Review Article
A systematic review and thematic synthesis of patients' experience of medicines adherence

https://doi.org/10.1016/j.sapharm.2016.06.004Get rights and content

Abstract

Background

Medicines non-adherence continues to be problematic in health care practice. After decades of research, few interventions have a robust evidence-based demonstrating their applicability to improve adherence. Phenomenology has a place within the health care research environment.

Objective

To explore patients' lived experiences of medicines adherence reported in the phenomenonologic literature.

Methods

A systematic literature search was conducted to identify peer-reviewed and published phenomenological investigations in adults that aimed to investigate patients' lived experiences of medicines adherence. Studies were appraised using the Critical Appraisal Skills Programme (CASP) Qualitative Research Tool. Thematic synthesis was conducted using a combination of manual coding and NVivo10 [QSR International, Melbourne] coding to aid data management.

Results

Descriptive themes identified included i) dislike for medicines, ii) survival, iii) perceived need, including a) symptoms and side-effects and b) cost, and iv) routine. Analytic themes identified were i) identity and ii) interaction.

Conclusions

This work describes adherence as a social interaction between the identity of patients and medicines, mediated by interaction with family, friends, health care professionals, the media and the medicine, itself. Health care professionals and policy makers should seek to re-locate adherence as a social phenomenon, directing the development of interventions to exploit patient interaction with wider society, such that patients ‘get to know’ their medicines, and how they can be taken, throughout the life of the patient and the prescription.

Introduction

Medicines adherence, defined as ‘how well a patient takes their prescription medicines,’ continues to be problematic in health care practice.1 After decades of research, there is little consensus on improving poor adherence or tackling non-adherence.1, 2 Current approaches to research have resulted in numerous ways of measuring adherence, such as self-reported questionnaires, pill counts, and electronic packaging with more recent advances adding stomach-acid-activated microchips to medication dosage forms.1, 3 This has arguably led to multiple conceptualizations of the phenomenon, and has resulted in semantic confusion, from concordance, to compliance, to adherence. Often differences between definitions relate to varying degrees of patient-centered care, with changes often relating to how the patient ‘fits into’ the phenomenon, ranging from following the prescriber's orders, agreeing with the prescriber's decisions, and or making decisions supported by a prescriber, respectively.4 Methods of measuring adherence are heterogeneous, this has resulted in multiple conceptualizations of adherence, for example Hess, Raebel, Conner, and Malone5 reviewed measures of adherence that were based on the number of times a medicine was collected from a pharmacy, this demonstrated a number of calculations that could be used to measure adherence and conceptualized ‘adherence to medicines’ as a function of prescription collection, that is to say that collecting the medicine from a pharmacy inferred patients' adherence to taking the medicine. Conversely van Onzenoort, Neef, Verberk, van Iperen, de Leeuw, and van der Kuy6 investigated a product that measured adherence at the date and time a product was popped from its blister packaging, adherence here then is conceptualized as something precise, to do with using medicines at the right date and time, and represents a different way of thinking about adherence compared to Hess, Raebel et al. (2006), rather than ‘adherence’ meaning collecting a prescription once a month, ‘adherence’ becomes much more onerous, a set of behaviors enabling repetitive tasks to be carried out. In studies that use questionnaires, self-reports or interviews, adherence is measured as a function of the participants' memory (i.e. being able to remember that they had taken their medicines as they were prescribed) as well as being influenced by participants' own understanding of ‘what it means to be adherent,’ that is to say, for some people missing a medicine by a few minutes is non-adherence, for others taking it within a few hours is still adherent. The variation in self-report measures has been demonstrated to over-estimate adherence, suggesting these measures never to be used alone.7 Whilst it is well recognized no single method is preeminent and multiple methods of measuring the same phenomenon offer an element of triangulation and validity,8 these methods unintentionally conceptualize adherence as an epistemologically different phenomenon; as a representation of an ability to collect prescriptions once a month including elements of planning, and access to pharmacy services determined by wider, socio-geographic determinants; as a representation of patient-specific, repetitious objective behaviors located at the right time and date and finally; as a representation of patients' own subjective beliefs about their behaviors when under investigation in research. These different conceptualizations of the functions of adherence, representations of adherence or ‘ways of thinking about adherence’ may have inhibited the understanding of adherence from moving forward. A significant majority of research investigating adherence is conducted within the quantitative, positivist paradigm. This paradigm relates to an underpinning ideology of what reality is and how reality can be experienced. Positivism describes reality as posited – essentially this means that reality and truth are ‘out there in the world’ waiting to be discovered. Positivist approaches often use quantitative methods to discover, identify and prove truths that exist ‘out there in the world’ waiting to be discovered. However, due to the nebulous nature of the adherence phenomenon (is it a belief, an attitude, a short-term behavior or a long-term set of behaviors?) using a positivist approach might overlook essential aspects of what it is actually like to experience the phenomenon, thereby limiting how the phenomenon can be conceptualized and understood, measured and modified. An alternative approach to investigating the phenomenon may be required to deliver insights, generate new understanding, and direct practice.

