The health and economic burden on family caregivers of persons with me/cfs diagnosis: a register data study from Norway

Abstract Background Myalgic encephalomyelitis is an illness that affects the labor capability and need for services among those affected. Interventions and services for comparable illnesses are either inaccessible or ineffective for this group. Partners and parents may take on the caregiver burden, affecting their labor capability and health. Objective This study tested how limited treatment and support options available to persons with myalgic encephalomyelitis is associated to work participation, health, and use of public transfers among partners and parents of those affected. Methods We used administrative data from Norwegian patient registries from 2009 to 2018 on the diagnostic code G93.3, matched with population register income and health data from Statistics Norway. The dataset made it possible to identify a sample of partners and parents of persons with the diagnosis. The data included a control group drawn from the general population. We used optimal pair matching to construct separate datasets for pairs of matched individuals from the control group and the group of G93.3 cases, their mothers, fathers, and male and female partners. Results Having a partner or child with the G93.3 diagnosis contributes to strengthening traditional gender roles. Female family members worked less, and male family members worked more. Whereas female family members more often ended up depending on public transfers, male family members did so less often. All caregiver groups experienced increased personal health problems. Conclusions When tailoring support for the patient group, welfare services should consider how especially female family caregivers may be adversely affected by insufficient or inadequate support.