Impact of wheelchair provision upon parent caregivers: A qualitative study

With advances in wheelchair design, clinical prescription and improved access to services, it would be reasonable to expect that provision would be positive for both the wheelchair user and their caregiver. Wheelchair use enables the wheelchair user to independently access their environment, socialise, and participate in a range of activities. Much of the research investigating the use of wheelchairs by children has focused on wheelchair design and configuration; propulsion techniques; wheelchair skills development; and outcome measures. However, with the introduction of the International Classification of Function, Disability and Health (ICF), greater emphasis is now placed upon how the wheelchair can enable the child user to engage and participate in everyday activities. Children dependent upon a wheelchair to mobilise are often reliant on support from, and facilitation by their parent caregivers. This can result in caregivers finding that their lives revolve around the needs of their child. Researchers have found that caregiving for children with complex health needs can place both physical and emotional demands upon the parent caregiver, and can result in greater levels of stress for these parents than for parents whose child does not have a disability. Presently very little is known regarding the impact on health, wellbeing and occupation of parent caregivers of physically disabled children who use wheelchairs. It has been hypothesised that the provision of assistive technology such as a wheelchair should reduce the stress and burden upon parent caregivers. Due to the paucity of empirical literature, we undertook a qualitative study interviewing ten parent caregivers aiming to gain a deeper understanding of the lived experience of caregiving for these children from the parent perspective. Amongst the ten parent caregivers there was a definite sense of acceptance and having embraced the caregiving role as their sense of purpose and being. Nevertheless, it was often at the expense of them being able to engage in paid employment, or having friends outside of the ‘disabled world,’ or personal relaxation time. They frequently experienced stress and time pressures when advocating for and following up on their child's wheelchair provision; reporting disrupted sleep, emotional stress and physical strain. They spent most of their time meeting the needs of this child, completing caregiving activities, therapeutic exercises, administering medications, or following up on equipment; and with most not availing of any external care support to share the task of caregiving. Further, parent caregivers expressed the need for accurate wheelchair prescription, meeting the current needs of the child yet allowing for growth or change in their child's condition. They also strongly emphasised the need for timely provision. This study highlighted the need for clinicians to support parents in their roles outside of caregiving, and to ensure that access to all assistive technologies is a positive addition to their lives. © 2017 Nova Science Publishers, Inc.