Disability and rehabilitation · 2026
The experiences of being a young carer to a parent with Huntington's disease: a thematic synthesis.
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Pares Lewis, Eccles Fiona, Dale Maria, Simpson Jane
Аннотация
PURPOSE: This thematic synthesis explored the experiences of being a young carer to a parent with Huntington's disease.
METHODS: A systematic search strategy was utilised across eight databases, resulting in 13 papers that met the inclusion criteria. Thomas and Harden's thematic synthesis approach was used to guide the methodological decisions and analyse the data.
RESULTS: The analysis resulted in three themes (1) Lack of awareness, undervalued and unsupported: barriers to young carers accessing support (2) Adult responsibilities: impact on developmental stages and worries about the future, (3) Engaging with the future or living in the present: managing the impact of being a young carer while at risk of HD.
CONCLUSIONS: The experiences of young carers to a parent with HD share some similarities with other young carers to a parent with chronic illness. However, a key difference is the constant reminder of their possibility of inheriting the HD gene and the effects of this on their lives. This makes it difficult for them to envision a future beyond being a young carer.
METHODS: A systematic search strategy was utilised across eight databases, resulting in 13 papers that met the inclusion criteria. Thomas and Harden's thematic synthesis approach was used to guide the methodological decisions and analyse the data.
RESULTS: The analysis resulted in three themes (1) Lack of awareness, undervalued and unsupported: barriers to young carers accessing support (2) Adult responsibilities: impact on developmental stages and worries about the future, (3) Engaging with the future or living in the present: managing the impact of being a young carer while at risk of HD.
CONCLUSIONS: The experiences of young carers to a parent with HD share some similarities with other young carers to a parent with chronic illness. However, a key difference is the constant reminder of their possibility of inheriting the HD gene and the effects of this on their lives. This makes it difficult for them to envision a future beyond being a young carer.