Chronic disease in young adults, a role for palliative care
Research type
Research Study
Full title
Chronic disease in young adults, a role for palliative care
IRAS ID
133608
Contact name
Natasha Lovell
Contact email
Sponsor organisation
Research Office, King's College Hospital NHS Foundation Trust
Research summary
Background\nThere are increasing numbers of young people with a chronic health problem(2), and in 2009 the leading cause of death for men and women aged 35 and above was chronic disease(3). Chronic disease has been highlighted in the NHS Outcomes Framework (2011) as a priority, and is a focus of the mandate between Government and NHS Commissioning Board (2012)(1). Introducing change in focus of care from active and curative to palliative and supportive treatment is extremely challenging and needs to be addressed sensitively. For young adults this is even harder, many entering new relationships, starting work, or leaving home for the first time. This is the period of their life when they build independence, and the pressures of managing a chronic condition whilst trying to live a ‘normal’ life often results in adjustment issues and denial(4). Identifying appropriate timing for discussions is challenging, and complexities of maintaining hope whilst preparing for end of life at the same time are significant(5).\n\nBenefits\nWe aim to identify palliative care needs of young adults with chronic disease. We will examine: awareness of, attitudes to, and preferences for palliative care services. We have chosen three disease groups which demonstrate complexities of prognosticating with an uncertain disease trajectory, difficulties of managing a high symptom burden, ambiguities surrounding successful transplantation, and difficulties timing appropriate anticipatory care planning discussions (cystic fibrosis, sickle cell disease and renal disease). This will enable us to draw comparisons and identify if needs are disease specific or generalisable. The findings from this research will inform development of interventions to improve outcomes.\n\nDesign\nThis is a qualitative cross-sectional study. In-depth face-to-face interviews will be conducted using a topic guide among a sample of 24-30 participants (8-10 each group). The study will run from King’s College London. Participants will be recruited through the respective specialist clinical teams. \n
REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
13/EE/0253
Date of REC Opinion
9 Sep 2013
REC opinion
Further Information Favourable Opinion