In total, 26 people with COPD consented to be contacted. Some of the patients were unavailable or were not well enough to participate. Five people were included from the previous questionnaire study and an additional five participants were needed to meet saturation. Three of the participants were female and seven were male. The age of the participants varied from being in their fifties to their eighties, and their COPD severity varied. In general, the younger participants had lower degree of disease severity. Each interview lasted between 45 and 60 min. Most participants had spouses, and some spouses participated in the interview. However, a few participants had no partner or lived by themselves. All participants lived at home, but some occasionally had temporary stays at intermediate care units or nursing homes. About half of the participants received home nursing or other home-based services, which included delivery of prescription medicines from pharmacy.

Primary analysis

In our primary analysis, we investigated descriptive content related to medicines and other information which could be relevant for pharmacists. We found five main themes in our primary analysis: (1) health literacy and information needs, (2) patient autonomy, (3) lack of access to medicines, (4) lack of effect from medicines, and (5) experiences of medicines-related issues (Fig. 1).

Fig. 1

Coding tree of the primary analysis. HCP healthcare professional(s), COPD chronic obstructive pulmonary disease

Health literacy and information needs

The participants of this study had varied attitudes towards medicines. Some of the informants were sceptical about medicines in general and disliked taking many medicines. Followingly, some were confused about the many different types and names of different inhalers. One participant stated that they used a pill organiser to simplify and limit the time and attention they spent on their medicines.

I am not going to have any relation to my medicines, no relation at all, I am going to take my medicines because I must. And then I am finished with it. I am not going to take out pills one by one from one medicine box after another, because then it takes over your life. And I won’t have that.

(Participant 8, male)

Confidence in knowledge varied from not seeking or needing additional information, to occasionally finding health information difficult to understand and being aware of their lack of knowledge about medicines. One participant described finding information difficult to retain during emotional and physical distress, such as during hospitalisations. Participants who attended pulmonary rehabilitation after hospitalisations highlighted that this provided them with useful knowledge about medicines.

A few of the participants believed that healthcare professionals generally lack knowledge about COPD treatment. Followingly, there was variability in the quality of information provided by healthcare professionals. Participants found it helpful when healthcare professionals initiated conversations about how to optimise inhaler treatment and experiences with side effects. On the other hand, they would sometimes feel dismissed when expressing concerns about side effects.

[…] Because if you ask the doctor about [side effects], then they are very dismissive. They can reply with something like: “all tablets have side effects” and then they are done. And that doesn’t help much.

(Participant 10, male)

Patient autonomy

Inhalers were used by all participants, but the self-perceived skill of correct usage varied. Experiences of practical issues with inhalers were common. Participants reported that they had received inhaler training from their general practitioner, in the pharmacy, or at pulmonary rehabilitation. When inhaler training was provided it was believed to be helpful. Still, a few participants stated that they had never received inhaler training, or they had no recollection of receiving prior inhaler training. In some cases, inhaler type was adapted after assessment from healthcare professionals because insufficient inhalation technique was detected. One participant emphasised that they found the inhaler training more useful when they could use demo-inhalers rather than their own device, as this allowed for repetition.

[About inhaler training in pulmonary rehabilitation] Yeah, it was alright. I was fresh in the game related to the use of these kinds of medicines, so to get a more thorough introduction than what they say in the pharmacy, and also the doctor just prescribes it. No, so it’s a bit like, it’s very nice that they do it.

(Participant 8, male)

Almost all participants managed their own medicines themselves, even those who received their medicines from their partners or home care nursing. Although patients self-managed their medicines, a few still needed help managing practical issues. One participant expressed frustration around constantly needing to ask for help with practical issues of medicines. This resulted in that patient no longer requesting help from home care nurses regarding these issues. If the participants had spouses or close relatives, then the relatives often provided help with medicines, such as getting medicines from the pharmacy. However, one participant highlighted that they did not want relatives to be too closely involved with their medicines, as this would put burden onto the relatives.

[…] and for that matter [decongestant medicine], but it has a tendency to be forgotten, and I become tired of nagging about it. […] For them to help me with it, because it is not easy for me to do it alone. […] And I am tired of nagging so much, that’s what I’m thinking. Thus, things will unfold as they do, things could have well enough been avoided, if [home care nursing] would have been better at that part.

