Hidden Disability in Intestinal Failure

• Research type

  Research Study

• Full title

  A qualitative study into the attitudes and experiences of Hidden Disability in patients with Intestinal Failure

• IRAS ID

  340710

• Contact name

  Simon Lal

• Contact email

  simon.lal@nca.nhs.uk

• Sponsor organisation

  Northern Care Alliance NHS Foundation Trust

• Duration of Study in the UK

  0 years, 4 months, 2 days

• Research summary

  Intestinal failure is a rare condition characterized by the inability of the gut to absorb sufficient nutrients and/or fluids and electrolytes to maintain health (Pironi 2016). These patients require parenteral (intravenous) supplementation. Although this is a vital and life-sustaining therapy, quality of life is an important consideration as treatment adds considerable restrictions to everyday life (Sowerbutts 2021) and patients can be on home parenteral support for extended periods, in some cases life-long.

  Although there is research on quality of life in IF patients this has not focused on aspects of hidden disability specifically. We aim to explore common themes and experiences of our patients around hidden disability through qualitative interviews. We hope that this will highlight patient experiences and identify areas in which we can better support our patients.

  Hidden disability (also termed non-visible or invisible disability) is a term used to describe a disability or health condition which is not immediately obvious to others. This can present challenges to patients with these conditions and be a barrier to accessing the support that they need. Support and understanding is often lacking for those with hidden disabilities in comparison to those with more visible impairments (Norman A et al 2022).

  Current literature largely focuses on hidden disability within neurological and psychological conditions and to our knowledge there has not been any research focused on hidden disability within intestinal failure (IF). Many patients with IF describe the positive aspects that parenteral nutrition can bring them as a life-sustaining treatment particularly following extended periods of ill health (Heaney et al 2018). However, there are some common themes and barriers that patients have reported in quality-of-life research including social isolation, physical restrictions, and difficulty with interpersonal relationships (Heaney et al 2018).

  Results Summary
  Aims:To understand the perceptions related to having a hidden disability of individuals living with intestinal failure

  Background: Hidden disability can be a concern for patients with chronic diseases but there are no data for

  Methods: Qualitative methodology –interviews.

  Key findings: Almost all participants experienced instances of having their need for disabled facilities (parking, toilets, etc) challenged by others who perceived them as not looking disabled enough.

  Many participants described a journey towards acceptance with their disability – initially struggling with feelings of shame and keeping their disabilities hidden and evolving to a more confident advocacy for their own needs – as one participant said it best “I use disabled toilets all the time and I feel it's my right. I'm disabled. It's that simple.”

  ·
  Participants commonly described a feeling of “explanatory fatigue” when dealing with healthcare professionals who often did not understand their condition or their experiences and were frustrated that they were often given wrong advice such as being told “just drink more”.

  Participants experienced barriers when disclosing their diagnosis to others, with people expressing surprise or even disbelief given their otherwise “normal appearance” and often lacked understanding on how it affected their daily lives.

  Some suggestions and thoughts from the participants:

  They valued the opportunity to discuss their experiences and issues and would like more opportunities to do so be that in psychology, in the patient forums or elsewhere.

  Several talked about wanting more support navigating things like PIP and benefits with a complex condition and even knowing about things like radar keys, small meal cards earlier.

  Several highlighted the need for more education on IF in other healthcare settings – particularly primary care and A&E/acute medicine.
  

• REC name

  North West - Greater Manchester West Research Ethics Committee

• REC reference

  24/NW/0159

• Date of REC Opinion

  8 May 2024

• REC opinion

  Favourable Opinion