The home & caregiving: rethinking space and its meaning

Whether a home is owned or rented, many people love to express their identity using the home as their canvas. One of the many ways in which we do this is in the ability to decorate and organise as we wish and turn the home into something we can be proud of. However, when you are a caregiver for a child with disability, who needs an accessible space, this is not a luxury that has been traditionally afforded. 

An inherent struggle of prioritisation for OT’s working in home modifications, is illuminated in forgoing aesthetics for accessibility. In a study conducted by Mayes, Cant & Clemson (2011), primary caregivers to children with disabilities in Australia were interviewed about how they organised the space in their home. From the interviews with these caregivers (only mothers were included), three main themes were observed which are important for OT’s to be aware of when designing accessible spaces for children with disabilities and their families:

1) primary caregivers made spaces that enabled their family members with a disability so that they could multitask and combine their caring duties with home management activities. This was deemed crucial for the primary caregiver’s occupational performance. For example, their children could do homework on the laundry table while they iron so they can easily help them if required.

2) the primary caregivers also created spaces that excluded their family members with a disability in an attempt to prevent their homes from taking on the appearance of a medical or ‘clinical’ facility. Additionally, they were also able to prevent damage to the furniture and fittings.

3) through the exclusion of family members with a disability, primary caregivers were able to create a personal space for themselves. This is sometimes done unintentionally, as the home layout may not allow for modifications to enable the family member with a disability to access it, and other times it is done deliberately. This personal space creates an escape from the caregiving role, where the caregiver was able to express their self-identity, without having to think about restrictions imposed by their child/children.

As occupational therapists, we are always thinking about our clients and how their access to spaces in their homes may improve their occupational function. However, our claim to family-centred practice should also be guiding us to consider the way the primary caregiver classifies and uses the spaces in their home. By considering tasteful design options, and engaging the primary caregiver in the home modifications process, we will be able to plan functional spaces without the risk of dividing the family home.

Reference:

Mayes R, Cant R, Clemson L. The Home and Caregiving: Rethinking Space and its Meaning. OTJR: Occupation, Participation and Health. 2011;31(1):15-22. doi:10.3928/15394492-20100122-01