Ethics statement

Ethical approval for this study was granted by the scientific and ethics committee of Christian Medical College, Vellore, India known as the Institutional Review Board (IRB) of CMC Vellore vide IRB min no. 11381 dated 27.06.2018. and approval was granted from the Health Ministry’s Screening Committee of Indian Council of Medical Research with proposal id 2018–0706. This study is one part of a large mixed-method study which was approved by the Research Governance body of the University of Edinburgh. Written informed consent was obtained from all the participants who volunteered for the study.

The objectives of our qualitative study were guided by the theory of planned behaviour (TPB), wherein we wanted to know about the attitudes, social norms, perceptions and barriers to health behaviour among the patients of CRD and in the community. Our topic guide was constructed keeping these objectives in mind and elicitation of the lived experiences from the patients of CRD was a part of such inquiry. Guided by TPB, we had conducted interviews among caregivers and the key-informants to obtain information about societal barriers, perceptions of community about CRD and their opinions on related health behaviour. The narratives from the patients, caregivers and the key community members thus obtained were interpreted by thematic analysis framework to arrive at the results.

Setting and study design

Our CRD patients were from a rural community development block (administrative unit) with a population of 128,000; they had low literacy levels and were from lower socio-economic classes. They utilised health care services provided by the Rural Unit for Health and Social Affairs (RUHSA), a secondary level hospital of Christian Medical College, Vellore located in the block, through its 18 outreach clinics (in 18 clusters) in the community providing primary care. This study was conducted from September to December 2018. The qualitative survey guide was developed from the five constructs of the theory of planned behaviour that included CRD related behaviour, behavioural intention, attitude, subjective norm and perceived behavioural control. We hypothesised that the five components of the TPB would better predict CRD-related behaviour.

This study used qualitative research methods to collect information. A total of eight focus group discussions (FGDs), involving 51 participants, five in-depth interviews (IDIs) and four key informant interviews (KIIs) were conducted–sufficient, through our pilot-testing, to achieve data saturation. FGDs were conducted among the patients with CRDs, IDIs with the care-givers and KIIs were with key community members.

Community engagement, focus group discussions and the interviews

Prior to organising the focus group discussions and the interviews, community engagement was initiated with key community members including panchayat (local government) leaders, teachers, village leaders and self-help group members (small self-reliant, financially independent local women groups involved in income generation and community influencers) to apprise them about the CRD program and share their views and opinions towards it. It helped us in strengthening the relationship with the community and carrying out the study.

Participant selection: For the focus groups, initially, a sampling frame of all individuals with a diagnosis of CRD was developed from out-patient department registers of the secondary hospital and electronic database of outreach care services. Sampling techniques were refined through discussions with the health care workers, and patients were added based on their knowledge of patients living with CRD. Study participants were chosen purposively to represent the diversity within the study population in terms of age, gender and type of CRD. The inclusion criteria were adults above 18 years, both men and women who’d been diagnosed with CRD (including asthma, COPD or bronchiectasis) and resided permanently within the study region. The health care workers made home-visits to inform the potential participants about the study and to arrange a time and date for discussions. FGDs were conducted separately for men and women, stratified by age (<50 or ≥ 50 years) for homogeneity in group composition. Work environments and cultural practices of males were different from females, whereas the attitude and perceived control over a behaviour varied more by age, which made it pertinent to divide them into such groups. Written informed consent was obtained from the participants after they went through the information sheet with details of the study, in vernacular language.

Development of FGD guides: FGD guides were prepared based on themes resonating with the constructs of TPB; there were suitable prompts for symptoms of disease, risk factors and health behaviours, attitudes, social norms, the influence of peers, family members and the community and their belief in themselves and dependence on others for performing the behaviour. All these guides were prepared in English, translated to local vernacular language (Tamil) and back translated to English to retain its context and the meaning. It was piloted in a non-study village and the guides were refined for the definitive study.

A social scientist in our research team conducted the FGDs in the local language—assisted by an observer who took notes and captured interactions within and between participants and the moderator. Focus group discussions were conducted with the eight groups of patients in their respective villages at a place ensuring confidentiality. The focus groups with homogenous composition in terms of age, disease and gender and belonging to the same village helped the participants to volunteer opinions and attitudes about their disease experiences and provided us with enriching information about CRD perception and health behaviour.

The in-depth interviews (IDIs) explored the experiences of the caregivers and their views on caring and living with the patient with a CRD. The key informant interviews (KIIs) gathered community perceptions and opinions about CRD. The key informants had specific knowledge about and influence in the community. They were either local leaders or administrators in the community and comprised of block (administrative unit of local government) development officer, panchayat member, block medical officer and head of high school. They were chosen based on their experience and knowledge of the community and/or the health problem. The social scientist steered the IDIs whereas the key informant interviews were undertaken by the principal investigator (PI), a clinician with experience in CRDs. IDIs were conducted at home and KII at the workplace of participants.

