Reducing Uncertainty Distress in Long Term Health Conditions
Research type
Research Study
Full title
Piloting an intervention using single case design to reduce uncertainty distress in those with long term health conditions.
IRAS ID
293383
Contact name
Sarah Kay
Contact email
Sponsor organisation
Cumbria Northumberland Tyne and Wear NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 31 days
Research summary
Research Summary
Uncertainty is a natural component of chronic illness however perceived uncertainty can be exacerbated by inconsistent and inadequate health related information. Whilst uncertainty is generally experienced as aversive for most people research indicates that some people are more intolerant of uncertainty than others. Intolerance of uncertainty is considered to be a trans-diagnostic source of distress underlying emotional disorders.
High levels of illness uncertainty have been associated with greater emotional distress, mood disturbance, poorer adjustment and reduced quality of life. Uncertainty management interventions have been shown to improve patient knowledge of their condition, improve patient-health professional communications, mood and coping skills. Interventions targeting intolerance of uncertainty have been shown to be effective in a number of emotional disorders and more recently in health conditions including Multiple Sclerosis.
The aim of this research is to develop and pilot a psychological treatment intervention which is able to target perceived illness uncertainty (PIU) and intolerance of uncertainty (IU) in individuals experiencing distress in the context of a long term health condition. To date these approaches have not been combined into a single treatment intervention although the evidence bases from these individual approaches would suggest that combining treatment would lead to superior treatment outcomes for those with long term health conditions.
Between 3 and 6 participants will be recruited from the Psychology in Healthcare department within a hospital setting. Participants will be experiencing distress related to the uncertainty of their diagnosed health condition and willing to engage in a psychological treatment to reduce distress.
Treatment will consist of 16 weekly therapy sessions (dependent upon clinical need) delivered face to face or via video-call. Daily diary measures and other questionnaires will be completed during the course of treatment. With baseline, monitoring and follow up, active participation in the study will be up to 25 weeks.Summary of Results
What was already known?
Living with uncertainty is part of having a long-term illness. This includes not knowing when a flare-up of symptoms might happen, whether the illness will get worse in the future and whether available treatments will be effective. For some people this uncertainty can be difficult to tolerate leading to distress which impacts on day-to-day life. Psychological therapies have been designed to help people with long term illnesses manage the uncertainty they face and have been shown to improve coping and mood. No studies have tested uncertainty management interventions in people living with rheumatic conditions.
What did this study look at?
We aimed to find out whether a new uncertainty management intervention for people with rheumatic conditions could be delivered in a hospital outpatient clinic and whether it would be acceptable to the people receiving and delivering it.
We planned to have 6 people with rheumatic conditions complete the new intervention aimed at helping people cope with the uncertainty of their rheumatic condition. They could have up to 16 sessions either in person or via video call. The therapists had a manual which guided them as to what to include in the therapy sessions.What did we measure?
We asked people to identify their main uncertainty related concerns, and these were rated on a scale of their choosing e.g. ‘I worry about the impact that my illness and medications may have on my health in the future’. These were rated every day throughout the study.
We also asked them to complete a series of questionnaires that measured:
• Mood (Anxiety and depression)
• Intolerance of uncertainty (The tendency to be bothered by uncertain events)
• Illness uncertainty (Uncertainty related to their health condition)The people who took part completed a feedback evaluation form where they could share their experiences of the intervention.
The therapists who delivered the intervention completed checklists for each intervention session to measure which parts of the intervention had been delivered and whether they were able to deliver the intervention as described in the manual.Who took part in the study?
Six people with a range of diagnosed rheumatic conditions took part in the study.
What did we find?
• All six people who volunteered to take part in the study completed the treatment intervention.
• Comments from the evaluation questionnaire were positive. Everyone who took part in the research said that the intervention was helpful although there were differences in which parts each person found the most helpful.
• At the end of the intervention everyone said they had a better understanding of the way that uncertainty related to their health condition impacted on their day to day lives.
• At the end of the intervention some people felt that they could accept uncertainty better in some areas of their lives.
• The session checklists completed by the therapists showed that they were able to deliver all elements of the intervention in a flexible way. The session monitoring forms were a useful way of gathering this information.
• People reported improvements in different areas including their personal statements about uncertainty and mood.What was the main conclusion from the study?
The main conclusion of the study was that the new uncertainty intervention for people with rheumatic conditions appeared to be both feasible to deliver in a hospital setting and acceptable to the people receiving it and the therapists delivering it. It is important to say that this was a small study and the first test of the intervention. There were some early signs that the intervention has the potential to reduce elements of uncertainty distress for people with rheumatic conditions although future research is needed to test this further.
REC name
East of Scotland Research Ethics Service REC 1
REC reference
21/ES/0065
Date of REC Opinion
27 Jul 2021
REC opinion
Further Information Favourable Opinion