Background Pulmonary rehabilitation (PR) is an effective strategy to improve breathlessness, health status and exercise tolerance and to reduce readmissions and mortality. In India, there is no government health programme for chronic obstructive pulmonary disease (COPD) management while in the private sector availability of PR is limited. Most PR centres are in urban areas, with few services accessible to rural populations. We aimed to assess the need for PR from the perspective of patients with COPD and healthcare professionals (HCPs: registered medical practitioners and medical officers) in rural Maharashtra.
Methodology Between June and October 2020, we conducted semi-structured interviews with 14 patients with COPD and 9 HCPs to explore their perceptions of, and need for, PR in rural Maharashtra. Interviews were transcribed and analysed thematically.
Results We approached 14 patients with COPD and 9 HCPs practising in rural areas. Five HCPs stated that they did not advise PR for patients with COPD citing poor compliance to PR referral and follow-up of the patients. Patients with COPD had symptoms and needs that could be helped by PR but commented how transportation would be a problem for them to visit a PR centre. In contrast, they could understand the benefits of PR and expressed their willingness to join such programmes. A PR service was established that addressed these needs.
Conclusion Patients with COPD have unmet needs that could benefit from attending a PR programme, but there are barriers at both healthcare and patient levels that we addressed in a new PR service for people with chronic respiratory disease in rural Maharashtra.
- pulmonary rehabilitation
- COPD epidemiology
Data availability statement
Data are available on reasonable request.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Prior research has shown that pulmonary rehabilitation (PR) is an effective strategy to improve the health outcomes of patients with chronic obstructive pulmonary disease (COPD).
However, in India, there is a lack of government-sponsored programmes for COPD management and the availability of PR is limited, especially in rural areas.
Previous studies have highlighted the need for PR in India but have mostly been conducted in urban settings.
WHAT THIS STUDY ADDS
This study adds to the existing body of knowledge by highlighting the need for PR programmes in rural areas of India and identifying transportation as a significant barrier to accessing PR programmes in rural areas.
It also provides insights into the perspectives and needs of both patients with COPD and healthcare professionals (HCPs) in rural Maharashtra regarding PR.
The study highlights the unmet needs of patients with COPD in rural areas, which is a new finding in the context of India.
Additionally, this study resulted in the establishment of the first PR centre in rural Indian settings, providing access to PR programmes for patients with COPD in the area by providing solutions regarding the accessibility, transport, awareness and home-based approach.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Our study emphasises the importance of considering patient perspectives and needs when developing and implementing healthcare interventions.
Our systematic approach to identifying the needs of the local community and establishing the first PR centre in rural Indian to respond to those needs could serve as a model for future efforts to increase access to PR programmes in rural areas.
Patients with all severities of chronic obstructive pulmonary disease (COPD) have reduced physical activity, increased hospital admissions and mortality even when optimal medical care is provided.1 Pulmonary rehabilitation (PR) is a cost-effective intervention involving supervised exercises and self-management education for individuals with COPD,2 with robust evidence that it provides meaningful improvement in shortness of breath, exercise tolerance and quality of life as well as reducing mortality.3,2 PR also reduces the healthcare burden of COPD, by preventing unnecessary hospital admissions and reducing the length of hospital stays4 and is recommended as a core management strategy for all symptomatic patients (Global Initative for Chronic Obstructive Lung Diseases (GOLD)),5 there is some evidence of benefits of PR in low-income and middle-income countries (LMICs)6 in which respiratory illness may be poorly differentiated and there are significant differences in the resources, awareness, culture, profile of the disease and healthcare configuration that affect uptake by clinicians and patients, especially in the rural communities.
