Carer reported experiences: Supporting someone with a rare disease

McMullan J, Crowe AL, Downes K, McAneney H, McKnight AJ. 

Carer reported experiences: Supporting someone with a rare disease. 

Health Soc Care Community.  2022;30:1097– 1108. 

https://doi.org/10.1111/hsc.13336

Abstract:

"This exploratory study aimed to gain an understanding of carer reported experiences derived specifically from persons caring for someone with a rare disease. The survey took place online on the SmartSurvey platform from November 2019 to January 2020. The facilitated workshop took place in Bangor Carnegie Library, Northern Ireland. To be eligible to participate in the online survey respondents had to be adults caring for someone with a rare disease. Fifty-seven respondents took part, 15.8% male, 84.2% female. Thirty- two attendees were part of the facilitated workshop. While carers reported several positive aspects of their caring role, the majority of comments highlighted challenges such as sub-optimal interactions with healthcare professionals, insufficient (or absent) emotional, psychological and social support, lack of financial support and lack of awareness of existing support services. It is important that strategies are put in place to ensure that carers are given the time they need to care for themselves, and that awareness is raised of what support options are available for carers of people with a rare disease(s) from health and social care providers, charities or support groups.

What is known about this topic and what this paper adds?

• Caring for someone with a rare disease, both formally and informally, can be an extremely demanding role requiring intense and unique care tailored to each individual's specific needs.
• The impact of caring for someone with a rare disease can be seen in many areas of an individual's life including psychologically, economically, physically and logistically.
• This study provides insight into current challenges, and some requested solutions, based on reported experiences from carers of people with a rare disease in the UK and Ireland.
• The use of an online survey promoted flexibility and accessibility for person's unable to attend the in-person workshop.
• The facilitated workshop enabled carers to network, discussing challenges and potential solutions with their peers."

To conclude my posts for Carers Week I thought I'd share this paper with you. it's one of the most comprehensive reports on carers experiences that I've come across to date. Although first published in May 2021, I only became aware of it a couple of weeks ago. When I read it, I realised that it echoes many of the points that I've highlighted in the 'My Story as an Unpaid Carer' posts. I found it easy to read and there are some clear illustrations to emphasise the key points. The link at the top of this post will take you to the original article which you can read online or alternatively, download a twelve page pdf version. In the event that the link no longer works, here's a link directly to the pdf:

Carer reported experiences: Supporting someone with a rare disease

One of my aims as a Peer Leader is to be a voice for unpaid carers whenever possible and I'll likely make reference to this paper in future if asked to speak again about my role as an unpaid carer. My grateful thanks to the authors and contributors for highlighting the needs of an underrepresented group.