Investigating the impact of COVID-19 on caregivers for those with a rare disease

Research output: Contribution to conferenceAbstractpeer-review


Rare diseases are defined by the European Union as those affecting fewer than 1 in 2,000 individuals, cumulatively affecting 1 in every 17 persons at some point in their lives. 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. In this qualitative study the impact of the coronavirus pandemic on rare disease caregivers was sought via an online survey. This survey forms part of a larger study (IMPaCCt), which aims to Investigate the iMPact of COVID-19 on Caregivers and patienTs.

Respondents (n=165) were recruited by distributing a survey (SurveyMonkey) through social media platforms online, on the QUB team website and by requesting that relevant charitable organisations publicise the study. After completing the introductory questions, caregivers were directed to a survey of 13 questions asking about the impact of the coronavirus pandemic on their caregiving responsibilities. The qualitative survey data was extracted from Survey Monkey platform and was thematically analysed.

Several key themes were identified including the impact on caregiver’s mental health. Several caregivers reported living with intense feelings of fear, anxiousness and worry. Caregivers mentioned their concerns about the potential implications for the patient if they had to be admitted to hospital. Ultimately caregivers were worried that the person they care for would not survive if they contracted COVID19. For many the burden in relation to caregiving had greatly increased during the pandemic and they highlighted the urgent need for support.

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. During the pandemic, this impact has intensified. There is an overwhelming sense that this cohort requires tailored support and respite to enable them to carry out their caring duties. Better communication is essential to combat confusion and to help this group to feel valued.

This study has identified that there is a need for tailored support for caregivers of those with a rare disease during the pandemic. It is vital that this group is not overlooked and that they are given the support they need to carry out this crucial role. This also has implications for respite and support services who should be encouraged to make contact with caregivers, to help them navigate these difficult times.

Original languageEnglish
Publication statusPublished - 17 Nov 2020
EventJoint Public Health Conference 2020: Picking up the Pieces - Public Health and COVID-19 -
Duration: 17 Nov 202017 Nov 2020


ConferenceJoint Public Health Conference 2020
Internet address


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