Qualitative research can provide an alternative approach, although disciplinary conventions, such as journal types and word length, can mean that research findings are not as pervasive in the field as they might be.9 Qualitative research includes multiple methods of data collection such as semi-structured or unstructured interviews; focus groups; ethnography; and observational studies.10 Qualitative research enables rich, detailed data to be collected and analyzed, allowing novel perspectives to be generated and phenomenon to be explored at a fundamental level, ontologically and epistemologically. That is to say, qualitative research can help identify what a phenomenon ‘is.’ The need for this kind of fundamental qualitative research has been systematically identified in the adherence literature.1, 2, 11

Within the qualitative paradigm, phenomenology is positioned as a method and theoretical framework, based on the philosophical works of Heidegger and Husserl.12 The approach has developed over the last century to embody a method of research, which can appear far removed from the scientific biomedical paradigm.13 Phenomenologists argue that phenomena, such as medicines use, are constructed through conscious interaction between subjective humans and the objective physical world. Thus to understand phenomena, researchers must engage with those that have ‘lived’ through the phenomenon.12 Collecting data is concerned with uncovering what others have experienced through interviews and focus groups – as well as collecting ‘grey’ data from photography, poetry, and studying other artifacts.12 Data can be analyzed through interpretative phenomenological analysis or descriptive transcendental phenomenological reduction as well as more conventional thematic qualitative analysis.14 Phenomenology has a place within the health care research environment15 with methods adopted by nurse researchers to add unique insights to the literature,14 in areas such as heart failure and HIV, using medical devices to deliver continuous positive airway pressure (CPAP) and specific treatments, for example cholinesterase inhibitors in Alzheimer's disease.16, 17, 18, 19 Phenomenological methods deliver insights into the ‘lived experience’ of health care phenomena of nursing, medical and pharmaceutical interest.

Systematic reviews and meta-analysis are widely accepted by health professionals as a gold-standard approach for pooling data from multiple studies. Formal statistical methods can quantitatively synthesize data from multiple sources in the literature, however, where this is inappropriate, as is the case for qualitative data, a thematic or narrative synthesis can be an appropriate approach.20 Thematic analysis of phenomenological research may provide insights into patients' lived experiences of medicines adherence and direct future strategies for adherence interventions based on patient experiences.

The aim of this systematic review was to explore patients' lived experiences of medicines adherence reported in the phenomenological literature, through systematic review and thematic synthesis.

Section snippets

Objectives

To explore patients' lived experiences of medicines adherence reported in the phenomenological literature.

Protocol and registration

This review follows PRISMA Guidelines for reporting systematic reviews.21 Methodological limitations were assessed following the CASP Qualitative Research Tool and summarized by i) medicines/health issue, ii) methods, iii) sample size, iv) sample characteristics, and iv) major findings.22 The review protocol is registered with PROSPERO [Registration number CRD42015029494].

Eligibility criteria

The criteria for selecting records for inclusion in the review were i) was a phenomenological investigation ii) was in

Study selection

The search strategy identified 47 records of phenomenological investigations into medicines adherence. 25 records did not meet the inclusion criteria. 22 articles were reviewed in their entirety using the CASP Qualitative Tool and included in a thematic synthesis.

Study characteristics – size, health problem/issue investigated, sample characteristics

The majority of studies were set within the context of HIV,19, 25, 26, 27, 28, 29, 30 other conditions including sickle cell disease,31 asthma,32, 33 tuberculosis,34, 35 mental health (including schizophrenia, depression),36, 37, 38

Summary of evidence

The findings from this synthesis suggest that a structural component of adherence is the interaction between the distinct, textural identities of social actors. Adherence was experienced as a dynamic routine, informed by knowledge about the patient and about the patients' medicines, that patients gained from wider society. This work describes important structures of adherence as identity, of patients and medicines, and as interaction between the patient, their medicine and wider social

Conclusion

This work describes adherence as a social interaction between the identity of patients and medicines, mediated by lay knowledge constructed through social interaction with family, friends, health care professionals, the media and the medicine itself. Patients ‘got to know’ their medicines to such an extent that interactions with the medicine could be modified to deviate from the prescription. Health care professionals and policy makers should seek to co-construct patient beliefs about

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    Funding: This work was funded by a joint educational award from Durham University (60%) and AstraZeneca Plc (40%).

    Conflict of interest: The authors report funding from AstraZeneca Plc and Durham University. AstraZeneca Plc was not involved in the search, selection, synthesis or preparation of this paper.

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