All interactions were face-to-face. An audio-recorder was used to record the FGDs and the interviews. The length of the FGDs was 60–90 minutes while most of the interviews were about 30–45 minutes in duration.

Analysis of qualitative data

The FGDs and interviews were transcribed in verbatim and translated into English. Analysis was conducted using a thematic analysis framework. An inductive coding frame was developed collaboratively between the investigators to allow the themes to emerge from the content of the raw data. This was done by reading the transcripts and also listening to audio. BP, RI and HR read through the transcripts to become familiar with the data. In doing so we were cognisant of our own perspectives on the problem, and while we are a multi-disciplinary group, our natural inclination was to impose a biomedical framework on the data. Being in a position of interacting with such patients on a daily basis, experience of working in the community for many years and closely observing the community where they come from and where this particular research was conducted, our inclination for biomedical terms was natural and reflected in development of some of the themes, as in, causation, health behaviour and treatment seeking. However we went about with an open mind to capture participants’ perspectives, experiences and emotions during the process of interviews and discussions. The process of reading of the transcripts was an enriching experience of delving into the participants’ world and understanding their views. The interpretation was obtained by looking into the viewpoints of different stakeholders in their context. Nevertheless, the final result was an outcome of an iterative process of reading and re-reading the transcripts and understanding it in the context of participants’ environment and own knowledge.

Initially data from two FGDs, one KII and IDI each were coded separately by BP and HR and quality checked by RI and DW. Data from the transcripts were charted into a matrix using Microsoft excel, adjacent to appropriate codes; any emerging codes were also added to the matrix. Subsequently themes and sub themes were developed by analysing the text and finding commonalities and differences within and between the codes. Descriptive accounts of the data were written by BP and RI based on the chart developed. As part of the analysis, similarities and differences were explored between the different data collection methods and different community members’ accounts. Such interrogation of the descriptive accounts was used to generate an explanatory account of the data. The final document, with the themes and the narration, was read and approved by all the authors.

Understanding of chronic lung disease and associated health behaviour

Lived experiences with the disease

Social norms, attitude and other factors influencing health behaviour

Principal findings, and strengths and limitations of the study

Interpretation in the light of published literature

This paper highlights poor awareness about CRD among rural low literate population and their associated health behaviours–placed in the context of their social-cultural milieu, the health and social consequences of the disease and the barriers and facilitators to health behaviour.

For a population to adopt health behaviours which prevent chronic disease and ensure adequate management, it is essential to have a understanding of the disease, its associated risk factors and treatment options and awareness of the benefits and outcomes of their health behaviours. Healthy behaviours are feasible–financial, social or cultural constraints may limit choice. CRD awareness levels in this rural community were limited to symptoms, duration, seasonality and available treatments for exacerbations of symptoms (whether or not they worked). There was poor understanding of the condition, causes and risk factors for the disease with prevailing misconceptions—like spread of the disease from one person to another through food or contact. Respondents were typically unaware that their disease was not curable, and didn’t appreciate it could be well controlled by regular medications, especially uninterrupted use of inhalers for maximum benefits.

Our findings resonate with those from similar studies; a qualitative study on patients’ experiences of living with chronic respiratory disease in Uganda found low awareness levels and lack of knowledge about the condition with an unfulfilled expectation of being cured and misunderstandings among the family members and community [14]. Description of symptoms without knowledge of the disease condition has been reported in a study from Malawi [15]. This is in contrast to findings from the high income countries where patients typically have a good understanding of their disease, its severity, the system involved and the prognosis [16, 17]. Low awareness levels and understanding of the disease affect health seeking behaviour and/or health practices; this is often emphasised by theoretical models such as the Hierarchy of Effects Model (HOEM) which proposes that ‘proximal’ variables like awareness are causally linked to ‘distal’ variables like behaviour change through a series of intermediate measures, including social norms, attitudes and intentions [18, 19]. Similarly psychological theory-based models like the Health Belief Model (HBM) and the Integrated Behaviour Model (IBM) which incorporates the Theory of Planned Behaviour (TPB) also emphasise knowledge as a key determinant of health behaviour change [20].

The CRD related health behaviours we observed in our study participants were an outcome of a combination of factors–limited knowledge about the disease and its long term implications, prevailing social norms and cultural practices, financial and health system constraints, stigma associated with the disease and its psychological impact and disease-related social marginalisation. Biomass fuel was commonly used for cooking in the rural community; biomass fuel being one of the known indoor air pollutants [21, 22] and a common risk factor for CRD in LMIC settings [1, 22]. It was quite surprising to find that most of the participants were unaware of it as a risk factor for their disease and were happy to continue using it, even arguing in its favour as a long followed cultural practice. Nevertheless, some respondents highlighted cost as a reason to continue with these cooking methods–in poor settings, awareness of risk factors is often insufficient to avoid them. Other studies in LMIC settings have demonstrated limited awareness of the relation between smoke and respiratory health, contributing to extensive exposure to mostly biomass-related smoke [23].

