Palliative & supportive care · 2026
Interventions for unpaid carers of people living with breathlessness due to chronic respiratory diseases: Scoping review.
СтатьяScoping ReviewНазвание и аннотация: Перевод в очереди
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Rochester Eleanor, Hector-Jack Nikel-Shaniece, Robert Glenn, Reilly Charles, Maddocks Matthew, Brighton Lisa, Liu Wei, Ibrahimi Assma, Higginson Irene
Аннотация
OBJECTIVES: Carers of people living with breathlessness face common challenges due to the chronic, distressing and unpredictable nature of the symptom. These include unmet information and support needs resulting in worsened health and psychosocial outcomes. This review aimed to (1) identify the relative volume of studies on supportive interventions for carers of people living with breathlessness due to different respiratory diseases, (2) characterize the nature of the interventions, and (3) explore their reported effectiveness on outcomes identified by carers as being important.
METHODS: Medline and CINAHL were searched for studies reporting interventions targeting unpaid adult carers of people with breathlessness, lung cancer, chronic obstructive pulmonary disease (COPD), Interstitial Lung Diseases (ILD) published 2000-2025. Intervention characteristics and reported outcomes were extracted and compared across diagnoses and intervention categories. Our findings were shaped by consultation with unpaid carers in a series of patient and public involvement workshops.
RESULTS: From 72 included interventions, three approaches were identified: Education, therapeutic support, and interventions for patient management. Interventions for lung cancer carers most frequently offered therapeutic support to the carer, while those for COPD carers most frequently focused on managing the patient. COPD and ILD carers have been underserved by research. We found few therapeutic support interventions for COPD carers. Reporting of carer demographics was poor, including among RCTs.
SIGNIFICANCE OF RESULTS: There was a dominance of research focusing on carers of people with lung cancer (56% of participants). In PPI consultations, carers identified stigma and poor communication with health providers as factors contributing to the disparity between lung cancer and other respiratory diseases. More research is needed to compare the efficacy of different intervention strategies to improve outcomes that matter most to carers. To improve equity, researchers must consistently report carer demographics and prioritize developing interventions for carers underserved by research.
METHODS: Medline and CINAHL were searched for studies reporting interventions targeting unpaid adult carers of people with breathlessness, lung cancer, chronic obstructive pulmonary disease (COPD), Interstitial Lung Diseases (ILD) published 2000-2025. Intervention characteristics and reported outcomes were extracted and compared across diagnoses and intervention categories. Our findings were shaped by consultation with unpaid carers in a series of patient and public involvement workshops.
RESULTS: From 72 included interventions, three approaches were identified: Education, therapeutic support, and interventions for patient management. Interventions for lung cancer carers most frequently offered therapeutic support to the carer, while those for COPD carers most frequently focused on managing the patient. COPD and ILD carers have been underserved by research. We found few therapeutic support interventions for COPD carers. Reporting of carer demographics was poor, including among RCTs.
SIGNIFICANCE OF RESULTS: There was a dominance of research focusing on carers of people with lung cancer (56% of participants). In PPI consultations, carers identified stigma and poor communication with health providers as factors contributing to the disparity between lung cancer and other respiratory diseases. More research is needed to compare the efficacy of different intervention strategies to improve outcomes that matter most to carers. To improve equity, researchers must consistently report carer demographics and prioritize developing interventions for carers underserved by research.