Does primary caregiver burden measurement hides a patient?

Aida Puia, Vlad Dascal, Ionela Scridonesi, Bianca Olivia Cojan Minzat, Ioana Cinpoeru, Rodica Sorina Pop

Keywords: caregiver, burden, quality of life, hidden pacient

Background:

The primary caregiver is the person who is close to the patient with a progressive chronic disease in the palliative care stage, unpaid, and actively involved in their care. Caregiving burden is a difficult 'syndrome' to assess, with multiple responsibilities ultimately causing physical, and psycho-emotional distress and affecting their social life.

Research questions:

The main objective of the study is to assess the quality of life of the primary caregiver by measuring the burden of caregiving and assessing their depression and anxiety.

Method:

The research enrolled caregivers over the age of 18 who gave written consent to participate in the research. The evaluation of the subjects was performed monthly for 3 months using the following instruments: Burden Scale for Family, Hospital Anxiety and Depression Scale, and MOS-SF36.
The difference between the mean values of the two variables was analyzed by the chi-square test for independent samples. The Mann-Whitney U test and the Kruskal-Wallis test were used to highlight differences between two and three or more variables, respectively.

Results:

The burden of care increased statistically significantly during the three months, being significantly higher in the group of those who cared for patients with non-oncological conditions (p=0.01). They perceive more strongly the deterioration of their health, the reduction of time for themselves, the standard of living, and the abandonment of plans.
Primary caregivers of cancer patients experience anxiety that increases significantly as the disease progresses (p=0.03)
Depression and anxiety are significantly correlated with the degree of burden (p=0.001).
Pain and decreased vitality are present in caregivers of both subgroups.
Social life is similarly affected regardless of the pathology.

Conclusions:

The main caregiver represents a hidden patient who gradually turns into a real patient prone to somatic and mental ailments.
Assessing caregiver burden can detect decreased quality of life and early symptoms of depression and anxiety.

Points for discussion:

Early signs of burden and the significance of them.

How to communicate with the caregiver to discover the hidden signs of the burden.

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