START Family Caregiver Experiences Research Published



In celebration of Family Caregiver month, the Center for START Services is pleased to share a recent peer reviewed publication on family caregiver experiences published in the journal Intellectual and Developmental Disabilities. While the article describes caregiving challenges at the time of referral to START Network programs, studies show that START programs help to improve caregiving experiences and mental health outcomes over time. Families are central to our mission of promoting emotional well-being in the people we support. We celebrate families and continue to strive to improve our efforts to engage and collaborate effectively with family caregivers.

Experiences With the Mental Health Service System of Family Caregivers of Individuals With an Intellectual/Developmental Disability Referred to START.
Holingue, C., Kalb, L. G., Klein, A., & Beasley, J. B.

People with IDD frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n = 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received. Notable gaps were in crisis, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions.

Ultimately, findings point to the aims of the START program, including the need for timely access to well-trained mental health providers, greater accountability of the system to meet the needs of families and service users, 24-hour mobile crisis support, strength-based and inclusive approaches, as well as cross systems collaboration and linkages.

Full citation: Holingue, C., Kalb, L. G., Klein, A., & Beasley, J. B. (2020). Experiences With the Mental Health Service System of Family Caregivers of Individuals With an Intellectual/Developmental Disability Referred to START. Intellectual and developmental disabilities, 58(5), 379–392.

Earlier START publications on family caregiver experiences and outcomes associated with START practices: 
Kalb, L.G., Beasley, J., Caoili, A., & Klein, A. (2019). Improvement in mental health outcomes and caregiver service experiences associated with the START program. American Journal of Intellectual and Developmental Disabilities, 124(1), 25-34. DOI: 10.1352/1944-7558-124.1.25
Beasley, J.B. (2002). Trends in coordinated and planned mental health service use by people with dual diagnosis. In J. Jacobson, & R. Fletcher (Eds.) Contemporary Dual Diagnosis: MH/MR Service Models, Volume II: Partial and Supportive Services (pp. 35-51). Kingston, NY: NADD. 
Beasley, J. (2000). Family Caregiving Part III: Family Assessments of Mental Health Service Experiences of Individuals with Mental Retardation in the Northeast Region of Massachusetts from 1994 to 1998. Mental Health Aspects of Developmental Disabilities, 3(3). 
Beasley, J. & Kroll, J. (1999). Family Caregiving Part II: Family Caregiver-Professional Collaboration in Crisis Prevention and Intervention. Mental Health Aspects of Developmental Disabilities, 2(1), 22-26.