The Indian rural healthcare system is a mix of public and private facilities run by modern medicine (evidence-based modern medicine) and complementary medicine encompassing Ayurveda, Yoga and Naturopathy, Unani, Siddha and Homeopathy practitioners.7 Despite the prevalence of risk factors in India (27.2% smoking, 70% of the homes use biomass fuel, especially in rural areas),8 9 there is no government health programme for COPD management. Private sector PR programmes rarely include all recommended components and referral to them is infrequent.8 Most PR centres are in urban areas where diagnostic and specialist facilities are based8 9 in a model of care that focuses on acute management rather than proactive care of a chronically disabling non-communicable disease. There is little understanding about the feasibility of provision in rural areas where PR may be even more important because it helps reduce exacerbations. Likely barriers to provision include a shortage of trained medical practitioners and their limited knowledge about PR, lack of community awareness and reluctance of individuals with COPD to seek help for their slowly progressive disabilities9–11 and underdeveloped physical and social infrastructure.12
Individuals living in rural areas are more exposed to biomass risk factors, such as use of wood for cooking or heating than urban counterparts, thus increasing their COPD risk but reducing the healthcare that could improve the impact of their symptoms. There is thus a need to
explore local health-related perceptions about the need for PR and
to gather views on the design of acceptable, feasible and effective PR programmes.13
The ultimate aim is to inform the development of a PR service, that is widely available with clear pathways from referral to completion of PR14 in order to improve the morbidity of patients suffering from COPD in a rural Indian setting in Pune District.
Materials and methods
The study was conducted in 22 villages of the rural Pune District covered by Vadu Rural Health Programme (VRHP), which hosts the Health and Demographic Surveillance System (HDSS) of KEM Hospital Research Centre Pune. The geographical region under study, rural western Maharashtra, holds similarities to numerous other rural areas in India and potentially other South Asian LMICs. These similarities include socio-economic factors, cultural practices, healthcare infrastructure and disease patterns. Therefore, the findings of this study are likely to have relevance and applicability beyond the specific area of investigation.
The patients with COPD invited to participate in this study were identified during the BOLD COPD prevalence study conducted in Vadu HDSS area in 2008–2010.15 They were identified according to the GOLD guideline criteria for COPD5 based on their responses to the validated study questionnaires, spirometry and pulmonologist assessment. We invited healthcare professionals (HCPs) who were providing public and/or private primary healthcare services in the rural settings to participate, excluding professionals who did not treat patients with COPD.
Patients with COPD were identified by Field Research Assistants from the list of patients with COPD from the COPD prevalence survey cohort who had agreed to be approached for future research. People over the age of 18 years with COPD were selected for participation using purposive sampling to provide a range of age, gender, smoking history and educational status. Fifteen HCPs practising in the study area were approached telephonically and as per their availability, nine consented to participate.
Interview topic guides
We developed two semi-structured interview schedules, one for patients with COPD and another for HCPs. The interviews explored the need for PR from the two different viewpoints; the perspectives and perceptions of patients with COPD about the need for PR and assessed the HCP’s knowledge, perception and actual practice regarding PR in the rural Pune District. Both schedules were informed by the European Respiratory Society PR guidelines.16 Table 1 lists the overarching domains included in the interviews; the full topic guides are in online supplemental files 1,2. After initial questions exploring viewpoints about COPD and role of PR, the participants were given a short explanation about PR and its proven benefits.3 The interview was then resumed, and the participants were asked to reflect on what they had heard and consider whether they saw a need (or not) for PR and the feasibility for provision in a rural setting.
Interviews were conducted by DS, a counselling psychologist and HK, a public health researcher, and were arranged face-to-face at the patient’s home or the HCP’s clinic, or telephonically to suit the participant’s convenience.
Data quality and monitoring
The semi-structured interview schedules, and interview transcripts were monitored and checked for quality, completeness and accuracy by DS, the senior experienced research team member.
Data handling and analysis
All interviews were digitally recorded and transcribed verbatim in the spoken language (Marathi). Transcripts were translated by the research team from Marathi to English for analysis, retaining the Marathi version so that the nuances of the discussion could be checked in the original language. We used thematic data analysis to analyse the data17 allowing patterns and themes to emerge from the data as well as important variations in responses. Initially, the transcripts were coded, and the codes were then used to build themes and domains aligned with the expected outcomes of acceptability, feasibility, barriers and facilitators for implementing PR. The analysis of the concept of need used Bradshaw’s classification of needs as a framework. This framework distinguishes four different types of needs: felt need, expressed need, normative need and comparative need18 (see table 2 for a description of these types of needs).
