Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: a qualitative study (Brigden et al., 2018)

[Tom Kindlon]

Free full text:
https://bmjpaedsopen.bmj.com/content/2/1/e000299

Original article
Using the internet to cope with chronic fatigue syndrome/myalgic encephalomyelitis in adolescence: a qualitative study

1. Amberly Brigden1,
2. Julie Barnett2,
3. Roxanne Morin Parslow1,
4. Lucy Beasant1,
5. Esther Crawley1

Author affiliations
Abstract
Background Adolescents are increasingly using online resources for health purposes. Previous studies suggest that online provision of information about chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is neither balanced nor consistent with evidence-based practice. However, little is known about how adolescents with CFS/ME use the internet for their condition and whether this is helpful or harmful.

Methods Nine indepth, semistructured, qualitative interviews were conducted with young people (aged 12–17) recruited from a specialist paediatric CFS/ME service. Interviews explored the types of online resources accessed, motivations for doing so and how resource use related to patterns of coping.

Results Around the time of diagnosis, participants focused on gathering facts about CFS/ME and therefore used official resources (eg, National Health Service sites) that were considered reliable. This transitioned to exploring patient-led and peer-led spaces: health forums, Facebook and YouTube. Participants accessed these regularly, over the long term, and valued these sites for the personal stories, emotional content and interactive technology. Patient-led and peer-led sites supported coping, encouraging active behavioural management, providing social support and addressing stigmatised aspects of the condition. CFS/ME put a strain on normal adolescent life, such as identity and friendships. Online resources allowed participants to adapt and maintain a sense of normality.

Conclusions Adolescents who use the internet find online resources helpful in seeking information and social support for their condition. Healthcare services should improve their online resources to meet the needs of younger users, providing evidence-based content in ways that are relevant to adolescents and that can meet the needs for social support, as well as providing information.

http://dx.doi.org/10.1136/bmjpo-2018-000299

 

[Tom Kindlon]

What is already known on this topic?

• Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is relatively common and disabling, with significant impact on the individual, family and health services.
  
  
• Adolescents are increasingly going online for health purposes. Online resources can be beneficial in providing social support. However, disadvantages include misleading or inaccurate medical information.
  
  
• Previous studies suggest that online provision of information about CFS/ME is neither balanced nor consistent with evidence-based practice.

What this study hopes to add?

• Participants initially focused on official resources (eg, National Health Service sites) for fact-finding. This transitioned to patient/peer -led, which were accessed regularly and over the long-term.
  
  
• Patient-led/peer-led sites supported coping; they encouraged active behavioural management, provided social support, addressed stigmatised aspects of the condition and helped maintain normal adolescent life.
  
  
• Feeling connected to other adolescents with the condition was important, and online forums addressed this need; accessing such forums complemented treatment with specialist CFS/ME services.
  

 

[Tom Kindlon]

Paediatric CFS/ME affects physical, emotional and cognitive development, disrupting friendships, family, schooling and hobbies at a particularly vulnerable time of life.6–9

 

[Tom Kindlon]

On the other hand, the extent to which adolescents cope with a chronic illness is associated with psychological well-being, health behaviours and health outcomes,16–18 and online resources may enhance coping. The internet provides the opportunity for adolescents to confidentially and conveniently access health information.19 The ability to connect with others with health conditions provides opportunity for self-disclosure, social support, empathy, reduced isolation, sharing of personal experiences and empowerment.20–25

 

[Tom Kindlon]

Adolescents were excluded if they had insufficient proficiency in the English language to participate in an interview or if they were severely affected5 (as we felt there was a risk that the interview might make symptoms worse).

 

[Tom Kindlon]

The interviewer was not previously known to the participant, and was independent of the clinical team that the participant was receiving treatment from.

 

[Tom Kindlon]

Theme 1: using digital resources to meet changing needs
Around the time of diagnosis participants sought out “official” (P5) sites to establish facts about the condition. Participants explicitly talked about an intention to fact-find, with references to carrying out “research” (P5) and “to know more about it” (P2). This was also indicated by the nature of the sites visited; participants talked about their status as “reliable” (P1, P3, P7). For the majority, this included National Health Service (NHS) websites, and in some cases it also included Action for ME, Association of Young People with ME/Chronic Fatigue and the ME Association (CFS/ME charities).

 

[Tom Kindlon]

 

[Tom Kindlon]

Most participants moved on to explore patient-led and peer-led sites containing subjective, experiential accounts.

P3: It was like personal experiences of people who have had the illness, and it was nice to read something from someone like similar to yourself, knowing that goes through the same thing day in and day out.

 

[Esther12]

I skimmed through this, and thought that it read a bit like they wanted to be able to slag off patient sites for promoting misinformation, but the participants were consistently positive about them. [edit: maybe I shouldn't post possibly misleading impressions from a late-night reading].

 

[Tom Kindlon]

In contrast to NHS sites, patient-led/peer-led sites were accessed regularly and over the long-term, such as “a few times a week” (P3) or “every day” (P2). These sites used ingroup terms and phrases which were accessible and appealing. They were considered to offer a greater level of depth and were constantly updated. Participants preferred this story-telling approach, the numerous accounts and the technological affordances of videos.

 

[Tom Kindlon]

 

[adambeyoncelowe]

Interesting that people accessed AfYME materials. Aren't they defunct now?

I'm not surprised that they found patient-led resources better than 'official' ones. Official ones promote CBT and GET, while the others don't.

 

[Tom Kindlon]

Interesting that people accessed AfYME materials. Aren't they defunct now?

Research can take a while to get published.

 

[Andy]

Interesting that people accessed AfYME materials. Aren't they defunct now?

The paper says "Data were collected between May 2015 and July 2016." and AYME was absorbed by AfME in April 2017.

 

[NelliePledge]

Interesting that people accessed AfYME materials. Aren't they defunct now?

I'm not surprised that they found patient-led resources better than 'official' ones. Official ones promote CBT and GET, while the others don't.

Apart from AFMEs

 

[MEMarge]

9 participants! HOW DO THEY GET THESE THINGS PUBLISHED?

(hadn't realised CAPS lock was on, but I think I'll leave it)

At first glance it seems pro ME sites. How will they square this with their advice about limiting total screen time,(including phones)?

This is supposed to be limited to 3hrs a day (Bath) and 4 hrs (UCH). These times were heard at AfME workshop in Nov 2017.

 

[MEMarge]

In addition there are parents on FB site who are being threatened with Social Workers, by the Clinic, because they cannot stop their teens using their phones too much.
Do these people know nothing about youngsters in current society?

 

[Dolphin]

9 participants! HOW DO THEY GET THESE THINGS PUBLISHED

Qualitative research, where you interview people and then transcribe interviews, generally involves small sample sizes. Many/most I’ve read seem in range of 10 to 20 or so.

 

[Tom Kindlon]