Research question "What are the experiences, and support needs of young adults living
with severe and uncontrolled asthma?"
Aim To develop a rich in-depth understanding of the lived experiences, challenges, and
perceived support needs of being a young adult with severe and or uncontrolled asthma.
Objectives
Examine in -depth the day-to-day experiences of living with severe asthma through
undertaking 1-1 in-depth interviews using photo elicitation techniques.
Identify participant support needs through undertaking focus groups
Combine results from 1-1 and focus group interviews, to help inform and develop
future interventions/research.
To develop a theory of change with patients and stakeholders.
Study design A qualitative design using photo elicitation driven semi-structured
one-to-one interviews (work package 1) followed by focus group interviews, (work package
2) concluding with a Theory of Change (TOC) workshop.
Data collection Work package 1: In-depth interviews - Post consent participants will be
asked to select/take and bring between 3-5 pictures or self-taken photographs to the 1-1
interview to help them describe their experiences of living with asthma to the interview.
The interviews will be conducted using a pre-designed semi-structured interview schedule
and the participant's selected images to guide the interview. Interviews can be either
face-to-face in person or online via MS subject to participant choice. The interviews
will be audio recorded and uploaded post interview.
Demographic details (age, gender, ethnicity, and educational attainment) and medical
history will be obtained from within the medical records, by the PI including Asthma
Phenotype, Medication use, Lung function/FeNO and recent ACQ/AQLQ questionnaire results
and completed onto a Case report form.
Work package 2: Focus groups - There will be two separate focus groups of between 4-8
participants. They will be face-to-face with the focus groups being led by the PI and
supported by a PPIE engagement officer. The focus groups will be audio recorded on an
encrypted dictaphone for future transcription. The focus groups will start with a summary
of the results derived from the1-1 interviews and a synopsis of previous interventions to
date in other research. the investigators will ask participants to consider their own
support needs and to provide suggestions for future care interventions within the focus
groups. Participant medical history and demographic details (age gender, ethnicity and
educational attainment) will be obtained from within the medical notes by the PI.
A TOC workshop will assemble patients and stakeholders involved in the receipt and
delivery of care of young adults with severe and uncontrolled asthma and will be
facilitated to develop a 'theory-of-change'. The output of the TOC meeting will be a TOC
process map and a detailed report of all discussions.
Statistical analysis Demographic and clinical data will be presented descriptively using
appropriate statistics, including mean (standard deviation), median (interquartile
range), N (percentage), and graphics.
Qualitative data analysis The in-depth 1-1 interviews will be analysed using interpretive
phenomenological analysis, whereas the focus groups will be analysed using thematic
analysis.
Research Ethics Committee (REC) Before the start of the study, a favourable opinion will
be sought from a REC and HRA for the study protocol, informed consent forms and other
relevant patient facing documents.
Patient & Public Involvement This proposed research has been amended and refined over the
last four years with young adults. Within this research the investigators will work with
a Patient and Public engagement officer and Patient Advisory Group (PAG) consisting of
3-5 individuals to advise on many elements of the study.
Dissemination On completion of the study a final study report will be prepared. It is
also intended to publish the results from both work packages in peer reviewed journal's,
be presented at professional conference and submitted as part of a PhD thesis.
A study summary leaflet will be designed for both work packages The thematic content of
the in-depth interviews and participant photographs/pictures (Subject to opting in on the
consent form) will be developed into a short creative media video, outlining the results
in a manner understandable for the lay public. The in-depth interviews and focus groups
combined will also be made into a short media illustration to facilitate easy
understanding by the lay public.