Table 1 Key results and Initial Context-Mechanism-Outcome configurations, presented as ‘If, Then’ statements.
Key findings | If, then statement | |
|---|---|---|
1. Identifying the breathless population | • Forty four percent of adults in India report breathlessness limiting exertion • Breathlessness may have multiple (un)diagnosed causes. • Non-medical factors (e.g. poverty, malnutrition, post-tb) are important drivers of breathlessness prevalence | If breathlessness self-management approaches are to be encouraged safely, then ‘red flags’ must also be taught to promote seeking additional clinical support when relevant. |
2. Health-seeking – search for a cause and a cure | • People search for cure for underlying cause and pay costly fees, often to multiple providers • Breathlessness often perceived as ‘normal,’ as part of illness or ageing • Health decisions commonly made at family-level | Symptom management must be delivered alongside reversal of modifiable causes and treatment of medical cause. If people are to engage with symptom management, then they must not feel that addressing symptoms is at the expense of modifying therapies and reversal of modifiable causes. |
3. Health workforce | • Most clinicians unsure how to treat the symptom of breathlessness (therapeutic helplessness) • Medicines are prescribed for undiagnosed cause(s) • Poor coordination of care, history-taking | Witnessing breathlessness is distressing to health workers. If health workers are trained to teach breathlessness self-management, then they will apply their training because it also addresses their own unmet need. |
4. Fatalistic and passive avoidance | • People with breathlessness ‘do less’ over time and lose fitness • Become accustomed to breathlessness as ‘inevitable and don’t seek help • Breathlessness stigmatised in communities | Understanding that breathlessness is not inevitable is key to changing behaviours. If patients/families can be taught the relationship between breathing, thinking and functioning, then they are more likely to engage with self-efficacy approaches. |
5. Active avoidance | • People with breathlessness avoid activities because breathlessness is frightening | Addressing fear is key to promoting lifestyle changes. If self-management approaches can help people feel safe, then they are more likely to understand breathlessness as a healthy bodily response and not something to be avoided. |
6. Self-management | • 41 interventional studies identified by systematic searches show neutral or positive effects on breathlessness outcomes • Non-pharmacological interventions more acceptable in community settings • Experiencing benefits is key to improving outcomes | Any breathlessness-targeted intervention may be helpful, because acknowledgement – or education - of breathlessness as a clinical problem is itself helpful to people living with breathlessness. If people find self-management approaches helpful then they will continue to use them. |
7. Health beliefs | • People trust modern medicine but also trust their own health beliefs • Ayurvedic understandings of health underpin beliefs (e.g. food is an important aspect of health) • Framing of breathlessness self-management as modern medicine is key to engaging families and improving patient outcomes | . If self-management education is to gain credibility, then it must be kept simple and address patient/family concerns at the point of delivery. |
8. Care in the community – place influences expectations | • Non-pharmacological interventions are consistent with pexpectations when delivered in the community (people don’t expect medicine) • Community health workers have a high workload, but are ideally placed to receive and administer breathlessness education | Delivery of non-pharmacological healthcare in the community is consistent with expectations. If breathlessness self-management is brought into the community, then communities will support implementation because breathlessness will be normalised as a modifiable problem and address unmet needs in communities. |
