Mental Health Caregivers on Community Inclusion

Up to 8.4 million Americans provide unpaid care to adults with emotional or mental health issues, according to The National Alliance on Caregiving. Caregivers are often family or people closest to the individual. This means caregivers navigate complex support systems, social structures, and relationships and are very aware of the stigma and barriers that they and their loved ones experience.

Their perspectives offer service providers, policy makers, and legislators the opportunity to better understand the experiences of caregivers and insights that could shape policy and practice.

Findings from a recent national study entitled On Pins and Needles: Caregiving for Adults with Mental Illness found that caregivers of adults with mental illness are 88% family members, 45% parents, 14% of adult children caring for parents/ a parent and 11% spouses.

The study also showed marked differences between caregivers of people with mental illness and those providing care for people with other conditions, including:

• length of time care was provided is more than twice as long — 9 years as opposed to 4 years.
• high percentage of care was provided in the home of the caregiver.

To learn more about caregiver perceptions on participation in community life of the people they provide care to, in 2016 the NIDILRR-funded Rehabilitation Research and Training Center on Community Living and Participation of Individuals with Psychiatric Disabilities (TU Collaborative) conducted a survey of almost 500 caregivers of people with mental health conditions.
 
The resulting monograph, Community Inclusion from the Perspective of Caregivers of People with Psychiatric Disabilities provides valuable insights on community inclusion from these caregivers. The also monograph reveals the human spirit of caregivers involved in supporting their loved ones with a mental health condition.
 
In it, caregivers give their views on community participation related to housing, employment, friendships and intimate relationships, educational supports, health and wellness, religion of choice, and recreation and community events. They also express their views on issues related to poverty, transportation, trauma, stigma, and common misperceptions held by schools and employers about the intellectual abilities of people with mental illness.
 
Community Inclusion from the Perspective of Caregivers of People with Psychiatric Disabilities was developed in collaboration between the NIDILRR-funded Rehabilitation Research and Training Center on Community Living and Participation of Individuals with Psychiatric Disabilities (TU Collaborative) and Mental Health America.