(Participant 6, female)

Lack of access to medicines

Some of the patients had experienced that their medicines were unavailable to them. This was either because healthcare professionals were gatekeeping treatment or lack of access due to medicines shortage. Patients described episodes of healthcare providers denying them medicines: one patient described how they wanted an inhaler with greater effect, but the prescriber refused because the patient was not sick enough; other patients described not receiving treatment post-discharge because of healthcare providers’ negative attitude towards COPD or lack of knowledge about treating COPD; finally, one patient had also described that they had to be rehospitalised because the medicine they needed could not be provided in intermediate care.

[…] I have had a short-term stay in nursing home, and [the nurse] screamed at me and waved her arms right up in my face, telling me: “you’ve recovered, you’re not supposed to have more [medicine]!” […] “There’s missing a tablet, the one from [the hospital].” And she exploded, “you’re not getting more medicine, you’ve recovered!”

(Participant 10, male)

Lack of effect from medicines

A few of the participants had experienced no issues with their medicines, however, most had some complications related to their medicines. The biggest issue was that their medicines were perceived as not effective enough. Many of the patients wanted their medicines, especially their inhalers, to have a greater effect. However, some patients had found a balance between getting the effect they wanted from their medicines and taking too much. Many patients had good effect from short courses of oral corticosteroids during exacerbations, but some also believed that the full effect was only achieved when oral corticosteroids were combined with antibiotics. In general, the patients thought that their medicines helped to some degree, because it was noticeable if they did not take their medicines.

[…] [inhalers] are not medicines which are developed for patients with COPD. And there is no medicine today. It’s only for asthma. But, of course, it does help. But it’s not as effective as other medicines, you could say.

(Participant 3, male)

Experiences of medicines-related issues

Almost all the patients had experienced side effects as complications with their medicines. The patients had experienced dry mouth and tachycardia from their inhalers, nightmares from smoking cessation medicines, general discomfort and cardiovascular side effects from oral corticosteroids, and gastrointestinal side effects (i.e., nausea) from antibiotics. In many cases, the side effects outweighed the benefits of the medicines, resulting in quitting or changing their treatment. One participant took short breaks from certain medicines to avoid getting side effects. Participants had also experienced side effects from non-proprietary medicines, which caused negative attitudes towards non-proprietary medicines and a preference for proprietary branded medicines. A few participants feared getting side effects, especially from new medicines they had not previously used. One participant described how they were negatively influenced by reading about others’ experiences with medicines, which made them postpone starting their newly prescribed medicines.

When I read the list of side effects, then I don’t want to start using them. Right, because I’ve been okay without. But of course, it would have probably been easier if I used the medicines, right. But I’m a bit afraid of getting side effects, right. In such bad shape from before, so I don’t want side effects on top of it all. And what I’ve read about the [medicines] now, is that there are some that get side effects from it.

(Participant 5, female)

Some of the participants had received continuous assessment of their medicines while hospitalised, however, a few participants had experienced episodes of medicine errors while in hospital. A few participants had also been provided assessment and counselling regarding their medicines in the hospital-led pulmonary rehabilitation. A few patients described preventative measures they took at home, such as monitoring oxygen saturation for early detection of exacerbations or having rescue packs of oral corticosteroids and antibiotics at home.

Patients recognised the contribution pharmacists can make in terms of medicines, such as detecting interactions or providing information about medicines and side effects. Also, because actual use of inhalers can differ from prescriptions or recommendations from physicians, it was helpful when pharmacists could find solutions to this problem. Most of the information the participants received in pharmacies was usually focused on new medicines only.

[…] No, I don’t think I received [information about medicines at the pharmacy]. No, I don’t think I did. But it was medicines I had used before. […] I have used [my medicines] for many years, right, the same type. But if I get new medicines, then they do go through them at the pharmacy. […]

(Participant 5, female)

Secondary analysis

Inductive codes from the primary analysis were sorted into the TDF and summarised into determinants. Nine out of the fourteen domains of the TDF were used to describe the codes. The determinants were separated into barriers and enablers within the domains by TN and checked by DW (Tables 1 and 2).

Table 1 Medicines-related barriers mapped to the Theoretical Domains Framework (TDF)Table 2 Medicines-related enablers mapped to the Theoretical Domains Framework (TDF)