of medicines is reimbursed), the money spent on medicines burdened the group of asthma patients. Still, only one of the participants disclosed that she had decreased the dose of the medicine in times when money was scarce. The varying quality of care in the different levels of healthcare units or in different localities was often mentioned, for example, the higher quality of care received in specialised care units (table 2). An example given of the inconvenience caused by the healthcare system was difficulties in contacting the care provider. The fragmentation of the care process was also raised in most of the groups (table 2, online supplemental table 2).
Among the components of burden of medication characteristics, participants most often mentioned aspects related to the medicinal substance or product, such as the large size of the tablet and the large quantity of medicines (table 2). For patients with intestinal diseases, the large number of tablets to be taken simultaneously had occasionally resulted in them taking less tablets than prescribed. A new component of the burden of medication characteristics was mentioned in the diabetes group: medication-related environmental anxiety. One participant described the anxiety she felt due to the waste generated from insulin treatment and medicine blister packs. The anxiety had made her deviate from the therapeutic instructions for years, for example, changing insulin needles less often than recommended. Lipohypertrophy had followed, where insulin absorption is slower and less predictable. Hence, the burden further intensified. Other forms of environmental awareness were also mentioned, for example, knowing that people offer through peer groups on Facebook unused insulin for dogs with diabetes.
In all focus groups, a burden of adverse events (AEs) was reported, which was mainly related to various adverse drug reactions (table 2). In some cases, the AEs had been resolved by the doctor changing the medicine or the dosing time, but in other cases the adverse reactions were still present, negatively affecting quality of life. Even if the AEs were resolved, they seemed to cause a fear of new medicines and the possible adverse reactions that come with them. Among the AEs affecting quality of life, patients with heart diseases described the tiredness caused by a beta blocker and its impact on physical endurance. Systemically used glucocorticoids (cortisone) were most often mentioned in connection with adverse reactions, for example, swelling, insomnia, both in the asthma and intestinal disease groups.
Of the medication-associated social burden, the visibility of the medication and the medication’s effect on social life, such as hobbies and travel, were highlighted (table 2). The medication is visible either when medicine needs to be taken in public, or in how the adverse drug reaction affects physical appearance or behaviour, for example, swelling or hyperactivity that needs to be explained. Some participants described their reluctance to take the medicine in public, such as in the workplace, and their preference to take it out of sight. In most focus groups, the difficulty associated with holiday travel was described when discussing the effects of medication on social life. The effect of medication on working life emerged as a new component in the social burden (figure 1, table 2). It was expressed through concerns over how the condition and its related medication negatively influenced perceptions of one’s capability, for example, in the workplace or as a performing artist.
Medication-related beliefs
In the PLEM model, the medication-related beliefs of the patients are viewed in relation to the causes of the MRB, and medication-taking practices were identified as a target behaviour. All the subthemes of medication-related beliefs (first column in table 3) in the original model were addressed in the FGDs, and the participants described varied experiences of the influencing factors.
Medication-related beliefs in three subthemes of the original model of patients’ lived experience with medicines (PLEM) and the influencing factors of each subtheme
The impact of family, HCPs and the public on medication-related beliefs varied among the participants (table 3). Of these, the participants mentioned HCPs as the most influential, but the surrounding community also had an impact on them. In the FGDs, social media was raised as a new influencing factor with respect to the original model. For some chronically ill patients, social media appeared to be a significant factor affecting their beliefs, as participants described how people share experiences in social media peer groups, for example, replacing medicines with alternative therapies. The influence of family members on beliefs was mostly supportive towards medication.
The participants expressed varying MRB intensity and individual coping skills. All groups discussed experiences of regular medication sometimes being burdensome and causing treatment fatigue, whereby the experience of burden is reflected in the individual’s experience of the controllability of their medication therapy (table 3), for example, forcing oneself to take the medicine despite the burden. The intensity of the MRB, however, had less often influenced the individuals’ activities, such as changing insulin needles less often than recommended or neglecting asthma treatment in the workplace.
