Caregivers of children with rare diseases: experiences and needs in a Canadian population
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Date
2024-08-26
Authors
Truong, Vivien
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Abstract
Rare diseases (RDs) affect 2.5 million Canadians, often starting in childhood. Due to medical complexities and limited disease knowledge, many children with RDs are known to face a lengthy diagnostic odyssey. Previous research highlights the need for social connection to other RD families, informational resources, and psychosocial support among parents and caregivers of children with RDs. Our study aims to fill a knowledge gap by examining Canadian RD caregivers’ experiences, preferences, and informational and support-seeking behaviours of Canadian RD caregivers, and how these outcomes and are correlated with various demographic factors.
We analyzed a total of 95 eligible survey responses from eligible Canadian caregivers. Over half of caregivers received a diagnosis for their child within the first year of medical investigations, and a similar proportion believed the diagnosis could have been made earlier. Overall, caregivers had positive perceptions of their interactions with their child’s genetics healthcare provider (gHCPs). These perceptions were significantly associated with caregiver income, education, and type of condition that was diagnosed. Caregivers primarily relied on internet webpages, support groups, and personal networks for informational and emotional support. However, these preferences varied based on a variety of demographic factors. Notably, caregivers’ perceived level of emotional support did not improve after obtaining a diagnosis for their child, and a minority of caregivers were offered counselling, emotional support, or recommendations of support groups/RD organizations.
This study quantitatively examines Canadian RD caregivers’ experiences, including their diagnostic journey, interactions with gHCPs, and their informational and support seeking behaviours. Our findings suggest that caregivers require additional psychosocial support particularly at the time of their child’s diagnosis and in the period following obtaining their diagnosis. The varied use of informational and emotional supports based on demographic factors and factors related to the diagnosis itself underscores the need for patient-centred care by healthcare providers. Overall, the findings of this study contribute to the current understanding of RD caregiver experiences in Canada and shed insight on opportunities for improving care for members of the RD community.
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Keywords
rare disease, caregivers, genetic disease, child health, genetic testing, genetic counselling, patient experience, support needs, informational needs, healthcare provider communication