Carer reported experiences: Supporting someone with a rare disease

Area of Science:

• Social Sciences
• Health Sciences
• Patient Care

Background:

• Rare diseases affect a significant number of individuals, placing a unique burden on their family caregivers.
• Understanding the lived experiences of these caregivers is essential for developing targeted support systems.

Purpose of the Study:

• To explore and understand the self-reported experiences of individuals caring for someone with a rare disease.
• To identify key challenges and positive aspects associated with the rare disease caregiver role.

Main Methods:

• An exploratory study utilizing an online survey (November 2019 - January 2020) and a facilitated workshop.
• Participants were adults providing care for individuals with rare diseases.
• Data collected from 57 survey respondents and 32 workshop attendees.

Main Results:

• Caregivers reported challenges including suboptimal healthcare professional interactions and insufficient emotional, psychological, and social support.
• Lack of financial support and limited awareness of existing support services were significant concerns.
• Some positive aspects of the caring role were also noted by participants.

Conclusions:

• There is a critical need for strategies to support the self-care of rare disease caregivers.
• Increased awareness of available support options from health and social care providers, charities, and support groups is necessary.
• Addressing caregiver needs is vital for improving the quality of life for both the caregiver and the person with a rare disease.