The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Velleman, Crawley et al: Psychological wellbeing & quality-of-life among siblings of paediatric CFS

Discussion in 'Latest ME/CFS Research' started by mango, Nov 4, 2016.

  1. mango

    mango Senior Member

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    Psychological wellbeing and quality-of-life among siblings of paediatric CFS/ME patients: A mixed-methods study

    Velleman S1, Collin SM2, Beasant L2, Crawley E2.

    Author information
    1 Paediatric CFS/ME Service, Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, UK
    2 Centre for Child and Adolescent Health, University of Bristol, UK.

    Clin Child Psychol Psychiatry. 2016 Oct;21(4):618-633. Epub 2015 Sep 22.
    DOI: 10.1177/1359104515602373

    Abstract
    Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a disabling condition known to have a negative impact on all aspects of a child's life. However, little is understood about the impact of CFS/ME on siblings. A total of 34 siblings completed questionnaires measuring depression (Hospital Anxiety and Depression Scale (HADS)), anxiety (HADS and Spence Children's Anxiety Scale (SCAS)) and European Quality-of-life-Youth (EQ-5D-Y). These scores were compared with scores from normative samples.

    Siblings had higher levels of anxiety on the SCAS than adolescents of the same age recruited from a normative sample; however, depression and quality-of-life were similar. Interviews were undertaken with nine siblings of children with CFS/ME who returned questionnaires. Interview data were analysed using a framework approach to thematic analysis.

    Siblings identified restrictions on family life, 'not knowing' and lack of communication as negative impacts on their family, and change of role/focus, emotional reactions and social stigma as negative impacts on themselves. They also described positive communication, social support and extra activities as protective factors.

    Paediatric services should be aware of the impact of CFS/ME on the siblings of children with CFS/ME, understand the importance of assessing paediatric CFS/ME patients within the context of their family and consider providing information for siblings about CFS/ME.


    KEYWORDS:
    CFS/ME; chronic fatigue syndrome; myalgic encephalomyelitis; psychological wellbeing; quality-of-life; siblings

    https://www.ncbi.nlm.nih.gov/pubmed/26395764
     
    Last edited: Nov 4, 2016
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  2. Matthew Jones

    Matthew Jones Senior Member

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    Holy crap how can this be a funding priority? :0
     
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  3. Countrygirl

    Countrygirl Senior Member

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    Oh what a lucrative empire this lady has built for herself!
     
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  4. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    It's a conveyor belt of self-justifying nonsense. They are also trying to produce a lot of papers to offset the fact they have no hard science to back up their beliefs.
     
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  5. Valentijn

    Valentijn Senior Member

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    Quite possibly scores using completely different questionnaires, given Crawley's proclivities in other studies.

    "Higher levels" is Crawley speak for scores not being anywhere near high enough to diagnose actual anxiety.

    I really wish the incompetent British government would stop funding these quacks :p
     
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  6. Cheshire

    Cheshire Senior Member

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    Once again, no adequate comparison group, they should have paralleled those results with those of children with a disabled brother or sister.
     
  7. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Given the UK government's attitude to disability and illness, there's no chance of them cutting funding any time soon.
     
  8. Molly98

    Molly98 Senior Member

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    I should imagine exactly the same results would be found in any sibling of a child who is very ill, particularly when the cause is unknown, treatment non-existent or useless and it has a very limiting effect on family life.

    This is such a null study but not as far as they are concerned because it will now give them a reason to not only treat the Child with ME with CBT but the siblings also to cure their anxiety.
     
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  9. Ritto

    Ritto

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    Are there any rules for citing their own papers? Too foggy to show what I mean but are there Brownie points for the amount of times their papers are cited and does it count if they are citing themselves? I think I may remember that universities like lots of citations.
     
  10. Jan

    Jan Senior Member

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    And just who and their chums have created this 'social stigma'
     
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