Page 14 - CamRARE | Unique Feet - Impact Report 2022
P. 14


                                  Family support

         Families outlined the regular support they welcome from being part of Unique Feet.
         Particularly noteworthy is how families come together outside the group’s activities
         through a WhatsApp group and regular lunch meet-ups while the kids are at school.

          Here they can discuss different aspects of bringing up their children.  Several mums
         said they “can text or call families anytime” and conveyed how positive it is to have
         someone to chat with who 'gets it'. Families stated they “WhatsApp several times a
         week” and that this is a great way to stay connected to other parents.

         It is often difficult for parents to find avenues of support for carers. Many have given
         up careers to become full-time carers for their children. Unique Feet offers a network
         for mums, dads and siblings who have similar life experiences and benefits “the whole
         family”. Two families also emphasised the positivity stemming from the group’s
         support. A mother remarked, “everyone cheers each other up”, and that this group
         is a  great place for “giving positivity back to other parents in need”.

                             LOCAL Connections

         Every parent interviewed stated that the local characteristic is what differentiates
         Unique Feet from other disease-specific support networks and sets it apart, Being
         able to do things together and “see each other quite regularly” is incredibly
         beneficial. In disease-specific networks, families live spread out across the country,
         or the world, and meeting in person can be challenging.

         Unique Feet is perceived as an environment where both in-person and local contact,
         as well as sustained online communications, take place. Two parents further said

         they feel safer communicating online with families they know. Being part of a local
         rare disease group makes families feel more comfortable engaging in activities and
         share their experiences.
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