Social networks in MS: social participation, support and media
Research type
Research Study
Full title
Social networks in multiple sclerosis: association with mood, cognition, fatigue, social participation, social support and social media use
IRAS ID
338885
Contact name
Jessica Black
Contact email
Sponsor organisation
Royal Holloway, University of London
Clinicaltrials.gov Identifier
No reference number currently., The study will be registered with the named R&D contact at St George’s University Hospitals NHS Foundation Trust as outlined in the Organisation Information Document.
Duration of Study in the UK
0 years, 11 months, 29 days
Research summary
Multiple sclerosis (MS) is a chronic disease which affects the nervous system. It results in a wide variety of symptoms, including impairments in mobility, continence, mental health, memory and concentration (“cognition”) and fatigue. Social networks offer some protection against some of these disabilities. Partly this is because positive lifestyle choices can reduce disease progression (“Brain Health”). Early, small studies have started to explore the social networks of people with MS (PwMS). PwMS tend to have a higher proportion of family in their networks, compared to healthy people. PwMS with fatigue and cognitive difficulties have smaller social networks. It is important to understand the social networks of PwMS, because they potentially offer a self-management technique which can optimise health outcomes.
Our project will measure the size and density of social networks of PwMS and compare them with the social networks of healthy people, in a group larger than in previously published studies. We will ask participants about their perceived social support, social participation in daily life and their social media use. Finally, we will ask participants questions about their symptoms of mood disturbance, fatigue and cognitive impairment to see if any of these factors show associations. The results of the study could be used by health professionals and PwMS to address social networks in disease management. They will also help us design future studies to understand whether social networks influence future health outcomes or are the result of MS symptoms.
Results Summary
Neurological conditions are long-term diseases or injuries which affect the brain and spinal cord. They include stroke, dementia, multiple sclerosis (MS) and traumatic brain injury (TBI). Neurological conditions can lead to a range of symptoms including muscle weakness, pain, fatigue and difficulties with balance. They can also affect thinking skills like problem solving, decision making, language and memory. These thinking skills are called ‘cognition’.
Living with a neurological condition can be difficult with so many medical things to manage. It is therefore important to develop therapies which can help to maximise the wellbeing of people with neurological conditions and support their mental health.
An area of research which could help is social networks. Social networks are our relationships with important people, like friends, family, neighbours and colleagues.
The patient is in the middle and important people in their life are organised around them. The lines show which people in the social network know each other.
For people with neurological conditions, social networks are very important because they provide social support and social interaction which are good for mental health. They also provide opportunities for different types of activity and movement which can be good for physical health and cognition.
Researchers are looking at how social networks could support physical health, mental health and cognition in adults with neurological conditions. If we know how social networks positively influence health, we could help adults with neurological conditions to make specific changes to their relationships, social activities and routines which could help them maintain better health. These recommendations could form a part of their treatment or therapy.
This study aimed to examine the relationships between social networks and health in a group of adults with multiple sclerosis (MS). Social networks were measured using a high-quality method which has also been used in other MS studies. A group of healthy adults were recruited to the study so that comparisons could be made between people with MS (PwMS) and the general population.
The study also aimed to look at whether PwMS’ social media use is relevant to their social networks. Previous studies show that PwMS use social media to make social connections with other PwMS and find support and guidance. Social media could therefore influence how many people are in the social network, or how many people in the social network know each other. This has not been researched in MS before, so the study aimed to test something new.Predictions
• We predicted that PwMS who had poorer health would have smaller social networks containing fewer people. We also predicted they would have higher density social networks containing mostly people who know each other.
• We predicted that PwMS who frequently use social media would have larger social networks containing more people. We also predicted that they would have lower density social networks containing a range of people who don’t know each other.What did we do?
Twenty PwMS were recruited from a London NHS Neurology clinic, charities and therapy centres across Southeast England. Twenty healthy adults were also recruited from the general population through posters and word-of-mouth. All participants completed a face-to-face interview.The interview included:
• A questionnaire about depression and anxiety
• A questionnaire about fatigue
• Three brief cognitive tests. These tests measured cognitive skills that can be affected in MS (information processing speed, visual memory, verbal memory)
• A social network survey measuring network size and density
• A questionnaire about social media useWhat did we find?
The PwMS scored higher on depression, cognitive difficulties and fatigue compared to the healthy adults. Their social networks were smaller, but there were no differences in network density. PwMS also reported lower use of social media.
The study didn’t find any relationships in PwMS between social networks and health. The study also did not find any relationships in PwMS between social networks and social media use. This contradicted what we expected to find.What does this mean?
It is difficult to draw confident conclusions from these findings because the study faced challenges which affected the final results. We were not able to recruit all the participants we needed, meaning the study was low on ‘statistical power’. Statistical power is an issue related to the tests we perform and refers to how likely the study is to find the effects or relationships it expects. Recruiting more participants might have helped us to find what we predicted.
Future researchers will benefit from understanding the challenges we faced in this study. They might be able to repeat the study in a larger group of PwMS or using different questionnaires.
It is important to continue building the research evidence for social networks in people with neurological conditions. This evidence could help us to design new therapies to support patients’ physical, cognitive and mental health.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
24/NW/0161
Date of REC Opinion
8 May 2024
REC opinion
Favourable Opinion