Eternal

• Research type

  Research Study

• Full title

  eternal: a qualitative study to explore access to healthcare for girls and women with cerebral palsy across the life course

• IRAS ID

  268208

• Contact name

  Julie Taylor

• Contact email

  j.taylor.1@bham.ac.uk

• Sponsor organisation

  University of Birmingham

• Duration of Study in the UK

  1 years, 6 months, 2 days

• Research summary

  As women grow older, CP manifests in different ways, leading to an earlier onset of age-related health issues across biomedical, psychosocial and functional domains compared to women without CP. These include pain, fatigue, functional loss, osteoporosis, fractures, deterioration in mobility, strength and endurance, metabolic syndrome triggered by chronic immobility, cervical spinal change, increased risk of falls and reduced balance. Women with CP may also experience bladder and bowel problems, incontinence during menstruation and specific issues related to their reproductive health including early and severe menopausal symptoms (Tosi et al, 2010; Turk, Overeynder and Janicki, 1995). There is though a gap in knowledge as to how health services are experienced by women with CP and how impairment changes across the life course. From childhood, women with CP have to contend with social, attitudinal and environmental barriers in various aspects of society, including health services. Thus keeping healthy, on par with non-disabled women, is challenging and disabled women are at higher risk of early onset chronic health conditions.

  The aim of this study is to generate qualitative evidence from females with CP across the different stages of the female life-cycle (from menarche to post menopause; age 14-75), and from nurses and midwives to:
  1. Understand the physical, social and psychosocial effects of growing older for women with CP
  2. identify the barriers and enablers to appropriate sexual and reproductive healthcare for girls and women with CP across the female life course (adolescence, adulthood and older life)
  3. identify nurses’ and midwives’ attitudes experiences and knowledge in relation to patients who are teenage girls and adult women with Cerebral Palsy

  The intention of the work is to ensure successful outcomes and social change to advance the SRH for women with CP, which will also improve healthcare outcomes for disabled women in general.

• REC name

  West Midlands - Coventry & Warwickshire Research Ethics Committee

• REC reference

  20/WM/0003

• Date of REC Opinion

  9 Mar 2020

• REC opinion

  Further Information Favourable Opinion