April Anderson-Vizcaya

California State University Long Beach

May 2012

Introduction In 2010 there were 157,968 individuals who utilized a state hospital

for psychiatric services and another 385,299 individuals who used other types of services.

There were 4,523,720 individuals who were diagnosed with SMI in 2010. (SAMSHA, 2010).

Family members who provide care to individuals with severe mental illness (SMI) experience high levels of burden and often do not receive appropriate and sufficient assistance from professionals (Saunders, 2003).

Purpose of this study was to explore the research questions: 1). What challenges do family members face when they care for a relative

with a severe mental illness? 2). What strategies help family members cope with the stress of caring

for a relative with a severe mental illness? 3). What support services are helpful to families of persons with severe

mental illness?

Social Work Relevance Family members who provide care to individuals

with severe mental illness (SMI) often experience high levels of burden, often do not receive appropriate and sufficient assistance from professionals, and report that providing care as a life long effort (Perjlert, 2001; Saunders, 2003). Consequently, it is imperative that social workers

offer support not only to individuals diagnosed with SMI but their family members providing care as well.

This study provides research-support information on the education and resources needed to assist families in caring for members diagnosed with SMI.

Cross-Cultural Relevance

Severe Mental Illness affects all individuals, regardless of ethnicity, culture, gender, or age and the weight of caregiving for those with SMI has shifted from state institutions to families. Those families from ethnically diverse minority communities face different challenges even within this group of caregivers (Kokanovic, Petersen, & Klimidis, 2006). Families from ethnically diverse minority communities are often from

low socioeconomic backgrounds and sectors of the community and have difficulties with language, discrimination, and acquiring quality services (Kokanovic et al. 2006). ○ These families may need more assistance in navigating the mental health

care system in obtaining services for the family member diagnosed with SMI and for care providers.

Methods Sample/sampling method

The sample consisted of 10 participants

○ The sample was recruited from the National Association on Mental Illnesses

support and educational groups and individuals personally known to the

researcher.

○ All study participants were of the age of 18 and actively involved in caring

for a family member diagnosed with a Severe Mental Illness for at least 1

year.

Data collection

All participants signed a consent form to participate in the study and

have the study audio taped

7 participants chose to be interviewed over the phone and 3

participants chose to be interviewed in person

All audio tape recordings were destroyed once transcribed

Methods Continued Instrument

A semi-structured interview guide, developed by the researcher, was used for each interview

○ Consisted of 13 open-ended questions divided into 4 sections: background, challenges for caring for relative with SMI, strategies used to cope with challenges, and supports needed. Demographic information was also collected.

Data analysisThe researcher independently analyzed the content from

all interview questions.

Content analysis comprised of identifying patterns, themes, and trends for each focus area.

Results Demographics (n = 12)

70% female – 30% male

Age range: 46 to over 72 – average age 60.3

Ethnicity: 50% Caucasian – 30% African American – 10% Latino – 10% Asian

Relationship to family member: 70% Parent – 20% Sibling – 10% Significant Other/Spouse

Challenges of Caring for a Family Member with SMI

80% of the participants indicated that caregiving had a negative impact on their lives.

50% of the participants reported emotional challenges as a result of caring for a family member with SMI.

40% of the participants indicated adequate access to resources for their family member and themselves as a challenge of providing care.

Coping Strategies

80% of the participants reported using the National Alliance on Mental Illness (NAMI) Family Support and Education groups to cope with caregiving.

Results Continued Needed resources

50% of the participants reported that there was a need for additional services that included housing, employment, extended qualifications, programs to accept a variety of funding, individual therapy, and support groups specifically for younger individuals diagnosed with SMI.

40% of the participants indicated that services for caregivers such as counseling would be beneficial.

Information for other family members 50% of the participants reported they would inform family members

experiencing mental illness in their family about NAMI.

Gains achieved 40% of the participants reported that learning to be patient is an

important component of caregiving.

Discussion/Implications for Social Work The findings from this study suggest that providing care for a

family member diagnosed with SMI is a complex and challenging experience. Consequently, social workers should offer support not only to individuals diagnosed with SMI but their family members providing care as well.

Social workers can play a vital role in linking family members to effective community resources by educating themselves on available resources, advocating for lacking services, and adding to the research knowledge. Social workers can also provide essential coping skills training for family members providing care as well as for the individual diagnosed with SMI.

Despite this study’s limitations, it provides social work professionals with some guidance on development and implementation of interventions when they are working with caregivers of individuals diagnosed with SMI.

ReferencesKokanovic, R., Petersen, A, & Klimidis, S. (2006). Nobody can help

me…I am living through it alone: Experiences of caring for people diagnosed with mental illness in ethno-cultural and linguistic minority communities. Journal of Immigrant and Minority Health, 8(2), 125-135.

Pejlert, A. (2001). Being a parent of an adult son or daughter with severe mental illness receiving professional care: Parents’ narratives. Health and Social Care in the Community, 9(4), 194-204.

Saunders, J. (2003). Families living with severe mental illness: A literature review. Issues in Mental Health Nursing, 24, 175-198.

Substance Abuse and Mental Health Service Administration. (2010). California 2010 mental health national outcome measures (CMHS) uniform reporting system. Retrieved from http://www.samhsa.gov/dataoutcoes/urs/2010/california.pdf