Investigating psycho-social challenges and quality of life within CF
Research type
Research Study
Full title
An investigation into the psycho-social challenges and quality of life in a Cystic Fibrosis population
IRAS ID
255426
Contact name
Anna Regan
Contact email
Sponsor organisation
Birmingham City University
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Research indicates that individuals with Cystic Fibrosis (CF) are living longer than ever before, with the current median survival age at forty-seven years old. However, due to the progressive nature of the condition, for those individuals who do survive into adulthood, CF presents substantial challenges both physically and psychosocially causing a decline in the quality of life.
Despite the advancement in the effectiveness of current CF treatments, the burden of living with CF still exists. Following the severity and complexity of symptoms faced, varying between individuals, as well as the fluctuating nature of the disorder, the psycho-social challenges faced by patients are subject to an individual’s journey. The psycho-social challenges which will be investigated consist of; the management of treatment procedures, employment, family planning, weight control and body image and the presence of mental health conditions. These challenges were informed by both previous literature as well as the examination of online data whereby everyday difficulties discussed by individuals with CF were analysed.
Following an increase in the life expectancy of the CF population, it is evermore essential that the psycho-social care, support and services offered are also developing alongside. Previous research has indicated the benefits of mindfulness and compassion-based practices to aid both psychological and physical challenges across a variety of chronic illnesses. Therefore, there will also be a focus upon patient awareness during a challenge as well as the approach and attitude taken towards this challenge, exploring the role of mindfulness and self-compassion.
This research will conduct semi-structured interviews and aims to explore individual views, attitudes and experiences of living with CF. These methods intend to inform the development of future interventions which aim to improve the quality of life for the adult CF population.REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
19/NW/0362
Date of REC Opinion
24 May 2019
REC opinion
Favourable Opinion