Informal caregivers of people with advanced cancer take on an extensive role in meeting the needs of the patient, however they experience significant psychological distress and unmet needs in their role. The literature indicates that there are numerous negative consequences of providing care. Importantly, there are also positive aspects of care provision.
This presentation reports on a study that aimed to develop a new instrument to measure caregiver self-efficacy to better understand the role and experience of caregivers. This study adopted qualitative methodology with seventeen caregivers to generate codes to construct the new questionnaire. The qualitative data indicated that caregivers have a lack of recognition of the caregiving role, they experience a loss of self-identity and they feel unable to take a break from caregiving. Further phase developed and tested the new developed instrument with 94 caregivers. The result was the Caregiver Self-Efficacy Scale (CaSES), which was found to be a reliable and valid measure of caregiver self-efficacy.
However of equal importance is what was learnt about caregivers over the course of this study. Caregivers take on a role that is varied with patient need, however with this can come psychological morbidity, unmet needs and ongoing impact after patient death. This project indicated that care provision extends beyond physical caregiving tasks, also including emotional aspects, such as maintaining a good relationship with the care recipient, keeping family informed, taking a break and providing emotional support. Latest developments in caregiver interventions are presented in the context of these findings, and the next steps for this research will be discussed.