Toward Self-Management in ILD; Needs and service gaps
Research type
Research Study
Full title
Toward a model of Self-Management: Identifying gaps and needs in services for patients with Interstitial Lung Disease (ILD)
IRAS ID
203331
Contact name
Dimitra Nikoletou
Contact email
Sponsor organisation
Kingston University and St George's University of London
Duration of Study in the UK
0 years, 3 months, 16 days
Research summary
Research 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 who participated in an NIHR funded RfPB study (PB-PG-1112-29067) expressed concern about the lack of information on possible rehabilitation programmes or other services that could potentially improve self-management of the disease and lack of co-ordination between chest physicians and other professionals such as rheumatologists on available services for rehabilitation and management of the disease. However, the context in which these concerns were voiced (as part of interviews about the pulmonary rehabilitation programme) was not specific enough to explore further the needs of patients with ILD and possible gaps in service provision. In addition, the study did not include their carers or clinicians such as General Practitioners, Chest physicians or Rheumatologists who often have different perceptions about availability and access to services.
In this study, we 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. We will conduct three focus groups for patients and carers and six one-to-one interviews with clinicians to explore perceptions about service needs and gaps in South London.
This study will provide us with valuable information to develop the building blocks of a self-management resource and will enable us to make it specific to the different types of ILD.Summary of Results
Self-management can empower people living with long term conditions to transform their relationship with caregivers and clinicians and become active partners in decision-making. There is good evidence that self-management can improve health outcomes and the patient experience but it should be tailored to the condition. Interstitial lung disease is a debilitating, progressive chronic respiratory condition that affects quality of life. There is currently limited information about the optimal self-management strategies or the role of peer support groups in this condition.
The aim of this study was to explore expectations and needs from support services for patients with interstitial lung disease, explore experiences of being part of a peer-support group and suggestions for future improvements.
18 people living or caring for a person with this condition participated in a group discussion (focus group) that was transcribed verbatim and analysed to identify relevant themes and actionable insights.
Three main themes were identified: a) the long, slow and unsupported diagnostic process in interstitial lung disease, b) the importance of committed and experienced health care professionals in peer support groups and c) the need for better co-ordination of support services.
Participants highlighted that due to the long and often slow process to an interstitial lung disease diagnosis, patients would benefit from early referral to a peer-support group. The importance of experienced and committed health care professionals that input into the group, was identified as crucial for patients and carers. There was a need for professionals to engage with the support group and maintain regular exchange of up-to-date information. Finally, there was a request for better co-ordination of all patient/peer-support groups across London to provide a more comprehensive coverage for patients and carers.
This study provides us with valuable information to develop the building blocks of a self-management resource, tailored for people living or caring for people with ILD.REC name
Wales REC 6
REC reference
16/WA/0277
Date of REC Opinion
22 Sep 2016
REC opinion
Further Information Favourable Opinion