Integrating Palliative Care Education in Pulmonary Rehabilitation

Summary

Living with chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD) imposes enormous daily challenges, especially at advanced stages, not just to patients but also to informal caregivers. Their needs are not fully addressed by disease-modifying treatments. A key strategy to improve their well-being is the early integration of palliative care into routine management of COPD and ILD. Pulmonary rehabilitation (PR), one of the most well-established and cost-effective interventions in chronic respiratory diseases may be a suitable venue for this approach. The main goal of this randomised controlled study is to explore the effects of palliative care education as part of PR in people with COPD or ILD and informal caregivers. The primary question to be addressed is: "Does integrating education about palliative care in PR improve knowledge on this subject?". The investigators will compare PR with palliative care education (experimental) with traditional PR (control) in people with COPD or ILD and informal caregivers. The intervention will include an education session about palliative care, a "Peer-to-peer session", a "Get-apart session" and online sessions. A mixed-methods approach will be used to evaluate the outcomes. This study will provide an evidence-based insight into personalised PR with palliative care education for people with COPD or ILD and informal caregivers.

Eligibility

People with COPD or ILD

Inclusion Criteria:

* diagnosis of COPD according to the Global Initiative for Chronic Obstructive Lung Disease (GOLD) criteria or multidisciplinary diagnosis of ILD
* clinically stable in the previous month (i.e., without acute exacerbation)

Exclusion Criteria:

* presense of a musculoskeletal, neurological or psychiatric condition which may limit their participation in PR
* participation in any PR program in the last 6 months
* specialist palliative care in the last 12 months
* inability to understand Portuguese

Informal caregivers

Inclusion Criteria:

* adults identified by the participating people with COPD or ILD as informal caregivers; for this purpose, it will be explained to people with COPD or ILD that an informal caregiver is any relative, partner, friend, neighbor, or significant other with personal relationship with them, and who provides a broad range of unpaid assistance, namely with activities of daily living (e.g., toileting, feeding and bathing) and instrumental activities of daily living (e.g., shopping, meal preparation and managing finances)

Exclusion Criteria:

* presense of a neurological or psychiatric condition which may limit their participation
* inability to understand Portuguese

Conditions3

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