Family-centred Pulmonary Rehabilitation to Empower Carers

Chronic respiratory disease is an umbrella term for conditions affecting the lungs andairways, including chronic obstructive pulmonary disease, interstitial lung diseases,asthma, and lung cancer, which are leading causes of mortality and impose a substantialsocietal burden worldwide.The natural course of a chronic respiratory disease is progressive, with dynamic andunexpected declines, shifting among acute, stable and serious phases. Dependence onothers begins early, and more than 70% of people with chronic respiratory disease rely oninformal care. Informal carers, i.e., relatives, partners and friends in unpaid roles,have a wide range of responsibilities including gathering disease and treatmentinformation; managing medication, appointments, symptoms and exacerbations; supportingtreatment adherence and healthy lifestyles; handling household tasks; overseeingequipment, finances and decisions. The support provided by informal carers has been shownto improve health outcomes, improve treatment adherence, and promote healthier lifestylesin people with chronic respiratory diseases, easing pressure on healthcare systems.Despite many positive caregiving experiences, informal carers face significant challengesdue to their extensive responsibilities, and support interventions remain scarce.Informal carers have identified pulmonary rehabilitation as an opportunity to alsosupport them. Pulmonary rehabilitation is a cornerstone non‐pharmacological interventioncomprising exercise training, education, psychosocial support, and behaviour change, andis known to improve symptoms, functional capacity, quality of life, and survival.Involving informal carers in the education and psychosocial support sessions has beenshown to improve family coping and adjustment. However, these sessions primarily focus onpatient‐related topics, such as information about the disease, treatments, healthylifestyles, symptom management, and emotional support. Although these topics are alsorelevant to informal carers, they are not tailored to their specific needs. Furthermore,it is equally important to address topics that focus on carers' own needs to safeguardtheir health and strengthen their ability to provide care.This study will therefore redesign pulmonary rehabilitation to act as a dual‐supportmechanism for both people with a chronic respiratory disease and their carers. Theprimary objective of the study is to assess the effects of carer inclusive pulmonaryrehabilitation on preparedness for caregiving. Secondary aims are to explore the effectsof carer inclusive pulmonary rehabilitation on informal carers' burden, fatigue, symptomsof anxiety and depression, health‐related quality of life, disease knowledge, healthliteracy and self‐efficacy; and on people with chronic respiratory disease's functionalcapacity, muscle strength, impact of the disease, fatigue, symptoms of anxiety anddepression, health‐related quality of life, disease knowledge, health literacy andself‐efficacy.A total of 120 patient‐informal carer dyads will be randomly assigned (1:1) to either a12‐week carer inclusive pulmonary rehabilitation programme or a 12‐week standardpulmonary rehabilitation programme (60 dyads per group). In both groups, patients willundergo 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 standardpulmonary rehabilitation group, informal carers will not participate in the pulmonaryrehabilitation programme.