Toward Self-management in ILD
- Conditions
- Chronic Hypersensitivity PneumonitisInterstitial Lung DiseaseConnective Tissue Related ILDIdiopathic Pulmonary FibrosisFibrotic Lung Disease
- Registration Number
- NCT03300583
- Lead Sponsor
- Kingston University
- Brief Summary
Treating and caring for people with long term conditions accounts for a substantial proportion of health care resources. Self-management is advocated as a mechanism that can empower service users with long term conditions to choose healthier options and also transform the relationship between service user and caregivers from one in which the former is a passive recipient of care to one in which they are an active partner in decision-making.
Interstitial lung disease (ILD) is one such long term condition. Patients with ILD often express concern about the lack of information on possible rehabilitation programmes and other services that could potentially improve self-management of the disease. In addition, there is a general perception about a lack of co-ordination between health care professionals especially in relation to referral to services for comprehensive management of the disease. Therefore, the needs of patients with ILD and their carers, and possible gaps in service provision need to be explored further.
In this study, the investigators propose to explore the needs of ILD patients from all types of ILD and all stages of severity and to also involve carers and clinicians. The investigators will conduct three focus groups for patients and carers and six one-to-one interviews with clinicians to explore perceptions about service gaps and needs in two ILD centres in South and North London, UK.
This study will provide valuable information to develop the building blocks of a self-management resource and will enable the investigators to make it specific to the different types of ILD.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 16
- Diagnosed with Interstitial Lung disease (all types apart from sarcoidosis)
- Age >18 years
- At least one consultation with a health care professional
- Diagnosed with sarcoidosis
- Unable to communicate in English
- Severity of condition and commodities preventing participation
CAREGIVERS
Inclusion Criteria:
- Currently caring for a participant with ILD
Exclusion Criteria:
- Unable to communicate in English
CLINICIANS:
Inclusion Criteria:
- Involved in the clinical management and treatment of ILD patients
Exclusion Criteria:
- Health care professionals not directly involved in management or treatment of ILD patients
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Perceptions of service needs and gaps in current services among ILD patients, carers and clinicians 1-2 hours Exploratory method, conducted using semi-structured 1:1 interviews and focus groups
- Secondary Outcome Measures
Name Time Method Differences in perceptions between participating ILD patients, carers and clinicians 1-2 hours Exploratory method, conducted using semi-structured interviews and focus groups
Recommended solutions for better self-management 1-2 hours Exploratory method using semi-structured interviews and focus groups
Presentation and explanation of diagnosis and its implications to ILD patients and carers 1-2 hours Exploratory method using semi-structured interviews and focus groups
Presentation and explanation of information about the management of the disease to ILD patients and carers 1-2 hours Exploratory method using semi-structured interviews and focus groups
Trial Locations
- Locations (2)
St George's Hospital London
🇬🇧London, United Kingdom
University College Hospital
🇬🇧London, United Kingdom
St George's Hospital London🇬🇧London, United Kingdom