Living with COPD and its psychological effects on participating in community-based physical activity in Brazil: a qualitative study. Findings from the Breathe Well group (2024)

21 participants were interviewed and their baseline characteristics are presented in Table 1. Participants’ average age was 67 (ranging from 52 to 85), 11 were female and COPD severity varied. Only 23.8% of the participants performed some type of PA on a regular basis (moderately active)44,45. 16 (76.2%) were experiencing severe psychological distress on the GHQ-12 scale46,47 (scoring > 20) (Table 2). The GHQ-12 anxiety scale (GAD-7)42,43 and the Patient Health Questionnaire (PHQ-9)40,41, used to screen for anxiety and depression revealed higher prevalence of depression than participants’ self-reports of diagnosed depression (Table 2).

Full size table
Full size table

Figure 2 visually displays the themes and subthemes generated from the interviews. The following themes and subthemes about the practice of PA were identified:

Themes and subthemes.

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THEME 1: Knowledge about COPD and its management

This theme shows the participants’ knowledge about the disease, its signs and symptoms, its cause, management, as well as the barriers and facilitators for the adequate care of COPD. Most patients were unaware of the cause of COPD symptoms, attributing them, for example, to age, obesity and sedentary lifestyle and not seeking appropriate health care.

Subtheme 1.1 Information needs and awareness about the disease

The disease was considered unknown until the diagnosis was confirmed, at which time many stressed the surprise that it was at an advanced stage:

Look, unfortunately I don’t know anything yet, I just know it’s a lung problem…when I found out I was already like this.” P6

Subtheme 1.2 Behaviours contributing to COPD cause

Most of them started using cigarettes in childhood. Those who were still smoking reported difficulties in quitting, feelings of guilt and social stigma in relation to failure to quit smoking, seeing such failure as the result of a “character flaw” and recklessness:

“So all the doctors that I went to, attributed that most of it was the cigarette, of course and I cannot deny that, but it came suddenly, I don’t know why, I had never felt anything at all. I started smoking very early, I started smoking at the age of 14 to 15, so I smoked for 50 years.” P14

Subtheme 1.3 Physicians’ lack of knowledge about the disease

Some participants felt that PHC physicians did not realise that their frequent visits to the service for lung infections could be a sign of COPD:

“A lot of shortness of breath, to the point of having to go to BHU, having to call SAMU [abbreviation for Emergency Mobile Care Service] because I couldn’t stand to walk. So that’s where the doctor didn’t think it was normal, every time I went, I was diagnosed with pneumonia.” P11

Diagnostic confusion with bronchitis and asthma on the part of the physician were reported as a barrier to diagnosis and correct treatment:

It’s like this, when I went to the doctor, I said, I couldn’t breathe, breathing is everything, they gave me medicine, this is bronchitis, I’ll give you a medicine for bronchitis, ah! this is asthma, and I was given medication for asthma and then I was always in that difficult situation and never got better, right? After a little while, I started using that little salbutamol pump, it's salbutamol, right?” P10

Subtheme 1.4 Case-finding for COPD in primary care and treatment opportunity

Case detection was considered important and beneficial for patients who had participated in the screening study. Both symptomatic and asymptomatic patients reported that the desire to undergo the examination for lung function/health, was the motivation for participating in the research. They expressed gratitude for the opportunity to access diagnosis and treatment at the BHU:

“I thought it was really good, because if I didn’t do that, I might not even be alive today. I didn’t know anything…I started to treat myself.” P18

Subtheme 1.5 Lack of adequate drug treatment

Free treatment and access to specialised health services were considered fundamental by the participants, but the waiting time for consultations with the specialist and sometimes the delay in delivering medication were seen as a barrier:

I take my medication; I never had a problem taking the medication.” P11

One patient felt that the medication used had no effect and questioned the existence of better therapeutic options:

“Look, all I know is that it makes me very sick, because I can’t breathe properly…I take inhalation, I take Alenia too and it still doesn’t solve it, it’s more difficult for us, if we had another means of having a better medicine that improved more, it would be better, but nobody knows, and I don’t know.” P19

Subtheme 1.6 Impact of smoking on treatment

Those who continue to smoke were aware that smoking worsens their symptoms and that the effect of medications decrease, and the disease worsens:

“It relieves when I pump, it relieves, a little later I smoke, then it all comes back again.” P17

THEME 2 - Self-perception of life with COPD

Participants’ experience of life with COPD and its impact.

