What should pulmonary rehabilitation look like for people living with post-tuberculosis lung disease in the Bishkek and Chui region of the Kyrgyz Republic? A qualitative exploration

Abstract

ObjectiveAfter experiencing tuberculosis (TB), many people develop post-tuberculosis lung disease (PTBLD). Pulmonary rehabilitation (PR) centrally comprising of education and exercise is recommended internationally for people living with chronic respiratory diseases. However, no such service exists in Kyrgyzstan. This study investigated the opinions of healthcare professionals who would be expected to be potential future referrers to PR and adults living with PTBLD about what a PR programme could look like in Kyrgyzstan.DesignA qualitative study using interviews and focus groups. Grounded theory and thematic analysis were used for data collection and analysis.Participants63 participants; 15 referrers (12 male, 3 female; 12 pulmonolgists, 3 TB specialists) and 48 adults (26 male, 22 female) living with PTBLD.SettingParticipants were recruited from hospital settings in Bishkek and Chuy Region, Kygryzstan.MethodsFifteen semistructured interviews were conducted with referrers and nine focus group discussions were conducted with adults living with PTBLD.ResultsFive key themes were developed: (1) living with PTBLD; (2) attitude to PR, which emphasised the perceived importance and potential benefits of implemention; (3) barriers/facilitators to PR, which included time and cost, and the importance of appropriate communication in enabling participation; (4) interventional components of PR, which described culturally and demographically appropriate physical activities including rhythmic movements, dance and volleyball; and (5) psychosocial support, which demonstrated the importance of psychological support for patients coping with the effects of stigma.ConclusionsPotential referrers and adults living with PTBLD expressed their support for the implementation of PR. The culture-specific and population-specific issues highlighted in this work demonstrate the need to address stigma and provide certain types of exercise training/education modules for this specific clinical population. In other respects the currently known attitudes/barriers to PR, identified in Western research, appear to apply. The principles of culturally adapting PR may be helpful for those looking to establish similar clinical services in other low-income and middle-income countries and in Central Asia in particular.Trial registration numberISRCTN11122503.

British Thoracic Society Clinical Statement on pulmonary rehabilitation

“…Examples include rhythmic movements, singing and dance, volleyball and yoga. [151][152][153] Currently, little data exist to support whether such adaptations or adjuncts can enhance PR delivery either through improvement in core outcomes, or better completion rates.…”

COPD: Providing the right treatment for the right patient at the right time

“…It may be an important scientific development to consider the appropriate cultural adaptation of pulmonary rehabilitation in these settings [203,204]. Early work has been described in Kyrgyzstan for example where the fundamental principles of exercise training have been intertwined with singing and ball games after detail qualitative work to understand the needs of the post TB lung disease population [205].…”

Social dimensions of chronic respiratory disease: stigma, isolation, and loneliness

“…Consequently, they are ostracized by family, friends, and their wider community, contributing to social isolation [23]. Similarly, people with posttuberculosis lung disease have described being outcast from their families and having difficulties finding employment because of ongoing public fears of infection, contributing to becoming withdrawn and feeling depressed [24 ▪ ]. Similar experiences have been reported by people with chronic respiratory disease in relation to coronavirus disease 2019 (COVID-19), such as experiencing abuse in reaction to cough [25].…”

“…people living with chronic respiratory disease and those supporting them) and services are needed while societal stigma continues. People with asthma have described how support groups can be important in helping reduce feelings of shame, and supporting acceptance of their condition [26], while people with posttuberculosis lung disease have suggested that services like pulmonary rehabilitation should include psychological support to help address these challenges [24 ▪ ]. Adjusting language used to describe conditions may be helpful: participants with asthma in a recent intervention development study felt a new approach using nonmedical language, re-framing asthma as involving a healthy mechanism being triggered too easily (rather than a deficiency or weakness), could reduce stigma and self-blame, potentially increasing motivation to adhere to treatments [33 ▪ ].…”