Chronic Hypersensitivity Pneumonitis, Connective Tissue Related ILD, Fibrotic Lung Disease, Idiopathic Pulmonary Fibrosis, Interstitial Lung Disease
Conditions
Keywords
Interstitial lung disease, Self-Management, Service provision
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.
Interventions
BEHAVIORALFocus groups
Focus group discussion led by the PI and facilitated by another researcher.
BEHAVIORALSemi-structured interviews
1:1 semi-structured interviews led by the PI
Sponsors
St. George's Hospital, London
University College London Hospitals
Kingston University
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
PATIENTS Inclusion Criteria: * Diagnosed with Interstitial Lung disease (all types apart from sarcoidosis) * Age \>18 years * At least one consultation with a health care professional
Exclusion criteria
* 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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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
| Measure | Time frame | Description |
|---|---|---|
| Differences in perceptions between participating ILD patients, carers and clinicians | 1-2 hours | Exploratory method, conducted 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 |
| Recommended solutions for better self-management | 1-2 hours | Exploratory method using semi-structured interviews and focus groups |
Countries
United Kingdom
Outcome results
None listed