The use of an online support group for neuromuscular disorders: a thematic analysis of message postings

Abstract

Purpose: People affected by neuromuscular disorders can experience adverse psychosocial consequences and difficulties accessing information and support. Online support groups provide new opportunities for peer support. The aim of this study was to understand how contributors used the message board function of a newly available neuromuscular disorders online support group.

Methods: Message postings (n = 1951) from the first five months of the message board of a newly formed online support group for neuromuscular disorders hosted by a charitable organization were analyzed using inductive thematic analysis.

Results: Members created a sense of community through disclosing personal information, connecting with people with similar illness experiences or interests, welcoming others and sharing aspirations for the development of a resourceful community. Experiences, emotional reactions and support were shared in relation to: delayed diagnosis; symptom interpretation; illness management and progression; the isolating impact of rare disorders; and the influence of social and political factors on illness experiences.

Conclusions: This study provided a novel insight into individuals’ experiences of accessing a newly available online support group for rare conditions hosted by a charitable organization. The findings highlight how the online support group provided an important peer support environment for members to connect with others, exchange information and support and engender discussion on political and social issues unique to living with often-rare neuromuscular disorders. Online support groups may therefore provide an important and easily accessible support outlet for people with neuromuscular disorders as well as a platform for empowering members to raise awareness about the impact of living with these conditions. Further research is needed to examine member motivations for using such groups and any effects of participation in greater detail.

Implications for rehabilitation

• Online support groups may provide a unique forum for information sharing and peer support between people affected by often rare, neuromuscular conditions.

• Rehabilitation professionals may wish to signpost those affected by neuromuscular disorders to such groups. An advantage is that these groups are freely available and can be accessed from anywhere and at any time.

• Members may be able to learn about the diagnosis and symptom experiences of others, discuss coping strategies, validate illness experiences and discuss social and political issues relating to living with these conditions.

• Further research is needed before researchers and clinicians can fully understand participants’ motivations for, and experiences of, using such groups and any potential psychosocial benefits.

Keywords:

• Online forum
• peer support
• member interactions
• qualitative analysis
• NMDs
• rare illness

Notes

Disclosure statement

This study was funded by a PhD studentship awarded to the first author by the University of Nottingham.

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Notes

1 PM is shorthand for private message, which members could use to communicate privately with one another.

2 CS stands for Community Services.

3 O.T.’s refers to Occupational Therapists.

4 GP refers to General Practitioner.

5 DLA is an acronym for Disability Living Allowance.

6 A Blue Badge refers to a U.K. based parking scheme which allows people with mobility problems to park in restricted parking areas. Motability is a scheme which allows people with a disability to lease a car, powered wheelchair or scooter using a Government-funded mobility allowance.

7 MD refers to Muscular Dystrophy.

8 “Blower” is a colloquial term for telephone.

9 Mr Osborne refers to George Osborne who was the Chancellor of the Exchequer of the U.K. Government at the time the messages were posted.

10 PCT is an acronym for Primary Care Trust.

11 M.P. refers to a Member of Parliament within the U.K. Government.

Additional information

Funding

This study was funded by a PhD studentship awarded to the first author by the University of Nottingham.