Subtheme 2.1 Feelings and expectations about the future and impact on QoL

In the view of the participants, COPD is an incurable disease, however, they showed hope and confidence in the treatment:

“Well, what I know is what the doctor says, that it is a chronic disease, that there is no cure and that I will take these drugs for the rest of my life.” P13

Patients perceive COPD as an extremely limiting disease, which causes profound and negative impacts on their QoL, causing limitations in several areas. The disease has limited the ability to work:

“Look, it caused me a loss that I can no longer clean my house…I was an active person, I was a cleaning lady, I used to clean three times a day, and today I can’t do it anymore, I can’t sweep a house…I can’t walk long distances, depending on the place, the time I’m in, walking indoors also bothers me, because if I’m in a crisis, the shortness of breath is very big, so it totally damages my life, my mobility.” P11

Sex life is an aspect of QoL that can be affected in individuals with COPD because of the respiratory or physical symptoms that accompany it, such as dyspnoea, weakness, fatigue, and reduced PA. One participant showed suffering due to the effect of the disease on his sex life:

“I’ve had this problem [for a while], a sex problem, I can’t do it anymore.” P19

COPD negatively impacted participants’ social lives. Due to the persistence of dyspnoea and fatigue, patients tended to be more limited in their homes, failing to perform their activities due to fear, shame, a sense of loss of personal freedom and independence, often with changes in roles and responsibilities and self-inflicted psychological burden:

“It took away all my freedom…socialising with people. As I must take oxygen everywhere I go, it’s very annoying, it bothers me sometimes, so I stopped going to places I used to go, to the house of a son, a granddaughter, in short, people I know…even before the pandemic, I no longer went to places like that, very rarely, that is, I stopped doing the things I liked.” P14

THEME 3: Opinions on PA practice

This theme portrays the participants’ perception of PA practice and its impact on COPD symptoms and quality of life (QoL):

Subtheme 3.1 Well-being and improvement of respiratory symptoms

The benefits of PA perceived by the participants:

“…above all it’s the well-being that gives you…sometimes you go, suddenly you’re a little upset or you’re a little tired, but you go and then you change, your disposition is different, when you practise PA, the disposition you have is much better, and I think this is one of the biggest benefits, at least for me, it is this, and your disposition changes, you get full power…you start cleaning, you finish cleaning, and you’re still feeling good, you know?…unlike when you don’t do it, you get lethargic, you know, everything makes you tired, so I think your mood improves is…I improve 90% at my disposal.” P2

Subtheme 3.2 The practice of PA and the spaces and modalities used

Participants who performed PA reported using physical spaces in the community (squares, BHU, associations) in addition to their own homes:

“When we don’t do physical activity at the health centre, we do it in the square, we go to the church square” P21

Participants who performed PA used to perform it with an average frequency of 2 times a week:

“I like it and I feel very good every time I do it, the week I do it, I do it twice a week, I do it and I feel good, so, in general,…I do it for half an hour to a few 40min.” P14

The most frequent modalities were walking, dancing, bodybuilding, using outdoor, communal gym equipment and one patient mentioned gardening:

The only thing I did was walk.” P1

“A gym class, abdominal, …Zumba class and bodybuilding, it was always in this line right there.” P2 “I do gypsy dance.” P21

“My physical activity is that I am a bricklayer…and I work in my garden, it’s a good thing.” P10

Subtheme 3.3 Community PA programme

In the opinion of the participants, the existence of a PA programme designed for COPD would be very important and all showed interest in participating:

“It would be good, yes. It would be excellent. Oh! I would definitely be the first to sign up to participate.” P12

Subtheme 3.4 Barriers and enablers to the regular practice of PA

Figure 3 visually displays the barriers and enablers for the practice of PA in patients with COPD. Participants reported that living close to the place that offers PA programmes facilitates the practice:

Barriers and enablers for the practice of Physical Activity in patients with COPD.

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“…whereas if you are going to depend on a car, bus, then it is difficult… the location I think is very important.” P2

Lack of time, dyspnoea, accessibility, climatic conditions, physical comorbidities, and depression were cited as possible barriers to the regular practice of PA:

If I walk in an open place, wow, I’ll go far, I’ll feel good, now, if I go up a ramp, if it’s a very aggressive ramp, I’ll get tired, you know? …not being able to walk is bad, for example, if I walk and if I get tired, I don’t want to go.” P20

The opinions about depression and PA varied. For some, depression is a deterrent, while for others, exercising leads to an improvement in mood and depressive symptoms:

I believe that a person with depression will not even have the courage to do any exercise.” P3

“I think when I do exercises, PA, I feel better, right? Only if I’m too upset for me not to go, because I think a depressed person doesn’t want to, right? And this has happened to me, not wanting to go, but it’s very rarely.” P2

Subtheme 3.5 Perceptions about PR

PR was mentioned as a specific PA for COPD by four participants. Three out of four reported their positive perceptions referring to gains on physical and mental health and knowledge for self-management of the disease and one reported that there was no improvement in his clinical condition, probably because he was not using the required medicines.

