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Sponsor: Aveiro University
Conditions: Pulmonary Disease, Chronic Obstructive, Lung Diseases, Interstitial, Asthma, Lung Neoplasms, Bronchiectasis
Interventions: Carer inclusive pulmonary rehabilitation, Pulmonary rehabilitation
Countries: Portugal
Chronic respiratory diseases are leading causes of death and disability worldwide, imposing an enormous burden on individuals, families, and societies. Dependence on others begins early in the disease course. Over 70% of people with a chronic respiratory disease rely on informal care for daily assistance. Informal carers face multiple demands that may affect their health and ability to provide care. However, support interventions remain largely absent. Informal carers have identified pulmonary rehabilitation as an opportunity to also support them. Pulmonary rehabilitation is a cornerstone non-pharmacological intervention comprising exercise training, education, psychosocial support, and behaviour change, and is known to improve symptoms, functional capacity, quality of life, and survival. Although including informal carers in pulmonary rehabilitation has shown promising benefits for family adjustment, pulmonary rehabilitation remains patient-centred, with no dedicated support for carers' specific needs. This study will therefore redesign pulmonary rehabilitation to act as a dual-support intervention for both people with chronic respiratory disease and their informal carers. The study aims to assess the effects of carer inclusive pulmonary rehabilitation on preparedness for caregiving. A total of 120 patient-informal carer dyads will be randomly assigned to either carer inclusive pulmonary rehabilitation or standard pulmonary rehabilitation. In both groups, patients will undergo pulmonary rehabilitation. In the carer inclusive pulmonary rehabilitation group, informal carers will also participate in the education and psychosocial support sessions, which will be specifically designed to also address their needs. In the standard pulmonary rehabilitation group, informal carers will not participate in the pulmonary rehabilitation programme.
Sex: ALL
Age: 18 Years to —
Healthy volunteers: No
Study type: INTERVENTIONAL
Participants will be recruited as patient-informal carer dyads. Informal carers will be identified by a person with a chronic respiratory disease referred for pulmonary rehabilitation. Inclusion Criteria Informal carers: * Aged 18 years or older. * Providing unpaid informational, physical, practical, emotional, social, or financial support to a person with a chronic respiratory disease. * Identified by the patient as the primary informal carer Patients: * Aged 18 years or older * Diagnosis of chronic obstructive pulmonary disease, interstitial lung disease, bronchiectasis, asthma, or lung cancer. * Clinically stable in the previous month (no changes in medication or occurrence of exacerbations) * Referred for pulmonary rehabilitation. * Report having an informal carer Exclusion Criteria Informal carers: * Unable to provide informed consent * Signs of cognitive impairment Patients: * Unable to provide informed consent * Signs of cognitive impairment * Participated in a pulmonary rehabilitation programme within the last 6 months * Neoplastic or immunological disease, or an unstable or significant cardiac, musculoskeletal, neuromuscular, or psychiatric condition that limits the ability to participate in the pulmonary rehabilitation programme.
- Aveiro, Aveiro District, Portugal
- Santa Maria da Feira, Aveiro District, Portugal
- Figueira da Foz Municipality, Coimbra District, Portugal
- Lisbon, Lisbon District, Portugal
- Matosinhos Municipality, Porto District, Portugal
- Vila Nova de Gaia, Porto District, Portugal
- Aveiro, Portugal