The experience of falls and balance impairment for people with Charcot Marie Tooth disease

People with Charcot Marie Tooth disease (CMT) have impairments of balance and may fall more frequently than those without the condition. This qualitative study aimed to explore the experiences of falling and poor balance through focus group interviews. Participants were recruited through local and national meetings of the CMT United Kingdom support group. Three focus groups took place, including 25 adults with CMT in total. Thematic analysis revealed five main themes: frequent falling; cognitive burden of walking; environmental issues; external support; getting off the floor; perception of others. Participants described the physical issues of poor balance and falling, such as frequency, challenging physical environments and difficulty getting up after a fall. In addition, fear and embarrassment were discussed along with the impact on daily activities and participation. Physical and psychological factors need to be considered when designing falls management interventions for this group.