Main results
The present study aimed at exploring the use of AECOPD self-treatment with antibiotics and/or oral corticosteroids from the patients’ perspective, focusing on aspects relevant to their decision of when to start treatment and on potential barriers to more successful implementation of this care strategy. We found that the decision to start self-treatment required not only symptom recognition but also symptom assessment in terms of evaluating whether the illness was serious enough to condone the treatment related risks. This assessment could be easy when symptoms occurred according to the patients’ regularly experienced symptom patterns, and clearly indicated that treatment with antibiotics and/or oral corticosteroids was the best alternative for symptom relief. Yet, when signs and symptoms were ambiguous, or in case of treatment failure, assistance by a medical professional could be necessary. Help seeking, though, could be, but was not always natural to all participants. Distrust in receiving appropriate care, or feeling obliged to succeed with self-treatment could be barriers to timely help seeking when needed.
Strengths and limitations
Our purposeful sample ensured that all the participants had a comparable level of education about COPD through the rehabilitation program. Perspectives from both sexes and different age groups, working status, residence and different sources of the self-treatment medications ensured considerable variation in the sample. This is a strength of our study, as it enables us to acquire insight into COPD patients’ real-life experiences, rather than depicting idealized self-treatment strategies as described in the literature and in policy statements. Yet, this has implications for the transferability of our findings. On the one hand, this study adds valuable knowledge to inform actors involved in implementation of AECOPD self-treatment into routine care, such as primary care physicians. On the other hand, transferability to COPD patients receiving more comprehensive instructions about self-treatment, as for instance in randomized self-treatment trials, might be limited. Another limitation is that participants may in some cases have not talked about AECOPD in a medical sense, but about illness episodes assumed to be exacerbations resulting in actions such as self-treatment or seeking help from health care professionals. Choosing another sampling strategy that ensured that participants had been diagnosed with AECOPD would perhaps have resulted in other findings. However, we considered our method more appropriate because self-treatment also includes self-diagnosis rather than diagnosis by a professional. Furthermore, we acknowledge that adjusting the study aim and subsequently, the approach to data collection, during the study period is debateable in terms of sampling bias. Yet, we regard our choice as appropriate according to our experiences and reflections during the data collection process.
Discussion of the main results
Our findings that COPD patients have considerable experience-based knowledge and skills to recognize and promptly respond to symptom changes are in line with the results of previous studies [
17,
19,
25,
26]. Self-treatment with antibiotics and/or oral corticosteroids may in fact compose a practical alternative to traditional care, particularly for patients with recurrent symptom patterns clearly indicating when treatment beyond increased dosage of maintenance treatment or non-medical self-help is necessary. ‘Knowing the patient‘, in terms of knowing their usual presentation during an exacerbation, seems therefore important to identify patients potentially benefiting from self-treatment [
11,
27]. The importance of individualizing treatment plans is already widely recognized and implemented in self-treatment interventions [
6,
28]. However, this disease-focused approach to self-treatment education does not consider the patients’ perception of and attitude towards utilizing ‘their’ plans.
One of our main findings was that the decision to start self-treatment with antibiotics and/or oral corticosteroids always included an evaluation of whether leaving the illness untreated composed a greater health risk than the potential side effects of the medication. Especially when symptoms were diffuse and not clearly indicated the need for treatment, we found that patients would hesitate with starting treatment or not start treatment at all by themselves. COPD patients’ concerns regarding the self-treatment medications appear in earlier studies, but are often not further discussed as a key to patients’ self-treatment decision-making [
16,
17]. Yet, patients’ double-edged perspectives on drugs in general and their influence on medication taking behaviour has long been understood [
29‐
35].
