Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity

This paper reports on a grounded theory interview-based study with 13 family members aged 28-80 years caring for terminally ill people at home (with a life expectancy of 3 months or less) in the Netherlands. The project was approved by the ethics committee of the Maastricht University Hospital. The aim of this study was to explore the experiences of family caregivers, their needs for home care, and which health services they receive. Data were analysed using the constant comparative method. 'Vulnerability' was identified as the core category. Caring for a terminally ill person at home requires continuous balancing between care burden and capacity to cope. Whether or not the carer will succeed in keeping in optimum balance is dependent on a number of factors impinging on the caregiver's vulnerability. Care burden, restricted activities, fear, insecurity, loneliness, facing death, lack of emotional, practical and information-related support were identified from the data as factors having the potential to increase the caregiver's vulnerability, and may be risk factors for fatigue and burnout. Continuing previous activities, hope, keeping control, satisfaction and good support are factors which may decrease the caregiver's vulnerability, and may protect against fatigue and burnout. The experiences of the caregivers in our study showed that the support from informal and professional caregivers was not sufficient. Education and practical tools may make professionals more sensitive for the vulnerable position of family caregivers, even when these caregivers do not show their vulnerability.