Background: As health care provision moves progressively from institutional settings to the community, families are shouldering greater caregiving responsibilities (Carers Australia, 2010). Caregiving can be a 24/7, lifelong ‘occupation’ if living with a family member with a permanent and/or severe physical disability. Despite this, many family caregivers do not have access to the necessary knowledge, skills, equipment, environmental modifications or workload relief (respite) to ‘work’ safely in their home. This places family caregivers at significant risk of physical and psychological ill-health.

Aim: Recently, the Cerebral Palsy League has undertaken a series of studies to investigate the physical and psychological health profiles and risk factors impacting family caregivers.

Method & Results: All studies have involved caregivers of children or adults with cerebral palsy. The first study detailed population-based information on (a) caregiver injury incidence; (b) nature, frequency and progression of injuries and (c) the impact of known risk factors such as characteristics of carers, clients, care intensity and manual handling education and equipment provision. Results showed that physical injury and/or musculoskeletal pain were common and ranged in severity, type and frequency. Most families had access to appropriate equipment, however usage was affected by physical aspects of the home environment and the extent of manual handling education. A subsequent study then audited in more detail the home environments of people with cerebral palsy. Results identified the most frequent residential spaces to require environmental modification. A series of studies then investigated the psychological health of caregivers. These showed that education, support systems and respite are all essential to protect the psychological health of caregivers. A final study has investigated the specific impact of night time caregiving, showing that severity of physical impairment and associated conditions has a significant impact on caregiver sleep quality and psychological wellbeing.

Recommendations: Comprehensive health and safety initiatives, akin to those now commonplace for paid workers, now need to be developed to build health and resilience in unpaid family caregivers.

Acknowledgement: This research program was funded by the Cerebral Palsy League (Queensland, Australia)