We interviewed 14 patients with COPD and 9 HCPs from public and private hospitals. See tables 3 and 4 for summaries of their demographic characteristics. One HCP with a qualification of MD Paediatrics was included in the interviews because, in the study area where there was a shortage of practitioners, he provided care to patients of all age.
The patients had a mean age of 62 years, were evenly split between genders and with a range of educational status. Only four had a history of smoking. All but one of the physicians were male and had between 3-year and 25-year professional experience and consulted with a mean of 32 patients with COPD a month.
Using Bradshaw’s framework, our study highlighted two main areas of discrepancies, that is, the gap between people’s felt needs and those they express at an assessment. In parallel with this, there was a gap between HCPs’ perception of normative and comparative needs and the reluctance of patients to accept these.
Felt and expressed needs of individuals with COPD
When we asked the patients what it was like to live with COPD, they told us that they suffered from cough and sputum production, and shortness of breath while bending down and working. They sometimes experienced wheezing or ‘whistling’ in their chest. When asked about the causes, the patients believed that their COPD symptoms were mainly due to seasonal changes, ‘tadka’, lifelong usage of chewing tobacco, chulha smoke, damp/rainy weather, smoking and occupational hazards.
Boredom and inability to participate in activities because of their breathlessness was a commonly ‘felt’ need, although typically they had adapted to the imposed limitations rather than expressing their need and actively seeking help. In general, they were not willing to seek help from any professionals, rather they preferred to accept care from family members.
I get bored simply sitting at home. I usually think to myself that if I feel so breathless then I shouldn’t go anywhere and stress myself. (P3, aged 50–59 years, ex-smoker and mason worker)
Feeling breathlessness and experiencing shortness of breath have started causing pain and problems with my hands and legs and I face difficulties because of that. I am unable to do anything, I just sit in one place. (P5, aged 50–59 years, female, non-smoker, farmer)
A key barrier which inhibited the expression of these felt needs was the limited understanding of COPD and the overall lack of awareness among the population. After they were provided with information about the potential benefit of PR services, the participants showed significant willingness to participate in the PR programme
Yes, I do need it. If doing this will make me feel better then I will definitely want to do it. (P3, aged 50–59 years, male, ex-smoker, mason worker)
Whenever you ask me to come I will definitely come. I will stay for as much time as you ask me to. (P8, aged 60–69 years, female, non-smoker, homemaker)
I will do the pulmonary rehabilitation; if my lungs start functioning better I will be able to do some work! (P9, aged 70–79 years, male, non-smoker, retired)
Alternative treatment strategies were not always acceptable as there was a stigma attached to using inhalers. There was also a misbelief that they were already active enough as work done in the fields was a type of exercise.
I don’t take any medications. I work on the farm so that in itself is a lot of exercise and physical activity. (P6, aged 50–59 years, female, non-smoker, homemaker)
Healthcare providers’ perception of normative and comparative needs and the care they provide
The professionals that were interviewed also reflected on the significant unmet ‘normative’ needs of people suffering from COPD. but were also aware of the inequities that meant these were not always met.
Most of the patients they saw were in the mild to moderate category of COPD (according to the GOLD classification) with common symptoms of cough, breathlessness, shortness of breath and wheezing. The most common risk factors that they identified were exposure to air pollutants, weather change, smoking and exposure to dust, although an Internal Medicine practitioner added that low birth weight, congenital disorders, genetic factors and poverty were additional risk factors for COPD.
