“SHWAAS” – a Breathlessness Intervention Project to help People in India
with Asbestosis
“SHWAAS” is a Sanskrit word meaning "breathe." This word is used in Hindi, Urdu and Marathi, 3 major Indian languages. In traditional literature it also indicates “struggle to live” or “effort for life.” Asbestosis is a progressive disease of the lungs due to exposure to asbestos; it causes increasing breathlessness and eventually death from respiratory failure. Asbestos exposure usually occurs in occupational settings. This project aims to reduce the suffering due to breathlessness amongst Indian former asbestos industry workers suffering from asbestosis.
Asbestos industries in India employed thousands of workers who were not informed of the health hazards of exposure to asbestos, and for whom little or no protection was provided. As a result, many developed asbestosis 10+ years after occupational exposure. Asbestosis causes progressive lung scarring that leads to increasing breathlessness and, eventually, death from respiratory failure. There is no curative or disease-modifying treatment for this condition. In Mumbai, OHSC has identified >450 former asbestos factory workers diagnosed with asbestosis. Uniquely in India, they have all received financial compensation from a UK fund set up by their former employer. A similar group of workers from an asbestos cement pipe factory and a thermal power plant in Ahmedabad has been identified. Socio-demographic factors, including caste, class, and illiteracy, preclude these people from access to healthcare, and, specifically, from palliative/supportive care or rehabilitation.
The development of palliative medicine in the past 60 years has led to evidence-based interventions for the control of symptoms, including breathlessness. Most of the research applies to the developed world, such as the Breathlessness Intervention Service (Booth et al, 2011). However the community-based palliative care programme in Kerala (Ajithakumari, Kumar, Rajagopal, 1997) is a well-regarded service that uses trained healthcare volunteers to deliver symptom control measures, amongst other interventions, in an Indian setting.
In public health terms there is increasing acknowledgement that, in order to provide palliation that even the poor and debilitated in resource poor settings can access, services must be provided within the affected communities (Sallnow, Kumar, Kellehear, 2012). Kumar (2007) states that 'Social experiments in palliative care in recent years have demonstrated that it is possible to improve the quality of life of incurably and terminally ill people through empowerment of local communities'.
The SHWAAS project is a community-based healthcare programme, developed by Dr Helen Clayson and Dr Abhijeet Jadhav, that aims to offer evidence-based low-tech, low-cost techniques and strategies to people affected by advanced asbestosis with the intention of relieving the suffering caused by breathlessness. The types of intervention will include education about breathlessness, pacing of activities, relaxation techniques, visualization, use of a hand-held fan and possibly other activities if seen as appropriate by the affected communities such as yoga or self- hypnosis. The programme will be conducted by trained volunteer healthcare workers drawn from the two communities in Mumbai and Ahmedabad. The project has been developed as a research study to ensure that the intervention is rigorously evaluated and it includes pre- and post-intervention assessments.
Prior to the intervention phase a small qualitative interview study is being conducted to explore the experience of breathlessness in advanced asbestosis – the participants will be former asbestos industry workers in Mumbai and Ahmedabad, The findings, due to be reported in December 2013, will ensure that the intervention is grounded in local context and will inform the intervention. In addition, before implementing the programme there will be consultation with local community leaders and other key people in December 2013, in order to ensure engagement and contribution from people in the affected communities.
A grant from the International Ban Asbestos Secretariat (IBAS) provided pump-priming funds and has allowed the project to commence with the interview phase in September 2013. Subsequently a donation from an anonymous benefactor has provided the balance of the funds required to conduct the whole programme. If the project succeeds in demonstrating reduction in the suffering due to breathlessness from advanced asbestosis then it could be rolled out to larger populations of people with asbestosis, particularly in resource-poor areas. It might also be applicable to people with similar conditions e.g. silicosis.
September 17, 2013
