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

COPD is a major cause of mortality and morbidity in Brazil, driven primarily by tobacco exposure and environmental pollutants, and imposes high healthcare utilization and costs. Patients experience dyspnoea, cough, reduced exercise capacity and QoL, frequent exacerbations, and multiple comorbidities. Anxiety and depression are highly prevalent in COPD and worsen outcomes, yet are often under-recognized and undertreated. Although smoking cessation and physical activity (PA) improve outcomes, physical inactivity is common and is compounded by mental health problems. Pulmonary rehabilitation (PR) is effective but remains inaccessible in Brazil and other LMICs due to limited awareness, referrals, and logistical barriers. Community-based PA programmes may offer a feasible alternative and maintenance option. The study aimed to explore experiences of living with COPD and participation in PA among people with COPD in an urban Brazilian setting, including those with anxiety and depression, to inform locally relevant community-based PA interventions.

Prior work shows: COPD symptoms and exacerbations drive impaired QoL and costs; COPD patients commonly have multiple comorbidities, with anxiety and depression exceeding general population rates and linked to poorer outcomes. Regular PA is associated with reduced hospitalizations and mortality, yet inactivity is prevalent in COPD and worsened by depression and anxiety. PR, a comprehensive intervention including exercise, education and behavior change, improves symptoms, exacerbations, lung function, exercise capacity and QoL, but access is limited in Brazil/LMICs, with cost and distance reducing uptake and adherence, especially among those with depression. Social support and adequate training can reduce barriers to PA. Perceptions of PA in COPD have been studied in high-income countries but not in Brazil, indicating a gap this study addresses.

Design: Qualitative study using semi-structured telephone interviews. Setting and period: São Bernardo do Campo, São Paulo, Brazil; October 2020–April 2021. Ethics: Approved by University Center ABC Medical School (CAAE: 24994819.4.0000.0082; Seem n° 4.258.048) and University of Birmingham (ERN_19-1901). Informed consent obtained; confidentiality and withdrawal rights assured. Sampling and recruitment: Patients with established or newly diagnosed COPD were identified from Basic Health Units (primary care) and specialized polyclinics, and from a COPD screening study. Purposive sampling based on history of anxiety/depression, COPD severity, recency of diagnosis, age, gender, PA levels, and education. Exclusions: inability to consent, moderate/severe cognitive impairment, asthma. Data collection: One-to-one telephone interviews (~60 min), conducted at home by the PI (female PHC physician and PhD student). Topic guide explored knowledge/understanding of COPD, anxiety and depression, PA, and opinions on community PA. Interviews audio-recorded, anonymized, verbatim transcribed; field notes made. No repeat interviews; transcripts not returned for participant checking. Data collection ceased at thematic saturation after 21 interviews. Baseline measures: Sociodemographics, smoking, comorbidities, spirometry (FEV1 pre/post), mMRC dyspnoea scale, CAT; mental health and PA instruments: PHQ-9, GAD-7, Godin Leisure-Time Exercise Questionnaire, GHQ-12. Analysis: Thematic analysis using the Framework method. NVivo 11 (v12.6.1) used for data management. Familiarization and draft coding by SM; coding framework developed iteratively with the research team, then applied to all transcripts (SM & ER). Data summarized in a framework matrix; themes/subthemes identified and discussed with the team. Reflexive practices employed to enhance rigor. Sample size: 23 invited; 2 withdrew post-screening; 21 completed interviews.