I think pollution and older people who have a smoking history, some have allergies like allergic asthma, occupational dust (people who work in a flour mill or a person who works in an industry where there is dust production) and seasonal change like winters. (HCP, S3)
When asked about the treatments they prescribed to these patients, most cited oral medications, inhalers and nebulisation. In the absence of a PR service, a few professionals described how they recommended some of the main components of PR (eg, exercising and diet modification):
Most providers do not conduct pulmonary rehabilitation in the rural area. We recommend exercise, yoga, pranayam, education, inspiratory exercises, psychiatric opinion for anxiety and depression, and a high protein diet for nutrition. (HCP, S6)
One practitioner mentioned how he tailored the advice based on the patient’s condition to avoid any risks due to PR.
No exercises are recommended. For unstable patients I suggest psycho social support, smoking cessation, exercise training, chest physiotherapy. (HCP, S1)
When the professionals were asked about their arrangements for following up patients with COPD, they described that although this ‘should be conducted every 1–2 months’, it often did not happen.
If the patients come back to us post treatment, we definitely reassess them. Not all patients come back, they only come back when they suffer and their symptoms are aggravated. (HCP, S5)
A key theme was the lack of understanding (on the part of patients, public and professionals) of the benefits of PR, and the stigma attached to a diagnosis of COPD. Some of the professionals felt that educating patients about the benefits (reduced exacerbations, giving health and other economic benefits) would enhance acceptability.
Until and unless the patient realizes the benefits of PR he will not come to the centre for the various exercises and breathing exercises. If proper counselling is given, then they will definitely come. They will also follow up the given exercises at home as they usually listen to whatever we advise. (HCP, S1)
People think that once they are diagnosed with Asthma or COPD it is like they are tagged and they need to hide it. That fear and dilemma should be taken care of and they should be educated. (HCP, S9)
A practitioner with 25 years of experience stressed the need for general awareness of PR and emphasised the role of skilled professionals in leading this:
Conduct educational programs, mass community or society level training programs should be conducted. Doctors, nurses, teachers will play a huge role in this, basic level government servants like Sarpanch, Gramsevak Anganwadi, ASHA’s, consultants will have a major role, etc. (HCP, MBBS, S8)
If training is provided to general practitioners or consultants in the rural areas then it will definitely be beneficial and feasible for sure. (HCP, S4)
PR services from HCP and patient perspectives
When the professionals were asked about their management of COPD, they stated that they had no experience in advising PR to any of their patients.
Doctors should be trained first and then side by side the Nurses or other healthcare workers should be trained. There is a program through National Rural Health Mission (NRHM) where there is someone called Mr Wagh who is a counsellor who counsels people with Diabetes, hypertension, etc to quit smoking or quit tobacco products every week at the hospital. So, such people along with doctors and nurses should be trained. (HCP, S1)
I just feel that if physicians like me are trained properly then we can start advising these people that way. (HCP, S2)
Most of them felt that services such as PR should ideally be recommended only by chest physicians. This opinion was held by most of the HCPs that participated.
Chest physicians only recommend this, we don’t. (HCP, S3)
The lack of local facilities was highlighted as a problem by HCPs and patients. HCPs observed that referring symptomatic patients to a PR centre was ‘not possible’ as there were no such facilities available in the rural areas and patients were often reluctant to travel. Patients endorsed this, commenting that their doctor’s advice did not include the mention of PR.
In the acute situation, most practitioners would refer patients to the district hospital in the city of Pune (about 2 hours travel from their hospital or clinic) or other tertiary level hospitals due to the unavailability of necessary equipment and expertise in the rural areas.
The patient is not willing to go even after referring; the patient goes to a nearby hospital and gets saline or injections for immediate relief. (HCP, S1).
An MBBS practitioner with over 24 years of experience expanded on the issues related to the lack of transport facilities, dependency on family members for travelling and unavailability of PR in the rural areas.
The concept of Pulmonary Rehabilitation is very nice, but such a service isn’t available in our area. If we recommend them to even go to the city area for such a service, hardly 1–2% of them would give it a thought. If these services are available in the same premises as their hospital or someplace close by, then they might accept such a service. (HCP, S5)
Home-based PR was considered as an acceptable option by both HCPs and patients as that could overcome the challenge of transportation, and ease the commitment required for attending 16 sessions. Avoiding centre-based PR was a particular concern in the pandemic for reasons of infection. Control.