The general attitude of the participants towards medicines was more often positive than negative (table 3). The participants often expressed a positive attitude either as an uncomplicated or as a hopeful attitude towards the medicines. In these cases, the participants hoped that medicines would help with the condition and its symptoms. On the other hand, a negative or contradictory attitude was related to the use of medicines per se, and more specifically to cortisone and biological medicines. Some participants described a love–hate relationship with cortisone, as it is quick to relieve symptoms but produces unavoidable adverse drug reactions. In the asthma group, biological medicines were viewed with reservations due to the lack of information about their role in the treatment of asthma. One participant expressed the wish that despite the medication, life could be meaningful and good.
Medication-taking practices
According to the original PLEM model, the medication-taking practice describes how patients implement their medication: whether they take the medication according to the instructions, that is, approve their medication as such, or modify it independently. It was clear from the data that among the study participants, the acceptance of medication for various reasons was more common than the modification of medication (table 4).
Influencing factors for medication-taking practices (acceptance or modification of the medication)
Most of the reasons given for accepting medication, regardless of the patient group, were both the experience that the medicines improve health, and thus enable an almost normal life despite the illness and its treatment, and adaptation to the medication and its routines (table 4). The participants also often described how trust in HCPs allows them to accept the medicines as such or to rely on a doctor’s support when determining the right moment to start a course of cortisone, for example. Particularly among the patients with diabetes or heart disease, the desire to stay alive stood out as a reason for accepting the medication, as they perceived acceptance as vital to do so.
Modifying the medication or therapeutic care plans was rarer than following the therapeutic instructions among the participants (table 4). However, for two of the participants (one with diabetes, one with asthma), the burden had negatively influenced acceptance and adherence to medication more extensively than for other participants. As a result, they had independently modified or stopped the medication. The situations where the dose of medication had been changed without medical consultation were most often related to the experience of MRB among the participants. The excessive burden, for example, of the AEs or the large number of tablets to be taken simultaneously, had caused some participants to reduce the dose or avoid using the medicine. Moreover, forgetting to take the medicine was also mentioned. Participants seemed to take missing the dose more seriously when it had an immediate effect, for example, heart medication, as compared with situations where the effect was less direct, for example, intestinal disease medication. Also, some participants with asthma and one with diabetes mentioned that adjusting the dose is part of the self-management of their condition (table 4).
Discussion
The findings of this study conducted in the Finnish context are largely in line with the results described by Mohammed et al 9 in the PLEM model, indicating that the model is transferable and applicable in various contexts where long-term medications are self-managed by chronically ill patients. Among the dimensions of MRB, the participants highlighted the burdens caused by medication routines and the healthcare system. Our study also found two new components of MRB that are not mentioned in the original PLEM model.9 The first of these two extend the MRB to working life as part of the burden caused to the social life. This MRB component has been included in the development and validation of an instrument for measuring the burden of medicine on functioning and well-being, which is based on the PLEM model (the Medication-Related Burden Quality of Life tool).11 The other new component of MRB was medication-related environmental anxiety.
Most of the participants were satisfied with their medication and felt that it enabled a close-to-normal life despite the illness. The burden appears to be partially independent of the patient group, although some aspects may depend on the condition and the characteristics of the medication used for its treatment.
According to this study, the most important components of the burden of medication routines were the need to be prepared and the time and effort required for the follow-up and taking the medicines. Other studies have also shown that the need for forward thinking and the burden of always having to remember to take the medicines in different life situations can be burdensome for patients.9 19 These findings highlight the need for HCPs to recognise these possible sources of burden and assist patients in adapting their medication taking routines in their daily lives, for example, by counselling. Thus, the PLEM model can provide HCPs ‘a map’ that can help them to understand patient experience while working with patients having chronic conditions and long-term medications.
