Considering the Burden on Family Caregivers

Family caregivers play a key role in palliative care at home. A deeper understanding of the interdependencies among the patients, family caregivers, and service providers reveals that if general practice teams intervene early, they may be more likely meet patients’ needs in the end-of-life care process. The findings of a BMC Palliative study suggest that patient quality of life (QoL) and burden on family caregivers should be considered together.

The aim of this study was to identify correlations between changing patient QoL and changing burden of family caregivers. These correlations provide more insight on better patient management. For example, if patients’ symptoms, such as dyspnoea, and feelings of depression and anxiety are addressed early on, caregiver burden may be eased significantly.

For study purposes, palliative patients with cancer in primary care evaluated their QoL. They were assessed monthly for an interval of 6 months or until death of the patient. Simultaneously, family caregivers reported the burden they perceived while supporting the patient. In a stepwise regression analysis, influences of change in patient QoL on changing caregiver burden were investigated.

The study group included 100 patients: 63 men and 37 women. The average age was 68 years and the most common primary diagnoses were colon, lung, or breast cancer. Data collection took place between September 2007 and June 2009.

Patients reported overall QoL increasing towards end of life. However, their physical functioning deteriorated, and symptoms of pain and fatigue bothered patients the most. While the caregiver burden was moderate and on average did not change over time, the difference in emotional functioning and the difference in dyspnoea showed an influence on the development of caregiver burden.

Conclusion

Most people at the end of life wish to be cared for at home. Family caregivers play an important role in the realization of an effective home care. They support patients by giving them practical help, providing personal care, supporting them psychologically, and often taking care of medication administration. Nevertheless, family caregivers are not just confronted with various challenges related to meeting the care needs of their relative. They also have the burden of dealing with the demands on their own health, family and also job situation.

Palliative care, as defined by the World Health Organization, not only aims to maintain patients’ quality of life, but also to include the support of family caregivers. When a patient who is getting care from home, suffers from dyspnoea, feelings of depression and anxiety, it will invariably add on to the burden of family caregivers.

But these are manageable symptoms. The study highlights the need to regularly assess the patients’ needs while also giving equal weight to caregiver burden too. In this way, general practice teams can intervene early and may more likely meet patients’ needs in the end of life care process.