Study Explores Quality of Life Effects of Healthcare Access on Caregivers

Rare Daily Staff

New strategies are needed to better support rare disease caregivers and improve health outcomes for the people for whom they care, according to a new study that looked at the quality of life of caregivers related to accessing healthcare.

The study, published in the Orphanet Journal of Rare Diseases, found that suffer multifaceted effects. These included psychological, physical, and social dimensions with caregivers more likely to suffer from depression and anxiety.

They also found these caregivers often feel physically exhausted and suffer from sleep disturbances, fatigue, loss of appetite, weight loss, headaches, and frequent colds. They also experience social isolation, loneliness, and dissatisfaction, the researchers said.

Though there is growing attention on caregivers of people with rare diseases, there have been limited efforts to look across rare diseases to understand how challenges faced in accessing healthcare services, obtaining a diagnosis and paying for care has on the quality of life of caregivers.

The researchers who authored the study conducted a scoping review and identified and analyzed relevant studies that examined the quality-of-life impacts on caregivers tied to healthcare access.

The study found the severity of a disease, patient’s age, education, gender, and unemployment were all important factors influencing the quality of life of caregivers. The study also identified several “new” factors that influence quality of life of caregivers including sleep quality.

The authors said that if the caregiver lived in the same house as the person for whom they cared, it negatively impacted their quality of life.

Navigating a healthcare system and accessing healthcare was a common source of stress and frustration for caregivers. The researchers found they struggle with lack of information, diagnosis, misdiagnosis, access to services, lack of engagement with healthcare providers and lack of treatment options.

Peer support appears to be a great help in obtaining information about health services and provides emotional support.

The authors said healthcare systems need new strategies to better support caregivers. They said current healthcare systems often leave it up to caregivers to become rare disease experts who must advocate for access to treatment and help.

“This responsibility should not be left in the hands of caregivers but needs to be addressed systematically,” the authors write. “By highlighting the impact of barriers to accessing healthcare services, we wanted to encourage policy makers and care providers to develop new strategies to support caregivers and improve health outcomes.”