Experiences of Distress and its Screening in Motor Neuron Disease
Research type
Research Study
Full title
Experiences of Distress and its Screening using the Distress Thermometer in Motor Neuron Disease
IRAS ID
281506
Contact name
Rachel King
Contact email
Sponsor organisation
University of Glasgow
Duration of Study in the UK
0 years, 10 months, 30 days
Research summary
Research Summary
Background
The Distress Thermometer (DT) and accompanying Concerns Checklist (CC) are tools which have been shown to be useful for screening distress and supporting health conversations across a range of health conditions (Snowden et al., 2011). Motor Neuron Disease (MND) covers a group of uncommon diseases that affect the brain and nervous system, and involves muscle weakness which continues to become worse over time. People can also experience changes in their cognition, behaviour and communication abilities. It is important that distress is monitored in MND, as needs change quickly and patients have to adapt to a decline in their abilities, an increase in their dependence on others and changes across all domains of their lives (Sakellariou, Boniface & Brown, 2013). Whilst the experience of psychological distress in people with MND is considered to be understandable it remains poorly understood and previous research has not examined how people with MND view the use of the DT as part of their assessment.Patients with MND will be recruited from the NHSA&A MND Clinic (MNDC). Between 6-8 participants will be recruited for this study. MNDC staff will help to identify potential participants. The researcher will prepare a participant information sheet and opt-in form. Interested participants will be invited to send the opt-in form to the researcher or to complete this with a MNDC clinician. The researcher will then contact participants by telephone to arrange a time for interview. Written or verbal informed consent will be given by participants. Semi structured interviews will last between 1 hour – 1 hour and 30 minutes. Interviews will be recorded using a voice recorder and typed up (transcribed) word for word, with all patient identifiable data removed. Recordings will be destroyed upon study completion. Transcribed information will be stored according to NHS A&A Data Protection Policy.
Summary of Results
Background
The Distress Thermometer (DT) and accompanying Concerns Checklist (CC) are tools which have been shown to be useful for screening distress and supporting health conversations across a range of health conditions (Snowden et al., 2011). Motor Neuron Disease (MND) covers a group of uncommon diseases that affect the brain and nervous system, and which involve muscle weakness which continues to become worse over time. People can also experience changes in their cognition, behaviour and communication abilities. It is important that distress is monitored in MND, as needs change quickly and patients have to adapt to a decline in their abilities, an increase in their dependence on others and changes across all domains of their lives (Sakellariou et al., 2013). Whilst the experience of psychological distress in people with MND is considered to be understandable it remains poorly understood and previous research has not examined how people with MND view DT and CC.Aim
This study aimed to explore the lived experience of, and the meanings associated with, distress for people with MND. It is hoped that the results of this study may help to improve the understanding of distress in MND and help us to understand how people with MND experience the use of the DT and CC in screening for distress.Method
A small number of people with MND (n=6) took part in semi-structured interviews. These interviews were then transcribed, and the data was analysed using a technique called Interpretative Phenomenological Analysis.Results
There were six main themes identified from the analysis; 1) diagnosis related distress; 2) support influencing distress; 3) the distress of uncertainty; 4) loss of independence and roles; 5) coping with MND and distress; and 6) views of the MND tool.Conclusions
Participants discussed how difficult it is to deal with ongoing uncertainty and multiple losses experienced in MND. They spoke about the impact that personal and professional support can have on distress. Participants reported coping by focusing on positives of the past and present. Findings highlight the need for person centred care, which can be improved by the use of tools to screen for distress and identify concerns in MND. Recommendations which may increase person centred care and the identification of distress are discussed, such as providing information tailored to individuals; increasing awareness of MND in non-specialist health services; and training healthcare professionals to use the DT and CC.References
Sakellariou, D., Boniface, G., & Brown, P. (2013). Experiences of living with motor Neurone disease: a
review of qualitative research. Disability and Rehabilitation, 35(21), 1765-1773.
Snowden, A., White, C.A., Christie, Z., Murray, E., McGowan, C., & Scott, R. (2011). The clinical utility of the Distress Thermometer: a review. British Journal of Nursing, 20 (4), 220-227.REC name
West of Scotland REC 3
REC reference
20/WS/0157
Date of REC Opinion
3 Dec 2020
REC opinion
Favourable Opinion