Another major dimension contributing to the MRB in this study was the burden associated with healthcare. Our findings are in line with the PLEM model,9 that the cost of treatment, inconsistent quality and lack of continuity of care, and the inconvenience caused by the healthcare system are significant sources of the burden for chronically ill patients. These findings may reflect the present fragmented health systems that are common worldwide, which contribute also to MRB. This is the case in Finland as well where a major reform of healthcare and social services is currently underway, also concerning the implementation of rational use of medicines.20 21
In this study, medication-related environmental anxiety appeared as a new MRB component of the burden of medication characteristics. The experience of environmental anxiety emerged in one of the diabetes groups and was related to the waste resulting from taking the medicines, for example, insulin needles. In Finland, public discussion of environmental matters has been active in recent years, which may explain why this topic arose in our study and not in the original PLEM model study, which was based on studies published before 2015.9 This finding is supported by a Finnish population study conducted in 2019, which found that four out of five respondents, and women more than men, were concerned about the possible environmental effects of medicines.22 How such concern affects medication-taking practices should be further investigated both in Finland and internationally.
This study reflected the limiting effect of medication on working life. It appeared that the burden was mostly related to the social dimension, for example, not wanting colleagues to observe medication taking, but it could also be related to the burden of medication routines, for example, some patients mentioned the need to organise work schedules or take breaks for a snack to balance blood glucose levels. The impact of the overall treatment or medication on working life has been reported in previous studies.10 23–25 Future studies could focus on the effects of medication on working life and overall activity in society, for example, by reviewing the literature on studies targeting the working age population.
The chronically ill patients who participated mentioned various sources of burden that affected the implementation of their medication therapy. Half of them had four or less regular medications, which may have contributed to the participants perceiving their burden as mainly light or intermittent. Patients subject to polypharmacy are more likely to experience a heavier burden than the study participants. On the other hand, the light to moderate burden described by the participants may have been influenced by the age range of the participants, as those over 70 years old or those with poor digital skills were unrepresented in the FGDs. Partially contradictory results have been obtained in previous research regarding the effect of age on the MRB. For example, in New Zealand, among the age groups studied, 18–29 year olds seemed to experience the heaviest burden, while 65 year olds and older had the lightest burden, which is in line with other studies.19 24 Similarly, in our study age seemed to affect the burden: retired participants seemed more at ease with their medication therapy than those working or studying. In a study with patients aged 65 and older, however, a heavier burden seemed to relate to older age.26
An understanding of the MRB and its causes assists in planning interventions to support patients with chronic conditions with their medication, and thus promote adherence to treatment. It seems that the burden of illness can sometimes be difficult to distinguish from the burden of treatment (ie, MRB). More patient-oriented research on both aspects is needed to facilitate better understanding of the lived experience of chronically ill patients and thereby support them in coping with their conditions and their treatments.
Strengths and limitations
This study was based on a conceptual model synthesised from a systematic review and meta-synthesis of qualitative studies,9 allowing a patient-centred, novel approach to explore MRB as a factor influencing medicine taking. FGDs are widely used in health research to examine patients’ perspectives and experiences.27 28 In this study, groups were homogenous by condition, which is recommended to enhance participation in discussions.28 29 People suffering from four different chronic conditions with varying durations of chronic illness participated in the FGDs, producing rich and diverse data. We quantified the data to illustrate the number of groups in which a certain issue arose or resonated among the participants, that is, to illustrate the relationships between the MRB dimensions and the subcategories (components and factors) formed in this study. The trustworthiness of the study findings was assessed using the criteria commonly applied to qualitative research in healthcare, that is, transferability, dependability and credibility.30 Transferability of this study was ensured through the purposeful sampling of the participants; however, accepting participants into the study in the order of enrolment may have led to a sample with high personal interest in the topic rather than heterogeneity, thus limiting the transferability of the results. The dependability of the analysis was ensured by two independent researchers analysing part of the data. Some differences were found in the analyses, which were then resolved against the original PLEM model. Credibility was ensured by including deviant cases in the analysis and reporting examples of direct expressions of the participants.