According to the Necessity-Concerns-Framework, for instance, treatment cognitions are equally important as illness cognitions to determine patients’ treatment-related decision-making. Its core concept comprises a “necessity-concern-dilemma”, which describes a patient’s judgement about the personal need for treatment as opposed to concerns about potential negative consequences [
34]. Even though the Necessity-Concerns-Framework is an extension of Leventhal’s Common Sense Model of Illness Representations [
36], which is regularly brought up in the COPD self-management literature, the framework remains to our knowledge unnoticed in the theoretical foundations of COPD self-management interventions [
37]. Treatment cognitions are important in our study, yet, we do not know to what extent patients’ treatment related concerns in fact contribute to inappropriate treatment decisions in a medical sense, or whether patients with less concerns and clearer symptoms are those with better outcomes in self-treatment interventions.
Importantly, our results clearly show that patients can feel uncertain about symptoms and treatment necessity or may experience treatment failure. They might over-or underestimate the necessity for treatment with antibiotics and/or oral corticosteroids according to what is appropriate from a medical point of view. Therefore, as clinical examination and diagnostic tests can help to better target AECOPD treatment to the underlying cause, involving a health care professional in the assessment of AECOPD would at least make sense if symptoms are ambiguous. Yet, our findings suggest that patients’ decisions regarding self-treatment and help seeking are not motivated by pure medical aspects, but mostly by their previous encounters with doctors and experiences with the health care system. This raises questions regarding the ‘real’ impact of self-treatment interventions on patients’ behaviour. In theory, self-treatment education should increase patients’ self-efficacy in interpreting their symptoms, contribute to patient autonomy and to less need for health care contacts [
37,
38]. Even though these goals may have partly been reached, the overall evidence remains inconclusive [
38]. According to sociologically inspired investigations on health care utilization of people with chronic illnesses, it is clearly the recursive nature of health care contacts throughout a patient’s individual illness trajectory that determines current and future health care utilization patterns [
39‐
41]. Neither changes in the delivery of health care nor the “expressed need” for help were found to predict a patient’s self-care and help seeking behaviour [
40,
41]. This understanding is reflected in our participants’ help seeking attitudes. Participants principally contacting their doctor before starting treatment did not seem to have adopted self-treatment as a new form of AECOPD care even though their experiential and lay-medical knowledge was probably sufficient to negate the need for help in the first place. Moreover, we argue here that participants who in fact used their self-treatment medications did so because the self-treatment opportunity served to maintain their already existing pattern of interacting with the health care system. Importantly, the introduction of new means of health care, such as AECOPD self-treatment, might even threaten patients’ established relation to health care professionals and result in tensions unsupportive of the implementation of these new care forms [
42]. We find that such a tension is reflected in participants who felt uneasy to contact their doctor due to the feeling that they should be able to manage AECOPD self-treatment on their own. Engaging in self-treatment to avoid contact with a doctor or due to worries of being burdensome would then, at least partly, derive from a dysfunctional patient-physician relationship instead of a patients’ medical confidence. On the one hand, this may raise concerns regarding the increased use of antibiotics and oral corticosteroids, which was found in patients in self-treatment intervention groups [
43‐
45]. On the other hand, patients engaging in self-treatment or hesitating to contact the doctor would be consistent with other findings showing that a number of self-treatment interventions reduced the number of health care contacts [
44‐
47].
The above discussion mirrors further the results from a study suggesting that self-care and help seeking patterns of people with chronic illnesses are “intrinsically intertwined” and result from a dynamic relationship between life-world experiences and experiences from illness trajectories [
39]. This understanding implies that patients make appropriate and logical decisions according to their lay-medical understanding of illness and medications, and the impact of symptoms on their daily living. While COPD patients’ motivation to engage in self-treatment or to seek help might express their ‘voice of the lifeworld’, caregivers and policy makers may promote self-treatment with ‘the voice of medicine’ [
48]. Listening closer to the patients’ voice, that is acknowledging their basic concerns, patterns of relationships to health care and experiences from everyday management of their illness, could help caregivers to identify discrepancies between their own and the patients’ motivations for AECOPD self-treatment [
48,
49]. This could help to overcome potential barriers to the implementation of AECOPD self-treatment with antibiotics and/or oral corticosteroids in routine care, and would strengthen the understanding of COPD self-management, including AECOPD self-treatment, as one element of integrated care instead of regarding it as the ultimate goal in itself [
50,
51].