Research question:
How can patients with an indwelling pleural catheter (IPC) and their family/unpaid carers be supported to self-manage?
Background:
Pleural effusion is the accumulation of fluid in the space between the lung and chest wall. It is a common complication of malignancy and affects approximately 200-250,000 people annually in the UK. People with such an effusion experience disabling breathlessness; this is treated by draining the fluid using IPCs (semi-permanent chest drains). These are usually managed at home by community nurses, but this can be done by the patient, family member or carer. Supported self-management is part of the NHS long term plan and British Thoracic Society guidelines state that patients should be supported to self-manage their IPC to promote independence. However, there is no evidence to support these recommendations, nor guidance on how self-management should be facilitated. There is thus an evidence gap at the heart of current recommendations.
Objectives:
O1. Identify support needs of patients with IPCs and their family/unpaid carers and how these impact on the acceptability and feasibility of self-management.
O2. Identify barriers and motivators to IPC self-management among patients and family/unpaid carers.
O3. Understand healthcare professional (HCP) attitudes toward, and practices related to, IPC self-management.
O4. Co-design and develop an evidence-based intervention to facilitate IPC self-management.
Methods:
An applied qualitative study and co-design project comprising three stages mapped to the four objectives.
S1: semi-structured interviews with patients with an IPC and their family/unpaid carers regarding self-management and support needs.
S2: focus groups and interviews with community nurses and IPC service staff regarding self-management.
S3: co-design and development of a self-management intervention.
Interviews will be audio- or audiovisual-recorded (with permission), transcribed, and analysed using thematic analysis. Codes will be assigned to text to categorise meanings. Given the lack of prior research, the coding schema will be developed inductively from early transcripts (with reference to literature from other fields), refined and applied to subsequent transcripts. Codes will be categorised, themes identified, and the results developed into a narrative. The COM-B system will be the model of reference for the development of the self-management intervention. This is comprised of a behaviour change wheel linked to intervention functions and policy categories.
Inclusion criteria Stage 1 - patients and family/unpaid carers
* Adult (\>18 years) who has (or has had) an IPC OR
* Adult family member or unpaid carer of a patient who has (or has had) an IPC
* Patients may currently be self-managing or receiving CN care. Stage 2 - healthcare professionals
* Community nurse: experience of caring for a patient with an IPC within the last 12 months and signed-off as competent in IPC management
* IPC-insertion site staff: any HCP involved in discussion with patients about post-insertion IPC care Stage 3 - co-design groups
* as above
Exclusion criteria Stage 1 - patients
* Patient with a life expectancy of less than 6 weeks
* Patient or family/unpaid carer who lacks capacity to offer informed consent (as judged by a suitably qualified HCP in accordance with Good Clinical Practice guidelines) Stage 2 - Health care professionals
* None Stage 3 - co-design groups
* As above
Anticipated Impact and Dissemination
The principal output will be a prototype self-management intervention for patients with an IPC and their family/unpaid carers that will:
* Empower patients, increase perceived symptom control, and reduce time spent 'waiting in' for nursing visits;
* Relieve pressure on community nursing services and reduce healthcare costs;
* Support the NHS long term plan by enabling supported self-management;
* Facilitate more frequent drainage which may prevent re-accumulation of pleural fluid.
