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How do families affected by MS manage health information?

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  1. The study in brief
  2. The study in more detail
  3. Information to help you manage MS
  4. Browse more from the latest research

The study in brief

In this study, UK researchers wanted to understand how couples and families affected by MS cope with health information.

The researchers analysed interviews with 77 people affected by MS – 12 people with MS, 49 partners or spouses, 7 parents, 5 children, 2 siblings and 2 friends. 

Interviewees regularly stated that information was critical for living well with MS but at the same time the quantity was seen as overwhelming, time-consuming and, at times, emotionally distressing. 

Couples and families developed their own unique ways of dealing with health information, reflecting family relationships, personal preferences and technical abilities. In most families, one person took the lead.  Differences in attitudes to receiving or sharing health-related information could lead to family tensions.  Information was withheld or modified when it was deemed too upsetting for other members of the family, especially children and older relatives.  

The study shows that when someone is faced with living with a long-term condition like MS, family members and close friends can play a vital role, seeking out, sharing and managing information.  It may be helpful for health professionals to find out who is the key “information worker” within a family, to ensure that they, as well as the person with MS, receive the necessary information.

Managing health information is a significant but demanding aspect of living with MS and should be recognised as such, but the researchers warn against assuming that simply providing more information gives people more power or control over their health care and decisions about treatments. 

The study in more detail

Background

Finding and interpreting health information has become an increasingly important part of living with MS as a result of a growing emphasis on self-management, where people with MS are encouraged to take a pro-active role in managing their own health and sharing decisions about treatments. Previously, studies have looked at how the person with MS manages information about their condition but there has been very little research into the role played by family members and close friends.  In this study, researchers wanted to understand how couples and families affected by MS respond to and manage health-related information within the family unit.

How this study was carried out

The UK researchers analysed interviews with 77 people affected by MS – 12 people with MS, 49 partners or spouses, 7 parents, 5 children, 2 siblings and 2 friends.  The researchers recruited as wide a range of people as possible in terms of age, ethnicity, gender and length of time since diagnosis.  Almost all interviewees were older than 30 years. 

To limit the scope of the analysis, the researchers focussed on health information practices within the family, for example how couples share health information with each other.

What was found?

Interviewees regularly stated that information was critical for living well with MS but at the same time the sheer quantity was perceived as overwhelming, time-consuming and, at times, emotionally distressing. 

Couples and families developed their own unique approaches to dealing with health information, reflecting relationships between family members, personal preferences and technical abilities.

A key finding was that, at any given time, one person (usually either the person with MS or their partner) took primary responsibility for managing the flow of information into, within and beyond the family.  When one member of a couple avoided or ignored information, the other usually compensated by taking on the responsibility for managing it.  Where the person with MS was an avid information seeker, other family members tended to take a back seat, allowing the person with MS to take the lead.

MS was often seen as something a couple or family faced together, and sharing a life with MS often went hand-in-hand with sharing information about it, one partner describing how he and his wife who has MS sat down together and went through news stories about MS with a fine-tooth comb. 

However, this was not always the case and differences in approach to health-related information could result in tensions.  This was especially true where one or more family member (commonly the person with MS) resisted receiving or sharing health-related information.   Other family members felt they had to encourage or sometimes force the resistant person to be more involved. 

Partners sometimes did not feel comfortable requesting information as they were not the person with MS and felt that to do so would be an invasion of privacy; others spoke of disclosing or obtaining information irrespective of the wishes of the person with MS because they felt it was in their best interests and saw it as an aspect of caring.

Some couples controlled the volume of information by agreeing to be selective, perhaps restricting themselves to one aspect of life, a particular website or support network (such as a Facebook group), or a trusted heath professional.  Changes in the course of MS or lifestyle triggered more information seeking which then tapered off until the next trigger.  Interviewees described numerous instances when they had withheld or modified information they felt could be upsetting for other members of the family, especially children and older relatives. 

Access to online resources, such as the internet, social media and patient forums, were seen as both good and bad; while they enabled access to information, support from other people with MS and news about medical research, they were also viewed as potentially spreading misinformation, time-consuming and dependent on technical skills. 

What does it mean?

This study shows that when somebody is faced with living with a long-term condition like MS, family members and close friends can play a vital role, seeking out, sharing and managing information. 

Couples and families develop their own unique approach to dealing with health information, so it’s important that a variety of options and services are available which people can access when it is needed.  It may be helpful for health professionals to find out who is the key “information worker” within a family, to ensure that they, as well as the person with MS, receives the necessary information.

Managing health information is a significant but demanding aspect of living with MS and should be recognised as such, but the researchers warn against assuming that simply providing more information gives people more power or control over their health care and decisions about treatments. 

Mazanderani F, Hughes N, Hardy C, et al.
Health information work and the enactment of care in couples and families affected by multiple sclerosis.
Sociology of Health & Illness 2019; 41: 395-410.
Summary 

Information to help you manage MS

MS is a complex condition that affects everyone differently. You’re the best person to know what helps you on a day to day basis – we want to give you the resources and information to enable you to do that, and to live well with your MS.

With a long-term condition like MS, you may see health professionals more or less frequently, but MS is with you all year round. Self-management, to us, means all the things that you can do for yourself in between visits to your neurologist, doctors or nurses.

If you have any questions and would like to speak to someone, please contact our Information Service on 0800 032 38 39 or email ask@mstrust.org.uk

We are here to support you. We can answer your questions about multiple sclerosis and life with the condition. You may have MS yourself or be a friend or family member of someone with the condition. 

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