Home-based would be feasible for patients. (HCP, S1)
I prefer home based exercises. (P2, aged 50–59 years, male, ex-smoker, retired)
I am willing to undergo PR. If it is possible to do it at home, I will do it. (P4, aged 50–59 years, male, occasional smoker, service)
For patients, however, the practical challenge was poor transportation, and living with symptoms that limited their mobility, and the day and duration of the PR service.
I can come every day but coming and going will be a huge issue. My only tension is that I experience shortness of breath. (P9, aged 70–79 years, male, non-smoker, retired)
I will come only if transportation is provided. (P14, aged 50–59 years, female, non-smoker, homemaker)
HCPs observed that an additional factor was the socio-economic backgrounds of most of the population in the rural areas being low or very low and hence that would make the affordability of a Centre-based setup difficult. Need to design a service that was cost-effective was suggested.
Design the program’s module keeping in mind regarding their economic condition. (HCP, S1)
Cost factor is very important. (HCP, S3)
Responding to the needs: the new PR service
The findings from the needs assessment achieved the aim to inform the development of a widely accessible pulmonary rehabilitation (PR) service in order to improve the morbidity of COPD patients in a rural Indian setting within Pune district and led to the successful launch of a new PR service. The implementation of the PR service was guided by the insights gained from the needs assessment, ensuring that the specific needs of both patients and professionals were integrated. Table 5 provides a detailed overview of how these needs were considered and addressed in the design of the new PR service.
Summary of results
The study found that there was a clear need for PR services in the region as many of our participants described patients suffering from disabling symptoms and social isolation due to COPD and other respiratory illnesses who could benefit from the PR services.
Most of the practitioners had no experience in advising PR to their patients, believing it to be a service that was not available locally and was usually recommended by chest physicians and physiotherapists rather than the Medical Officers (MOs) or general practitioners (GPs), although some recommended exercises in the absence of accessible services to which they could refer. Most of the population from the rural area belonged to very low socioeconomic backgrounds and were unable to afford even the basic treatments needed for their COPD. Transport was the biggest challenge as the people suffering from COPD were typically older and dependent on a family member for transport. Home-based PR was considered as a feasible option by both HCPs and patients to overcame practical mobility challenges, particularly during the pandemic as it addressed infection control issues.
The findings of the study suggest a disconnect between the felt needs of patients with COPD, the normative and comparative needs perceived by the HCPs and the barriers that are preventing the effective provision of PR services. There was general agreement that there was a need to raise awareness of PR among patients, the community and professionals to enhance referral to, and uptake of a PR service. Follow-up of patients with COPD was also difficult because they do not give importance to their condition once they feel better after an exacerbation.
Overall, this study provides an insight into the gaps and discrepancies in management of COPD from the perspectives of patients with COPD and healthcare professions and highlighted the importance of developing a PR service that is adapted to the socio-economic background of the rural population ensuring that it is accessible and affordable for local patients.
Discussion in relation to published literature
Sociocultural barriers play a significant role in defining needs. Research conducted previously suggests that shame, blame and guilt fall within ‘stigma-related experiences’ of individuals suffering from chronic respiratory diseases.19 Delay in seeking medical help, increase in symptom severity, poor adherence and diagnosis concealment can be the result of such experiences.20 21 Using an inhaler is seen as a sign of weakness or addiction affecting compliance. Lack of support from the family has been described as reducing follow-up.22 Most participants expressed a lack of support from their families but were also reluctant to ask for help.23 In common with work from the UK, ‘normalising’ and ‘silencing’ their limitations because of ‘old age’ about which ‘nothing can be done’11 was a common finding among the rural Indian population. Since the study was being conducted during the COVID-19 pandemic, a preference for home-based PR as a strategy was suggested by the HCPs to overcome concerns about visiting the centre due to the fear of infection. Home-based PR is as effective as centre PR,24 and could potentially help overcome the barriers of travelling, time, distance and accessibility of the PR services, especially in LMICs.6
Providing professional training and education to the local practitioners is also important to encourage the local practitioners to advise components of PR along with developing an efficient referral system to facilitate access to a PR service. Affordability was a need pointed out by most caregivers as they suggested the cost of such a service will play a major significant role in determining the feasibility of the service.