We observed the common practice of attending nearby medical stores or get some local treatment for temporary relief of symptoms without consulting a doctor or going to a hospital practising western medicine. Participants also followed home remedies like avoiding certain types of food, and often sought the help of traditional systems of medicine, initially, with a belief of cure from the disease altogether. The delay in accessing care from mainstream healthcare services can result in disease progression, poor quality of life and additional economic burden on the family and the health system [24, 25]. Improving health literacy and understanding of the disease can lead to early health seeking from mainstream health care system [15]. Also the role of health care providers (HCPs) in communicating with patients about diagnosis, treatment and the course of the disease is extremely important [26–28].

The use of inhalers among the CRD patients was infrequent and irregular. Social norms influenced a person’s intention and perceived control to perform the behaviour–for example, although people knew inhalers provided quick relief of symptoms, they were reluctant to use them in public as they felt their communities did not approve of such behaviour which would result in social marginalisation. Previous studies have reported that patients with asthma felt embarrassed while using inhalers in public [29]. Family and community norms reflect the social and environmental context within which an individual’s behaviour takes place, as described by the Social Ecological Model by McLeroy et al., 1988 [19, 30]. Individual health behaviours are influenced by perceived approval, or disapproval, of the behaviour by significant others (family or community), known as societal norms as per Theory of Planned Behaviour [20]. People who have good family support and are encouraged to perform the behaviour are more likely to do it—as explained by Ajzen’s Theory of Planned Behaviour [31]. Also the accessibility and availability of modern health systems and medical devices (coupled with their affordability) are other factors which can act as deterrent to appropriate health behaviour. Study participants emphasised the lack of availability of inhalers at government health centres—and they sometimes could not afford to buy them from pharmacies.

One of the surprising findings of our study was the limited knowledge or practice of breathing exercises by the participants, mainly due to limited information provided to them by heath care providers. Breathing exercises include different breathing techniques (e.g. pursed lip breathing) which can improve functional exercise capacity, ventilation and physical component of quality of life [32, 33]. Exercise is one of the vital components of pulmonary rehabilitation, presently considered to be the most accepted method of non-pharmacological treatment for improving the quality of life and functional capacity in patients with COPD and other CRDs [34, 35]. Therefore investing in pulmonary rehabilitation and breathing exercises, may help improve the quality of life of patients with CRDs. Also, better communication by health providers to patients about the breathing exercises and their benefits can prove invaluable in promoting such health behaviour.

The lived experiences reported by the participants suggested that CRD not only affected them physically but also caused psychological distress. It was not just another disease–it caused social seclusion and stigma in the community and led to depression. This disrupted their lives and their health behaviour. Such types of lived experiences were also reported by other studies among CRD patients, be it in the LMICs [15, 17, 30, 36–38] or in the developed world [39–42]. These experiences contributed to personal barriers to seeking treatment and adherence to treatment and hence overall physical and mental health outcomes [43, 44].

The positive elements which could be pivotal in changing health behaviour among these CRD patients were family support and the positive attitude of the patients towards regaining health. Family plays a big role in providing support–physically, economically and psychologically and therefore can be utilised to modulate patient’s health behaviour. However, changes in individual knowledge, awareness and attitudes would need to be accompanied by structural changes, for example–gas connections by the government at a subsidised rates that could reduce dependence on biomass fuel. Self-assured individuals using inhalers could act as catalyst of change to motivate others. Suggestions coming from the participants showed the importance was community engagement–solutions being grounded in the community where they lived with the problem. Implementing them may strengthen the health system and act as positive influences to respiratory health behaviour.

Implications for policy and practice

A change at the policy level towards CRD focussing on investment to address financial barriers, education and health awareness, as well as implementation and availability of inhalers for use at primary care level can lead to significant change in perception of CRD in the community and behavioural practices among patients. These are often considered as ‘upstream’ factors or factors at the base of “the health impact pyramid” [45] which are difficult to achieve and require political will and government policy. They are, nevertheless, most effective and ultimately reach broader segments of society. Concerted efforts at the level of primary care practices and a better communication between patients and the HCPs can allay fears and misconceptions towards the disease, provide precise health information and promote healthy behaviour. Engaging the community with culturally acceptable and locally available media and methods, improving their awareness and acceptance of CRD prevention and treatment through educational interventions, building trust by improving interactions with the community through community-based health providers can result in immediate impact and outcomes.

This study helped us in identifying gaps wherein intervention could be useful, helping us in its design and delivery. Our intervention included culturally acceptable and easy to understand media and methods for improving awareness about CRD and related health behaviour. This was not limited to patients alone but was for dissemination in the community and the caregivers to help reduce stigma and generate social support. Detailed information about health practices related to CRD was given to the patients by the health care providers to plug the gap of limited or misinformation about behaviour practices; this was reinforced by training and demonstrations of health practices (inhaler use and breathing exercises). Inhalers were made available to all participating in the intervention and the community was engaged throughout the intervention period with appropriate health messages being delivered. Belief in themselves to perform health behaviour, along with community support might contribute to better health outcomes, thereby improving quality of life among the patients of CRD.