Background/Aims Children who have a parent with Motor Neuron Disease (MND) often have carer responsibilities and require extra support from others. MND is also a life-limiting disease and the children require support. Asking the children about their experiences will help healthcare professionals better understand their unique needs and may help facilitate better pre-bereavement support.
Methods Semi-structured interviews were conducted with three children aged 6 to 12 who have a parent with MND. The children were asked about their understanding of MND, what support they receive or would like, and their interactions with peers and healthcare professionals. A thematic analysis of the interviews was performed.
Results Four themes were identified: (1) perception of MND, (2) learning about MND, (3) emotional wellbeing and support, and (4) the role of a carer. The children had a limited understanding of MND, and the children felt excluded from discussions with healthcare professionals around their parent’s illness and treatment. Despite its negative aspects, the children acknowledged that MND allowed the family to spend more time together. Even though the children did not self-identify as carers, they had significant carer responsibilities. They found that this negatively affected their schooling, such as completing homework. Although they felt that MND was poorly understood by their classmates, the children found young carer groups beneficial and were able to meet other young carers and relax.
Conclusion Thematic analysis of interviews with MND patients’ children provided invaluable insight into the children’s experiences and what support would be beneficial. Guidelines should be established around communication between healthcare professionals and children, and actively involving children in the care of their parent would facilitate the family dynamic. Greater advertising of resources for young carers would allow more children to meet other young carers. Children must have an active voice in discussions around their support.
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