Strengths and limitations of the study
The individuals with COPD recruited in the study were from the cohort recruited from the previously conducted BOLD study in the 22 villages of VRHP included people who had been detected by the survey as well as some who had received a clinical diagnosis. This study is the first to explore the perceptions of both patients with COPD and HCPs in a rural Indian setting on local provision of a PR service. The interviews were carried out by two researchers, DS and HK with different backgrounds helping to address reflexivity as regular communication meant that preconceived perspectives could be challenged. The use of Bradshaw’s framework provided a structured and systematic approach to understanding the gaps between the different needs and further strengthened the credibility and rigour of the findings from the study. Discussion with the multidisciplinary team enabled a balanced interpretation.
As this study was conducted in a single block of Maharashtra, the findings may not apply to other blocks within the state or more widely in India. Our study focused on rural settings as we wanted to inform the development of a local PR service, so our findings may not reflect the need in other demographic and social contexts. It is rare to find specialists in rural areas, and most of the HCPs included in the study were GPs and MOs; none of the interviewed practitioners were chest specialists. Due to the COVID-19 pandemic, most of the interviews with the professionals were conducted virtually. The interviews with the patients were conducted in person due to limited availability of telephonic communication in this group of patients.
This qualitative study among patients with COPD and the local GPs and MOs of the area highlighted the need for PR centres in the rural settings and considered the challenges of stigma related to respiratory diseases, lack of awareness of the benefits of PR and a tendency to treat exacerbations rather than address long-term strategies. There are barriers at both healthcare and patient levels that we addressed in developing a new PR local service for people with chronic respiratory disease in rural Maharashtra
Data availability statement
Data are available on reasonable request.
Patient consent for publication
This qualitative study was conducted between June and October 2020, with ethics approval from the KEM Hospital Research Centre ethics committee (reference number: KEMHRC/RVM/EC/1834-A); and permissions from health officers at the district and block level, and from the private general practitioners’ association. The study was sponsored by the University of Edinburgh (ACCORD: reference number: AC18111). Written informed consent was obtained from each participant, confirmed verbally prior to the interviews. The study was implemented following National Ethical Guidelines for Biomedical and Health Research involving Human Participants issued by the Indian Council of Medical Research in 2017 and the recent National Guidelines for Ethics Committees Reviewing Biomedical & Health Research During COVID-19 Pandemic issued in 2020.
We gratefully acknowledge all the study participants and general practitioners for their participation in the study. We also acknowledge members of the association of medical doctors from Shirur block for their constant support for this study. Additionally, we extend our heartfelt appreciation to the field research assistants and other dedicated members of the research team who worked diligently throughout the study, contributing their time, effort and expertise to the successful completion. We are also grateful to the RESPIRE collaborators for their helpful comments on the proposal and draft publication.
Contributors SJ and HP led the development of the study. DNS wrote the first draft of the manuscript, which was critically reviewed and refined by DA, HK, SJ, HP and SR. DNS and DA performed the statistical analysis. RESPIRE UMC members provided advice and contributed to discussions. All authors approved the final version. All authors accept full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish.
Funding This research was funded by the UK National Institute for Health Research (NIHR) (Global Health Research Unit on Respiratory Health (RESPIRE); 16/136/109) using UK aid from the UK Government to support global health research. The RESPIRE collaboration comprises the UK Grant holders, Partners and research teams as listed on the RESPIRE website (www.ed.ac.uk/usher/respire), including Siân Williams.
Disclaimer The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Government.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the 'Materials and methods' section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
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