Recruitment was conducted through patient organisations to enrol participants who actively discussed and were able to articulate their experiences. Online focus groups enabled participation regardless of geographic region and requiring less of the participants’ time. It is possible that patients who adhere well to their treatment were more interested in participating, which may explain the mainly light perceived MRB expressed by the participants. In addition, the participants included persons who acted as experiential experts for their patient organisation and one employee of a patient organisation. Including two diabetes groups when no migraine patients enrolled in the study may have affected which components of the MRB were accentuated. The high number of patients with diabetes willing to participate may indicate the higher burden related to this disease and its medication compared with other diseases. People over the age of 70 did not enrol in the study, which could be due both to the use of electronic recruitment channels and Zoom to conduct the FGDs. The perceived burden could be different for the elderly or those with deficient digital skills, a point which should be studied further.
One researcher (HM) moderated all the FGDs independently, and the same researcher also analysed the data. Participants were not asked to comment on the transcripts of the FGDs. Conducting the group discussions via Zoom was generally successful, but some features limited the flow of discussion, for example, the tendency of participants to start talking simultaneously. There were some elements that posed challenges to the group discussions: the online environment, the breadth of the PLEM model and the subsequent interview guide, as well as the limited experience of the researcher. As a result, the discussion was more question-oriented than would normally be desirable for FGDs, and it may be that due to these challenges the depth of the discussion was somewhat limited. Longer time or less interview topics would have allowed for a more in-depth discussion. The analysis was challenged by the overlapping of some sections of the original model.9 On the other hand, the burdens of the illness and the treatment were at times difficult to distinguish, as participants also described the burden of the condition itself. Any uncertainties were discussed by the researcher (HM) with the research team.
In this study, we sought diversity by including participants from many patient groups as opposed to pursuing data saturation, for which more groups with the same condition would have been needed. It seems that depending on the chronic condition, different dimensions, or components, of MRB are accentuated (eg, the need for constant monitoring and dose adjustments among patients with diabetes, the visibility of AEs for those that use cortisone to treat their condition). Future studies should focus on specific patient groups to go deeper into the typical sources of burden in that condition.
Conclusions
The findings of this study are largely in line with the original PLEM model. The PLEM model is an applicable tool in the Finnish context for gaining better understanding of MRB in chronically ill patients self-managing their long-term medications. New aspects contributing to MRB were identified, namely medication-related environmental anxiety associated with the waste resulting from medicine use, and the effect of medication on working life. The most strongly perceived burden seemed to be associated with independent modification of medication therapy and even non-use of drugs. The model provides a promising tool to understand the connection between MRB and the rationale for not always taking medicines as prescribed. Further research is needed to explore the potential of the model in extending patient perspectives in chronic disease management.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Ethics approval
The study design did not require an ethical review according to the guidelines on ‘the ethical principles of research with human participants and ethical review in the human sciences in Finland’ by the Finnish National Board on Research Integrity TENK. See more information here: https://tenk.fi/en/ethical-review. Exempted this study. Participants gave informed consent to participate in the study before taking part.
Acknowledgments
The authors would sincerely like to thank all the participants for sharing their experiences and the patient organisations for their help in the recruitment. The authors would also like to thank Veronica Eriksson for valuable comments in the planning of the focus group discussions.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Presented at This work was presented at the Nordic Social Pharmacy Conference on 8 June 2023, and the conference abstract will be published in Research in Social and Administrative Pharmacy online later in 2023.
Contributors HM, MD, KH-A and MA contributed to the conception and design of the study. HM recruited the participants and collected the data with support and guidance from MD and MA. HM analysed the data with support from MA, MD and KH-A. EL analysed the data from two focus groups for analysis method validation. HM drafted the manuscript. All authors contributed to revising the manuscript critically for intellectual content. All authors have given approval for the final version to be published and agree to be accountable for all aspects of the work. HM is the study guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.