Challenges to Seeking Appropriate Support for Unmet Needs in Neurological Disorders

Woman frustrated from thinkingThis summary of a refereed journal article was written at the request of the HF Patient Advisory and Advocacy Council (PAAC) because of its relevance to those with hypersomnias. The findings of the Australian-based study that is the basis for the article emphasize a reality faced when seeking treatment for emotional and cognitive difficulties. The inability of those with neurological disorders to find appropriate clinical resources and services has led to high interest in online, self-care interventions.

The article, Emotional and Cognitive Difficulties, Help-Seeking, and Barriers to Treatment in Neurological Disorders (Gandy, et al, 2018), examined the mental health status and psychological treatment patterns in over 2000 Australian adults with a variety of neurological conditions, including epilepsy, multiple sclerosis, stroke, and traumatic brain injury. The key findings of this study, conducted through an online survey from September 2015 to November 2016, are as follows: 1) There were high levels of emotional distress, as well as depression and disability; 2) Cognitive difficulties were reported, including issues with attention, concentration, memory, and planning.

  • Although many respondents with neurological conditions were seeking treatment for emotional and cognitive difficulties, over 70% reported barriers to care, such as lack of resources to obtain treatment or lack of available services.
    • Barriers also included one’s own attitude towards their condition, such as thinking their symptoms could not be changed or perhaps were not severe enough for treatment.
  • There was a high level of interest in using a hypothetical online 8-week skills course to address emotional and cognitive difficulties.

Overall, these findings highlight that despite a large portion of respondents having clinically significant neurological, emotional, and cognitive symptoms, many felt they were unable to find appropriate support, leading to a high interest in online self-care. Emerging online self-management interventions could address some of the barriers to psychological care.

This article is relevant to people with hypersomnias because:

  • Idiopathic hypersomnia, narcolepsy, and other hypersomnias are also chronic neurological conditions, and many people with hypersomnias may have similar emotional and cognitive struggles.
  • Some people with hypersomnias report challenges in seeking psychological treatment, especially treatments that address both emotional and cognitive difficulties.
  • People with hypersomnias might also benefit from online interventions addressing these unmet psychological, emotional, and cognitive needs.

Source: Gandy, M., Eyal, K., Fogliati, S.M., Nielssen, N.T., & Dear, B.F. (2018). Emotional and Cognitive Difficulties, Help-Seeking, and Barriers to Treatment in Neurological Disorders. Rehabilitation Psychology, 63 (4), 63-574.

Note:  Dr. Jason Ong, a Member of the HF Medical Advisory Board, with the assistance of PAAC members, wrote the summary. It was approved by the PAAC on June 8, 2020.

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