The following were mentioned as barriers and enablers for carrying out the PR:

Barriers

Distance from PR referral centres and problems with public transport and non-optimised treatment:

“But there are times when he is late, I already think they do it on purpose, I think, I don’t know …we are depending, it’s very annoying, but even so, I accept, because I don’t have no way to pay the ticket, because I did it three times a week, so I wouldn’t be able to pay the ticket, so I accept.” P13

“Then in the evaluation I didn’t have much evolution from what I was, because I was really bad, then they asked me to go to the doctor, then he said it’s better for you to skip this physiotherapy a little and we’ll do it again in the future” P12

Enablers

Physical and mental well-being, improvement of respiratory symptoms and need for oxygen, breath control, feeling of belonging interpersonal interaction, anxiety control, role of the health team in self-care and local structure:

“I like it and I feel very good every time I do it, in the week I do it, which I do twice a week, I do it and I feel good, well, overall…I realised that I have to use a lot more oxygen, if I don’t exercise, that is, things that, if I stop exercising, decrease the intensity, I have to help myself with other things, in this case, oxygen, so I prefer to exercise and dispense a little oxygen.” P14

THEME 4: Knowledge and experiences about depression and anxiety

Subtheme 4.1 Perceptions about the causes and symptoms of depression and impact of QoL

Participants saw both depression and anxiety as conditions that worsen the symptoms of the disease:

“When I get really nervous, yes. Breathing is bad.” P15

“Because we get sad, we lean in a corner, we think bad, then it does affect the shortness of breath…worse.” P12

Only five participants showed knowledge about depression and its symptoms. Disappointments, financial problems, and personal losses have been identified as possible causes of the illness. The most reported symptoms were sadness, anguish, loss of ability to feel pleasure(anhedonia), lack of initiative, irritability, low tolerance, social isolation, difficulties in interpersonal relationships and loss of appetite:

“For me depression is sadness and anguish, lack of will, lack of initiative, lack of desire to relate to other people, to socialise with other people…I have no desire to do nothing, not even the things I have to do here at home…” P8

Some participants reported that depression can impair QoL and reduce interest and/or limit PA:

“…because if the person is depressed, he will not have the courage to do anything…he will be paralysed there in the corner and what he wants is to hide.” P20

THEME 5: Repercussions of the COVID-19 pandemic on the daily life of people with COPD

This theme portrays the participants’ perception of the impact of the pandemic on their daily lives. The most affected areas in their view were access to PA practice, treatment and services, and health and social life.

Subtheme 5.1 Access to PA practice, treatment, and services

The pandemic negatively impacted access to health services, PR and PA practice:

“Then with the pandemic, there was no more consultation.” P12

“I stopped using gym equipment or hydro because I started this COVID campaign…so I have a sedentary life at home, I cannot go out.” P15

Subtheme 5.2 Impact on social life and mental health

For the participants, social isolation for the prevention of COVID-19 abruptly changed their routines, causing psychological distress, increased anxiety, and depressive symptoms:

“…because today I can’t perform the tasks I used to do, right? And especially now with this pandemic, that to leave the house you must put on a mask, it gets much more complicated for me, right? So I’m practically not leaving the house. Before this pandemic, I would open the door and go out, today I have to do that ritual of alcohol, mask, and not to mention, it is much harder to breathe, so I go from here to the bakery.” P8

Feelings of shame and fear of confusing COPD symptoms with COVID-19 were reported by 2 patients:

“Now with Covid-19, my cough bothers people a lot who keep looking … reluctantly, right?… and they think I have the disease, I imagine …so like this… I feel uncomfortable in public when I start coughing.” P5

Subtheme 5.3 Impact of mask use

Only one participant mentioned the use of a mask as a protective factor for respiratory infections in COPD, while another mentioned worsening of shortness of breath:

“Using the mask is doing me good. It was a barrier. Now I use it almost directly, I do not remove it for anything, because I am very afraid of this disease.” P10

“This whole mask-wearing thing makes me breathless, my goodness, it’s horrible.” P15

Living with COPD and its psychological effects on participating in community-based physical activity in Brazil: a qualitative study. Findings from the Breathe Well group (2024)

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