Participants: n=21; mean age 67 (range 52–85); 11 female. COPD severity varied (GOLD: mild 4.7%, moderate 47.6%, severe 42.9%, very severe 4.7%). Only 23.8% were moderately active on the Godin questionnaire; none were categorized as active; 76.2% insufficiently active/sedentary. mMRC dyspnoea grades 2–4 in 85.7%. Current smokers 38.1%; former smokers 61.9%. CAT mean 17.14 (SD 7.7). Many had multiple comorbidities (71.4% >1 comorbidity). Mental health: Self-reported anxiety 47.6% and depression 14.3%. Screening indicated anxiety in 47.6% (GAD-7) and depression in 57.1% (PHQ-9), exceeding self-reports. GAD-7: 47.6% none-minimal, 23.8% mild, 19.1% moderate, 9.5% severe. PHQ-9: 38.1% none-minimal, 28.6% mild, 19.1% moderate, 9.5% moderately severe, 4.8% severe. GHQ-12 indicated high psychological distress overall. Themes: 1) Knowledge about COPD and its management: Low disease awareness; symptoms often attributed to age/obesity/sedentary lifestyle; strong recognition of smoking as main cause; difficulties quitting and feelings of guilt/stigma. Perceived primary care knowledge gaps with diagnostic confusion (bronchitis/asthma) and missed opportunities from repeated respiratory infections. Case-finding in primary care valued; gratitude for access to diagnosis/treatment. Barriers: delays in specialist access/medication delivery; concerns about medication effectiveness; awareness that continued smoking worsens symptoms and reduces medication effect. 2) Self-perception of life with COPD: COPD viewed as chronic/incurable; major limitations across daily life, work, mobility, sexual life, and social activities; reliance on oxygen reduced social participation; feelings of fear, shame, loss of freedom and independence; increased psychological burden. 3) Opinions on physical activity (PA): PA perceived to improve well-being, mood, energy, and respiratory symptoms. Spaces/modalities: community squares, BHUs, associations, home; activities included walking, dance (e.g., Zumba/gypsy dance), strength training, outdoor gym equipment, gardening; typical frequency ~2 times/week for 30–40 minutes. Strong interest in a COPD-specific community PA programme. Barriers: dyspnoea, lack of time/motivation, depression, comorbidities, obesity, weather, accessibility, distance/transport. Enablers: perceived physical/mental benefits, symptom improvement, proximity to PA venue, group activities/social interaction. PR: generally positive among those aware/attended (improved symptoms, knowledge, breath control, reduced oxygen needs, social support), with barriers of distance and transport costs; one reported limited benefit likely due to non-optimized treatment. 4) Knowledge/experiences about depression and anxiety: Few could describe depression symptoms; perceived causes included disappointments, financial problems, losses. Reported symptoms: sadness, anhedonia, lack of initiative, irritability, low tolerance, social isolation, appetite loss. Anxiety and depression seen to worsen dyspnoea and daily functioning. Depression both deterred PA and, for some, improved with exercise. 5) COVID-19 repercussions: Reduced access to services, PR, and PA opportunities; increased social isolation, psychological distress, anxiety, depressive symptoms; fear/shame about cough being mistaken for COVID-19. Mask use perceived variably: protective for one, breathlessness-worsening for another. Overall: Marked need to improve COPD knowledge among patients, public, and primary care professionals; community-based PA/PR programmes near homes considered valuable; mental health significantly influences PA engagement.

The study addressed its aim by revealing how people with COPD in an urban Brazilian setting understand their disease and how psychological factors shape engagement with PA. Participants recognized smoking as causal but had low awareness of COPD and often experienced diagnostic and management gaps in primary care. They perceived substantial life limitations and psychosocial burdens, reinforcing the bidirectional relationship between dyspnoea, anxiety/depression, and avoidance of activity. While PA was widely valued for improving well-being and respiratory symptoms, multiple barriers—especially accessibility, transport, dyspnoea, motivation, and depression—limited participation. Interest in proximal, community-based, COPD-tailored programmes was strong. COVID-19 further curtailed access to care and PA and exacerbated psychological distress. These findings underscore the need for earlier detection and better COPD education in primary care, integrated consideration of mental health in COPD care, and the design of accessible, locally delivered community PA/PR programmes with social support components to mitigate barriers and enhance sustained participation. The results add context-specific evidence from Brazil to inform policy and service design in LMIC urban settings.

This qualitative study highlights critical gaps in COPD knowledge and management among patients and primary care providers in Brazil, the heavy psychosocial burden of living with COPD, and the central role of mental health in shaping PA engagement. Participants valued PA and expressed enthusiasm for COPD-specific, community-based programmes close to home, but faced barriers related to accessibility, dyspnoea, motivation, comorbidities, and depression, further compounded by the COVID-19 pandemic. The study supports: (1) strengthening COPD awareness, early detection, and primary care capability; (2) integrating mental health assessment and support into COPD care; and (3) implementing accessible community-based PA/PR programmes leveraging local resources and social support. Future research should co-design, implement, and evaluate community-delivered PA/PR interventions in Brazilian urban contexts (and similar LMIC settings), assess strategies to overcome transport/access barriers, and test integrated models addressing mental health to improve uptake, adherence, and long-term outcomes.

The study occurred during the COVID-19 pandemic, which hindered identification and recruitment of COPD patients through health services and reduced in-person interaction; interviews were conducted by telephone, and transcripts were not returned to participants for member checking. The sample was limited to one urban municipality and included 21 participants, which may affect transferability. Access and service disruptions due to the pandemic may have influenced participants’ experiences of PA, care, and mental health.