Qualitatively exploring the experiences of men with SSc

  • Research type

    Research Study

  • Full title

    A qualitative exploration of the experiences, self-management styles and support needs of men with systemic sclerosis

  • IRAS ID

    170146

  • Contact name

    Caroline Flurey

  • Contact email

    caroline2.flurey@uwe.ac.uk

  • Sponsor organisation

    University of the West of England

  • Duration of Study in the UK

    0 years, 9 months, 10 days

  • Research summary

    Men with Systemic Sclerosis (SSc) have significantly reduced survival rates and report more severe disease than women with the condition. However, to date no studies have focused on the experiences, coping styles and support needs of men with SSc.

    Men cope with stress and illness differently to women. For example, whilst women talk to friends about their worries, men are more likely to manage alone. Men are taught to value traditional masculine ideals (e.g. physical strength, physically active hobbies, physical work, not talking about feelings, nor asking for help). These ideals can be challenged by SSc, which limits physical strength, ability and stamina. Men can therefore find it hard to ask for help if they are struggling to manage their SSc. As there are more female than male SSc patients, current educational support for coping and self-management has been designed for female patients’ needs (e.g. group sessions that include discussing feelings). The researcher’s (CF) previous research suggests that men with rheumatoid arthritis (another rheumatic disease) struggle to manage their condition and don't find support that's currently offered, delivered in a way they wish to access. Thus, men with SSc may have a similar experience of support, but this has not yet been explored.
    Male participants will take part in focus groups to discuss their experiences of living with SSc, how they currently self-manage and the content and style of the support they would like to receive.

  • REC name

    South West - Frenchay Research Ethics Committee

  • REC reference

    19/SW/0074

  • Date of REC Opinion

    23 Apr 2019

  • REC opinion

    Favourable Opinion